Raising Sheldon

We were standing outside of the library this morning waiting for the librarian to open the book fair.  About six other kids were standing with us.  Nothing makes you feel weirder than being the one adult waiting in line to get into the elementary library.  Out of nowhere, one little boy said, "Are you Eli's mom?"  I decided I'd better claim him.  I'd already tried to disown him once this week when he refused to write lines for the librarian because, "I've lost my library card THREE times this year, and I've never had to write lines, so I'm not doing it this time!"  If the librarian were a drinker, I swear I'd buy her a beer.

So, back to the little boy questioning Eli's parentage:

"Yes," I replied.  The little boy pointed his finger at Eli and loudly said, "He likes to crawl on the floor a lot."  All of the kids turned to me.  Lauren looked like she wanted to disappear into a crack in the concrete.  I was stunned, and I had to bite my tongue to keep from saying something really inappropriate to this child.  And you feel the need to point that out because......  Mind your business, tubby.  Luckily, Mrs. M was on duty, and she fussed at him for pointing his finger at Eli like that, so I got my "revenge" by proxy.

A few minutes later, Eli turned to a different little boy who was holding a stack of newspapers.  "I can get more newspapers than that," he said.  The little boy just stared at Eli, unsure of what to say.  Apparently, the elementary grades are having some sort of contest over which class can bring in the most newspapers for recycling.  Eli didn't mean to sound so condescending.  He was trying to get into the spirit of the competition.  He sounded like a big ol' jerk.  Thankfully, the other little boy just glanced at me in shock before turning away.  I didn't correct Eli.  Perhaps I should've, but I didn't want to embarrass him in front of Mr. Pointy Finger, so I just let it go.  Eli was totally oblivious.  He had no idea how offensive his tone of voice was.  When the other boy didn't answer, he just turned away, no doubt confused about why the kid didn't join in the "friendly banter."

After school, Eli joined in a game of kickball with the kids in the after school program.  Lauren has tutoring for two hours after school, so he often goes outside, and they're really good about letting him join in.  I watched, cringing inside as he struggled to play a game he's been playing in gym class for years.  He didn't know where to throw the ball.  He didn't talk to the other kids.  At one point he abandoned the game altogether and hopped from yellow state to yellow state on the concrete U.S. map.  It was awkward in the extreme.  Luckily, this group of five kids were good about telling him where to throw the ball when he did get it.

The most difficult thing about it was watching him want.  Eli so obviously wants to join in and have friends.  It's painful to see him struggle socially.  And the thing is, he will always have this problem.  It won't ever go away.

Planning For The Unthinkable

Joe's brother died suddenly.  He wasn't sick at all.  He went to work.  He went to the store.  He never came home.  Tommy left behind a wife and two children, but they aren't suffering financially today because he was prepared.  I think that every parent has to consider and plan for the unthinkable--that they might die before their children are grown.

In my series of posts about planning for the future, I want to address something that all parents, not just those with special needs kids, need to think about:  unexpected death.  I know that some people feel uncomfortable even thinking about it, but the truth is, your children can't afford for you to NOT think about it.  None of us are promised tomorrow.  I'm going to focus on financial preparedness in this series, so please don't think my analysis is cold.  The truth is, you kinda have to be.

Plan For Both Spouses
It's really easy to buy life insurance and think that that's enough.  Unfortunately, most people don't have enough.  You really need to consider what each spouse contributes financially and plan for the loss of that.  For example, in our situation, Joe is a stay at home dad.  While he doesn't contribute income, he does take care of Noah and the house.  If something were to happen to him, I would be responsible for getting childcare for Noah, and would need help with household tasks that he now does.  That means I would have to pay for someone to maintain the yard (cause honey, I don't do lawnmowers), and I'd have to have someone come in and clean a couple of times a week--because we've seen what happens when I try to do it all by myself.  Those things would definitely have a financial impact.  Add to that the reason why Joe is a stay at home dad--Noah can't just go to a regular daycare.  He has to go somewhere where he can still receive his speech and occupational therapy.  We need to make sure we have adequate insurance.

On the other hand, I contribute all of our income.  Obviously, if I were to die unexpectedly, Joe and the kids would need enough money to sustain them until Joe was able to go to work.  They'd also need to be able to afford day care for Noah.  Also, I carry our health insurance, so Joe would have to either buy a plan or pay out of pocket until he's able to secure a job with those benefits.  Obviously, I need a lot of life insurance.

Have I depressed you enough yet?  Good.  Go buy some life insurance.

My next post in this series is going to dip into deep water--how to choose a guardian for your child with special needs.  Believe it or not, I have a humorous approach to this topic.  I hope you'll join me.

Planning For The Future

Joe and I have been thinking about the future lately.

We got Noah's yearly evaluation results back.  He's still delayed enough to qualify for Early Steps.  Their screening also indicated that it is "highly likely" that he has autism, and they recommend a full evaluation.  So, of course, we are scheduling that.

We also applied for, and began receiving, disability benefits for Eli.  Getting a letter that confirmed Eli's disabled status was jarring for Joe.  Yes, he has ASD, yes, he's in special ed, but I don't think Joe ever considered him disabled.  I'm not sure I did either.  The fact that three psychiatrists, the school system, two occupational therapists, and the federal government all consider him disabled moved Joe to tears.

It also got us talking.

Will he always be disabled?

Will he need support from us forever?

What about Lela?

What about Noah?

There are many, many thoughts and worries swirling around my head.  My next few blog posts will relate to future planning when you have children with disabilities.  I'm also going to touch on defining disability, especially as it relates to my little girl with autism.

Joe and I have discussed seeing a financial planner to help us organize and begin trying to fund our kids' future.  I'll keep you up to date on that process.  Wish us luck.

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

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

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

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

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?