It's Not Like This For Everyone

This is a post for family and friends--people who know us personally.  Tuesday, April 2nd is World Autism Awareness Day.  If you are friends with me on Facebook, your feed will be cluttered up with cute pictures and slogans about autism awareness.  If you come to our house, the light on our porch will be blue.  If you see me that day, I'll be wearing blue and my necklace that announces that I'm an autism mom.  But here's the thing:  that's only part of the story.

You see, you are wonderful.  We are blessed with a family and group of friends who "get it."  I'm often shocked by the stories of families in the autism support groups who talk about family and friends who no longer invite them over or have much to do with them because of their child's autism.  We have never lost anyone because of autism.  Even when we have to leave the wedding shower early because the kids are beginning to get overwhelmed, you don't get mad.  When we go to the fair, and Eli has a complete meltdown, you take it in stride.  We are so blessed to have you.  It's not like this for everyone.

Our friends,  you too are so sweet and supportive.  You share my Facebook posts, and you read my blog.  Thank you for learning and trying to understand.  It's not like this for everyone.

Our family is blessed in so many other ways too.    Eli has Asperger's.  He faces many challenges every day, but there is so much potential in him.  A career is a definite possibility for him.  For many people with autism, that just isn't true.  There are many people with autism who will never hold a job.  Remember when he used to have violent meltdowns?  The time the cops were called when we were on vacation?  Thanks to medicine, social stories, and interventions, Eli has been able to learn how to cope better.  It's not like that for everyone.    Many families are faced with heartbreaking decisions, like putting their child in a home, because they are unable to reach the child enough to put those interventions in place.  So, when you see Eli, please know that he has worked very hard to get where he is, but autism isn't like that for everyone.

Lela was diagnosed with autism when she was three.  Remember how devastated I was?  We started her in therapy immediately, and she blossomed.  She is now a girl with Asperger's, having regained everything that she lost in those early stages.  Since she started kindergarten, we have seen her little personality bloom like a flower in the sun.  It's not like that for everyone.  Some children with autism go years and years, and they never make progress.  Lela is learning to cope, and I can easily envision attending her college graduation and even her wedding.  Yes, my Lela will be fine.  Not every autism mom can say the same.  Many have daughters on the spectrum who will never get to be mothers.

My Noah?  Well, he's the poster child for early intervention.  He's gone from little engagement, no eye contact, no pointing, no speech, to five syllables at a time, a laugh that is like music, a playful personality, and while he is our most affected child, I think that he's going to be okay.  Maybe even independent some day.  Remember when we were teaching him how to point?  Oh, I loved you for helping with that at family gatherings.  Well, there are some parents who are still waiting for their seven, eight, nine year old (and even older) child to do that.

I love all of you so much, and I'm grateful for your support.  This year, my autism awareness message is one of thanks, but I also want you to remember that the autism you know through us is not everyone's autism.  We don't spend our time praying for a cure.  I'd like to see money raised by groups like Autism Speaks going to support adults who are living with autism now.  However, there are many families out there, who pray every day for a word, a gesture, a connection with their child.  Autism isn't like this for everyone.

Fighting Back

It happened.  That thing I've been dreading since Eli was diagnosed with Asperger's.  That thing that is so prevalent, even though the schools say there is zero tolerance.  Eli got into a fight at school.

Eli has been bullied this year by this same kid.  The kid curses at him, calls him stupid.

Eli has been reporting this kid to his teacher and assistant principal.  His teacher does a good job of keeping the kid away from him in the classroom, but P.E. is a different story.

A couple of weeks ago, there was a knock on my classroom door.  I opened it and found a very upset Eli.  He had run out of P.E.  The class had been divided into small groups, and Eli was on a team with the bully and one other boy.  They had pushed him.  They had cursed.  Eli went to the teacher and asked to move to another group.  He didn't explain why.  The teacher just assumed that Eli didn't want to do the activity, so he told Eli no.  Eli ran out.

Eli and I spoke to the assistant principal.  The assistant principal explained to the teacher what was going on. It was all documented in the assistant principal's computer.  Eli returned to class, and the bullying continued.

The gap between what Eli explains and what is really going on is huge.  Even we didn't understand the full extent of his frustration.  After listening to him talk about what was happening, Joe gave him a rule to follow: report it three times.  After the third report in one day, if the kid is still messing with you, knock the hell out of him.

Well, it happened.  This week, Eli's teacher contracted the plague, or maybe just the flu, but anyway, she was out all week.  And the bully saw his chance.  On Tuesday, he started in on Eli.  Eli reported to the sub that the kid was messing with him.  The sub told the kid to stop, and the bullying got worse.  Eli went to the office and spoke to the assistant principal.  The assistant principal called the bully down and spoke to him.  They were both back in class, and surprise, surprise--the bully wasn't fazed by the A.P.'s little chat.  He cursed at Eli again.  For the last time, Eli told the substitute teacher.  That had  no effect.  An hour later, I was sitting with Eli in front of the assistant principal.  Eli had punched the bully three times.  The bully didn't hit back.  My sweet baby hit him in the arm, and his upper body strength is very poor, so the stupid jerk probably didn't even feel it.  Eli very calmly looked at me and said, "I did what daddy said.  I reported it three times and then I hit him!"  Other children in the classroom confirmed Eli's story that the kid had been picking on him.  The bully got after school detention.  Eli got a day of ISS.

