Apples and Autobots

To You It's Just A Social Studies Fair, But To Him....

2012-02-11T12:15:00.000-06:00

Parenting a child with autism is a study in extremes. Their emotional reactions, their habits and behaviors....they don't do anything half way. A child with Aspergers or mild autism can be so like a typical child, and yet so different. One of the things that kids across the spectrum tend to have in common is a driven and intense interest in a particular topic. This intense fascination goes above and beyond what typical peers exhibit. Often these interests are obscure and unusual, such as elevators, maps, schedules, etc. We have been fortunate that Eli's intense interests are not so unusual as to set him apart from peers. The problem is that with most kids, their hobbies and interests are just that--hobbies and interests. For a kid on the spectrum, their intense interest is their whole life. Everything revolves around it. So much so that almost every book about parenting a kid with autism tells you that your best bet is to find a career that incorporates their special interest. But if your kid is crazy about something, shall we say, unique--you're pretty much screwed.

Eli's special interest is Transformers.

There aren't a whole lot of jobs available for Transformers experts.

Eli's interest in Transformers makes some aspects of life easy. No one ever has to wonder what to get him for Christmas or his birthday. His ability to recall Transformers trivia is amazing. We've used it to get him to read (he found the biography of Shia LaBeouf riveting). He'll happily tell you why Megan Fox was better in her role than the new girl (note the disdain in the italics). He can tell you who directed and produced each movie. He knows Every. Single. Detail. about Every. Single. Character. He reads Transformers comic books. He makes Transformers masks when he's supposed to be doing his Art assignments. He knows the difference between all of the different comic book series. Transformers are his life.

This week, Eli's interest in Transformers led him to a Social Studies project on Pearl Harbor that was so good, he was chosen to advance to the next level of competition: the school wide competition. How? Follow along.

Eli didn't suddenly wake up one morning fascinated with alien robots. His first interest was super heroes. We were amused by our three-year-olds love of heroes and villains, and Joe made sure to always remind Eli that policemen, firemen, and military men and women are real life heroes. (Kids on the spectrum can have difficulty distinguishing fantasy from reality, so we were constantly explaining what is real and what isn't.) When Eli fell in love with Transformers, he saw the movies. He saw the military involvement in the movies. His love of the military was reinforced. Eli loves battles. He loves to analyze the strengths and weaknesses of various Transformers to see who would win a battle between them. He likes to plan out these elaborate Transformer clashes. So, when he had to choose a topic for the Social Studies Fair, he selected the most fierce sounding clash on the list--World War II. Apparently, he had heard of Pearl Harbor somewhere, because when I told him that we would need to narrow down his topic to one battle, Pearl Harbor was his immediate reply.

I dreaded the work of the assignment. This was a big project, and I thought I'd have to push him every step of the way. He shocked me with his eagerness. He wanted to know everything. Why did Japan attack? How were the ships positioned in the Harbor. Why did so many of them get sunk? What weapons did Japan use? Why did they choose Pearl Harbor as their target? He analyzed everything. He did most of the research on his own. He Googled. He found a library book. He watched the battle scene of the movie. I was amazed. He never mentioned a Transformers connection, but I'll bet he's secretly figured out that if Optimus Prime had been there, things would've been different.

On the day of his presentation, Eli was confident. He blew his teacher and classmates away with his knowledge. I didn't expect him to go beyond his classroom presentation. But yesterday, after school, he drug me down the hall to hear from the teacher herself that he had been selected to represent his class at the school fair. His pride in his accomplishment makes me want to cry even now. This is the first big success he's ever felt in school. He kept saying, "I am smart!" He is so proud of himself.

To some kids, it's just a project. For Eli, it means confidence. Self esteem. Self worth. It means that school isn't beyond his abilities. It means that he is good at something. He will never forget this success. Neither will I. Over the course of this project, he even mentioned something about joining the military one day. Sadly, that won't be possible for Eli. I actually looked into it, and from what I found, you have to be off of medication and not receiving accommodations for a year before the military will accept someone with AS. Of course, it's possible that some time in the next 8 years, the military will realize what an asset someone with Asperger's could be. I don't know. However, this has awakened good things in Eli.

And just think--it started with Transformers.

Christmas, Age 8

Transformer Costume, age 6

Teaching new baby brother about Transformers--you're never too young!

I Prefer Different

2012-02-05T08:38:00.001-06:00

I went to a baby shower last weekend. R's mom is having twins! Eli is determined to teach R all about how to be a big brother (those poor baby girls! LOL). Anyway, the shower was a nice break for me. The only person I knew was the mom-to-be, but it was really nice to just sit and visit with ladies about babies.

I usually feel a disconnect with other mothers. When I'm with other autism moms, we usually end up talking about autism, which is fine, but it's also heavy. Besides, my two oldest are on the milder end of the spectrum, so I don't have the same take on things as a lot of them. The exception to that is Lacy (R's mom). We have plenty in common, and her having twins makes me really excited for her. Unfortunately, now that she's off of work, I don't really see her much anymore.

With typical moms, you'd think I'd be able to converse with anyone since my kids span a large age bracket--upper elementary, almost kindergarden, and toddler--but there's a huge gap. The playing field is too uneven for me to feel comfortable. I end up spending the whole conversation with this snarky inner dialogue--Really? THAT's your biggest problem? Or, Little Johnny was just potty trained? Well, Noah said "milk" yesterday! Little Susie wants to wear makeup? Wow! Lauren has decided she's going to adopt because she doesn't want to risk having a child with autism! They grow up so fast!

At first, I felt awkward. There were a couple of newbies there--first time moms. One in particular, was very proud of her 19-month-old. She talked incessantly about his "achievements," including how he was talking so much that his daycare moved him to the next class up so that he could socialize. She had him with her at the shower. He was cute.

I was resentful. It's hard not to be. I think it's because I'm still in the thick of it with Noah. I don't feel resentful of typical older kids. I've moved past that stage with Eli and Lela. That's the weird thing about having more than one kid on the spectrum. You grieve each diagnosis separately. It does get easier, but you still experience the same range of emotions with each child.

This little boy talked more than Noah.

He played appropriately with toys.

He didn't flap, finger flick, squeal, or spin.

He was calm. He didn't jump. He didn't bang things together or throw things. He was......boring.

I found myself looking towards R's room, hoping he would come back out and show me another bug thingie that jumped and did other cool stuff. It's true. The typical toddler was dull.

As the shower progressed, my envy disappeared and gave way to....dare I say it--sympathy. You see, there's a lot that this little boy did that Noah doesn't. But I wouldn't want to trade. If this kid was an example of a typical toddler, then I don't want one. Noah is fun. He's loud. He's completely nuts. He keeps us on our toes..and we enjoy every minute of it.

I could've joined in the fray. Noah can count to 10--forwards AND backwards. Noah recognizes almost every letter of the alphabet. Noah might be able to add--either that or he's a REALLY good guesser. He's not social, but I think I prefer my quirky little genius. Here's a video of Noah being..... Noah.

The Idiot Evaluator

2012-01-29T09:44:00.001-06:00

For those who don't know, when your child is in Early Steps, they get re-evaluated once a year to determine whether or not they still qualify for services. Early Steps has been really great for Noah. He gets speech therapy in our home, and we haven't had to pay a dime out of pocket. We have a Family Services Coordinator who contacts us every couple of months to answer questions and make sure we are satisfied with our therapist, and Early Steps facilitates the transition into the school system. In fact, we've already received our letter from the school board indicating that by six months before his third birthday, the district will evaluate Noah and determine whether or not he qualifies to enter the school district's program.

As we approached this year's eval, our FSC told us that we could request an autism evaluation. She said that someone from LSU would come out and evaluate Noah in our home. We were like, "Great!" An autism evaluation is extremely expensive. Lela and Eli's evaluations cost us roughly $2000.00 EACH out of pocket, and our insurance company reimbursed us about 40%. I guess that counts as "covering" autism, right? So, we were more than happy to let the state do it for free.

On the day of Noah's evaluation, the lady who came to our house was the same one who originally evaluated Noah for Early Steps. I don't know what her qualifications are, but she certainly didn't know much about autism. As we went through the screening, she informed me that since Noah says lots of single words, that he likely won't continue to qualify for Early Steps. "I have lots of two year olds who don't say anything!" she said. She even threw in the phrase "especially boys." Really? Now I'm sure that that's true, but Noah's been in therapy for almost a year, so you can't compare him to boys that are going through initial eval. Also, I don't care about other boys, just MY boy.

Anyway, I explained our concerns to her. We did the MCHAT checklist, and another list I'd never heard of. She didn't understand the second checklist, and she kept saying things like, "I guess that's what they're talking about, right?" Very disappointing.

The evaluator indicated that she wouldn't have suggested an autism evaluation if she'd just walked in and seen Noah. I guess she was basing that on her vast "experience." Oh, and the fact that Noah was interested in her. I didn't really need to respond to this. You see, I know Noah. Noah's interest in this woman was an interest in the novelty of a new person. Noah's a weird little guy. He LOVES men. We don't know why, but he'll go to any man. With women, he usually cries or refuses to look at them if they approach him. However, if he's not too overwhelmed by many strangers, or if he's in a familiar environment, he will approach a woman on his own terms. This interest is purely academic in nature, however. Once he's familiar with a woman, his curiosity is satisfied, and he'll ignore her. My mother-in-law and I are basically the only women who interest him beyond initial curiosity. All others, including his aunts and usually my mom, get the cold shoulder.

Once the evaluator had finished questioning me, she started her evaluation. It took all of five minutes for her to say, "Oh. I'm starting to see what you mean." He screamed at every activity transition, lost all interest in her, and she was able to see that, although he does have words, he doesn't use them to communicate. So, hopefully he'll still qualify for services. Oh, and that "evaluation" that was mentioned? Early Steps doesn't do that. They just tell you whether or not a child is "at risk." Then, you take that information to a doctor for a full eval. So, all of those questionnaires were a waste of time. We already know that Noah's at risk. He would be considered high risk even if he wasn't showing signs, simply because he has two siblings on the spectrum.

This experience did teach me one thing, though. There's been a lot of talk in the media about autism being over diagnosed. I call bullshit. If this woman is an example of early intervention screening, then I'd bet that it's being missed more than over diagnosed. This woman wouldn't have mentioned autism at all if I hadn't brought it up, and Noah has obvious signs. How many children of uneducated or poor families are being missed because of a lack of knowledge or a lack of funds to get their children evaluated? Contrary to popular belief, the world isn't full of doctors who are experts in autism. There are exactly two doctors in our city who consider themselves knowledgeable enough to accurately diagnose autism. Neither of them are in our insurance network. Neither of them accept Medicaid. Those kids get lumped into the developmental delay category, and they end up with a mish mash of diagnoses, like Eli did when he was younger. They miss out on research based autism interventions at a very young age. And what makes me angry, is that these are kids on the milder end of the spectrum. Kids who, with proper support and intervention, could one day live independently and contribute. By failing to support them, we end up condemning them to a life of failure, low self-esteem, and frustration. These kids have potential! Yet, they are being denied services that could save them.

I'll get off my soap box now. We haven't received any word about Noah's eval yet, but I'll let you know what they say. Fingers crossed.

Weird Things Lela Does That Are Not Autism Related

2012-01-14T19:29:00.000-06:00

My youngest daughter is bat shit crazy. She really is. Straight up weird. I'm not referring to anything related to autism. I mean that she does some of the strangest things that have absolutely NOTHING to do with autism at all. Here are a few examples of what I'm talking about.

Florida
Lela's favorite "game" is something she calls Florida. Basically, it consists of her walking around the house, with Noah trailing behind. She pretends he's a girl and calls him Florida. That's it.

I've asked her not to do it. Poor Noah already thinks his name is NoNo, and calling him Florida is not helping. Lela, however, insists on it. She constantly asks me if we can change Noah's name to Florida because she likes it better. Uh, no. I told her when she gets married and has a daughter that she can name her own daughter Florida. Five minutes later, I hear, "Florida! Hey Florida, come on!" And there they go, running off together.

Seriously, Lela?
Truly, this next thing might be just a smidge autism related, but I'm still hanging it up in the pure crazy closet. Autistic kids often get stuck on repeating things. Well, you know that cheerleader chant, "When I say _________, You say __________"? Well, Lela has been chanting "When I say Justin, You say de Beiber--JUSTIN--de Beirber, JUSTIN--de Beiber!" I spend at least three hours of almost every day trying to get that chant out of my head. I swear, if she wasn't so cute.....

Good News/Bad News
Lela's other trick as of late is "Good News/Bad News". She's ALWAYS got good news and bad news--even if it doesn't really seem all that good/bad to anyone else. For example, the other night, Lauren told her to go to the bathroom and get a ponytail holder. Several minutes ticked by, but Lela eventually flounced her way back to Lauren and announced, "Lauren, I hab good news and bad news. I looked in all de cabnets and all de drawers, and I din't find a ponytail holders." Lauren, slightly amused, said, "Well, what's the good news?" To which Lela replied, "I looked in all de cabnets and all de drawers!"

So, what crazy things do your kids do?

My Next Project

2012-01-07T09:00:00.000-06:00

A co-worker once asked me why we had more children, when we knew we had one with autism. I think most people who have multiple children with special needs have heard some variation of this incredibly insensitive question at some point.

I started my blog after Eli was diagnosed, so most of my readers don't know how we did end up with four kids--three with autism, and the scope of our journey isn't easy to sum up in a few words. Also, the further we get down the road, I find looking back rather comforting. I like to remind myself of how far we've come. Especially when one of the little ones is going through a difficult time. It helps me to remember how Eli used to be, and to remind myself that progress is possible.

Therefore, I am going to share our autism journey in its entirety. I'm developing a page for each of our kids, so that readers can learn about some of the early signs I missed, and hopefully, our experience can give parents of newly diagnosed kids some hope. Progress does happen. It does get better.

I have started Eli's page, and I'll be updating it regularly. I'll let you know when I make updates, because it's going to take me more than a day to do this. I hope our story will help someone.

The Year In Review

2011-12-31T15:33:00.000-06:00

One of my favorite bloggers, Autism Wonderland, recently did a list of her favorite posts this year. It was so nice to go back and read that I thought I'd do the same. So, here's the Apples and Autobots year in a nutshell.

January
Lela was diagnosed with autism, and Noah started early intervention services. I didn't handle it very well, initially. Here's the post I wrote a couple of days after we got Lela's official diagnosis.

February
You Might Have A Kid With Autism was probably one of my favorite posts ever, celebrating the quirky humor of living with autism each day. I was even more delighted when readers chimed in with their own stories. Please read the comments--they're even better than the original post!

March
When Noah was almost 16 months old, he said Daddy for the first time.

April
I wrote my first World Autism Awareness Day post this year. I also nearly had a nervous breakdown and decided to let other moms know how to avoid my mistakes!

May
In May I had A Strange Encounter with another autism mommy.

June
This was the month that we went on vacation, and damn near got arrested! Ah, autism, how I love thee!

July
July was a big month for my blog, but not so much for us. We were pretty boring in July. However, I wrote some of my best stuff ever that month. Here are a few of my favorites, including one guest post that hardly anyone bothered to read at the time--LOL.

Don't Laugh At Me--The story of a meltdown and an insensitive response
So Then, What Should I Do?--my advice to the "normal" people
Siblings and Special Needs--my guest post on how autism affects my kids' relationships with each other

Someone gave us an iPad in July, and we have been so blessed for having it!

August
We decided that Joe would be a SAHD this school year, and boy did THAT set some people off! I'm so glad that so many people left some encouragement for us.

September
In September, I got an essay published in a book!

October
October was a rough month for poor little Eli. It was all his doctor's fault, you know.

November
Noah turned two this year!

December
December was a month of firsts for us. We took our first family portrait, Lauren performed in her first voice recital, and Noah put words together for the first time.

So, tonight, Joe and I are going to get schnockered and ring in the New Year! I wish nothing but blessings and happiness for all of you in 2012!

My Best Gift? A Kick In the Head!

2011-12-28T09:59:00.000-06:00

Noah did something extraordinary last night. He put three seperate, unprompted words together to form a complete thought. He said a sentence!

Noah communicates using a combination of single words and gestures. For a while, approaching his 2nd birthday, he went through a sort of language explosion, and he now uses about thirty words regularly. Unfortunately, that seems to have stalled lately. He still repeats a lot of our words, but he seems to have stopped gaining new words, and words with multiple syllables, which he used to repeat with no problem have become a challenge. I was feeling a bit down about this. I was feeling like we had hit a plateau, and I was wondering how much progress we seemed to NOT be making. Then, last night, out of the blue, we received the encouragement to keep fighting.

Joe and I were watching tv in the living room. Eli, Lela, and Noah were in the toy room. Noah came to me and said, "Keh." (Kick)

"Kick?" I said.

"Nahna," he said, pointing in the direction of the toy room. Nahna is his word for Lela.

"Lela kicked Noah?" I asked.

"Nenhna.....keh......," he paused, staring past me for just a moment, and then his eyes slid back to me. "Heh," he said, rubbing himself on top of the head.

"Lela kicked Noah in the head?" I asked. I looked at Joe, and what had just occurred sunk in. Noah put three words together. On his own. No prompting. Noun, VERB, object. Our child, who has been struggling with two syllable words, made a sentence. We both teared up. Then, we took care of the fight, which was totally an accident, and then I let everyone know via Facebook.

We now know that the ability is there. We now have the strength and hope we need to keep going.

My Nite Before Christmas

2011-12-25T06:06:00.001-06:00

T'was the night before Christmas,
and all through the house,
Melatonin wasn't working,
not even on the mouse.

The children were tucked,
all snug in their beds,
but their eyes were wide open--
only mom and dad's were red.

The gifts were all wrapped
ready to go under the tree,
but there was no way to do it so the kids wouldn't see.

Finally, at 1:30 am,
Mom and Dad decided to retire.
They figured at some point
those kids would expire.

Unfortunately, it just wasn't to be.
There could be no end to the kids' Christmas glee.
When dad woke up at a quarter past five,
The kids were STILL up, like a buzzing beehive.

We know at some point,
Lauren fell asleep.
But she was woken up
by Eli's kicky feet.

Lela was resting in her Minnie Mouse bed,
But she shares a room with Noah,
There's no more to be said.

Noah was restless, as is often his norm
and he woke up Lela,
Who got up thinking it was already Christmas morn.

When Lela discovered mom and dad still asleep,
to Lauren's room she went,
so now Lauren was no longer asleep.

And so that's how we came to no Santa this year.
The only gifts out were what Mom and Dad put there.
And lucky for them,
None of the kids seem to care.

Lauren's not a believer in old Saint Nick,
And Eli doesn't care--Santa's not what makes him tick.
Lela got all goggaly eyed at the stuff under the tree.
It didn't matter whether it came from Santa or Daddy and Me.

So for all of you who are sad,
because your kid doesn't understand,
OR they're too old to believe in the Jolly Old Fat Man,
Take heart at my Christmas tale,
I assure you it is true--and all of us here at Apples and Autobots wish a
Merry Christmas to you!

Things I Learned At The Portrait Studio

2011-12-22T14:39:00.001-06:00

We took the kids and had our first family portrait made today. The photos are a Christmas surprise for the grandmothers, etc. I can tell you because one doesn't have the internet, the other never checks her facebook/daughter's blog, and anyone else who knows them won't say anything about this--or they just might not say anything again ever--GOT IT? Okay. Homicidal threat moment over. Our family portrait was a learning experience. Here's what I got out of it:

1. The Leggo table they have set up for kids while they wait is great...unless they don't actually HAVE to wait. When we first walked in, Eli and the two youngest were drawn to the table--sucked in by some weird Leggo magic. They had about three minutes to get a good line of leggos going when we were called to the picture room. Eli and Lela walked away with no problem. Noah, on the other hand, had to be "removed." That's when I learned the second lesson of the day....

2. If you want Every Single Eye in a room to be on you, be the one holding the shrieking two year old.

3. Pointed comments go right over the crazy staring granny's head. Noah wouldn't quit screaming until we gave him a block to hold in each hand. And that's fine. But all of his screaming attracted the stares of this older lady who was with her daughter and grandkids. She was staring so hard that I finally told our "photographer," in a loud enough voice that the lady could hear that Noah has autism and would settle down in a minute once he felt comfortable and if he could just hold a couple of blocks from the Leggo table. I hoped it would make her quit staring. It didn't. By the way, he did calm down after he was given a block for each hand.

4. If you tell Noah to sit in the chair, his eyes will light up, and he'll sit in every chair in the room except the one you want him to sit in.

5. Lela doesn't know how to do a fake smile. Neither does Eli. I don't mind--they're still cute.

6. Noah needs to spend more time with my sis-in-law. The photographer needed some serious backup, so she called in this perky girl with a big, happy grin, to entertain Noah with a flower. Noah LOVED her. She immediately reminded me of a black version of my sister-in-law, Lynette. She had a big dimply grin, and was so over the top happy that Noah was completely enthralled. I was amazed. This kid hates 98.9% of the population on sight. That he took to her was a miracle. Thanks to her, we got some great pictures. Even if....

7. I'd rather deal with the autism stuff all day long than deal with an eye-rolling nine year old for five minutes. It's true. Lauren did that to me today--for the first time ever. I completely saw red. Luckily, she got over her sulky tween ways by the end of the session. I'm so not ready for Lauren--The Teen Years.

8. Happy photo girl will leave you with $350 worth of awesome pictures, and it's fine unless you only have a $50 photo budget!

9. Photographers don't have to "use their words" to let you know how disappointed they are that your exceptionally hard session will net nothing but the holiday special.

Since we couldn't afford to pay $100 for the CD, here's a ghetto version of our picture:

Lauren's Recital Performance

2011-12-19T15:10:00.000-06:00

Here, as promised, is a video of Lauren at her Christmas recital. You can see and hear her nerves, but she sang just fine! The baby screaming in the background is Noah! He was yelling sissy--sort of!