We are seriously considering homeschooling for the next three years.

My boxer

You Are My Sunshine

My Pawpaw died today.  He is gone.  He was a constant presence in my life--a force that would always be there to temper the storms.  Now, that shelter is gone, and my family is three hours away.  Since I can't grieve with them tonight, I am turning to writing. 

I grew up in an angry household.  A house where loud  screaming matches were commonplace.  My parents' marriage was tumultuous, to put it lightly.  Luckily, my grandparents were always right next door.  My Pawpaw would show up at the door, never to break up the argument--always just dropping by.  He was my life raft in the scary sea, the voice of reason, the bringer of peace and quiet.

As a child, my Pawpaw had this elusive quality about him.  He was an open book and a mystery all at once. Every adult I knew liked and respected him.  He was the Bishop at our church (I was raised LDS, so basically he was my pastor) for most of my life.  He was a spiritual guide, and I never feared talking to him about anything--even as I grew from a child to a teenager.  He baptized me.  He gave me Priesthood blessings when I was sick.  He brought me to youth activities when my parents didn't attend church.  But my best memories of him, the ones I keep replaying in my head tonight are from my very early childhood.

I loved spending time with him.  Staying the night with my grandparents meant a chance to eat popcorn in the living room and watch John Wayne with him.  However, my most special memory, the one that I always carry with me, was gardening with him.  My grandma had the greenest thumb of anyone I've ever known.  She could grow anything, Pawpaw and Mawmaw's yard was full of flowers and trees of all kinds.  My Pawpaw worshiped my grandma and devoted himself to both her and her plants.  He tended them as diligently as she did, and on summer evenings, just before sunset, I would walk through the yard with him, watering all of the plants.  And Pawpaw would sing to me.  Even today, in my mind, I can smell the grass and hear his voice.  I would walk along beside him, my head not quite reaching his hips.  He would sing "You Are My Sunshine."  It was my favorite, because of course, I was my Pawpaw's sunshine.  His singing was terrible.  Only a grand-daughter could love it, but love it I did.  

I called him and spoke to him a couple of weeks ago.  He didn't know who I was.  Even the explanation that I was "Mike's daughter," didn't help.  "I'm sorry baby, but I just can't place you," he said.  We talked for about ten minutes or so.  Two strangers.  When we hung up, he said he'd appreciate me remembering him in my prayers. He had forgotten his sunshine. 

I will remember him forever.

You are my sunshine,

My only sunshine.

You make me happy

when skies are grey.

You'll never know, dear,

how much I love you.

Please don't take 

my sunshine away.

Epic Echolalia Win

Noah has a pattern of speech called echolalia.  This means that he repeats things a lot, and when he can't find his own words to say something, he will pull lines from his favorite tv shows, movies, and other people around him.  This is known as delayed echolalia.

Noah also uses immediate echolalia.  If you ask him a question, he will sometimes repeat all or part of your question right back at you.  However, he's moving beyond that and beginning to rely on delayed echo and his own words.  This is a good thing, and it often leads to some hilarious moments around here.

About a week ago, Eli and Lauren were fighting over what to watch on tv.  Joe was annoyed with their arguing, so he tried to help them settle it.  "Lauren," he said, "you've been watching this Honey Boo Boo crap all day!"

Tonight, as the kids were finishing up with eating supper, Eli said he was going to watch tv.  Noah piped up and said, "No Hun Boo Boo cap!"

Yeah.  I call that a win!

We Didn't Go Down With The Ship

The twins and I had an adventure today.  We went to a Titanic exhibit at our local science museum.  The exhibit has been in town since September, and I've been pestered about it since a couple of weeks before it arrived.  Eli got wind of it from a commercial, and it's been all I've heard.

Eli is a huge Titanic fan.

A couple of years ago, I wouldn't have even considered bringing Eli to something like this.  Artifacts rescued from the ocean in thin glass containers?  Not in my budget.  But now?  Yeah, I felt like he could handle himself without breaking something.  That's one advantage I have with having the kids spaced so far apart.  I've seen tremendous growth in Eli, and it's comforting.  I know that progress happens.  That's not to say that big events like this are easy.

The exhibit was pretty awesome.  At the entrance, we were handed a replica boarding pass.  The pass contained the name of an actual Titanic passenger.  There was a bio of the passenger, an explanation of how they came to be on the Titanic and their travel class.  Lauren and I both had third class passengers.  Eli was pleased to have someone from second class.

The walls of the exhibit were decorated with black and white pictures of the ship.  There were large photos of important people and passengers, as well as the story of the tragic journey, told in a mixture of facts and quotes from survivors.  There were also rooms set up as first class and third class accommodations.  A couple dressed in historic costumes told how they "survived" the voyage.  This captivated Eli, and he approached one of the actors and asked, "Are you a survivor?" with wide eyes.  The actor gently explained that he plays the part of a real survivor.  Eli lost all interest in him after that.