Straight From The 'Fridge--Er, The Incubator

2011-12-18T18:12:00.001-06:00

Noah in time out--
because spoiling is what we do here.

"That's not autism. That's her being allowed to get away with whatever she wants."--the teacher of an autistic middle school girl
"My kid wouldn't talk to me like that."--a parent who clearly knows all the answers
"Give him to me for a couple of weeks--I'll make him act right!"--my brother
"But it is because of bad parenting!!! Gah, these losers make me sick with their excuses. Spank the kid a couple of times and voila! autism all gone."--poster in a parenting forum
"He is, forgive me--spoiled--and he has learned to manipulate. But don't feel bad. I might have done the same thing."--an inclusion teacher--to me

Back in the 1950's, there was this theory about autism. It was called the "Refrigerator Mother" theory, and basically, the idea was that kids were autistic because their mothers denied them affection during a key moment in development. Fortunately, it's now widely accepted that this is false. Kids aren't autistic because their mothers are cold. Instead, we now have the "Incubator Mother" theory. It is now commonly believed. The idea that autism, especially mild autism, is really over-indulgent parenting or a lack of discipline. We have coddled our children to the point that we have stifled their development. And people have no problem informing us of this fact.

Allow me to be perfectly blunt. There is nothing you can say to me, or almost any parent of a child on the spectrum, that we haven't already thought about ourselves. Trust me. Your wisdom is not required. You don't get to the point that you bring your six year old to a psychiatrist without having spent many many many hours wondering how you could be such a shitty parent that you've fucked them up this badly in only a few short years. You don't try four different ADHD meds, an anti-psychotic, an anti-depressant, and numerous dietary changes, without first trying every single traditional discipline method in the book. We certainly don't enjoy the shame and derision we feel when people try to "help" by telling us everything we've ever done wrong as a parent. I promise--we've already got a catalogued list ourselves, beginning at conception. In fact, I have more than one autistic child, so I must be a really crappy mother. Maybe someone should have sterilized me after the first go-round, so that my poor parenting couldn't be inflicted on any other innocent kids? Never mind that my non-autistic child is very well-behaved indeed. She's the fluke.

The point is that it takes more than the average to discipline our kids. Let me give you an example of what I mean.

Picture it.....last Thursday....at school. The fourth graders, Eli included, were taking a practice LEAP test. Eli did a great job that morning. His teacher commented that he tested better than he ever has. Eli takes his tests in a small group, with other kids who receive accommodations. The kids went on a short break and returned to class. Eli was finished with his test, so he pulled out some change that he had in his pocket and started playing with it. The teacher told him to put the change up. Eli refused. Repeat--a few times. Finally, Eli asked to go to the Santa store. He was told no because there was no one to take him down there. He proceeded to pitch a fit. Yelling at his inclusion teacher, which resulted in him being sent to the office (he was disturbing the other kids who were testing). Upon entering the office, still angry, he yelled at the assistant principal. The assistant principal had to leave to go to a conference, so Eli was sent to the front office to wait, and he was still angry. Eli's "fit" got worse, and he ended up bashing his head into the wall several times. The front office, unsure of what to do, called the assistant principal, who had his inclusion teacher come get him. He spent the rest of the day in his inclusion class as punishment.

Eli was non-compliant. Eli was belligerent. Eli used a tantrum to manipulate his way to the Santa Store. That's one way to look at it. Eli failed. Here's another.

Picture it.....last Thursday....at school. The fourth graders, Eli included, were taking a practice LEAP test. Eli did a great job that morning. His teacher commented that he tested better than he ever has. He had worked hard, and he was tired. Eli takes his tests in a small group, with other kids who receive accommodations. Because he has Asperger's and severe ADHD. The kids went on a short break and returned to class. Transitions are difficult for kids on the spectrum. So is turning from a preferred activity to a non-preferred activity. This is a well-documented fact. Eli was finished with his test, so he pulled out some change that he had in his pocket and started playing with it. Kids on the spectrum often have difficulty waiting. They also have trouble handling emotions--all of them--even boredom. The teacher told him to put the change up. Eli refused. Repeat--a few times. Was he using the coins to stim? Was there a pattern that he felt compelled to finish? Kids on the spectrum, Eli included, exhibit many OCD behaviors. Or--was he already thinking about how to spend that money? Was he perseverating on the Santa Store? It's hard to turn our kids' mind away from something they are stuck on. Perseveration is a documented symptom of Asperger's. Finally, Eli asked to go to the Santa store. He was told no because there was no one to take him down there. He proceeded to pitch a fit. Yelling at his inclusion teacher, which resulted in him being sent to the office (he was disturbing the other kids who were testing). Would a sensory break--the kind that in his IEP have worked better? Recess is not necessarily a sensory break. Upon entering the office, still angry, he yelled at the assistant principal. Another transition. And once they get going, it's hard to stop the train wreck. The assistant principal had to leave to go to a conference, so Eli was sent to the front office to wait, and he was still angry. Still angry. And yet ANOTHER transition. And he probably felt like no one was listening to him. He speaks well, but he doesn't COMMUNICATE well. Another symptom of Asperger's. Eli's "fit" got worse, and he ended up bashing his head into the wall several times. Sensory meltdown. The front office, unsure of what to do, called the assistant principal, who had his inclusion teacher come get him. He spent the rest of the day in his inclusion class as punishment.

In this scenario, it was the adults who failed to respond to his needs. Now, this is an example of the muddy water we constantly swim in. Which interpretation of the above events is correct? BOTH of them. For every parenting decision we make, we always have to wade through several layers. Is it autism or just inappropriate behavior? Is it appropriate behavior for a kid his age? Is it appropriate for a kid his developmental age? Is it his failure, or ours? And finally--does it even matter? You see, in this case, it didn't matter at all. Eli's response was wrong, no matter the reason, and he had to be corrected on it. Yet, that also means that we have to punish him for things that he isn't 100% responsible for. And I'll be honest, it's hard. You see, Noah is benefiting from something Eli never had--Early Intervention. Noah is learning that words are the correct way to get your needs met, through patient, consistent instruction. Eli did not. Eli was hard-headed, stubborn, bad, hyper....you see? And yes, I will always feel like a shitty mother for that. So, if you think I'm a bad parent, I'll be the first one to agree with you--but not for the reasons you think.

Song Bird

2011-12-02T19:29:00.003-06:00

Lauren and Mrs. Brittany

Lauren performed in a music recital last night. She takes voice lessons from a wonderful lady named Brittany, who, by the way, has a blog about her daughter Evie, who has a mito disease called LCHAD. Wow--that was a mouthful! You got all that???? Anyway, Lauren receives a scholarship from a community arts group to take her lessons. It's wonderful to see her do something she loves and get attention for her talent.

Last night's recital was a Christmas program, so she and I shopped for a sparkly red dress together, and she was excited to wear sparkly earrings and a necklace. Lauren looked very festive indeed!

After we got everyone all dolled up, we headed out. I was nervous about how Noah would react. He's not very good in restaurants (usually), so we don't go out much, not that we can afford to anyway--LOL. Noah kinda tends to go all PeeWee Hermany in public--you know, random noises and lots of loud yelling. However, we decided to brave dinner at a restaurant with my mom and Dad 2.0 after the recital, so we had to head to the recital with enough anti-autism ammo to keep Noah reasonably quiet during the recital and through dinner afterwards, we had to prep Eli for how he should act and what was expected of him, and we always travel with earplugs for Lela.

I hate going to places where quiet is expected. With our bunch you never know what will happen. When we got out of the van, Eli took off like a shot across the street (luckily, it was a side street with no traffic) and immediately dived into the grass. His attempt at a superhero style crash was great. The grass stains on his khaki pants were not so great.

Lauren had to do a mic check and warm up, so we were about thirty minutes early. That was actually a good thing because it gave us a chance to get Noah settled. It took the entire thirty minutes. Evie, Mrs. Brittany's almost two-year-old daughter was there. She was quite interested in Noah. She kept on insisting on calling him "baby." Luckily for her, Noah wasn't interested (he has a cold at moment). He did keep trying to kick her every time she got near him, but her mom and I assured her that boys would be doing just the opposite in a few years!

Noah pitched a pretty good fit, and we had a sippy cup, but it was empty. Luckily, Evie doesn't take much by mouth, but Brittany carries juice for show (Hey, all special needs moms have their hangups, right?), so she gave me some juice. OH--I also had.......

I know. Go ahead and give me my Mom of the Year Award now. In our defense, though, it did keep the little monster quiet. Well, unless you count him shrieking CUH (corn) at regular intervals. We also used the iPad to calm him down. Lela played it during the recital, and she never complained once about the noise. Oddly enough, Eli asked to go out once during a drum piece, citing the noise as a problem. I think his sound sensitivity is coming back--there was another incident with my mom-in-law, and an issue at school with noise as well. Does anyone know if that's possible? It's been like, two years, since he's had issues with noise.

Anyway, Eli used the iPad to take the pictures in this post.

Noah, waiting on candy corn

My songbird, mid-performance

Overall, the kids behaved appropriately. Our only near miss came in the form of a cat-call style whistle delivered by Eli when a little girl got up to play violin. Luckily, I got my hand over his mouth in time to muffle it. Oh, there was also the point during an obvious beginner's performance that Eli whispered, "Oh. I feel sorry for her." He was perfectly serious. Luckily, he remembered to whisper.

Lauren sang like an angel. I was so very proud of my sweet girl. I'll try to load her song here when I get the DVD in. She sang "Let There Be Peace On Earth." Her new lessons will begin next year. Unfortunately, the program is facing budget difficulties, and scholarships will be limited. I hope that Lauren gets it again, because we can't afford her lessons. I have a feeling that God will look out for her on that one.

Tugboat Turns Two!

2011-11-30T22:14:00.000-06:00

Today is Noah's birthday. He is two years old. I can't believe it.

One month

Six months

First Birthday

18 Months

2nd Birthday

Noah is doing great. He has not regressed. In fact, he's making slow but steady progress. He continues to be very responsive and engaged with us, and for that we are grateful. No doubt, this is largely in part to Joe working with him constantly. He is verbalizing all the time, even though it's mostly echo. However, he does spontaneously label things. In fact, he is so eager to communicate with us that he labels without prompting as a way of having "conversations." We love him beyond words, and we're so proud of him!

Dream Deferred

2011-11-16T17:00:00.001-06:00

When the twins were born, I had this dream of Joe and I tearfully saying goodbye as they piled into the car they shared and drove away to college. Eli was a Pre-Med major, and Lauren was Pre-Law. I could envision them sharing an apartment. Eli would be the over-protective big brother who would look out for Lauren. I could see him picking a cute little girl and getting married.

Autism changed all of that.

Never in my dreams did I imagine therapy.
IEPs.
A special school.
Yet, here we are.

Eli has been accepted into a school for children with autism, learning disabilities, and emotional disturbances. It's a Sped school, so that average class has about six kids. Most of the curriculum is computer based, which would be excellent for Eli. The autism program is seperate from the ED program, so that's a plus. It's an elementary school, so he would attend for a year and a half. I have a friend whose son, so like Eli that it's almost eerie, attended there and benefited tremendously from the program. It could be a really good thing for Eli.

It still feels like defeat.

It feels like the final knife in the heart of my dream.

It is admitting that my son can't function in a regular classroom. He needs special help.

He will never be the one who takes care of Lauren. She will probably always have to look out for him.

He might never get married. In fact, the idea of it is almost inconceivable to me.

I'm praying that this school will be a step in the direction we need to go to give him life and coping skills that he's going to need to be able to go beyond high school and someday get a job. That's my new dream. That he will one day get and keep a job.

Perhaps, if this school works out for Eli, I might be able to pull my dream up out of the basement of my heart and let it breathe again. Perhaps not. All I know is that this feels like one of those life changing moments. This could be one of the best things we ever do for Eli, or one of the worst. It's the single most frightening parenting decision we've had to make in a long time--and for us, that's really saying something. I'm praying that we're doing the right thing. Hopefully, our son will realize that he isn't defective--just different. And maybe, just maybe, he can start building some dreams of his own.

What happens to a dream deferred?

Does it dry up
like a raisin in the sun?
Or fester like a sore--
And then run?

Does it stink like rotten meat?
Or crust and sugar over--
like a syrupy sweet?Maybe it just sags
like a heavy load.Or does it explode?

--by Langston Hughes

LSU vs. Bama: Our Superbowl

2011-11-05T22:36:00.001-05:00

As most of you know, we reside in Louisiana. So of course, we are HARDCORE LSU fans. We hosted a game party for our close family on the night that LSU and Bama faced off. Here are the highlights! Oh, you might notice that I'm now using the kids' real first names. I've decided that the only crazy stalker who reads my blog is my mother, and she already knows our identifying information.

Pregame
First, Eli and Lauren opted not to be here. Lots of yelling and cheering and a house full of people? No thank you very much. To Meme's house they went!

We've covered all our bases. Daddy Joe has even taught Noah to throw up his arms and yell touchdown (DUHDOW!) Daddy Joe knows what's really important.

Lela before the game

Noah, pre-game

My very mature husband

I tried to convince Mrs. H to come over, but she was "busy." Don't worry--I'll take her to task on Monday.

Look! A rare picture of Mama Apples on the blog!

Noah and Cousin Katie playing

My niece Amanda--the only Alabama fan in the family. We're so ashamed. Funny thing, though. When Noah saw this picture on my computer, he thought it was a goat! Autistic kids focus on details rather than the whole picture, so he kept looking at this one and saying BAAAAH!!!

Cousin Jacob in his Tiger Gear

Amanda tried to make Noah say "Roll Tide." Noah has begun to echo. For those who don't know, this is how autistic children learn to speak--they repeat the last word that people around them say. Noah's very good at it. However, even Noah knew better than to repeat anything remotely sounding pro-Alabama. That baby was born with a heart of purple and gold. So, he wouldn't say it--thank God. It would've been a shame for me to fuss at him for something he said. Months of therapy undone in one fell swoop. We did get him to repeat "Tider" and "DOH!" (Go!)

By halftime there was plenty of yelling and a few f-bombs were dropped (sorry). My sis-in-law, Carmen, brought over some wings that were hotter than I expected, and then the mother-frickin' refrigerator was tied shut because of Noah. You would have cursed like that too.

But we were proud of our Tigers at half-time.

Of course, that pride turned to nail-biting by mid-way through the third quarter, when Bama had a three point lead.

By the fourth quarter, Lela retired to the toy room to curl up with the iPad, the noise of our yelling being too much for her. This was a great disappointment to Cousin Jacob.

By the time over-time started, we'd run through all of the laundry jokes. Mandy said, "Roll Tide!" to which Sam (daddy Joe's sis) said, "LSU is Fab!" And of course, I knew that LSU would win it ALL. It was guessed that Bama might need to Snuggle after the game.

We laughed at the crying Alabama fans when LSU almost scored the TD in overtime. I wish I had a picture of one to put here. And of course, there was much rejoicing when the Tigers WON!!!! We ROLLED that Tide!!!!!!

Turning On The Light

2011-11-04T16:38:00.001-05:00

Eli's announcement yesterday that he hears voices shocked and frightened me. So, of course, I did what any mom in my situation would do. First, I went to my Autism Moms community on Facebook. Then, I wrote a blog about it. Once I had tapped my people resources, I turned to Google. I looked up information on the most reputable mental health websites I could find, and I feel a thousand times better. Here's what I found, just in case--God forbid--any of you ever go through this.

Hearing voices is indeed a symptom of the big bad--schizophrenia. However, very few people who hear voices are suffering with schizophrenia. In fact, hearing voices is apparently not as uncommon as most people think--even amongst people who don't have neurological issues. Of course, mood disorders, bi-polar disorder, trauma, and anxiety and depression can also cause people to hear voices.

After some extensive, late-into-the-night reading (thank you, autism, for that kind of research experience), I don't think that Eli is suffering from any mental illness. He's not presenting any symptoms other than the voices. However, he has regressed over the past month or so. This is the first time he's ever regressed. We've seen the return of needing a transition object to and from school, his routines have become more rigid, and he's lost it with teachers a couple of times when that hasn't been as much of an issue before. So, really, I think he's suffering from anxiety and a whole lot of stress. His medicine issue a couple of weeks ago didn't help. So, hopefully that's it.

We are looking for a doctor to visit. We will look into this. I do plan to recommend that Mr. R remove his "Bang Head Here" sign. But I think it's going to be fine.

The Monster In The Closet

2011-11-03T19:33:00.000-05:00

It came out of nowhere. I was doing homework with my son, Eli. I'm not using his blog name ('Bot) for this post, because that's not who he is. He's Eli, and I'm worried sick about him.

We were sitting on his bed doing homework, and he suddenly turned and bashed his head into the wall. He's not, nor has he ever been, self-injurous in a headbanging kind of way.

"Why did you do that?" I asked, shocked.
"To make the voice stop," he replied, and then he promptly bashed his head into the wall twice--hard.

My heart dropped. "What voice?" I asked.
He rubbed the back of his head (a common stim for him) and said, "I have this voice in my head. It tells me bad things."
"Like what," I asked with fear coiling in my belly.
"Things about..." and he pointed up to the ceiling to indicate God.
"What does it say?"
"It says God is stupid, but I don't listen because I know that's not true."
That doesn't sound so bad, I'm thinking. So, then I asked, "Does the voice ever tell you to do things?"
"Yes."
"Like what?"
"It tells me to hit my friends, but I don't."
"Does it sound like a real person?"
"Yes."
"How long have you been hearing it?"
"A year, I think." This time frame is purely arbitrary because Eli doesn't really gauge time well, but it's obvious that he's been hearing this voice for a while now.
"Do you hear it all the time?"
"Yes, but mostly in Mr. R's room. He has a sign on his wall that says Bang Head Here, and you're supposed to do that when you're stressed, so I made a place on my wall."
"Do you hear the voice at night?" Big nod.

Of course this comes at a time when we've left Dr. Dickhead's practice. So, what am I supposed to do now?

Crime Stoppers

2011-10-21T09:48:00.000-05:00

Create your own video slideshow at animoto.com.

Halloween Is Great--Unless You're Us

2011-10-15T18:11:00.000-05:00

We live our lives day by day, and most of the time, we don't really think about the extra things we deal with that most people don't. We don't give a second thought to the fact that we can't leave a dishrag in our sink because it terrifies Tinkerbell. It doesn't stand out as weird that when she gets upset she will cry, "Please don't put (insert random object) in the sink!" We don't think twice about saying things like, "Hey, don't lick the dustpan!" It's not unusual for us to say something, and then give ourselves a mental slap and immediately start explaining what that expression means to our literal audience. Those things are just normal for us, and we don't mind--at all.

However, every so often, something "gets" me, and it makes me realize just how much we live in a different world than most people. Little things, like hearing a two year old say "Mommy sit," and patting the spot next to her. Sitting down to a meal with family and seeing their seven year old son sit quietly and eat. Listening to a five-year-old chat and make conversation confidently. Spending Nana's birthday party apologizing constantly to anyone who approached Tugboat and were met with screams of rejection. "Sorry. He's not a people person." Those things break my heart.

Halloween is a fun holiday, but it depresses me like Christmas does for some people. When the twins were little, we'd watch 'Bot eagerly approach other trick or treaters with costumes that matched his. We watched him get rebuffed because of his rude/weird conversation opening. We watched other parents give him strange looks and pull their kids away. Before we knew about his ASD, Halloween was a painful indicator that something "wasn't right" about our boy.

For Tinkerbell, Halloween is the equivalent of pure hell. Face painting? Not gonna happen. Loud music at an event--cue the tears. Approach a stranger's door and say something? Not a chance. Walking in the dark? Yeah right. And don't even get me started on people in masks. The girl is terrified of our sink, for pete's sake. That should tell you how she reacts to people in costume. It really bothers me that she can't enjoy a simple things like our school carnival without leaving in tears.

So, while most people are excited about putting out their scary decorations and shopping for costumes (don't even get me started), I'm dreading October 31st. I can't wait for it to be over.

Autism HD: Why 'Bot's Doc Is A Dick

2011-10-01T09:11:00.002-05:00

'Bot has taken Prozac since he was six years old. It helps to manage his anxiety, reduces his "OCD" behaviors (the rigidity that kids with autism deal with), and helps him to stay emotionally regulated. I don't believe that medicine is the answer to everything. Nor do I think it's right for every child. Tinkerbell will probably never need to be medicated. However, for 'Bot, it has made all the difference in the world. When he started taking his medicine, he went from an average of six to ten meltdowns a day to two or three a week. He let go of a lot of obsessive routines, and he even stims less. As he's gotten older, I've often wondered if he'll always need medicine to cope with the world. We found out the answer to that question this week.

'Bot's medicine is on automatic refill. So, last Friday, when he took his last pill and the pharmacy still hadn't called to say his prescription was ready, Average Joe called the pharmacy. He was informed that 'Bot was out of refills. We usually see the doctor every three months for a "med check," but we'd canceled our August appointment because, frankly, we don't have $75 to go tell the doctor that everything is fine and we don't need to change anything. As a result, his prescription wasn't renewed.

Joe asked the pharmacy to call the doctor, and then Joe called them himself. He talked to a very bitchy secretary who informed him that Dr. Dickhead may not fill the prescription because 'Bot hadn't been there since March. Joe informed Her Royal Bitchiness that 'Bot had indeed been there in May. Further checking revealed that Joe was correct, she took down the pertinent information, and said she'd pass it along to the doctor. By Monday evening, we still hadn't heard anything.

In the meantime, 'Bot was falling apart. It started with depression. A sobbing, moaning 'Bot unleashed a torrent of anxiety on my unsuspecting mother-in-law. His teacher doesn't like him. I'm going to kick him out of the house in two years if his grades don't get better. His dad doesn't like him because 'Bot is mean. He went on and on. She called us up, alarmed, and had us talk to him until he calmed down. We have no idea if he really worries about those things, or if it was just a by-product of withdrawal.

As the week went on, Joe continued to call the doctor's office every day. The doctor NEVER CALLED BACK. 'Bot's teachers reported that he was completely unfocused. He retreats into himself to deal with anxiety. Stims that we haven't seen in ages made a come back. He started chewing his shirt again, and even chewing mine during homework time. Wednesday night saw him screaming and handflapping, which he only does in extreme distress. He was violent at the slightest provocation. He was irritated by his clothing and the seat belt in the car. Those things aren't normally a problem for him. I guess his increased emotional unbalance made it impossible for him to cope with that and sensory issues too.

And through it all, Dr. Dickhead never called.

On Thursday night, the twins and Tinkerbell spent the night with my mother-in-law. I had an event at school that required me to stay late, so I just dropped them off at her house for the night (we live too far away for me to justify going home and then going back, and she lives close to the school). At bedtime, 'Bot had an emotional meltdown. He lay in bed trembling and crying. "'Bot, what are you feeling?" she asked. "Are you sad? Angry?"

"I DON'T KNOW HOW TO EXPLAIN HOW I FEEL!!!" he cried. So, she just held him and told him that she was there for him. He drifted off to sleep.

Joe decided that he was going to call the pediatrician. Dr. Quack doesn't prescribe 'Bot's Prozac, but we were hoping that he would once he heard what was going on. However, before he made that call, he tried a pharmacy at another location where we've had prescriptions filled before, on the off chance that the medicine had been called in there by mistake. It hadn't. However, after explaining to the pharmacist what was going on, the wonderful man looked in the computer and saw that we had a prescription on hold. Apparently, back in May, Dr. Dickhead gave us 'Bot's prescription on paper, and he faxed it in as well. The faxed prescription and two refills were in the system. The pharmacist was pretty pissed that the other pharmacy hadn't bothered to tell us that. So, FINALLY, yesterday, we were able to get 'Bot his medicine.

And now we have two months to find a new doctor.

So, I'm Totally A REAL Writer Now!

2011-09-20T04:19:00.005-05:00

I have an announcement--one that I'm quite proud of! See the new link in my sidebar? That book that's available on Amazon? It's called The Wit and Wisdom From the Parents Of Special Needs Kids: Mostly True Stories of Life On the Spectrum. The book is a collection of essays from parents of kids with autism--and I'm one of them. That's right. Someone put me in a book! I was thrilled and honored when author and editor Lynn Hudoba invited me to submit an essay, and I'm still over the moon excited that my essay made it into the book! Guess what? I even get royalties when someone buys a copy. I'm very excited. So, don't just sit here contemplating the cover. Pick up a copy! Here's a blurb about the book:

Wit and Wisdom From The Parents of Special Needs Kids brings together dozens of the best writers in the blogosphere, sharing their stories of both the challenges and rewards of raising children with autism and other cognitive disabilities. More than forty essays are included in this unique compilation, covering topics such as sensory issues, the difficulties of social interaction, the impact on marriage and typical siblings, and the world of special education and therapies. These parents cover the gamut of experiences -- from initially receiving the diagnosis for their child and reconsidering their expectations for the future to learning how to let go of children as young adults – as well as an emotional spectrum from sadness and loss, to the frustrations of assimilating not-so-typical children into the typical world, to the joy of living amongst their often hilarious quirks and obsessions. Wit and Wisdom From The Parents of Special Needs Kids is a must read for anyone whose life has been affected by intellectual disabilities. Every parent of a special needs child will identify with the life experiences included in this book -- they are as varied, unique, and inspiring as the children themselves.

Bot's Great Big Terrible Really Bad Day

2011-09-15T10:28:00.000-05:00

During fourth period yesterday, just a little before eleven a.m., there was a knock on my classroom door. I opened the door to see a gently smiling, over-reassuring Mrs. M. My warning bells immediately went off. Mrs. M is a tell it like it is, loving but firm inclusion teacher. She doesn't work directly with 'Bot anymore, but she does look after him.

Anyway, she said, "I just wanted to let you know that we had a little situation with 'Bot this morning, but we got him to go back to class, and I told him you would talk to him about it at recess." Reading between the lines, I realized he'd gotten in trouble again and refused to go to class, and was probably still highly upset.

'Bot has been having a tough year so far. Fourth grade is much more rigid than he's used to. Teachers in the past have probably been a little too accommodating on some things, or maybe his teachers this year are not accommodating enough? I don't know. I am arranging for him to be observed by the district's ABA consultant so that I can get a better idea of the whole picture. 'Bot has been defiant on several occasions, and I have to go see him at recess everyday (my lunch time, luckily). Otherwise, he sneaks away during class change time and comes to see me. He's unusually clingy, so I think this adjustment is hard on him this year. The upside is that he does seem to be taking his academics seriously--for now.

Anyway, the incident of yesterday was purely Aspergian in origin. As his class was standing in line to rotate to their next class, a boy threw a piece of paper at 'Bot. 'Bot threw it back. 'Bot got caught. 'Bot argued with the teacher that the other boy threw it first, and he was just giving it back. When told to put the piece of paper that he was holding in his hand in the trash, he refused, reiterating that he didn't start it so he shouldn't be responsible for putting the paper in the trash. It made perfect sense to him. 'Bot's kind of like Fox News--fair and balanced as long as you're on his side of the debate. He even told Mr. R, his actual assigned inclusion teacher, that he was just returning the paper to the other boy. Yeah.

Anyway, after getting fussed at, the boy shut down and refused to go to his next class. An administrator was called to come get him. At some point Mr. R and Mrs. M entered the picture, and they both talked to him. He ended up going to class, but his day was shot. At 2:15 he stormed into my classroom, threw his backpack against the wall, and sat on the floor behind me with his head covered by my jacket until my class was over. My students, who think his little "attitude problem" is adorable, didn't even say anything to him because he was so obviously pissed. He cried for thirty minutes after school.

Times like that make parenting a child with AS difficult. My instinct was to hug him and love on him, but I knew we needed to have two conversations. One about his decision to throw the paper back, and how that choice made him just as wrong as the other boy. We also had to discuss who is really in charge at school. His teacher. I told him that even if she asks him to do something completely ridiculous, he still has to do it, because she's the boss. Yes, even if she tells him to hold his nose and sing the national anthem. At least that visual made him laugh. Today, as we walked into school, he held his nose and sang the national anthem the whole way. But Mr. R said something that I'm trying to keep in mind--"Look, he's come so far in the past two years. He's like a different child--a world of difference!" He's right. I've got to keep reminding myself of that fact.

Situation Resolved

2011-08-31T17:49:00.001-05:00

I think.

Princess Has A Blog!!!

2011-08-28T10:12:00.003-05:00

My Princess has been bitten by the writing bug. She has decided to start her own blog, Zebra Stripes and Leopard Prints. Please pop by and visit her. I really want to encourage her writing, so if you can, leave her an encouraging comment--and follow!!!!

Paging Dr. 'Bot?

2011-08-26T20:52:00.000-05:00

'Bot survived getting the stitches (if you missed the story click here). He even made friends again with K and L--although it's an ongoing forgiveness process. What we discovered this evening, however, is nothing short of astonishing to me.

I told 'Bot on Wednesday that his stitches had to come out. My mom, who is a nurse, was going to remove them. Unfortunately, something came up, and she wasn't able to come over, so this evening my SIL, who is also a nurse, tried to take them out. The problem? She couldn't see any stitches. She looked carefully, and finally decided that the ER must've used dissolvable stitches by mistake. The wound looks good, fully closed with a nice scab.

Something was nagging at my SIL, however. She finally got the truth out of 'Bot. He removed his own stitches. On Wednesday. When I told him they had to come out. You'd think after nine years with this boy I'd learn, right?

Oh, a sidenote--Princess knew he'd done it, and didn't say a word!

In Stitches

2011-08-20T15:32:00.000-05:00

Disclaimer
The following story is not for the faint of heart. It's a tale of sleep deprivation, torture, blood and tears, and Abraham Lincoln. Read at your own risk.

2:30 am, Friday
Tinkerbell never sleeps through the night--ever, unless she's at Meme's house. So having her crawl in bed with us is not unusual. I'd rather that than have her wandering around the house as 'Bot used to do. The problem comes in with Tink's passive nature. Tink is our most obedient child. Her anxiety prevents her from making even the tiniest choices without help or permission.

2:40 am
"Mama."
"What baby?" I ask groggily.
"I haff to go poddy."
"Ok baby." She climbs out of bed. Thirty seconds later, she returns.
"Mama," she asks, her voice cracking with barely suppressed tears.
"What baby?"
"The yight is off."
"Well, turn it on."
"Okay." She blinds me when she turns on the bathroom light, uses the potty and returns to bed.

2:45 am
"Mama?"
"What baby?" (And my boss marvels at my patience with the big kids--this is how I developed it people)
"Can I get a bink?"
"Yes baby." She climbs back out of bed, goes to the dining room table and gets a drink from the cup of water we leave out for her and returns. She tosses and turns for ten minutes. Sigh.

3:00 am
I am now wide awake. I get up and check the time. I still have two hours before I must get up. I get back in bed.
"Mama?"
"What Tinkerbell?"
"Can I pay your hair?"
"I guess so." She begins to play with my hair. I give up on sleep and get up.
"Mama? Where are you going?"
"I'm getting up. You stay here and keep my pillow warm."
"Can I pay the iPad?"
"No."
Tantrum. Ten minutes later she wandered into the living room to watch tv. I was already too absorbed in my school work to fight with her.

The upside to my day beginning so early is that I got a lot done. My day is tough because first period is my planning hour. I then have six straight hours to teach with only a twenty minute lunch break that comes after the first four hours. I'm worn out by the end of it. I'll adjust, and within a few weeks I'll no longer notice when I have to pee or that my feet hurt, but it takes time to get to that point. The day does go by fast, so that's good.

3:00 pm, Friday
'Bot and Princess were in my classroom playing with my co-worker's two kids, K and L. K is a seventh grader, and L is in sixth. They were playing karate, and I kept cautioning 'Bot to play carefully. He doesn't realize how hard he's hitting sometimes. Well, K was holding 'Bot with his hands behind his back, marching him up towards me. She told L to grab his feet, thinking that they would pick him up. She didn't count on 'Bot's resistance to this plan. As L bent down to grab 'Bot's feet, 'Bot gave a jump and tried to get away, falling and smacking face first onto the floor.

I froze. L ran. K and Princess gasped and leaned over 'Bot, who grabbed his face and started screaming. Blood oozed from between his fingers. I wasn't sure what kind of wound we were dealing with so I helped him up and walked him to the bathroom down the hall. A custodian peeked out of the room next door, and I let her know about the blood on my floor. She grabbed paper towels from her cart and followed us to the bathroom, where we were able to get a look at the wound.

Just under his chin was a gash about 3/4 of an inch long and wide enough that when he pulled his head a certain way, the jaw bone was visible. I don't know how he didn't crack any teeth or bite his tongue.

Two of my co-workers were still on the hall,so I left 'Bot in their care while I packed up my stuff and we left. By this time, 'Bot had recovered enough to give a very thorough and detailed explanation about his new opinion of K and L. 'Bot doesn't understand the difference between accident and on purpose. It will be a long time before he forgives them, even though this whole thing was a pure accident.

All the way to the hospital he wailed, "I want this to be ohohohohohverererer."

To be continued tomorrow......

Coupon Cutie

2011-08-17T06:48:00.000-05:00

I came home yesterday evening to find my SIL C's van in the driveway. C is a couponer. She has a binder and everything! She brought over some laundry detergent and various food items for us, and she's going to teach Joe how to coupon. This should be interesting.

Tugboat was so excited to see me when I walked in that he just started running around in a circle, squealing and laughing. I swear, when Princess asks for a puppy, I just point to Tugboat.

'Bot is getting nervous about school. Students start tomorrow. About a week ago, the fourth grade teachers held a parent meeting, and they gave us a folder of information. Night before last 'Bot read the entire folder. I wish I could make his anxiety go away.

My school year started yesterday, so wish me luck and a great year!

Tough Love

2011-08-11T21:04:00.000-05:00

I never thought I would need to do this. I never thought I would feel the need to defend a choice we have made as a couple to other people--but here it is.

As you know, I am a teacher. My salary is not anything to brag about, but my job provides our insurance and my retirement plan and the benefits are pretty decent. In June Average Joe was released from his job. It was a temporary job to begin with, with no benefits and only nine bucks an hour. Joe searched for a replacement job, but nothing was forthcoming, so we had to make some tough choices.

After we considered everything, including Tugboat's development and our family's unique needs, we felt that the best choice for us, at least for right now, is for Joe to be a SAHD this year. I can't do it. My job provides our benefits, but even if I could afford to stay home, I still think Joe is the better choice. Quite simply, he's a better therapist than I am, and Tugboat needs him right now.

Some members of our family have been critical of our decision. They look at 'Bot and Tinkerbell and think--that's not so bad. I don't know what the big deal is. To that I have to say You Have No Idea. 'Bot and Tinkerbell's autism is not the same as Tugboat's. It's kind of like the difference between a cold and the flu. Both can make you feel like crap. They even have similar symptoms, but the flu is a LOT harder to deal with. Tugboat has language deficits, and I'm afraid the regression is starting. His primary activity during the day has dwindled down to flipping light switches and playing alone without his toys. I'm not sure what he finds fascinating about staring into space or watching commercials, or just walking around the house, but those things have become more interesting than almost anything else. The iPad and his stuffed animal are the only "toys" he's interested in lately. He's not even into lining up his cars as much anymore. We must do what is necessary for him.

Tugboat needs to be worked with consistently throughout the day. Joe can provide that. He can also be invaluable support for me. I nearly drove myself insane last year trying to do it all, and having him at home will take a huge load off of my shoulders. Yet, Joe feels guilty about this choice. I won't lie and say it's easy. We're pretty poor. And that's an understatement. However, it isn't as bad as it could be. We're not in danger of losing our home. Our bills are paid. We aren't in debt, having gotten used to living on cash a long time ago. We're just very strapped. Living on love, so to speak.

If we had decided that I would be the one staying home, we'd be overwhelmed with support. People would praise me for being a strong mom and feel bad that we are needing to make such sacrifices right now. Yet, since it's Joe, he's made to feel like less. He's criticized for taking a less traditional role, even though it's what our family needs. Well, I am proud of him. He's the greatest partner I could ever ask for.

I know that many of my readers have made sacrifices for their kids. Please leave an encouraging comment for my Joe. Thank you.

Blog Gems: Community

2011-08-08T10:29:00.000-05:00

Blog Gems is a link up created by Jen at The King and Eye. It's currently being handled by Varda at The Squashed Bologna, while Jen is taking care of her family. Bloggers are asked to dust off an old post and let new readers see it. The theme this week is community. Since we are about to begin a new school year, I am sharing this post about the community of educators who worked with 'Bot and Princess last year. Enjoy!

Follow Up At SPDBN

2011-08-04T09:15:00.000-05:00

Today, the SPD Blogger Network is featuring the follow up to my last post there. Click here and go read it!

iThingy

2011-08-01T15:26:00.000-05:00

Before I begin, I'd like to apologize for cramming several topics into this post. I usually try to be mostly cohesive, but not today friends! Today I'm as random as a taco eating squirrel.

I'm Sorry
The noose of approaching school is tightening around my neck and squeezing every minute of leftover summer time out of me. The next couple of weeks are going to be all about getting school started for me, so my time to write, as well as my time to read and comment on the blogs of others is going to disappear for a while. I am sorry in advance. On the other hand, I know I'm in the right career, because I'm really getting excited about going back to work. I'm teaching 7th grade Reading and Social Studies this year. I'm looking forward to it.

On Saturday morning we woke up in an inferno. Our air conditioner had gone out again during the night. So when I heard a knock on the door, I opened it wearing my nightgown and housecoat, thinking it was Cousin John Who Fixes Air Conditioners. It wasn't. It was the UPS guy with our iPad! We hadn't told the kids we were getting one, so I quickly threw on some clothes and we filmed them opening it.

I loaded it up with some free apps for the kids to try. I was amazed at how quickly the kids caught on to using it. Tinkerbell needed some hand over hand help at first, but it didn't take her long to master the motions. Tinkerbell loves it, although for the life of her, she can't remember what it's called. She keeps asking to play on the iThingy. Later this week I'm going to try to do a post about each kid's top three apps, and put links up to them. I am so pleased with the variety of activities for each of the kids. I've even found some good ones for Tugboat! Tinkerbell is learning letters and numbers, and Princess is enjoying the picture app that came with the iPad, as well as some National Geographic apps about animals and sharks. She can't wait to download her first book from the Kindle store. Neither can I, for that matter! For 'Bot I've downloaded some Math games and an awesome social stories app. He also loves the xylophone and his Transformers comics.

My kids are NEVER still, but when they're on the iPad they get so focused on it. It's amazing. I put a video on my facebook page of Tinkerbell and Tugboat using the iPad. We're REALLY loving it.

A Question
Does anyone know how to tell the difference between a stim and a tic? This week Tink has started doing this weird thing with her mouth. I can't tell if it's a stim or if it's an involuntary tic. If you can help me figure out the difference, PLEASE comment!

The Puzzling Piece
At the time of my last puzzling piece update, I had 22 pieces. I want to thank each and every one of you who bought a piece. Some of you bought several. I don't want that to go to waste, so I'm going to stay in their challenge. If we win an iPad, I will donate it to the autism class at my school. The class consists of elementary aged children. I think there are six of them, and all of them have moderate/severe autism. Please consider purchasing a piece if you are able.

Siblings and Special Needs

2011-07-30T01:21:00.001-05:00

The lovely Varda, who blogs at The Squashed Bologna: Life In the Sandwich Generation hosts a special series every Saturday focusing on siblings and special needs. Varda is the mother of nine-year-old twin boys, Jacob and Ethan. Jacob has autism and Ethan does not. She started Special Needs Siblings Saturday to share the stories of families who, like her, are balancing the needs of "typical" children and children who need a little extra everything. I was delighted and honored to be asked to write a post for the series. Varda is a writer that I really admire, and she is always an inspiration to me. Click here to read my post, and when you're done, read around Varda's blog. I promise that it will be time well spent.

Another Day Away

2011-07-29T06:28:00.001-05:00

Today I am once again elsewhere. I was invited to guest post on a wonderful blog, Doing It All For Aleyna, while she's off vacationing with her husband. Click over to read my hostile takeover of her blog. It actually has nothing at all to do with autism or my kids! This time, it's all about me baby!

Intrigued? Click here!

Visit Me At the SPDBN

2011-07-28T10:46:00.000-05:00

My post, "Don't Laugh At Me", is featured at the SPDBN today! Click here to go read it, and while you're there, explore all of the amazing posts.

If You Give An Apple An iPad

2011-07-27T08:45:00.000-05:00

If you give an Apple an iPad, she's going to lay awake all night long in shocked excitement.

Then she's going to wake, stumble through Tugboat's speech therapy appointment, and kiss her family goodbye.

If you give an Apple an iPad, she will drive to the airport and buy a ticket for a cross-country flight.

On the flight, she will eat peanuts and sleep.

If you give an Apple an iPad, she'll get off the plane and call a cab.

She'll have to hunt you down, but I'm sure there's an app for that!

If you give an Apple an iPad, she will stumble up to your house and fall asleep in your hammock. (Remember, she didn't sleep last night!)

If you give an Apple an iPad, she will ring your doorbell once she wakes up. She will give you a hug and one of her kidneys in a cooler!

If you give an Apple an iPad, you have a friend/slave/stalker? for life!!!!

Okay, enough goofiness. As you might have guessed, our family is going to receive an iPad! As you know, we've been trying to win one through The Puzzling Piece. However, our iPad (personalized with our family's name on the back), is coming to us due to the generosity of one lady. She went and bought us one. This wonderful woman, who wishes to remain anonymous, has never met us. I consider her a friend, because we read each other's blogs, but she doesn't know us in "real life." Yet, she went and did this for our family. Her reason? She likes to help where she can. I am stunned.

I really don't have the words to convey how moved I am by her generosity. I still can't believe it.

I suppose all that I can really say can be summed up by Matthew 25:40.

...I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.

Down the Rabbit Hole

2011-07-21T20:06:00.000-05:00

We went to see Dr. M today, the autism specialist in our town. She spent time with us and observed Tugboat. She was utterly fascinated with Tugboat. In her own words: "I could just watch him for hours because he's so interesting!" Uhm.....not exactly what we wanted to hear.

Anyway, here's the skinny on Tug as of right now. If he were to be evaluated today, he'd most likely receive a diagnosis of PDD-NOS, which is one of the five autism spectrum disorders. HOWEVER......we're not going there right now. Several variables seem to be at work in our lil' guy at moment.

In the area of motor mannerisms, the doctor was fascinated and quite concerned. Tugboat displays motor stereotypes that don't normally appear until around the age of three--and he displays them to a great extent. The doctor is concerned that this may indicate a severe case of autism.

His language is significantly delayed, but he shows signs of improvement. Socially, he's doing quite well, all things considered.

So, the doctor feels that one of two things will happen. Either Tugboat will continue to make progress in language development and not develop social defecits, leaving him with PDD-NOS by age 3, OR we haven't even begun to see the full extent of what we're facing. Tugboat's history includes periods of language regression, which indicates that he might be in for a major regression in all areas around age two. The doctor was very careful to explain that we might see this happen.

So, here's what we do know: Tugboat is somewhere on the autism spectrum. Where he falls on the spectrum will depend or whether or not he regresses within the next six months or so. The Early Intervention that Joe and I have given him (verbal behavior approach and speech therapy) have made the difference between classic autism and pdd-nos, so far. So now we follow Tugboat down the rabbit hole and see where we land.

Another Reason That Princess Is Awesome

2011-07-20T19:54:00.001-05:00

Charlotte is a very quiet little girl who is profoundly affected by autism and other issues. She is twelve years old, and she attends 'Bot's social skills group. She walked into the waiting room about ten minutes before therapy today and sat down two chairs over from Princess. Her mom and I exchanged greetings, and then I had to step out into the hallway to help with 'Bot, who was crawling on the floor pretending to be a dog (his "go to" schtick when he's feeling nervous).

Anyway, while we were in the hallway, I whispered to Princess, "Why don't you say hello to Charlotte?" Now, you must understand that severe disability is foreign to Princess. She wasn't sure how to approach Charlotte, so I introduced them. Her mom and I tried to prompt them through a conversation, but we were mostly unsuccessful. Charlotte wasn't really up for it today. Her mom and I exchanged "Oh well" shrugs and let it go. Charlotte resumed her quiet sitting, and Princess went back to drawing and coloring.

As the therapy group prepared to get started, Princess approached one of the therapists with a folded up piece of paper. She asked if she could give it to Charlotte. She'd drawn a picture of Charlotte, colored it, and wrote the girl's name across the top. The therapist called Charlotte over and handed her the folded drawing. She opened it and exclaimed, "OOOOOOOOOOOHHHHHHHHHHH!!!" She had the biggest smile on her face, and said "Thank you!" to Princess with tons of enthusiasm.

I am so proud of the compassionate young lady that Joe and I are raising!

Giggling Girls and Therapy Moms

2011-07-13T18:27:00.001-05:00

When Princess was four, she took ballet. Moms had to wait outside in the hallway while the class took place. We weren't supposed to peak, but that didn't stop us from sneaking over to a spot that enabled a view through the small rectangular window in the door. Princess was adorable, by the way.

Today I experienced a little bit of deja vu at Tinkerbell's social skills group. The group was formed by OTs in the practice that 'Bot and Tinkerbell receive therapy from each week. The girls in Tink's group range in age from three to six (there are six girls), and they are all stinkin' adorable. They possess a wide range of disabilities and developmental issues, but you wouldn't have guessed it from the sounds coming out of that room. Squeals of delight, giggles, meows (today all of the activities were animal themed). I stood with two other moms in the hallway, peaking through the window. We were as proud as any group of ballet moms.

"Look at her waiting!!! Waiting is so hard for her!"
"Oh--look! They're playing a game!"
"That's mine, right there--uh-oh, she saw me! Better hide!"(giggles)

We were so proud of our sweet girls. In fact, Tinkerbell was the first to volunteer to pretend to be a cow (puffing my chest out proudly here). As we left there were prompted goodbyes and smiles all around--far more beautiful and enchanting than any ballet I've ever seen.

Tinkerbell with the kitty she made with Mrs. H today!

So Then, What Should I Do?

2011-07-12T12:01:00.001-05:00

Last week, I shared an experience that I had with my son in a grocery store. He had a sensory meltdown, and the adults around us responded inappropriately. That post, which you can read by clicking here, resonated deeply with the autism community because so many of us have had negative public experiences with our kids.

I do not believe that the world is full of heartless people who routinely go around making fun of children with special needs. I believe that many people feel horrified and frightened and confused when they witness an autistic child's meltdown. Meltdowns are violent and frightening if you've never seen one. We see a lot of negative reactions because those who are callous enough to be so cruel are the ones who choose to make their presence known. I'm sure that there were plenty of shocked but sympathetic people standing around that night. They just got drowned out by the laughter of idiots. So, for those who wonder what exactly they should do to help a parent and child in a public meltdown situation, here is a list of things that would be appreciated. I assure you, the small acts of kind strangers touch us deep in our core and can drown out the negativity.

1. Understand Why We're There
Many people might question why a parent would put their child in a situation where meltdowns are likely to occur. There's a couple of reasons why people in our town will continue to be subjected to our presence in grocery stores. First, it depends on the day. Trips to the store don't ALWAYS result in a meltdown for 'Bot. Sometimes unexpected occurrences make a tolerable situation intolerable for him. We don't always know what will cause a meltdown.

However, the main reason I continue to take 'Bot shopping with me is that I have a vision for my child. You see, 'Bot will always have autism. It's not going to just go away. For the rest of his life, every time he goes out in public, 'Bot will be at risk of experiencing sensory overload. I honestly don't know if 'Bot will ever get married, but I do have hope that he will hold a job and move out of our house at some point. He must learn how to recognize when he's becoming overwhelmed and needs to remove himself from a situation. As his mother it is my job to prepare him for life, which means that we will not avoid uncomfortable situations if it's something that 'Bot will have to learn to deal with eventually.

2. Please Don't Start A Conversation
We appreciate help. Really, we do. We just can't talk about it right now. Our hands are full--literally--with a screaming, crying, out of control child, and our attention is 100% focused on him/her at that moment. It has to be. Escape is often our child's primary goal, and if we're in a place where there are cars, a moment's inattention could be fatal.

So, instead of saying,"Excuse me, ma'am, do you need some help?" which requires our attention to shift to you in order to answer, just say, "Ma'am, I'll watch your buggy for you," or whatever. It lets us know that there is a supportive soul nearby, removes just one more worry from the moment, and doesn't require us to formulate an answer.

3. Take Charge Of What We Can't
If my child is melting down, the last thing I'm thinking about is my purse. If you could keep an eye on it, I'd be grateful. If my younger kids are with me, I can't let go of 'Bot and chase them. If you can make sure they don't wander off, I'd be grateful. As a rule, I DO NOT take all of my kids out with me by myself if I can help it. The risk is too great. However, sometimes I have no choice, and sometimes places that we've visited without problems before can be too much on that particular day, and an unexpected meltdown occurs. As the parent of special needs kids, I take every precaution that I can, but sometimes it just isn't enough.

If a sibling is standing there crying, putting an arm around them and saying it's okay would be appreciated.

4. Clear A Path
If I'm trying to remove my child from a situation, you can help by asking others to move out of the way.

5. Carry Something
Push the buggy, pick up something that I dropped while struggling to hang onto my child. Any of that would be helpful.

5. Watch For Traffic
In a parking lot situation, helping me look out for cars would be appreciated.

6. Put Others In Check
If you witness someone being rude or insensitive, speak up! In that moment, I can't defend myself or my child. I'd be grateful for anyone who did.

7. If your child is with you, use the opportunity to teach acceptance and tolerance.
Not everyone feels comfortable stepping in and helping a stranger. That's okay. Ultimately, our kids are our responsibility, and most special needs parents don't expect others to step in. What we do expect is for our kids to be treated with respect and compassion, and that can only happen if you lead your children by example. Don't make snide comments out loud, especially in front of children. Don't roll your eyes at adults standing nearby--your kids see you. If your kids say something inappropriate or ask questions, do your best to clear up confusion. Your children have friends with special needs at school. I've never taught a class that didn't have several kids with differences like ADHD, dyslexia, or some other "hidden" disability. Use that as a starting point to teach your kids tolerance.

One positive reaction can make all the difference to a family struggling with autism. You can be a source of comfort to parents who often feel judged and isolated. I encourage anyone who reads this to make a commitment to be a source of strength, rather than an example of prejudice.

Don't Laugh At Me

2011-07-08T12:09:00.002-05:00

The story I am about to tell you is one of my most painful experiences as a parent. It happened back in December, but it hurt too much to share back then. I'm talking about it now because when it happened, I thought I was the only one. However, this week I read about two other moms who've had similar experiences, so I feel like I need to speak up.

Walmart was crowded that night--very crowded. It was mid-December, just two days before school would let out for Christmas break. 'Bot, Princess, and I were there to pick up a few grocery items and pick out a Christmas gift for each of their teachers. It was something we should've been finished with, but sometimes you get stuck waiting on a paycheck.

We shlugged through the grocery aisles first, so that we could spend our remaining time choosing perfect gifts. The twins were very excited. They both had general ideas for gifts, and I was enjoying their enthusiasm. Unfortunately, it was taking much longer than I expected. The aisles were packed with people, and it took several minutes just to walk from one aisle to the next. It was very uncomfortable for 'Bot, but he was being a real champion. He was self-regulating as best he could, spinning as he walked and clasping and unclasping his hands to keep himself from touching people and things that were off limits. Finally, after what must have felt like an eternity to the twins, my buggy was half-filled with groceries, and we were ready to look for teacher gifts.

'Bot was up first. His teacher was engaged and moving into a new home. After much deliberation and candle sniffing, he choose a beautiful picture frame--silver--and of all things, a pink stapler (because according to 'Bot, pink is her favorite color). His inclusion teacher proved more difficult to shop for, and we spent some time looking carefully before 'Bot's face finally lit up.

"I know!' he declared, and he sprinted off towards the front of the store without another word. Princess and I followed. 'Bot operates under the delusion that everyone else shares his thinking. This Asperger's trait can often be a source of problems, but not that evening. That evening, we simply followed, and we found him in the school supply aisle.

"Mrs. M really loves helping kids learn, so I want to get her these!" 'Bot proudly announced. He was holding a large dry erase board, a pack of dry erase markers, several sets of flashcards, and various other "school" items. While it wasn't the most inventive gift, I figured if the card expressed why 'Bot wanted to give her school supplies, then she would be touched. After all, the highest compliment a teacher can receive from a child is the child's belief that her favorite thing is helping kids learn.

With 'Bot's shopping done, we headed to the book section to find an inspirational book for Princess's teacher. As Princess browsed the books for the perfect choice, I watched 'Bot. He was no longer preoccupied with shopping. His mind had nothing to focus on except everything going on around him. I let my eyes scan the store, and for the first time, I really noticed exactly how much was going on around us.

We were surrounded by a sea of people, all talking--loudly. Bright, colorful displays were at the end of every aisle and in the center lane of traffic. I became aware of the bright lights and constant movement. As I looked at 'Bot, I knew that we were in trouble. His little body was stiff, clearly not relaxed. He started to pace around our cart, his eyes darting quickly from the scene in front of him to the floor. Then, his hands began to flap. 'Bot has stereotypical body movements, like most autistic children, but handflapping is not normally one of them. If 'Bot's hands start to flap, it's a very clear sign that he is extremely overwhelmed. I've seen him do it maybe seven times in his entire life--always in crowded, overwhleming situations. As I watched, 'Bot began to pester Princess to "Hurry Up!" He was becoming irritable. We were headed towards a meltdown.

Now, at this point, I need to explain what a sensory meltdown is for those of you who are not familiar with autism. A sensory meltdown is NOT a tantrum, although it can sometimes be hard to tell the difference. However, tantrums are deliberate. The child is aware and in control of what they are doing, and there is a reason for the behavior. Tantrums can be headed off or stopped, either by ignoring them or giving in (NOT RECOMMENDED!!! LOL). Tantrums serve a communicative purpose--as inappropriate as they are. Autistic kids throw tantrums--lots of them. They have poor impulse control, communication skills, and emotional regulation. Tantrums are a part of our landscape. Unfortunately, so are sensory meltowns.

Sensory meltdowns are brain malfunctions. Autism and Sensory Processing Disorder are by definition, neurological disorders. Scientists are learning more and more about the differences in autistic and neurotypical brains. The brain interprets input from the seven senses (yes, there are seven senses--not five) to help you function in the world around you. In people with autism and SPD, the brain's filters don't work. Their senses take in everything, and their brain does not filter out the extra, unimportant input. In a situation where there's too much input--lots of movement, bright colors/lights, noise--it's very easy for the brain to short circuit and become scrambled.

Autistic adults have tried to explain what a sensory meltdown is like. According to Temple Grandin, the world can look like one big Picasso painting. Just blocks of color that make no sense, disjointed pieces of a puzzle, not connected. When 'Bot was five, he looked at me and said, "Mama, sometimes everything goes like this,"and he shook his head vigorously back and forth. I KNEW in that moment that there was more wrong than just ADHD. Visual perception is not the only sense affected. Sounds all run together, becoming unclear and indistinguishable. Body awareness and their sense of where they are in space suddenly vanishes. They might suddenly feel as if they are falling or floating. They stop receiving input from their limbs--resulting in being unable to walk or balance. The control of fine motor movements may disappear, leaving them unable to speak. Their heart starts to pound. Breathing becomes quick and shallow. Can you imagine how terrifying that is? What's worse, until the brain resets, there's nothing you can do. Once a sensory meltdown starts, it CANNOT be stopped, although the person experiencing the meltdown will try. What they do depends on what their body is feeling at the moment. They might scream over and over, using sound to overwhelm and block out all other input. The might rock back and forth or spin to focus on vestibular input so that everything else goes away. They might hit, bite, or scratch themselves to focus on the physical feeling of their body parts. It just depends on what sense is the easiest for them to access.

Unlike tantrums, meltdowns do not happen suddenly. They are the result of too much input, and that happens gradually--although how long it takes depends on how much input is being taken in from the environment. 'Bot had been trying to regulate his senses for over an hour, and he was losing control. I got Princess's attention and pointed at her brother. She's been his twin for nine years,and she's learned to read his cues. She quickly found a book for her teacher, and we started to move towards the checkout, and I was praying we could escape the store in time. 'Bot was a little bomb waiting to go off. We didn't make it.

As we left the book aisle, and turned to the checkout lane, the front corner of the buggy bumped 'Bot's back. 'Bot's brain tried to process the sudden, unexpected touch and failed. 'Bot looked at me, terror on his face, and collapsed to his knees. He rocked forward, pressing his forehead to the floor, covered his ears with both hands, and started to scream--not cry-- SCREAM.

Now, normally, moving a child who is in the middle of a sensory meltdown isn't the best idea. Your touch and the movement only increases the input they're getting, and you're also adding in a transition to the mix. However, 'Bot's meltdowns average about 30 minutes long. I couldn't let him scream in the middle of the aisle for 30 minutes. We had to get out--immediately.

"Get my purse!" I said to Princess, and I reached around 'Bot's waist and began carrying/dragging him out of the store. He resisted. The movement was too much. He began to kick, cry, and strike out blindly,though whether he was trying to hit me or himself was unclear. He must've realized we were leaving the store because a mangled, garbled string of syllables began to pour out of him. He was unable to actually form words, but he was trying. Most people can't tell that 'Bot is autistic unless they know and are familiar with what to look for, however, in this moment it should have been glaringly obvious to anyone watching that 'Bot had a disability. It should have been.

As we neared the door, 'Bot began to struggle harder. Outside registered with him. Dark. Quiet. Escape. His 75 pound body became difficult for me to handle (I weigh about 130). This was an extremely dangerous situation. In the middle of a meltdown, the brain is not functioning properly, and 'Bot would run right out in front of a car, never realizing the danger.

Finally, we reached the door, and I mustered all of my energy on the fight ahead--holding on to a struggling 'Bot through a dark parking lot. I steeled myself for the battle of getting him into the van without one of us getting hurt. I forced myself to ignore the pain in my shin where 'Bot was repeatedly kicking me. And we got stopped by the greeter.

"Uhm, Ma'am, he can't have that." she said.
"What?" I yelled, stupidly. It was then that I realized 'Bot was clutching a gift card. A stupid blank gift card that he must've latched onto while flailing his arms around the checkout aisle.
"Fine," I said, "you take it from him."

That was when it happened. As the woman tried to grab the card from 'Bot's hands, while trying not to get hit by his wild fists, I heard it. Laughter. From adults gathered around. My son was in crisis--in the grips of a neurological short circuit--a danger to himself--unable to speak--unable to do anything but cry, scream, and fight for his life--and they thought it was the funniest thing they'd ever seen.

To this day, their laughter still rings in my ears. My child was hurting, and they laughed at him.

I could tell you how sad I was that their teachers never got the gifts the twins picked out with love. We had to just leave our buggy--groceries and all. Joe went back later and bought generic gifts for the teachers. I could tell how 'Bot cried and buried his face in my chest the next day when he saw the bruises he'd caused. But none of that hurts as badly as the laughter.

It is never okay to laugh at a child with a disability. And you know what, if you're not sure about what you're seeing, keep your damn mouth shut. Everyone is upset about the death of one little girl,and they should be. It's a tragedy. But how many children are hurt each day by adults who should know better? How can we expect our kids to be accepted by their peers, when their peers are being taught by their parents that laughing at them is acceptable?

Don't laugh at me,

Don't call me names,

Don't get your pleasure from my pain.

In God's eyes

we're all the same--

Someday we'll all have perfect wings,

So don't laugh at me.

Pretend You Kick Me In The Nuts

2011-07-06T18:33:00.001-05:00

Tinkerbell is beginning to develop imaginative play. Parents of neurotypical kids may not understand why this is such a big deal, so let me give you a little background.

Imaginative play begins around 18 months of age. A toddler might pick up a toy phone and pretend to talk on it. A little boy might "drive" a toy car. A little girl becomes the "mommy"of her baby doll, rocking it and giving it a bottle. From there, children enter the world of imagination. A broom becomes a pony. A chair becomes a royal throne, and so on. Imaginative play is extremely important. It builds language and social skills. As children develop they learn to interact with each other through imaginative play. Through interaction they develop social communication skills. One major red flag for autism is a lack of imaginative play. This is often one of the first signs that a child's social development is delayed.

Tinkerbell, at age four, is finally beginning to develop imaginative play. It's happening slowly. She still lines up her My Little Ponies all in a row, but they are beginning to talk to each other. Just the other day, one of her ponies "told" the other to "have your parents go online at pbs.org!" Did I mention that the imaginative play is coming along slowly? Yeah. Anyway, another "game" she likes to play is "Hey, pretend..." in which she says something like, "Hey, mama, pretend like you're the mama and I'm the baby!" Then we exchange a few lines of dialogue, prepared by Tinkerbell, of course. Sometimes she gets it right and we "pretend" that I'm a mama dinosaur and she's a baby dinosaur, etc.

Well, today, Tinkerbell and Average Joe were in the waiting room while 'Bot was in his social skills group--hers had finished right before his started. The waiting room contained three other moms and a a couple of dads. Tink was spinning a big wheel on the wall, and she announced, "Hey, daddy, pretend you're the captain and I'm driving the ship."

"Okay,baby," said disinterested Joe.
"Hey, daddy," said Tink a minute later, "pretend you kicked me in the nuts!"

The moms exchanged looks, and Joe shrugged to the other dad. "She takes after her big brother," he said, somewhat embarrassed.

The other dad just shrugged and said, "Eh. They're all special here."

So they are. Want to help Tinkerbell develop some social skills? Click on the tab above to see how you can help our family win an iPad!

Game/Reality Shows That Would Be More Fun With A Twist of Autism

2011-07-04T18:55:00.001-05:00

1. Jeopardy--Make the topics a bunch of obscure special interests. Let autism parents compete to see who knows the most useless trivia.

2. Nanny Survivor--take the "super nannies" and put them on an island with a bunch of kids with autism. See which nanny cracks first!

3. Hell's Kitchen--a bunch of aspiring chefs have to cook healthy, aesthetically pleasing meals that autistic kids will actually eat. As the number of chefs get smaller, the dietary restrictions increase!

4. Autistic Family Feud--featuring questions like, "Name one non-food item your kid loves to eat."

5. Don't Forget the Lyrics!--Contestants sing the favorite songs of verbal stimmers, and the winner is determined by who can get through all the songs without causing a meltdown due to forgetting the words.

6. Biggest Loser--put all contestants on the GFCF diet, and have them workout by keeping up with auties who also have ADHD

7. Wheel of Fortune--what autistic kid wouldn't love spinning the big wheel or assisting Vanna?

8. Who Wants To Be A Millionaire--instead of friends and family, contestants are given a list of autistic kids with different special interests to phone for help

9. Hollywood Squares--the panel consists of at least one person with autism

10. Supermarket Sweep--contestants must complete their shopping trip with an autistic child in tow

11. The Amazing Autistic Race--contestants complete a list of errands in New York City, taking an autistic child with them.

12. The Real World; Autism

13. Any competition show, such as American Idol, etc.--have a group of very honest Aspies as judges; laugh at the contestants as they cringe in the face of such brutal honesty.

14. Kate Plus 8--replace three of her sextuplets with autistic kids the same age. Watch the meltdown begin! (Kate's, not the kids)

15. Click on the tab above to help our family get an iPad! Really. Do it.

Room Swap

2011-07-03T14:06:00.001-05:00

****PLEASE VISIT THE TAB ABOVE TO SEE HOW YOU CAN HELP US WIN AN IPAD!

Princess came to us last night and declared, "I want a new bed!" Now, as I stated in my last post, Tugboat is our only kid who actually sleeps in his own bed, so why Princess was suddenly so adamant about getting a new one didn't make sense. I mean, she sleeps with 'Bot anyway (and before you say anything about them being nine and how that's not appropriate--YOU come over at bedtime and try to separate them, mmmkay?). Further discussion revealed the true reason for her discontent: floor space. Princess has a full-sized bed in a fairly small room. She wants a daybed that will take up less space. That makes sense, but buying a new bed for someone who won't sleep in it isn't exactly a high priority around here.

Instead, Joe suggested that she and 'Bot switch rooms. Their rooms are the same size, but 'Bot has a bunk style bed with a mattress on top and a futon on bottom. That would give Princess a bed, a couch to sit on, and more floor space. Sounds good, right? Eh, maybe not. 'Bot's room has lived through nine years of autistic meltdowns and tantrums. The walls have holes, the wallpaper is peeled off by his sleeping spot (bedtime stimming), and we recently removed the door because of safety concerns--oh, and there's also a colony of ants that think it's a spiffy place to live thanks to all of the snack wrappers, etc. I really thought all this brainstorming about the switch would be for naught. I was sure that 'Bot would never agree to swapping rooms. However, in a rare moment of twinship compassion, he said, "Sure. Okay." WHAT????

So, today the big move is in progress. Ironically, Tinkerbell is the only person who had any problem with it. She keeps asking why Princess wanted to change rooms. I sent her to Princess for an answer. You're welcome, sweetheart! (Revenge for something I'll have to blog about later--let's just say that Tink has a certain "trigger" that Princess likes to set off just so she can laugh at me having to deal with it--nothing traumatic, just a certain name we can't say because it sets off an endless round of questioning from Tink.)

The movers

In progress

It's harder than she thought it would be.

The hired help?

Book break!

She removed this sign and realized she no longer has a door!

Easily distracted

So, now it's almost done, but questions remain. Will Joe be able to rehang the door he took down? Where will the displaced ants go? Does Princess have enough Taylor Swift posters to make up for the missing wallpaper? Stay tuned!

Help Our Family Win An iPad

2011-07-01T20:18:00.001-05:00

Please click on the tab above to learn how you can help this crazy clan win an iPad!

In This House

2011-07-01T08:39:00.001-05:00

No children's clothing is bought without being tried on first.
Get that out of your mouth is a common expression.
No means no...except for when it doesn't!
Some people believe that even imaginary drops of water/drink/crumbs will initiate the apocalypse.
Hugs and kisses are barely tolerated by some, outright rejected by others, and forced on you by everyone else.
Little girls hate having their hair brushed.
Little boys don't have enough hair to brush.
Something's wrong if someone is not having a tantrum.
Nick Jr's always on.
Optimus Prime is important.
So is Bumblebee.
Mom and Dad can't walk into the kitchen without the baby throwing a fit. Seriously.
If you're upset, assuming an upside down position is the perfect way to show it. So is taking a bath--even if it's your third one of the day. Biting your toes is also a great stress reliever.
Pointless routines are the norm.
Mom hasn't peed in private in nine years.
Fruit loops are always on the floor.
At least two people are pacing for no apparent reason at any given time.
You can tell who did it by how the mess is lined up.
Open doors remain open and closed doors remain closed--always!
Some of the walls have holes.
Some wallpaper has been methodically peeled off.
If mom's hair is down, one of us sees it as hours of entertainment.
Some people's lines of toys should NOT be messed with. For others, it's okay to clean them up.
Someone only eats cold things.
Someone only eats soft things.
A couple of other people won't eat anything green.
The baby is the only child who actually sleeps in his own bed.
We have a few insomniacs.
Some of us have to be walked through how to fix a drink or a sandwich step-by-step.
One of us is responsible beyond her years.
Some of us like to spin.
One of us can't stand rubbing a towel over his skin. He never dries off after a bath--air drying RULES!!!
We love each other--quirks and all!

It's Not Vacation Until The Cops Get Called

2011-06-26T22:03:00.003-05:00

Me and my Daquiri

It didn't start well. We were about to head out on a week long trip to Galveston, doing our walk through to make sure everything was okay, when we smelled something burning. It smelled like Joe had turned on the heater instead of turning down the air. He didn't, so we checked the central air unit and found it smoldering. I shudder to think what would've happened if we'd actually left on time, or worse yet, if the part that was burning had started while we were sleeping. Anyway, as I'm typing this it's hotter than the armpit of hell in here (just think, we went to South Frickin' Texas to escape the heat), so bear in mind that the writer is blogging under duress. Thankfully, Cousin John Who Repairs Air Conditioners is here to work on it. So, between sponging down the kids with cold water, I'll tell you about our vacation--as my title suggests, it was quite eventful (see how I made you want to read more? Even dying of heat stroke I'm on my game!).

Once we got on the road, we did okay. Here we are eating lunch.

Tugboat the Terrible--don't let the smile fool ya!

The Other Three

Tinkerbell got a little twirly and flappy in DQ, and this rude lady and her equally rude child stared at her, and I got annoyed, but then I got over it.

We stopped in Beaumont to visit these relatives:

Aunt Darla and Uncle Bob are awesome, and they love the kids, so that visit was great.'Bot had a meltdown, and it didn't phase them at all! Their son, Cousin Rusty, and his wife Cousin Angie were fabulous and made us very welcome.

The vacation was humming along swimmingly. The kids played on the beach. Mama Apples got her drink on (though not too much!), and we enjoyed our rented beach house, courtesy of Aunt C. We were with my mother-in-law (I promise not as bad as that sounds--she's great!), my husband's sister and her 21 year old son Jamie and nine year old daughter B (Princess's BFF--or as they say, Cousin By Blood, Best Friend By Choice), and my other sister-in-law C and her two kids--Cousin K and Cousin J. Oh, we also had 90 year old Nana with us! That's a lot of people in one house, and 'Bot doesn't always gel with cousin J, who has ADHD himself and isn't content to let 'Bot be the boss of everything (go figure). I'll get to what led to the cops being called in just a sec. First you have to look at pics of the kids on the beach!

On Thursday, Joe and the kids, along with my sisters-in-law and their kids, went to Schlitterbahn Water Park. They had a blast, but it was a long day, and the kids were worn out. 'Bot had a meltdown that evening--though honestly, it wasn't even a bad one. Joe and I brought him outside so that the rest of the house didn't have to suffer the screaming. We had him on the back deck in a wooden chair, and he kept slapping the arms of the chair really hard. He was also screaming and crying. At one point, after he started to calm down a little, he looked off into the sunset and said, "Nobody understands me." It really broke my heart. About five minutes after we went back inside, a sheriff knocked on the door. A neighbor had called to report a child screaming. Luckily, we got a sheriff with an autistic nephew. He only stayed a minute, and he apologized for having to come at all. It did make me think about all the families whose kids aren't verbal enough to say, my parents didn't hurt me and I'm okay. Especially the next day when Tinkerbell threw a screaming fit because she didn't want to get off of the ferry. If some of the staring strangers had reported us then, she'd likely scream NO NO NOT MY MAMA!!!! I NOT OKAY!!! What do you do in that situation?

Tinkerbell also burned her foot. We were on the beach at night, looking for seashells with flashlights, and she stepped on a still smoldering cigarette. Joe saw her approaching it and yelled, "NO! STOP! STOP!" Tink didn't realize that he was talking to her because in his panic, he didn't say her name. The urgency didn't make her pause. The fact that he was looking at her didn't register.

Aside from those things, tans were gained, books were read, and fun was had. Hopefully we'll get to go back next year!

Twitter's Biggest Loser

2011-06-18T16:58:00.002-05:00

I decided that I needed to join twitter.

I don't know what the hell I'm doing.

Help.

Things Heard Around the House Today

2011-06-16T13:42:00.000-05:00

Mama Apples: "NO, 'Bot--NOT BY THE HEAD!!! Do NOT pick your sister up by her HEAD!" (Accompanied by Tinkerbell's muffled squeals)

Tinkerbell: "'Bot,are you my fiend? Do you love me? Are we fiends?" (He didn't answer.)

Tinkerbell: "Bot licked me!"
Me: "'Bot, don't lick your sister." (I look over and see Tink happily licking her own arm.)

'Bot: "Stephen Spielberg eats babies--whole babies!" (echo from an interview with the cast of Transformers--'Bot says this completely at random about every two weeks or so)

Me: "Do you want oatmeal?"
Tink: "I doan WANT oatMEAL!"
Me: "Do you want grits?"
Tink: "I...NO GRITS!" (cue distressed handflapping)
Me: "So, no oatmeal and no grits."
Tink: "oatmeal"
Me: :"You do want oatmeal?"
Tink: :"No....oatmeal" (I walk to the kitchen.)
Me: "Do you really want oatmeal?"
Tink: "I DON'T WANT OATMEAL!"
Me; :"No oatmeal?"
Tink: "YES!"
Me: "Yes you want oatmeal?"
Tink: "NO! YES!" (cue headbanging--me, not her)

Me: "PUT THE NIPPLES BACK AND LEAVE THEM ALONE!" (I'd explain, but...nevermind)

Tinkerbell: "ahhhhhhhhhhhhhhhh" (repeat about 45 times)

Tugboat: "ahhhhhhhhhhhhhhhhhhh" (repeat about 20 times)

Bot: "I like to POOP IT!" (not sure what "it" is or why he likes to poop it, but there you go)
Tinkerbell: "Mama, 'Bot said poop it!" (as if I could've missed hearing him yell it out)

And just think--it's only 1:40!

I'm At The Shift Journal Today!

2011-06-16T04:39:00.002-05:00

Last week I was contacted by Shift Journal of Alternatives:Neurodiversity and Social Change regarding my post, "A Strange Encounter". I was unfamiliar with Shift Journal, but it's definitely worth reading, especially if you're looking for writing that challenges your thoughts about autism and acceptance. Shift Journal accepts submissions, so head over there and see me featured there today, and if you're a blogger, consider submitting!

Grandma Kicks Baby

2011-06-14T09:08:00.000-05:00

I knew that title would grab your attention!!! "Grandma kicks baby" is NOT, fortunately, a local news headline. It IS a video on YouTube. Several, in fact. Princess and Cousin B came across it, and they shared it with 'Bot. Since Tinkerbell follows 'Bot EVERYWHERE, she also watched it. Cue my current annoyance.

All of the kids thought it was funny. Joe and I even chuckled at it the first time we saw it. The big kids got over it after the first thousand viewings--even 'Bot's perseverative little self is over it. Tinkerbell, however, is all-out obsessed. For the past four days, she has asked to watch it over and over and over and over....Get the idea?

I've said no to it enough that she's beginning to get a little devious in her asking. Here's an example.

"Mama." (I'm reading and don't immediately respond.) "MAMA!!!"
"What?"
"You not ask right!" (Tink is VERY specific in how you should respond to her.)
"What do you want, baby?"
"Uhm, can I go in de udder room on de coputer and watch a kid show?" (I should note that Nick Jr. is on tv as she speaks.)
"What do you want to watch?"
"Uhm, maybe a show wit a grandma?"

Nice try little girl. Nice try.

A Window To Crawl Into

2011-06-12T21:18:00.001-05:00

The window.
The window.
The window.

Anyone who has a child with autism has heard about The Window. It's this small window of time that you have to pull your child out of autism. It's the belief that if you catch it early enough, if you do all of the right interventions (though no one seems to know what the "right" interventions are), if you sacrifice your very soul, then you can "save" your child--though from what I don't know.

I've been thinking about this "window" a lot lately. We are watching the symptoms of autism emerging in Tugboat a little more each day. His language has not grown at all in the past few months. He no longer consistently responds to his name--in fact, he's responding less and less. Eye contact is non-existent up close, although he does look into our faces from across the room. He has begun obsessively lining up cars and video tapes. He's at the age where imaginative play should be developing. It isn't. It now takes work to engage him, and the amount of time that we're able to engage him seems to be getting shorter and shorter.

I do not really believe in a window out of autism. However, I do believe that there is a window into a child with autism. Well, any child, really. With 'Bot it was railroad track engineering. When he was three, all 'Bot was interested in was train track. He would ignore the world and everyone in it for hours at a time. We didn't know anything about autism, but my husband desperately wanted a connection to our boy, so he did the only thing he could do--he dived into the world of train track construction. 'Bot guarded his window pretty carefully. You might even say it was painted shut. He'd let us look in, but it took a chisel, hammer, and quite a bit of time for my husband to open the window far enough for us to crawl in. Once we did, though, we found a brilliant, loving, beautiful little boy.

With Tinkerbell, it was music. She is very musical and loves to sing. I've made up tons of silly songs that she requested for me to sing over and over. Princess used music and dance to interact with her as well. Tinkerbell's window was easily opened. However, she still has stormy moments, like when I drop her off in the morning, when she slams her window shut. It doesn't stay closed for long.

So, now I find myself thinking about Tugboat's window, and how long it might take us to find a way to pry it open. I have no desire to try to change him and make him into a typical child. I just want to be able to crawl in and share his world for awhile.

Tubes For Tugboat

2011-06-09T09:07:00.000-05:00

Tugboat got tubes in his ears this morning. Here are the highlights.

Pre-surgery entertainment.

Why are you doing this to me?

If all I have to do is wear a dress, it MIGHT be okay.

That nurse chick is kinda funny.

He had a few quiet moments with God.

If anything goes wrong, dad can have my cars.

Playing with his cars for entertainment.

Then they gave him the magic Kool-Aid!

Uhm, I'll have what he's having!

Here's a video of doped up Tugboat! Enjoy!

Picking Up 'Bot

2011-06-08T14:42:00.000-05:00

Camp Rainman is over. We arrived at 8:30 this morning for the closing ceremonies. 'Bot didn't rush the car in relief this time, but I did get a reeaaallly tight hug! I promised a report on how camp went, so here's what I know based on 'Bot's sketchy stories and what his counselor told me.

Day 1
'Bot had two counselors this year--Hunter and Holly. He seemed pretty satisfied with them when I left. The camp's theme this year was "The Wild West." The kids got to ride a mechanical bull, which 'Bot really liked. He got to keep a framed picture of himself on the bull. The kids also got to shoot a BB Gun at a balloon target. The prize for hitting the target was a water gun. All of the kids ended up getting one. Holly told me that 'Bot got really frustrated that he couldn't hit the target, but once he finally did, BB Gun shooting was ALL he wanted to do. Oh, he also enjoyed riding the golf carts. That evening they boarded a bus and went out to eat at a steakhouse in town. They had a room to themselves, and we had pre-ordered the meals, so the food was ready when they got there--no waiting! (How awesome is that?) For some reason, over the course of the day, 'Bot developed an aversion to Hunter. No one is really sure why, but by the time they got to the restaurant, 'Bot wouldn't allow Hunter anywhere near him. So, Hunter was reassigned to another camper, and 'Bot was happy with just having Holly.

'Bot and Holly

Day 2
Yesterday, the group traveled to a corn maze. All I got from 'Bot was that it was fun. He also said he got to spend a lot of time with R. Apparently he did have a minor tantrum, but Holly said he got over whatever it was quickly.

Closing Ceremonies
The closing ceremonies for camp are really nice. Each cabin mom says a little about the group as a whole, and then each camper and counselor are called forward one by one, and the counselor tells about their favorite experience with their camper. These counselors are very special. Most of them are high school seniors. They volunteer for camp for a variety of reasons. Some of them have a sibling or cousin with autism. (Holly has a cousin who is autistic.) Some of them are interested in careers in special education, occupational therapy, or speech pathology. Others just hear about the camp and decide that they'd like to be a part of it. Many of them come back year after year because they love the kids so much. One counselor who spoke today had been coming to camp for several years. She always had the same camper, and her favorite experience this year was this: they were walking to breakfast, and she asked him, "How are you today?" He replied, "I'm good. How are you?" It was the first time he'd ever asked her a question. Amazing, right?

Each camper was presented with a bag o' stuff, and 'Bot couldn't wait to open his. They also planted a daisy in a pot at some point this week, and 'Bot was very proud of it. His favorite thing, though, is his medal of achievement. He pinned it to his shirt and is still wearing it. Again, that sense of accomplishment is priceless.

As we were getting ready to leave R and his mom came to say goodbye. 'Bot reached out to give a hug, but R stuck out his hand (which is the opposite of how they usually are) and said, "Well, this is goodbye!" It was cute.

The BFFs' sad farewell!

'Bot also bid another little boy goodbye and see you next year. I was so happy to see him with friends.

So, now that we're back home 'Bot is transitioning. He's a little stimmy and irritable. He doesn't want Tinkerbell to touch him. But that will only last a little while. His camp memories will last forever.

Summer Camp For My Son With Autism

2011-06-06T15:55:00.001-05:00

When I was a teenager, I attended church camp every summer. It was an all girls camp, and it provided a week of scripture study and the beauty of nature. I've always felt at peace in the woods. The quiet and the smell of pine trees can bring me closer to God than even the most passionate sermon. But in spite of the spiritual nourishment and the joy of the outdoors, I always had mixed feelings about camp. I always felt a disconnect with the other girls. I didn't connect well with my peers. I could never be sure if they liked me or not. Those looks they would give each other--what did they mean? Were they joking or being cruel? So I just told myself that of course they were joking, because you couldn't be mean at church camp, right? And I let them walk all over me, because I was quiet and naive. I didn't understand the rules they played by. I didn't understand how they could be mean to someone because of how they dressed or looked. And so my camp experience was a little soured. However, even now, the smell of insect repellent and sunscreen, mixed up with chlorine and pine makes me a little nostalgic for that camp experience.

Today I brought 'Bot to camp. He's not attending church camp. I don't know that he ever will. He is attending Camp Rainman. Camp Rainman is sponsored by our local Autism Society of America chapter and several businesses. The camp is totally free for kids on the spectrum, ages 6-17. They provide the kids with the traditional camp experiences such as crafts and swimming. They also have a video game room and a large jumping tent for those times when you just need to JUMP!!!! On top of the traditional camp experiences,however, they also try to provide the kids with experiences that may not otherwise be possible for some of them: trips to a museum, a movie, dinner out at a restaurant, and this year they're going through a corn maze.

The coolest thing by far is that these folks understand autism. They use picture schedules. Communication devices? No problem! GFCF diet? You're covered! Enough medicine and supplements to run a pharmacy? No biggie. It's awesome. 'Bot was as scared as a cat in a bathtub last year. The sense of accomplishment he got from finishing camp was truly incredible. He was so excited to go this year, and his BFF, his teacher's son R, who also has Asperger's went too. In true aspie fashion, they greeted each other, and then went their separate ways. However, I'm sure they'll be driving their counselors nuts in no time. 'Bot has come a long way in his ability to make conversation this year, so I'm hoping to hear all about it! In the meantime, I'm twiddling my thumbs in a house that seems oddly empty, but happy to see 'Bot have a camp experience that may be nontraditional but an important part of his childhood experience.

Summer For A Special Needs Mom

2011-06-03T20:57:00.000-05:00

Like most teachers, I am on an end of the year high right now. No papers to grade! No lessons to plan! My house will be clean--er, maybe! I get a couple of months to spend at home being the SAHM that I wish I could be all the time. However, as a teacher with kids who have special needs, my summer is the one time of the year that I can work with them intensively on the things that we need to address, as well as taking care of my personal needs that get neglected during a busy school year.

Princess excels academically, but she will be attending church camp with her cousin K, so that she can enjoy being with other girls and have a break from the autism nut house. A vacation from the spectrum for her. I must also be sure to pencil in a couple of "Girls Day Out" days for the two of us. What I'm most excited about for her though, is a summer music/art program being offered in our community. It's being run by a nonprofit group in our area, and Princess can take voice lessons there. I don't know if I've ever mentioned it before, but Princess has a beautiful voice. It's a natural talent that I'd love to see her cultivate. She loves to sing. That is her special need. Being "neurotypical" doesn't mean that she is a "typical" child by any stretch of the imagination.

Poor little 'Bot has a HARD summer ahead of him--he just doesn't know it yet. He needs help in writing and math in order to make it past the standardized tests. I can't bear the thought of Princess moving on to fifth grade and him having to stay behind. I also want to start teaching him how to type. He's been doing Writing Without Tears, but there hasn't been a lot of progress. The actual mechanics of writing are extremely difficult and discouraging for him, and while I know that we must continue to pluck away at it, I want to give him an alternative. I'm hoping that removing the fine motor component will make it easier to instruct him on the grammar and other issues he's having with writing. For social skills 'Bot will be participating in a social skills therapy group this summer, and we're going to continue the work that was started with him at school this year. He's also attending Camp Rainman again this year. He's leaving on Monday, so for three days next week I'll be a mess! Finally, I want to work on his anger response. I have a plan in mind, and if I see it working, I'll be sure to share!

For Tinkerbell, Preschool readiness is my focus. Since she'll be going into a typical K4, we have some preparedness work to do! Up first, my ongoing struggle to get her to go to the bathroom by herself. We're making progress, but she'll have to do better with it before she starts school. She's also doing a social skills group this summer, and she and 'Bot are also continuing OT. Language and fine motor work will continue as well.

With Tugboat communication and language will be our focus. He will continue speech therapy, and I hope that working with him consistently will help him move forward. He's using more and more nonverbal communication, which is disappointing to his therapist, but I'm happy to not have to strictly rely on guessing! We're also starting to hear more actual babble from him, so I know that language is emerging in him, however slowly. He's getting tubes in his ears on Thursday. He's also slated for an autism evaluation in July.

As for me, I'm hoping to take a couple of professional development classes, get a complete physical checkup, quit smoking, and find some time to relax--not necessarily in that order! How's your summer shaping up?

A Strange Encounter

2011-05-29T11:57:00.001-05:00

A stranger observed the playground. The scene was perfectly normal and just a little bit odd at the same time. It was a bit too quiet for a playground filled with so many children. A nine year old boy walked around the grassy area, away from the jungle gym, his nose buried in a cell phone, uninterested in the play equipment. His four-year-old sister paced across the jungle gym bridge, dragging the toe of her left foot every third step, and stomping quite a bit more than was necessary. Her pounding footsteps and quiet mutterings to herself were the only sound.

An older girl, well, the stranger assumed she was older, as she seemed to possess an inner calm not present in the other children, stood at the bottom of the jungle gym, watching her little sister and occasionally taking a swig from her water bottle. From her position under the play equipment she could clearly hear the younger girl's mutterings, and she would occasionally smile over at her mother as if the little one had said something particularly cute. The mother was in a swing, a toddler on her lap. No squeals of glee from the baby as the swing went higher and higher, but his little arms flapped up and down occasionally, as if the child was imagining himself a bird about to take flight.

The observing stranger also watched the only other family at the park. A couple sitting on a bench, watching their children play. The stranger noted the tension in their posture. No smiles. They were on full alert, although he couldn't understand why. Their three children were nowhere near the others. Their oldest little boy, perhaps around age seven or so, was trying to hit a ball off of a tee. His cries of frustration when he missed were soothed by his father's calming voice. With determination, he would put the ball back on the tee and try again. At their feet sat two younger children. A boy around the age of five, and a girl around three. They were coloring the sidewalk with chalk, and the stranger couldn't help but notice the intensity of the little boy's concentration. How he didn't seem to be aware of anything around him. The stranger might have pondered this intensity, thinking that it seemed strange, but not able to really pinpoint why. He wouldn't have to wonder for long. In a flash, the little boy emitted a high pitched squeal and ran straight towards the older girl on the playground. Time slowed to a crawl as the parents flew into action, desperately calling the little boy's name, which he ignored, and running after him, but not in time to stop him from trying to pull the water bottle out of the little girl's hand.

The stranger thought the parents were incompetent. They didn't reprimand the little boy. Instead, the mother said, "Time to go!" in a voice that sounded cheerful, if a bit forced. The stranger felt disappointed at the apparent lack of concern for such appalling behavior from a child who was clearly old enough to know better. He felt a trill of anticipation, however, when the mother of the wronged child fairly flew off of the swing and ran towards the departing family--clearly, she intended to instruct the other woman on how to properly instruct her thoughtless child. "WAIT!" she cried, the plea pulled from her almost unwillingly, without premeditated thought.

"Your son...I heard him squeal. Is he...?"
"He's autistic," she replied.
"Please don't leave because of us," the swing mother said. Inexplicably, her eyes swam with tears. She gestured helplessly to the children on the playground. "Mine are too." The stranger watched as the little boy's mother surveyed the other mother's little girl and oldest little boy as if seeing them for the first time. He held his breath as her eyes took in the toddler in the mother's arms, who was staring at a patch of grass off to his mom's right, completely oblivious to this new woman in front of him. "I promise, there's nothing he can do that we would be offended by. It's really okay!" There was desperation and pleading and reassurance in her voice all at once, as if what mattered most in the world to her was that this mother and child feel welcome and accepted.
"There seems to be more and more of us," the other mother replied. "They'll be okay," she said, though whether she was talking to herself or the woman in front of her was unclear to the stranger. The two women shared a look that transcended words,and he knew that they were at once strangers and sisters, bound together by a journey that few would understand. Shared experience hung heavily between them for a moment.
"I just don't want you to think that you have to leave because of us."
"Oh, no...We've been here a while. He must be thirsty." And with that she walked away. The stranger watched as the remaining mother resolutely refused to look at the other family, the father struggling to buckle the little boy into his carseat. They got enough stares from everyone else.

A Man With A Plan

2011-05-23T16:44:00.002-05:00

The school district finished their evaluation of 'Bot, and we got the results today. They qualified him for Special Education. He lacked one communication deficit from qualifying for the diagnosis of Autism, but they labeled him with Asperger's, ADHD, and OCD. I don't care what they call him, as long as he gets the help he needs! We will develop an IEP for him over the summer, and it will be in place when school starts next year. I feel like I've fought a two year war and FINALLY achieved victory!

I Need Some Advice

2011-05-18T18:06:00.000-05:00

I have a question for those of you who've been through speech delay with a young toddler. At what point does it go from "stubbornness" to "I can't do this right now?" My husband held a screaming, crying, tantrum throwing Tugboat for an hour and a half today, trying to get him to make the "d" sound to signify that he wanted down. Tugboat is capable of making that sound, but he will not do it to signify that he wants down. The therapist said to make him do it. The same therapist also said he's just being stubborn. What do you guys think? Persevere or give in after a certain point? Is this a stage? How long does it last?

The Speech Therapist and Tugboat: A Love Hate Relationship

2011-05-16T16:05:00.001-05:00

Read the shirt, people.

It started out so well. When Cynthia, Tugboat's new speech therapist, walked in he walked right up to her and wrapped his arms around her legs in greeting. I was shocked. The child doesn't even greet me like that. He even showed mild interest in the toys she brought with her. After a few minutes, he ran and got his batteries to bring to her (yes, his favorite toys are AA batteries). He takes them out of the remote and packs them around until we notice and make him bring them to us. I took it as a good sign that he brought them to her before he got into trouble. I figured that must indicate at least a desire for friendship with her. I was wrong. One hour and at least seven tantrums later, I was left wondering how it went downhill so fast. Of course, Cynthia took it in stride. As for Tugboat, he was as happy to see her go as he was when she arrived.

Tinkerbell's Journey

2011-05-14T16:53:00.000-05:00

Today is Tinkerbell's birthday! She's now four years old. Below is her story, told in verse.

Tinkerbell's Journey

She entered the world in an unusual way,
Sunny Side up is what the doctors say,
And we knew from the moment that we heard that first scream
That she'd be a real diva, definitely a queen.

She'd only let me or my mama hold her,
she gave her poor daddy a tiny cold shoulder,
but after we discovered a milk allergy,
she was as happy as a baby can be.

From the beginning there was something not quite right,
At two weeks old she slept through the night.
She wasn't a baby always wanting to be held,
She could play by herself exceptionally well.

Everyone mentioned what an angel she was,
She didn't pester the sitter for cuddles and hugs.
If another child took her toys away,
She didn't seem to notice, she had nothing to say.

She met all the developmental milestones on time,
Her big brown eyes sparkled, oh how they shined!
We were delighted to hear her talking away,
We were very surprised by the things she would say.

But something went wrong around the age of two,
And mommy and daddy weren't sure what to do.
The happy little girl that they'd known for two years,
Was suddenly always bursting into tears.

This really was more than the Terrible Twos,
She didn't cry about the things that normal kids do.
The broom's laying down--it should be standing up!
The cabinet is open--it's supposed to be shut!

She did not play the way other girls play,
She'd line her dolls up and leave them that way.
She didn't pretend to talk on the phone,
And most of the time she wanted to be left alone.

She liked to spend time opening and closing doors,
And spend lots of time watching shadows on the floor.
Walking in circles became lots of fun,
Up on her toes was how it was done.

And then all those words she'd spoken so well,
Became hard to decipher; her articulation fell.
And finally words starting slipping away,
She couldn't remember them all day to day.

She couldn't answer the questions we asked,
It seemed like she was slipping away so fast,
The precious baby we'd brought into the world,
Was now a very fearful little girl.

She'd cover her ears when the vacuum was cleaning,
Lots of sounds could set her to screaming,
Her tolerance for change in routine took a vacation,
And going to sleep required medication.

And finally we could deny it no longer,
The feeling in our gut was getting stronger and stronger.
Her brother has autism, so could it be true,
That our little girl has autism too?

We decided to take her to a doctor in town,
To have her evaluated and see what would be found.
Seeing the word AUTISM there on the page,
Was a moment I can still feel to this day.

But that's not the end of the story, you see,
That little girl is more than just PDD.
Though she answers to Tinkerbell, she's spunky and tough,
And to overcome challenges, her will's strong enough.

Her speech started improving, all on its own,
And in the past couple of months her imaginative play has grown.
She's coming back from her initial regression,
Her spirit is no longer in a recession.

Purple is her favorite color
And she loves her daddy more than any other.
She likes to clown, she really is a goof,
And her energy level is way through the roof!

She inspires me each day to hang on a little longer,
The struggles you face can only make you stronger.
And when her challenges make me sad,
Her beautiful smile says it's not so bad.

I love you,sweet baby,
You are my heart.
Thanks for the wisdom you sweetly impart.

Eyes Wide Shut

2011-05-10T21:26:00.000-05:00

Have you ever arrived at a destination only to realize that you don't remember a huge chunk of the drive? Somehow, on autopilot, you've safely navigated your way, even if you didn't consciously realize what you were doing? Well, Average Joe and I have apparently been navigating our way through the past year and a half, and we've arrived at destination No Services For Tinkerbell--and I'm okay with that...I think.

I took Tinkerbell for a screening with the local school district last Thursday. They screened her for developmental delays, and found that despite her need to spin and flap, she is verbal enough and cognitively advanced enough to not qualify for services at this time. Now, I was really ticked off at first. I don't believe that a simple developmental screening to determine services for a child with autism is appropriate. It doesn't take into account the sensory and social issues that make typical classrooms so difficult for autistic children. Since Tink could repeat sentences, tell what was happening in some pictures, copy most of the shapes, name most of her body parts, and she knows her colors and can count to ten, then she must be totally fine. However, God slapped me in the face this morning, and I think now that I'm good with their decision.

I was in the cafeteria paying for the twins' lunch, and a code red was called. Code Red means that the school is in lockdown mode. The SPED Preschool class was returning from the library when lockdown was called, so the closest place for them to go was the cafeteria. So, I got to spend twenty minutes with them. I held hands with a little boy with cerebral palsy who seemed to take an instant liking to me. I talked with the teacher about Tink and her autistic students. And I realized while I was sitting there how much of a bubble I sit in. I don't stop to think about how many kids need services, and I realize that I've been viewing Tink where she was a little over a year ago. At the bottom of her regression, Tink couldn't answer questions, was terrified of my cell phone, used echo and script about 70% of the time, and threw tantrums at the drop of a hat. But she isn't in that place anymore. She has come miles in the past year. She has regained tons of skills. Does she still have the challenges of autism? You bet. But her challenges are not insurmountable. And she has two parents who are aware of her needs and are willing to put in the time necessary to help her reach her potential. She's gonna be okay. We'll get her into K4 and go from there.

Pulling My Bra Out Of the Fire

2011-04-30T11:00:00.001-05:00

I wrote a post recently about how overwhelmed I was feeling about everything I have to do as a wife, special-needs mom, and teacher. Autism moms support each other, so I expected to hear a lot of "Hang in there," and lots of internet ((((hugs)))). What I got, however, in addition to all of that, was a lot of OHMYGODMETOO!!! It seems that there are a lot of moms out there feeling the strain.

I don't believe that I've ever heard anyone say that motherhood is easy. However, no one really knows how tough it can be until they're in the trenches. We've all heard about the first few months of motherhood. Everyone expects you to have bags under your eyes, carry a little extra weight, look a little or a lot frumpy, and kinda smell funny. But then you're expected to get over it, pull yourself together, and become supermom.

For most of us, this just isn't realistic. For special needs moms those sleepless nights and early days strains never really end. Many kids with special needs require around the clock care. For example, one common trait of autistic children is trouble sleeping. Yet, we still seem to labor under the delusion that we can be sleep deprived and still function at top notch.

The worst thing is that other mothers make it even harder. There's so much judgement among moms. If you're a stay at home mom, you're expected to be able to single-handedly run the PTA, bring homemade snacks for every ball game, have a spotless house, and God forbid you complain about how hard the job is.

Working moms have to deal with snide comments about not being involved enough, struggle to balance a job with home responsibilities, and oh yeah, you're supposed to always look satisfied and pulled together. It's enough to exhaust anyone, and that's not considering the added responsibility of those of us who have kids with special needs. We seem to have this idea that we can be the perfect fifties housewife and the does it all Wonder Woman at the same time. Well, I don't know about you, but I left my big flashy W in my other bra.

Now, I'm not trying to ignore all of the dads out there who are equal partners with their wives. Heck, my husband's one of them. But men aren't laboring under the guilt of letting down a whole generation of people. After all, nobody burned their bra so that men had the right to work.

Besides all of that, those of us with kids who are, shall we say, a little more high maintenance than most, have to deal with the patronizing comments of well-meaning people. You know the ones, right girls? The people who say, "Oh, God wouldn't give you more than you can handle." Really? Because right now, my arms are covered in bruises and a couple of bite marks courtesy of one kid's sensory meltdown, another kid's hiding under the table screaming with her hands over her ears because her brother touched her line of toys, and I just spent an inordinate amount of time trying to teach my toddler how to point at what he wants, but since God doesn't give us more than we can handle, there must be something wrong with me, right?

So, if you're feeling overworked and overwhelmed, what are you supposed to do about it? Well, I don't have a magic solution, but I invite all of you to give your granny panties a tug and check out my plan, unless of course, you're choking on a bonbon, pulling a child out from under a bus, or organizing a summit of world leaders. If that's the case, carry on with that instead.

Step One--Admit That You Don't Have Superpowers
You are human. Period. You need sleep, proper nutrition, and some time off occasionally. You cannot run yourself into the ground and expect to be happy and on top of your game. You need to say loud and proud that you cannot do everything.

Recruit Help
For me, that meant sitting with my husband and brainstorming strategies to help me save time on some things,and it included me asking for him to take over some specific house/kids tasks. Take a look at what the key people in your life can help with. I told my mom to call me when she's going to the grocery store. She can pick up basics for me.

Let Others Help You
Sometimes people do things because they care about you. Let them! I have two fabulous sister-in-laws who help me out every chance they get. I will never say no again.

Look At Your Responsibilities And Add YOU To The List
I've decided to take 30-45 minutes after work each day to enjoy a cup of coffee and read. Beyond that I've made a short list of what absolutely must get done each day and am working from there. Am I completely finishing everything every day? No. But I've made peace with knowing that there's no way that I can. I've let myself off the hook.

Don't Dismiss Everything As Stress
As soon as school is out, I'll be getting a complete checkup. I don't want to dismiss my fatigue as stress because there might well be a physical cause. Besides, haven't enough people told me things like "You worry too much," or "He'll catch up?" Experience has taught me that sometimes it's not all in your head.

The idea that women can have it all is a nice one, but it doesn't mean that we have to do it all. Just as my kids are more than autism, I am more than just their mom.

A Lot Can Happen In A Year!

2011-04-18T05:25:00.000-05:00

I started this blog a year ago today! I never thought I'd be someone who enjoyed blogging. I don't even keep a journal, but this has been wonderful for me. I've met some amazing people (see my Don't Miss List), and I love being able to look back and see where we've been.

I've learned a lot this past year about putting things in perspective. We saw Tinkerbell's regression and diagnosis. I've learned to appreciate the ways that each of my children express themselves.

I survived 'Bot going to summer camp, and he's already excited about going again. And who could forget the time that Tinkerbell and 'Bot nearly destroyed a pharmacy?

'Bot got over his biggest issue with hugging people, and I got over some of my regrets about autism.

We attended my dad's wedding, and my mom's as well.

We had a frightening encounter with a wild beast--okay, so it was really a spider, but still....

I've had to set myself and a few other people straight, and we've all learned the value of embarrassment.

Tugboat had his first birthday, and we had an unexpected Christmas visit to the ER.

The twins united against me, and some fellow autism parents and I threw in ideas for some new autism diagnosis criteria.

'Bot learned some new social skills, and those skills have started him towards a life of crime.

We learned that doctors don't know everything, especially when it comes to autism. All in all, it's been a busy year, and I can't wait to see what happens next!

I Think I Need Help

2011-04-16T08:51:00.001-05:00

As I typed the title of this post, I felt a surge of anger. I need help? I Need Help???? Yeah. I do.

I write about my experiences as a mother of children who span the autism spectrum, and I even occasionally talk about my own experiences dancing on the edges of the autism rainbow--someone who easily met the criteria for an Asperger's diagnosis as a child. I still might. The thing is, I have no qualms about sharing my kids' struggles, so I feel that I need to share my own. Quid pro quo, Clarisse.

A crisis situation doesn't occur all at once. It's a slow build up. A swelling ocean wave that grows steadily before it crests and breaks. The situation I find myself in has been building for months. I've seen it happening and been powerless to stop it.

I have four full-time jobs. It sounds unbelievable, but it's absolutely true. And you can't spread yourself that thin without everything suffering. I understand that on a cerebral level, but I still hold myself to the standard that casual observers would. Others do too. There are some things that you can't compromise.

Teaching is the job that I get paid to do. I love it. Teaching is an art, more than anything else, and like any artist, you must have a certain combination of creativity, sensitivity, and intuition to do it well. My classroom performance this year has been decidedly less than stellar. My heart and mind are thoroughly engaged elsewhere, and it shows. My co-workers are wonderful. They have been so supportive and helpful to me this year. It's almost hurtful, how good they've been, because baby-sitting me shouldn't be a part of their day. Yet, they've been great. Unfortunately, I see my lack, and I feel ashamed. I've been late to work--frequently. My husband works 3:00 am-3:00 pm, so I have to get the four kids out of the house by myself every morning. It's a huge challenge. I'm behind on tasks that I shouldn't be behind on. Teaching requires a lot of after hours work, and my after hours are spent wrangling my brood. I'm exhausted by 8:00 each night. I just don't have the energy that I need. I've been forgetful and selfish. My boss actually called me into her office to ask if I was okay. She said that others had expressed concern about me.
I thought I was hiding it better than that.

My second job is Autism Services Coordinator and Facilitator. God, I wish I could get paid for this one! Even at minimum wage, the hours I put in would make for good money. I'm constantly on the phone with someone about one of the kids. These people work the same hours that I do, which means that I end up spending a good chunk of my planning hour and lunch on the phone or in meetings about my kids. 'Bot is going through Pupil Appraisal, so I am talking to people about him. I'm scheduling Tinkerbell's speech and educational evaluations with the local school district. I'm wrangling Early Steps about Tugboat. He's been in the program for three months, and has yet to receive his first speech therapy session. (Long story) Not to mention regular therapy for 'Bot and Tinkerbell, the regression that Tink is currently going through, the behavior issues that I need to spend some time addressing, insurance claims to file, Tugboat's pre-evaluation paperwork to complete, and the day-to-day tasks that come with autism. I really need to find a way to get paid for all of it.

Wrapped up in the autism job is the mom job. I love my kids--fiercely. They love me too. No problem there. I'm meeting their emotional needs for sure. However, there are nights when not everyone gets a bath. We eat take out--lots of take out. Homework for 'Bot is awful, and it doesn't always get finished. Poor Princess has to do hers on her own. Luckily, she's responsible and smart. But sometimes she asks for help when I know that she doesn't need it. What does that say about me?

At the end of the day, my wife and partner job is the most neglected. My poor husband. He does more than his share of the housework because if he doesn't, it won't get done. He deserves better. He deserves someone who isn't bogged down by all of the above-mentioned mess. Someone who doesn't withdraw into herself at the end of each day. It's self-preservation, you know? The withdrawal. It's all I can do once the kids are in bed. I just retreat into my own world. There comes a point that you just can't handle any more. I
sometimes want to tell him that it's okay to go. I wouldn't think badly of him. I wouldn't blame him.

What it boils down to is that I think I need some kind of professional help. That's hard to admit, but clearly true. I'm not sure what form that help should take, but I definitely need something. Depression is an ugly and difficult thing. Now, if I can fit myself into my schedule....

Front and Center: My First Guest Post!

2011-04-03T09:15:00.000-05:00

Holy Cow! When Kim at the Autism Blogs Directory called for posts, I sent her one. I figured I would be in a list of links or something, but there I am, front and center, exposed for all to see! My first guest post--go figure. Click here to read it!

What You Need To Be Aware Of

2011-04-02T11:17:00.001-05:00

This is 'Bot. He has autism.

This is Tinkerbell. She has autism.

If you are a regular reader of this blog, then you're already aware of autism. You don't need the month of April to make you realize that autism is real and that it has a significant impact on families. However, here are a few more things that I want you to be aware of.

1. There's no "look" to autism. Some children have very obvious stims, and some do not. Never use visible stereotyped behaviors to judge the extent of a person's autism. Autism goes much deeper than what you see or don't see on the surface. A child who stims a lot might still be very aware and intelligent. A child who doesn't could be profoundly autistic even without visible stims.

2. NEVER make comments about a child's level of functioning, especially if you are not a part of the autism community. There is no way to gauge a child's level of functioning based on the symptoms you see or don't see. Comments about it are extremely hurtful and offensive--even if you don't mean to be. No matter where a child falls on the spectrum, autism is a Pervasive Developmental Disorder. It impacts several areas of development, and we feel that impact every day.

3. Platitudes such as, "It could be so much worse," or "At least you don't have to worry about peer pressure," etc. don't make us feel any better. Would you tell a parent whose child is in a wheelchair, "At least he's able to move from the waist up?" Didn't think so.

4. If you see a child acting in a way that is developmentally inappropriate, let's say for example, an older elementary aged child throwing a tantrum in a grocery store like a two-year-old, assume that there's a developmental disability at work and keep your comments to yourself. Typical kids who are plain spoiled seldom roll on the floor screaming in the middle of the store.

5. Asking is better than assuming. Most parents are fine with answering questions.

I hope you always feel comfortable talking to me about autism. Like my Facebook profile pic says, April is Autism Awareness Month. Every day is autism awareness day at our house.

A Touching Poem

2011-03-31T19:41:00.000-05:00

Caitlin Wray, who blogs at Welcome To Normal: Population 0, wrote the following poem as a guest post at Hartley's Life With 3 Boys. This poem touched me deeply, because I think this is how 'Bot must see the world.

Different Enough
by Caitlin Wray

Different enough

to feel like an alien.

Same enough

To bleed red.

Different enough

To be hurt by your touch.

Same enough

To crave it.

Different enough

To get tongue tied.

Same enough

To have something to say.

Different enough

To be awkward.

Same enough

To know it.

Different enough

To struggle with standards.

Same enough

To be held to them.

Different enough

To garner their stares.

Same enough

To notice them.

Different enough

To be an outsider.

Same enough

To want in.

When Doctors Perpetuate the Myths

2011-03-30T09:12:00.001-05:00

I have to tell you, my dear readers something, and while I might wish I could be artful, brilliant, and philosophical about it, frankly, I just don't have the time. It's Spring Break, and 'Bot is waiting like a hawk for me to get off of the computer. But I have to put this out there.

I brought the boys to the pediatrician today because Tugboat needed a wellness checkup and shots (yes, I vaccinate), and 'Bot has a lesion on his arm that I wanted checked out. 'Bot's lesion isn't important--it's a wart that he's picked at. ('Bot's a skin picker. We have to keep nail clippers hidden, and we check his arms routinely for sores. Isn't autism lovely?) Anyway, it's just a wart that he's picked.

No, the story I want to tell is about Tugboat, Dr. Quack, and the stereotypes about autism that still exist, even among the doctors we rely on to be "in the know."

First, I must relate that Dr. Quack is pretty nervous around 'Bot and Tinkerbell. Honestly, if we didn't believe the man has the potential to learn then we probably would've given up on him by now. He handles Tink with kid gloves, which is fine. His soothing kid glove manner is perfect for her. 'Bot is a different child. Besides being a child with autism, 'Bot is 100% a boy, and he must be handled firmly.

First, the nurse saw autism on his chart and commented to me that he must be very "high functioning" because she'd have never guessed. That after maybe three minutes with him. Now for me, that's like the "n" word. I can call him high functioning all day long, and other autie parents are welcome to as well, but for someone who doesn't have personal autism experience to say that really pisses me off. Why? Because they say it dismissively--as if his autism must not affect him. We know differently. I correctly her by saying that he's highly verbal and not cognitively impaired. She saw what I meant when she examined him. He was polite, as always, but he tried to answer the questions she asked me, cried and covered his head when I corrected him, and she had to examine the two other sores on his arm--the ones caused by self injuring. When 'Bot went to the bathroom, I explained to her that children with autism can be very strong in some areas and weak in others. She seemed to get it.

Dr. Quack kept looking at 'Bot like he was waiting for him to sprout antlers and fly. He seemed surprised that 'Bot has good manners--like my child must be rude because he's autistic. For the record, 'Bot is very polite. He's been taught to be polite.

When it came time for Tugboat's checkup, things didn't go so well. Tugboat wouldn't have anything to do with Dr. Quack, they couldn't weigh him properly because he screamed and cried and wouldn't sit on the scale, and it took the doctor and a nurse to pry him off of me so that the doctor could give a very brief physical exam. It's a good thing he's healthy. I'd hate for him to need real medical care.

Turns out that Tugboat hasn't hit any of the 15 month developmental milestones. In fact, there's quite a few twelve month milestones that he hasn't hit yet either. Dr. Quack recommends that we have him screened for autism in two months (18 months old). Really? He also refused to give him his MMR. Yeah. Read that again, people. He refused to give him the MMR. He wanted to hold off on all shots until 18 months. I pointed out to him that there is no research linking autism and vaccines. I had to argue that it doesn't matter anyway, because Tugboat is already delayed, even without those shots. He agreed with me on everything, and he agreed to give the other two shots, but he wouldn't budge on the MMR. So, we'll get it at 18 months. What kind of crazy world are we living in? Doctors need to get educated about autism! I'm tired of teaching doctors who should know better about my children's issues. This is how the myths get perpetuated.

Girls' Day Out!

2011-03-29T20:45:00.001-05:00

I bought Princess a book called Everybody Is Different by Fiona Bleach. The book is written specifically for the siblings of kids with autism. The book was not difficult for Princess to read, but it's definitely geared towards older kids--maybe nine and up--based on the length and reading level. Everybody Is Different provides an overview of autism itself, and it answers many questions that siblings might have about the way that autism presents itself.

Princess has learned a lot from the book, including why Tinkerbell lines things up and repeats the things we say. She commented that she didn't mind when Tinkerbell says the same things over and over because some kids with autism can't talk at all. She even came to me and said she "wasn't gonna mess with 'Bot anymore," although I'm still waiting for some evidence of that one in action! However, there's also a section of the book about what siblings might feel and what they can do. It includes talking about how they feel. So, Princess gave me a note that said, "Mom, this is really hard sometimes. Can we do something on Saturday? I need a break."

How could I say no?

We got our hair cut.

We window shopped for hours, and she got pretty much everything she asked for--including this ridiculous hat.

Our day culminated with a manicure for her and a pedicure for me.
We had a day all about her. There were no demands. We made the day up as we went along. There was no crying. No tantrums. No plan. It was long overdue.

Blog Gems #12

2011-03-27T17:12:00.000-05:00

This week's Blog Gems prompt is to reair a favorite post. I have chosen to link up my third blog post ever. This is a tribute to my daughter Princess and the sacrifices she makes as the only non-special needs child in our home. Lots of people enjoyed this one when I wrote it, and it's one of my favorites to this day.

The Wheel That Turns Smoothly

Daddy

2011-03-25T18:58:00.000-05:00

Tugboat was sitting in his bouncer tonight, looking up at the ceiling fan and yelling da da da da da. He's been repeating da and ba a lot lately. Unfortunately, he's lost bye bye and mama. However, tonight, while he was vocalizing his repetitive syllable, he suddenly stopped for a second, looked at my husband, and said Daddy--clear as a bell. His voice is beautiful. It's a little deep for a baby, a little raspy. I think if he ever learns to talk he will be able to sing like an angel. The sweet music of that one word filled my soul to overflowing. The excess poured out of my eyes, because I don't know when I'll hear it again.

Autism Self-Awareness

2011-03-21T17:02:00.000-05:00

The following conversation took place in my kitchen on Friday morning. (Yeah, I've been stewing on this for that long!)
"Mom....Mom....MAMA!!!" said 'Bot as I was frantically trying to throw things into lunch bags for the day.

"What, baby?" I asked.

"Uhm...I got an F in conduct yesterday," he replied.

"You did? Why?" I asked. This conversation takes place between 'Bot and myself every day after school. He tells me he made an F in conduct, I act horrified, and then he yells, "Teased YA!!!!" This is one of our few remaining scripts. Only, this wasn't after school. The answer he gave me wasn't what I expected either.

"I yelled shut up to somebody in my class," he said.

"You did?" I asked, more than a little surprised. "Who did you say shut up to?"

"M," he replied.

At this point Princess piped up and said, "Well, I can't say I blame you there. M has issues."

Before I could even begin to respond 'Bot said, "Yeah! He's got more problems than I do!" The twins burst out laughing, and I just shook my head and ushered everyone out of the door. We were late, as usual. However, as I drove to school, I couldn't stop thinking about that conversation. Now, to clarify, 'Bot didn't actually get an F that day, and I don't even know if the episode actually happened, or if 'Bot was trying to use a made up story to express something deeper. Also, I'm not proud of my kids laughing at the problems of another child. However, I am curious about the way that 'Bot perceives himself.

You see, we've had The Talk. No, not that one! I mean the You Have Something Called Autism talk. We've read All Cats Have Asperger's Syndrome together. It's a great book, by the way. 'Bot knows that he has Super Senses kind of like Spiderman. He knows that Autism makes some things really easy for him, such as erector sets, and some things more difficult, such as making friends. I don't know if he "gets" it, but apparently he understands a lot more than I give him credit for. Based on his commenr, I think that he realizes that he is quite different in some ways. That in itself doesn't surprise me. I can clearly remember feeling different than my peers by third grade. It was like they had some kind of manual that I didn't have a copy of, some kind of something that had passed me by. However, I also felt rather superior to them. You see, I was Gifted, which seemed like a good trade off to me.

Unfortunately, 'Bot seems to be seeing his differences as "problems," which I definitely don't like. I wish I could pry off the top of his little head and look around for a while at what's going on in there. I can say this though. Before he was diagnosed, we frequently heard him say things like I hate myself and I'm stupid. Now, we don't hear that anymore. I'm not so stupid as to believe that those thoughts may not be there, but all in all, the boy seems happier with himself now days. I think he's more self-confident than he used to be. At least, I hope so. Perhaps it's a good thing that 'Bot learns to look at his strengths and his challenges. Maybe he needs to do that in order to face them.

Linky Love

2011-03-18T04:34:00.001-05:00

Angela, at Confessions Of A Nondomestic Housewife is doing an Autism Awareness blog carnival. Pop in and link up!!!!

Blog Gems #11

2011-03-13T14:08:00.000-05:00

Jen at The King and Eye has posted the prompt for Blog Gems #11. This linkup is all about creativity, so I decided to revisit a post I did about Tugboat when he was beginning to explore the house, and containing him was becoming difficult. I hope you enjoy it!

Apples and Autobots Corp of Engineers

Liar Liar Where's the Fire?

2011-03-11T21:09:00.000-06:00

Tell the truth. Be honest. Lying is something that God doesn't like. Most parents spend a bit of time trying to teach their kids the value of honesty. However, the parents of kids with autism have a different take on lying. We see it for the complex social and language skill that it is. The ability to lie is a pretty complicated cognitive skill. The child has to understand what you want to hear, school his or her face to match what he/she is saying, adjust tone of voice, and use body language to aid believability. It's a big deal.

Lately, 'Bot has been testing the shark-filled lying waters. Oh, I'm not saying he's never lied before. He has. Like the time he put a whoopie cushion under my chair. Only, he forgot to not stare at the chair as I started to sit down. Then there was the time he got angry and wrote I HATE PRINCESS in purple marker on our bedroom floor. He first said Princess did it herself, and when that didn't work he said, "Maybe Tinkerbell did it." Tinkerbell was about Tugboat's age at the time. Then there are the "honest" lies. Like the time he went to the restroom at school but neglected to tell his teacher that he was going to say hi to me while he was out. However, most of the time he is a bit too honest. I haven't known him to give an outright blatant lie before.

Last week, 'Bot told Mrs.H that we were stopped by a cop on the way to school. He told her that I didn't get a ticket because he and Princess were crying. Well, that did happen--when they were about three years old! Interesting.

Well, today he told his first REAL, 100% falsehood. We made our usual after school stop for gas and a snack. The store was packed. There was a line, and 'Bot was ready to get to Meme's. We were standing in line, when 'Bot took off towards the back of the store. I thought he had changed his mind about the snack he wanted. He's gone off the Reece's mini cups, and has been getting crackers lately. Anyway, a minute later he came back and went to the register that was closed. I called him back over, but he didn't move. I was about to go grab him, but suddenly, another clerk appeared from the back. She smiled indulgently and said, "He told me I had to come right away--that his mom is in a big hurry!" What???? I looked at 'Bot, who was staring straight ahead.

"Did you go back there and get her?"
"Yes," she replied. "He said he has a doctor's appointment, so ya'll are in a hurry." I couldn't believe it. I wasn't sure whether I wanted to fuss at him or give him a hug. I chose to expose his lie, but I couldn't bring myself to really get onto him. We'll wait and see if this becomes a habit. I expect that it will. Most kids like to show off a new skill. So, anyone know how to stop a kid from lying? I LOVE saying that!

Hard-Hearted Hannah

2011-03-09T21:34:00.001-06:00

We were leaving school in a bit of a rush today. We were late for OT, and I was doing my best to hurry Princess along. She's not allowed at OT with 'Bot anymore (banned by the therapist--long story), so she hates Wednesday afternoons. I drop her at off at my mom-in-laws on the way to therapy. My mom-in-law takes Tinkerbell to therapy for the session right before 'Bot, so Princess watches and is watched by her ninety-year-old Nana until Meme and Tinkerbell get back. (Tinkerbell is not allowed at 'Bot's therapy sessions either--nor is he allowed at hers--a rule developed by both me AND the therapist.)

'Bot was a ways ahead of us, running and twirling at the same time. He is so great during the day, but he stims outta control after school for about an hour and a half. Anyway, he stopped mid-spin because his eye was caught by a cute little girl. She was walking into the building between her two parents. She had long, dirty-blonde hair and pretty eyes.

"Hey!" yelled 'Bot. "Are you in Mrs. A's class?" It was a great conversation opener--except for the yelling, but we can work on that.

"Uh-huh," she replied. 'Bot was completely floored. He froze. Literally. I don't know if he was surprised that she answered, or if he just hadn't planned that far ahead into the conversation. So, he gave an exaggerated shrug, made a face, and took off running. The little girl's dad burst out laughing, probably at the idea that his sweet, cute little girl had just rendered her first boy speechless. That's some good dinner table teasing material, ya know. I don't think for a second that he was laughing at 'Bot. However, he looked down at his daughter and said, "Do you know that boy?"

"NO!" she said, rather emphatically. "He's weeeiiirrrd."

'Bot didn't hear her, but Princess and I sure did. Princess frowned and looked like she was about to say something, but then she turned and kept walking. But I know what she was thinking. Fine--you hateful girl. I wouldn't want you for a sister anyway!

A Spark of Hope

2011-03-01T16:00:00.000-06:00

Remember, a couple of weeks ago, when I was worried about Tugboat not qualifying for Early Steps? Well, that was all for naught. The little guy qualified--easily. The Early Steps evaluation showed delays in communication, social development, and adaptability. So, last week, I met with our case worker and a speech pathologist to set some goals for the next three months.

We decided that functional communication is of the utmost importance right now. Tugboat has no way to indicate what he needs or wants. He doesn't point to desired objects. He doesn't have any words other than the occasional bye bye or baba. However, he only says baba when he actually sees a bottle. He doesn't initiate. So, the plan is to teach him three signs in the next three months, along with placing things out of his reach but within his line of sight, so that we can encourage him to point or gesture. Since we've been doing that for a while now, I really was doubtful. However, last night, the little monster threw me a bone.

Tugboat drinks a bottle of milk every night before he goes to bed. Since milk is one of the signs on our agenda, we have been diligently signing milk every time we give him some. The sign for milk looks like you're milking a cow. As I poured his bottle, I maintained a running dialogue. "Mama's pouring milk for Tugboat. Does Tugboat want milk?" He was staring up at me like..."Shut up and do it already!" But then, as I watched, he opened and closed one little fist three times. He didn't make the up and down motion of the sign, but there was a definite hand movement. Coincidence? Perhaps. However, I think I'm going to take that little gesture as a sign that the little guy is already working hard to overcome his communication delay. What a little champ!

A Happy Story?

2011-02-27T10:07:00.000-06:00

As most of you know, I participate in a blog hop hosted by Jen over at The King and Eye. For this linkup, Jen asked us to share a happy story because she needs to hear them. Jen's little boy with autism has been in the hospital recently, and she needs some cheering up. Her little guy has some kind of inflammation in his hips and he is in a lot of pain and can't walk or put pressure on his hips. They were still in the hospital the last time Jen updated--unless I missed something. Anyway, keep Jen's little guy in your prayers, and Jen--I hope you enjoy this story about one of 'Bot's worst days ever. I has a really happy ending. :-)

My Cups Runneth Over

You CAN Teach A Rotten Pup Some New Tricks!

2011-02-21T11:14:00.000-06:00

Before I begin, I must first tell you how incredibly ironic it is that I'm about to blog about 'Bot's amazing new social skilz, when he's driving me and his sisters absolutely insane today. But you asked for it, and I'm really relieved because a few freakish fans actually wanted to hear the sick story! Blech. Psychos.

'Bot is receiving formal social skills training at school. He eats lunch with the school's behavior interventionist twice a week, and according to 'Bot on the ONE time he mentioned it, they talk about "making friends and stuff." She's using social stories to teach him. The speech therapist is working hand in hand with the behaviorist to build pragmatic language skills based on what he's learning through his social stories. He's also spending 30 minutes a week with the school counselor to learn about emotions and other social skills. At our last "What The Hell Are We Gonna Do With This Kid Meeting," the speech therapist said that they had been talking about two things--greeting other kids and adults and helping people. 'Bot is soaking it up like a little sponge, and he's eagerly practicing his newfound mojo on unsuspecting people everywhere.

Our neighborhood is kind of awesome. It's quiet, and the kids roam pretty freely. Our neighbor (who slaves everyday as Tugboat's sitter) has one of those huge swing set jungle gym playhouse rope swing accident waiting to happen apparatus things in her backyard, and she has a trampoline, so all of the neighborhood kids end up there. The kids across the street have a basketball goal set up right next to the road, and there's an open and standing invitation for anyone to come and play. Kids ride their bikes up and down the street. It's nothing to drive up and find some kid you don't know cutting across your yard to go meet up with other kids a few houses down. Everyone kind of looks out for all of them. It's really nice.

'Bot has always been on the fringes of the neighborhood scene. Princess heads out the door to go play, he watches out the window, waiting for her to establish herself in a game, and then he follows. He's usually gone for about ten minutes before he comes home angry or crying. This has been the pattern since they were small. Last Wednesday, Princess wasn't feeling well enough yet to go out and play. The two boys across the street were shooting some hoops, and 'Bot was sneaking glances out of the living room window at them. Finally, he slipped his boots on and told me he was going outside to play. I was surprised at his daring, but I didn't offer any advice. I just let him go. I watched him walk up to one of the boys, the youngest one, and give a little wave, as he had been instructed at school. I watched them exchange a few comments--probably from the script he'd learned with the speech therapist, and then he played basketball. He played for thirty minutes. He came home happy. I was so proud.

Unfortunately, it hasn't all been success. Emboldened by his peer greeting success, 'Bot must've realised that these ladies must know what they're talking about, so the helping people thing might br worth looking into. I know 'Bot so well. He'd probably been watching for days for an opportunity to victimize, I mean, help someone.

On the day that I was sick, my husband picked the twins up from school. They stopped at a store on the way home to pick up some we have the plague supplies. On their way out, they passed an elderly lady on one of those motorized shopping carts. She was talking to a store clerk and trying to operate her cart and push a regular buggy. So 'Bot goes over to her and grabs her buggy and walks off with it! He was headed out the door with her stuff, without a clue where to take it--nevermind that he hadn't spoken a word to the poor lady. Dad had to quickly intervene, apologize, and explain to 'Bot that he needed to ask before he "helps" someone. Then he modeled the behavior by doing exactly that. The woman graciously allowed 'Bot to help her, but I made sure to tell the speech therapist that she might want to go over the fine point of asking again. I can only imagine how much trouble 'Bot could get himself into by helping without permission.

I'm so pleased that 'Bot is so eager to learn. However, I'm also a little saddened. How long has he wanted this connection and insight into others? Has he just been waiting for all this time for someone to please just teach him?

Reader's Choice

2011-02-18T19:20:00.000-06:00

Anyone who's been reading this blog for a while knows that I often promise future posts and fail to deliver. A lot happened this week, so I'm letting you, my faithful readers, decide what actually makes it into the blog. Below is a list of things I might tell you about and a parenthetical tone description, or at least, that's what I hope they'll sound like once they're written. You pick and comment here or on facebook. Remember, though I'd love to tell you about all of these, it's likely that your pick is the only one that will make it into the blog!

1. The twins turned 9 this week (sentimental, and full of pics of the twins as babies)
2. We all got really really really sick (gross and weird)
3. Princess amazed me (sentimental)
4. 'Bot is learning some social skills! (funny)
5. Tugboat made some HUGE gains this week (excited)
6. I really don't givea....okay--this one is NOT an option!!!!

So, what do you want to hear about?

My Boy the Criminal

2011-02-11T17:58:00.000-06:00

J.E.J. aka 'Bot
Swindler Extraordinaire

A few women in a small northwest Louisiana town are counting their change tonight.... and coming up short. Why? It's heartbreaking, really. They were all victims of the same nine-year-old boy--'Bot Apples. What started off as an occasional need for nickles turned into something much more sinister.

"I just don't get it. I don't know why they keep falling for it!" said the astonished mother of this hard-hearted little swindler. Why indeed, Mama Apples. That's what we all want to know.

It all began one early fall morning less than a year ago, when Mama Apple's friend, Mrs. H, decided to help teach young 'Bot how to greet adults. You see, 'Bot's no ordinary boy. He has autism, and as a child with autism, he was having difficulty greeting adults appropriately. Mrs. H served as a safe adult for him to practice his social greetings with, and she soon became a staple in the boy's morning routine. A wave. A smile. A cheerful hello. These exchanges warmed her heart. Unfortunately, they also opened the door to more social interaction, and may indeed have been the catalyst for young 'Bot's downfall. For, as his confidence grew, so did his connections with other adults. All older women. All friendly and loving. Women like Mrs. K, the school bookkeeper, Mrs. Dash the inclusion teacher he had previously shunned, and Mrs. Hat, a secretary. Once this deceptively adorable little boy realized that greetings would be met with hugs and smiles, he began greeting all of these women regularly. And once he formed social attachments to these "Sugar Grannies," he began to carefully clean them out--one nickle at a time.

It started small. A nickle here. A dime there. The occasional dollar. All he had to do was ask, and they willingly, cheerfully even, parted with their spare change. Why? Because 'Bot has an ugly addiction--vending machines. His mother's attempts to help him break free of this sad addiction led him to seek change in other places. His surrogate grandmas were the obvious choice. His MO is simple. He greets them. He hugs. He asks. They hand it over. These women have been sweettalked out of as much as five dollars at a time! Upon realizing the shocking crime taking place right under her paper grading nose, his mother put her finger down. Mama Apples forbade 'Bot to ask women for any more money. Sadly, that didn't end his hug happy hijinks. Instead, he stopped asking and started trading. He traded two cookies for five dollars as recently as this afternoon. Is there no end in sight? Will school-working grandmas ever be safe again? Not likely. It's hard to find a silver lining in the midst of such a dark cloud of intrigue. However, Mama Apples is doing the best she can to look on the bright side. If third grade doesn't work out, he has a very promising future as a used car salesman in Florida to look forward to.

Tugboat's Going Tubing

2011-02-09T14:59:00.000-06:00

Tugboat and I made our rounds around town on Monday. I had to run some errands and take him to see the audiologist for a hearing test. For my new blog readers, Tugboat is my fourteen month old, who is being evaluated by Early Steps because of delays in communication, fine motor skills, and play skills.

At thirteen months, Tugboat was evaluated because he was not waving, pointing meaningfully, showing only limited joint attention, and had no words other than mama. Now, a month later, he has learned to wave and he says baba, which means bottle and bye bye, depending on the situation.

The evaluator who saw him did see fine motor and play skills problems, but she also wanted us to get Tugboat's hearing checked to rule out hearing as the reason for his speech delay. Of course, this same lady also observed his handflapping and "reassured" me that lots of babies do that when they are excited. I didn't see the point in explaining that Tugboat flaps pretty much constantly. I guess he's either always excited or she's an idiot. Guess which one she'd go with. Whatever.

So, Monday found Tugboat Monster and I doing all sorts of interesting things--aka running all over town in the freezing cold, close to naptime. First, we dropped the twins off at school and made copies for my classes that day. Tugboat was fascinated with the copy machine. Next we had to go to the Special Education office and hand deliver some correspondence about Tinkerbell. Then we went to the pediatrician's office to pick up a school excuse from Princess's appointment last week. (She has a sinus infection.) We returned some library books. All of this was done by 9:15 am. Tugboat was getting sleepy, since naptime is 9:00, and he let me know it by going into full tantrum mode about five minutes after we walked into the audiologist's office. He lay down on the floor and started doing his best impersonation of a dog with fleas, rolling around on the floor and screaming. I was pretty sure this hearing test would not go well. Turns out, I was right.

He failed. Big time. Although, I think it had more to do with the timing than with his actual hearing. You see, Tugboat has a sinus infection. A bad one. There was snot pouring from his little nose. The audiologist said he has fluid in both ears. It was obvious from the test that Tugboat can hear. His hearing was just a good bit below what it should be in both ears. Also, he is having trouble localizing sound. Basically, he can't tell where sounds are coming from.

It is possible that this has been going on for a while now. It is possible that this has caused him to be delayed in speech. Will we will take him to an ENT and get tubes in his ears? You bet. If this solves his communication problems, then that would be great. But you know what? I don't think this is it. Just like I didn't believe the pediatrician and a psychiatrist when they said 'Bot's problems were ADHD and OCD. I just don't think that's the whole picture. Tugboat's communication problems are not solely in the area of speech. It took him four months of hard to work to learn how to wave. He doesn't look us in the eye. He points, but not to show us anything. He hasn't grasped the concept of looking at us and then pointing. He doesn't try to get us to look at what he's seeing. He doesn't look at what we're pointing at. He doesn't respond when we spank his hand, which means that he's not only failing to recognize our angry tone of voice (which could be a hearing problem), but he's also not reading our face (which is probably NOT a hearing problem). He doesn't bring us toys and try to get us to play with him.

So, for now, I will pray that he gets fine motor and play skills therapy, and I'll wait for his communication to fall even further behind. When he's far enough delayed, then they'll qualify him for speech. With 'Bot I was bewildered. With Tinkerbell I was horrified, in denial, and scared. Now, with Tugboat, I just feel frustrated with a system that refuses to listen when a parent says something is wrong.

You Might Have A Kid With Autism

2011-02-03T20:41:00.000-06:00

I might be revealing a little too much about myself here, but have you ever watched Jeff Foxworthy? You
know-- You Might Be A Redneck If..... Well, here's my version.

If your kid has to tell her teacher that her brother ate her homework--and she's not lying--you might have a kid with autism.

If the words "Quit licking people" comes out of your mouth at least four times a day--you might have a kid with autism.

If your kid runs away shrieking because the tv "MIGHT" be loud, you might have a kid with autism.

If you buy toys based on their ability to be easily snapped back together, you might have a kid with autism.

I checking to make sure your kids shirt and pants aren't inside out, backwards, or both and that shoes are on the right feet before you leave the house is a part of your normal morning routine--you might have a kid with autism.

If every meal in your house consists of mac 'n cheese, peanut butter and jelly, or some combination of both--you might have a kid with autism.

If you know the exact location of every fire hydrant and volkswagon between point A and point B--you might have a kid with autism.

If you visit someone unexpectedly, and you are shocked that their kids are wearing clothes, and you wonder how they got them to do that--you might have a couple of kids with autism.

If the lights in your house are frequently flipped on and off for no apparent reason, and this doesn't even bother you anymore, you might have a kid or two with autism.

If your kid randomly quotes movies or tv shows and you automatically respond with the next line--you might have a kid with autism..

If your kid can remember the producer, director, and all actors in a Transformers movie, but can't seem to remember any school-related facts, then yes, you might have a kid with autism.

If hopping, flapping, spinning, jumping, running, skipping, twirling, and walking in circles are not hyperactivity, just average everyday behavior, then you might have a kid with autism.

Feel free to add to my list!

What Can I Do?

2011-01-30T10:41:00.000-06:00

After my recent near mental breakdown over Tinkerbell's diagnosis and Tugboat's referral to EarlySteps, a lot of friends and family offered support to us. You wanted us to know that you were praying for us, and you said that you were here for us. A lot of people even said, "Let me know what I can do to help." So, when I visited one of my favorite blogs, Teaching the Boy, I saw this article, and I wanted to share it with all of you.

10 Things You Can Do To Help A Family Who's Child Has Been Diagnosed With Autism

PLEASE READ!

2011-01-29T23:54:00.002-06:00

Okay, I know that I said I was too busy to blog, but Mommy over at My Adventures In Mommyland is having a giveaway. She's giving away a Giggle Junction I Spy bag. Basically, it's a pillow that's filled with some little pellets and a bunch of little toys. There's a window in the pillow, and kids have to shift the pellets around to find the toys inside. The idea is that it helps with visual perception, sensory motor skills, fine motor skills, and sensory integration.

Now, I WANT this toy. Seriously. 'Bot and Tinkerbell both have major problems with all of these areas. Anything that helps them develop these skills is something that I'm willing to try. Also, I'm quite poor, so I for real can't go buy one.

So, here's my plan. I'm doing this blog post to a.) Let Mommy know that I'm on this like underwear on Big Daddy's butt crack b.) I want you to help me out. See, if you all pester her to death with comments about how those poor unfortunate little children being raised by the crazy lady at Apples and Autobots reeeally need all the help they can get due to their unfortunate mama situation, then she might be moved i.e. pestered into giving ME the bag instead of one of her 647 other followers (kinda makes my 47 seem pathetic). If all else fails, maybe at least jillsmo will become neurotic and obsessed about helping me out and forget about torturing you unfortunate souls who didn't accept her memetastic award (you know who you are--and so does she). See? You'd be doing yourselves a favor! So come on guys--do it for the children.

A Quick Update

2011-01-29T09:25:00.000-06:00

1. Mama Apples is too busy immersing herself in Wrightslaw to blog.

2. Average Joe is as mad as a hornet at the public school system.

3. Princess has an upper respiratory infection and needs help with her science project.

4. 'Bot also needs help with his science project. His hypothesis that if you hook some wires to a watermelon and hook that to a toaster it will not make toast is probably a sure way to be proven correct.

5. Revision--Mama Apples needs to take a break and help 'Bot find an appropriate science project.

6. Tinkerbell has taken to screaming loudly when Tugboat gets near her--he sucks his thumb and his hands are ALWAYS wet.

7. Tugboat's Early Steps evaluation is complete. They probably will not qualify him for communication because he started waving last week and he's not yet outside of normal range for speech, since he does say one word. However, the evaluator was concerned about his play skills. I'll let you know how it goes.

8. Tugboat suddenly LOVES Tinkerbell. See number 6 for why this is not necessarily a good thing.

Oh My Gosh--Another One!!!

2011-01-22T22:35:00.006-06:00

Wow! When it rains it pours! I was all psyched about my first bloggy love award, and now Heather at Living, Learning, Laughing, and Loving with Autism has given me another one! Woohoo!

That's right folks--it's the most awesome award ever made (says so, right there on the badge!). Of course, there are some rules that go along with it.

The rules to this award are as follows...

1. You must proudly display the absolutely disgusting graphic that I have created for these purposes (put it in your post, you don't have to put it in your sidebar, I think that would seriously be asking too much). It's so bad that not only did I use COMIC SANS, but there's even a little fucking jumping, celebrating kitten down there at the bottom.It's horrifying! But its presence in your award celebration is crucial to the memetastic process we're creating here. If you need a higher resolution version... I totally have one!!

2. You must list 5 things about yourself, and 4 of them must be bold-faced lies. Just make some shit up, we'll never know; one of them has to be true, though. Of course, nobody will ever know the difference, so we're just on the honor system here. I trust you. Except for the 4 that you lied about, you lying bastards! But don't go crazy trying to think of stuff, you'll see by the example I've set below that we're not really interested in quality here.

3. You must pass this award on to 5 bloggers that you either like or don't like or don't really have much of an opinion about. I don't care who you pick, and nobody needs to know why. I mean, you can give a reason if you want, but I don't really care.

4. If you fail to follow any of the above rules, I will fucking hunt your ass down and harass you incessantly until you either block me on Twitter or ban my IP address from visiting your blog. I don't know if you can actually do that last thing, but I will become so annoying to you that you will actually go out and hire an IT professional to train you on how to ban IP addresses just so that I'll leave you alone. I'm serious. I'm going to do these things. Starting with the 5 of you I'm about to pass this award on to.

So, here are five things about me--and only one of them is true.

1. I am a huge fan of Star Trek. I've been to two conventions dressed as an original character--Spock's mistress.

2. I was once arrested for prostitution.

3. This whole blog is a lie. I'm really a 350 lb. guy named Dale, doing time in a state prison. I plan to write a tell all book about the secret world of convict bloggers when I get out.

4. I have a secret and embarrassing crush on Jay Leno--it's a chin thing.

5. I really want to learn how to mountain climb.

I bet you'll NEVER guess which one of those is true!

Now, here are my five lucky nominees:

Life With Two Autistic Kids/

This Side of Typical

Autism As A Whole

Losing My Marbles and Other Things

Teaching the Boy

Have fun!

I've Got Style Baby!!!

2011-01-21T17:22:00.002-06:00

Before I really begin, I'd like to take a moment to say thanks to everyone who reached out to our family with love and support this past week. From family and friends who see us everyday, to blogger friends who only know me through the computer, you were so amazingly comforting, and I don't have words enough to express how much it meant to us.

Now, for the real story today! Jennifer C over at Fingerprints of Autism has given me an award!

This is my first blog award, and I am ridiculously excited! Also, the computer is the only place in the world that I could be considered remotely stylish, so I'd better shout it from the rooftops! In order to accept the award, I must tell you seven things you don't know about me, and then I must pass it on to other bloggers. So here goes!

1. When I was nine, I decided to run away from home. I took my two younger brothers with me (they were ages 8 and 5). We went half a mile down the road to the local grocery store, bought a bunch of candy with the money from our piggy banks, and we spent the day swimming in a gully. Meanwhile, my frantic mom had called my dad and grandpa home from work, there was a search party, and the police were about to be called before we were found.

2. I was Valedictorian of my high school class.

3. I absolutely can't decide if my favorite color is blue or green.

4. All I drink, pretty much, is coffee.

5. I learned to play the piano when I was 8. I was my church's pianist until I moved away to college.

6. I talk in my sleep--a lot.

7. I have a birthmark in a, shall we say, delicate area. When the twins were about two, Princess asked me about it, and I told her it is where an angel kissed me. Their Sunday school class was talking about angels a few months later, and Princess proudly informed them of my "angel kiss" and its exact location!

Now for the fun part! I don't have very many Blogger friends who haven't already received this award, but here's who I'm passing this on to:

Debbie at The Henry Family Since 1997

This Side of Typical

Elise at Raising Asperger's Kids

Caitlin at Welcome To Normal

Heather at Living, Learning, Laughing, and Loving with Autism

Sabrina at Getting Through Today

Trying To Stand

2011-01-17T13:11:00.001-06:00

I am a broken and battered thing. I'm sitting here, typing this, and tears are pouring down my face. The past five days have been one blow to my heart after another, and I am trying to process and grieve and be strong all at the same time. I can't.

Thursday night we met with Tinkerbell's doctor, who gave us her evaluation results and "official" diagnosis of autism. That's fine. We knew. It's just that seeing it there in black and white made it so much more real to me. My "adorable and sweet three year old toddler with beautiful eyes" (quote taken straight from the report) has obvious language deficiencies, stereotyped behaviors, and impairments in social reciprocity. Her scores on the autism rating scale indicate mild to moderate autism.

Today, a lady from Early Steps came out to assess Tugboat. She asked me questions from a milestone checklist, and every "no, he's not doing that" was another nail in my heart. The lady decided that Tugboat warrants further evaluation. They won't assess him for autism until he's 18 months old, but he's missed enough milestone that there are concerns.

I don't know why this hurts so much. It shouldn't. My head is saying that it doesn't matter. Wherever they are, we love them without conditions, and of course, we do. My children are so amazing. 'Bot is funny--hysterically funny. Tinkerbell is precious and sweet. Tugboat is a monster, but I love him with my whole being. So why am I hurting like this? I should be used to it by now. Autism is not new to us. Yet, I feel like someone has stabbed my soul with a fork and is ripping off pieces of it bit by bit.

All I want to do today is cry. I would love five minutes with God, just so that I can ask him WHY? Why us? I'm a fucking ENGLISH teacher! Language is my medium. My husband was voted campus favorite in college. He's a social animal. How did we end up with two, possibly three, kids with autism? What in our genetic code produces babies with this particular neurological disorder? Is anyone even studying that? I know there are many families with more than one child on the spectrum.

Even more than that, I would really just like to punch God in the face and say FUCK YOU! FUCK YOU FOR MAKING IT SO HARD FOR THEM!!!! I'm so angry and hurt. I feel betrayed.

Tomorrow I have to go to work. I can't tell you how badly I don't feel like going through those motions. I have next to NOTHING to give other people's children right now when my own need so much. Would Tugboat be speech delayed if I were able to be home working with him each day? My head says probably, but my heart says otherwise.

I'm hurting today, and I think I need to wallow in it. Then, tomorrow, I'll get up and be the strong mom that I need to be. I don't have a choice.

When push comes to shove,
You taste what you're made of.
You might bend 'til you break,
cause it's all you can take.
On your knees, you look up,
decide you've had enough.
You get mad, you get strong,
wipe your hands, shake it off,
then you stand.

Stand--by Rascall Flatts

An Important Event

2011-01-16T10:36:00.000-06:00

Well, Jen's at it again, asking all of us bloggers to "air our archives." This time she's asked us to link up an important event from our lives. Well, the last time I tried this, I discovered that I don't have a life! Most things that happen to me these days are kid-related. So, here's my link. It's all about the first time that 'Bot went to camp. This was huge for me because it was the first time he'd been away with strangers--very anxiety provoking indeed. I wrote this post the night before he left, and if you want to read about how it went for him, just click the newer post buttom at the bottom, and it'll take you to the post I wrote after we picked him up. Enjoy!

'Bot Goes To Camp, aka Mom Turns Into A Blubbery Mess

Apraxia

2011-01-12T11:00:00.001-06:00

You are sitting on the couch in silence,

rainbow-colored jumprope not so gently

sliding across your soft mouth and small teeth.

Suddenly, you slam your body backwards

hard against the thin cushions behind you.

Crying out in fear and desperation,

your fingers flick the air in front of you

As you make your first of many attempts

to grab and hold the words that hide from you

underneath the couch, behind the front door,

or that place they go when you most need them.

I can see the fear, frustration, and the

angry desperation, unexpressed but

in your wild eyes and loudly keening cries.

In my own way I make it worse for you,

offering you words from my own collection,

but you know they’re not your own, and YOURS are

close enough that you can almost taste them.

Finally, you look at me, and I can see

at last, you seem to have found victory.

Mom, I have to go potty. Come follow with me?

Dr. Quack: The Latest Graduate of the Apples and Autobots School of Autism

2011-01-11T11:25:00.000-06:00

I have an interesting relationship with our pediatrician. You might call it a love/hate relationship, even though I don't love or hate the man--not really. He's an excellent doctor for all things medical. He's knowledgeable, to the point--without being brusque, and he totally accepts my mom-diagnostic-system's input. For example, today, I plopped Tugboat down on the exam table and said, "He's got croup." After examining him he agreed that Tugboat does indeed have croup. It's a song and dance routine that we've performed many times. I bring him a kid, tell him what's wrong with them, and he confirms my diagnosis. He accepts that when it comes to my kids, I know them better than he ever will, and since I have a litter of four, I've seen just about everything.

Over the years, Dr. Quack has gone from knowing zilch about autism spectrum disorders to being educated first hand in the spectrum coated ways of 'Bot the Bohemian and Tinkerbell the Terrified. He was our first stop on the diagnostic road, and he was sure that 'Bot had nothing more than ADHD because autism doesn't present like that. I know. Anyway, he changed his tune after 'Bot leaped from his exam table like a bird taking flight. "That's him ON ADHD meds?" He reconsidered and pointed us towards someone more knowledgeable, and eventually, 'Bot was diagnosed. I think that must've been around the time that he realized I know more than him.:-)

When I told him we were having Tink evaluated for an ASD, he just nodded somberly. Tink has an advantage over 'Bot in that she is adorable. Now, I'm not saying that 'Bot isn't. It's just that Tink has this quality about her that makes people melt at her feet. 'Bot's response to anxiety is to become hyper or aggressive. Tinkerbell closes herself off and seems very vulnerable. This awakens a protective instinct in those who have never seen her tear into someone for daring to put their hands on Me Mou (Minnie Mouse). Dr. Quack sees her at her most vulnerable, so he was sympathetic and concerned. Or maybe we've taught him not to question a mother's instincts.

Today, I told him about my concerns over Tugboat. How he still doesn't wave bye-bye. How he's stopped babbling (except for saying mama). How he doesn't play with toys other than to carry a block or car around and throw it. The loss of eye contact. He didn't argue. He just gave me a pamphlet for an early intervention service here in town.

I must say, this is one time when I almost wish he had disagreed with me.

Lost In Transition

2011-01-09T13:37:00.001-06:00

'Bot, Princess, and Tinkerbell spent the night with my mom and her fiance last night. I think Mr. Randy (aka Papi) was a little nervous about all of them staying over. He wasn't sure if he'd be able to keep 'Bot entertained. I assured him that 'Bot would bring his DS and he'd be fine, and he was. I discussed the rules with all of the kids, and Mawmaw and Papi added their own rule, that they must be addressed with Sir and Ma'am attached to their names (we are southerners, ya know), and the kids did great. There weren't any problems. Until I arrived to pick them up.

Children with autism don't do change very well. They have a need for things to be consistent and predictable. Sudden noises are terrifying. They do things the same way over and over. Unexpected changes are very difficult, and so is transition. Transition is a change from one place or activity to another. This difficulty is primarily caused by anxiety. People with autism have an inability or great difficulty predicting what will happen next. This is not a lack of intelligence. Rather, their brain does not always connect situations and events the way that typical brains do. For example, if my husband's favorite football team loses a game because of a thrown interception, and he yells at the tv and walks out of the house, slamming the door behind him, my brain is able to connect the game, his anger, and the resulting tantrum all to each other. (For the record, my husband isn't really that childish.) For someone with autism, these connections will, most likely, not be made. Here's how it would look to them: we are watching a football game, we lost--darn, daddy is yelling (the loudness causes pain in my ears and head). Did I do something wrong? Is he going to spank me? Who is he yelling at? Does this yelling mean he's mad? Or is he excited? Dad walks out of the house and slams the door. Why did he do that? Slamming the door is not allowed--that's against the rules! Is he in trouble? Is he mad? That was loud, my ears hurt. Notice that by this point the game is forgotten. None of those events connect as being related to each other. They are seen as separate events. You can imagine how startling the world could be if people all around you were constantly doing surprising things for no apparent reason. Children with autism learn very quickly to fear changes because they have no clue what could or will happen next. For them any change is very frightening.

Anxiety can manifest itself in many different ways in children. Tinkerbell becomes almost paralyzed with fear. She stops talking. She retreats into her autistic world. When I drop her off in the mornings, she does not say goodbye to me. She stands there woodenly as I hug her, her eyes glazed over. She sometimes doesn't respond to her own name. She does not wave goodbye. It takes several minutes for her meme to get her to relax. That's right. Her meme keeps her, and even though this is a very familiar environment, and she does this five days a week, the transition is still hard. On good days she might be able to say goodbye to me. On bad days, she is completely lost in her own world. Her retreat into her autistic place is her defense in transition.

For 'Bot, anxiety means fight or flight. He either runs away (literally), or he becomes very angry and defensive. He doesn't mean to be "bad." His brain becomes overwhelmed by his rush of anxiety and triggers adrenaline. It flows through his little body, increasing his strength and cutting off his impulse control. It's hard to take 'Bot places, because his behavior outside of our normal routine is unpredictable at best. Believe it or not, I prefer 'Bot in "fight" mode, because when he bolts, he pays no heed to where he is, be it a crowded store or a busy parking lot.

Medication helps. 'Bot takes medicine to help with his anxiety, and it does. Before he was on medication, every single transition, from getting dressed in the morning, getting into the car, arriving at school, etc. was filled with so much fear that he would literally throw up. I've had to turn around on the way to school, and go back home to change his clothes and wash the vomit off of his seat in the car. I'll take a little bit of anger and defiance any day over that!

Transitions have to always be carefully managed. We make sure that we talk to 'Bot and Tinkerbell before we leave the house. We explain the rules for the place where we are going. We tell them what will happen and who will be there. We let them know what noises to expect and wrack our brains for everything we can think of that might help. However, even when they know what to expect, the anxiety is still there. If 'Bot gets in trouble at school, it will be in his enrichment classes. There will be more stimming and more unpredictable behaviors during transitions. That's just an innate part of autism.

This morning, I neglected to tell my mom and Randy to prep 'Bot and Tinkerbell for my arrival. When I got there, suddenly, Tinkerbell was afraid of the dog. 'Bot was angry and defiant. My mom was surprised at the change. None of this behavior was there last night. I told them that the behavior they were seeing is pretty typical for transitions, but those words seemed hollow and inadequate. When the kids are good and behaving as expected, it's easy to forget that they have unique needs that must be met. When they act up, it is very easy for someone to see only the behavior, and not see the cause. After a few minutes, 'Bot and Tinkerbell both "returned to normal" and we got out of there okay. However, I would like to say, emphatically, to the universe, that my children are not bad. I am not a lax parent. If anything, husband and I are probably the most diligent and consistent disciplinarians you will ever meet. We just have two kids with autism, and sometimes they get lost in transition.