We had to go through the exhibit twice.  The first time, Eli was too excited to focus and take everything in.  There were pieces of the ship, dishes, and other artifacts on display, and he wandered rapidly from case to case.  There was a replica of the iceberg, made of real ice, that we were allowed to touch.  Eli was amazed by this.  He wandered around it until he was able to figure out how they kept it frozen.  After that, he was ready to take in the audio-visual aspects of the exhibit.  There were several small screens throughout the exhibit that showed how the ship was build, re-enacted how the ship sank, and finally, one that showed how the artifacts were recovered.  On the second walk-through, we read the bios and facts on the walls.

At the end of the exhibit, we were able to look at a passenger list to see if "our" passenger from our boarding pass survived or not.  All of ours did.  And we did too.  Eli is getting really good at managing his excitement. He stims more to do this.  People watching us today would've seen a boy rocking side to side and wringing his hands a lot.  He was a little too loud.  But, you know what?  We did great.  I'm so proud of how far he's come.  And if you have a young one who can't handle things like this yet, give them time.  You never know.

Lauren, Eli, and I at the exhibit

The P Word

There's a new word floating around our house.  It's dirty.  It isn't something to be taken lightly.  It strikes fear in the hearts of those who have to clean up the mess it can leave behind.  That's right.  I'm talking about THE POTTY!

We are embarking on the nasty, frustrating, perilous potty journey with Noah.  God help us. 

Potty training sucks.  When your kid is autistic, it really sucks.  There's no way around it.  Potty training a kid with autism is full of so many pitfalls that just aren't there with typical kids. 

First, there's the fear.  Lots of typical kids are afraid of trying the potty at first, but with a kid on the spectrum, fear is an understatement.  Kids with autism are afraid of new experiences in general, and a potty is a HUGE change.  Then, of course, there's the fear of the potty itself.  Noah is terrified of ours.  He happily follows us to the bathroom, but trying to get him to sit on it--uh, nope.  Ain't gonna happen.  Joe has tried a couple of times, and the results weren't pretty.  At all.  The worst thing is that he can't really tell us what exactly he's afraid of.  The noise?  No.  He likes to flush it.  The sensation of sitting so high off the ground?  Well, considering that he stands on top of our sofa and jumps off, not likely.  But he's terrified.  No way around it. 

That brings me to the next obstacle:  communication.  We are luckier than many in that Noah does have words.  He can tell us "I ni poowet," which means I need a new diaper.  We'll be able to teach him to say "I need potty."  Many parents of kids on the spectrum don't have that luxury.

Body awareness is another problem.  Noah has issues with body awareness, and I think that's going to be our biggest challenge.  We have no idea if he can feel when he needs to go.  I think he might.  The other day he told me he needed a poowet, but when I changed him he was clean and dry.  Ten minutes later, he actually went.  So, I think he felt that he had to go.  But I'm not sure if he can always do that.  The solution to this is basically to put him on a schedule.  But it's arduous and takes time.  And that's okay.  We have time. 

Another obstacle for training a child with autism is sensory issues.  With Lela, sensory issues worked in our favor.  She hated the feeling of a wet diaper, and she was wet trained by 18 months.  On the other hand, Eli loved being dirty.  He was a smearer.  I won't go into that in detail, but basically until he was 8, Lysol and bleach was always in stock here.  Oh yeah.  Thankfully, Noah doesn't seem to have that inclination.  He seems generally unaware of what's going on down there.  He asks to be changed when his diaper feels saggy.  That bothers him more than being wet or dirty. 

You'd think that after training two other kids on the spectrum, I'd be ready.  Wrong!  Each child is different, and we won't really know what we're facing until we're into it.  Lela was super easy.  She was done by age two and never regressed.  The only unexpected thing with her was that she insisted on using the adult potty.  The training potty she had played music, and it scared her.  Eli was four before he trained, and then we had to retrain him after he started school.  Training him was one of the most frustrating things I've ever done--for both of us.

So, with Noah, I'm taking things slow.  We bought a potty.  We got him to sit on it wearing his shorts and a diaper.  Next, I want to get him to sit on it while we potty, hopefully so he will associate what we do with his potty.  That's a goal for right now.

Wish us luck! 

Words of Goodbye?

My father-in-law passed away on Friday.  He was a wonderful man, and we will all miss him so much, but he had been sick for such a long time.  I'm glad that he's finally at peace.

We laid him to rest on Wednesday.  My mother-in-law didn't want the children's Christmas to include the memory of burying their grandfather.  So, we did our best to have a normal Christmas for the kids--he left nine grandchildren, seven of whom are twelve and under.

My father-in-law was a very special man.  He spent the majority of his time volunteering and doing for other people.  In fact, he helped found the camp for children with autism that my kids now attend.  And you know what?  He did that years ago.  Before autism was more understood.  Before he had grandchildren with autism.  Isn't that amazing?

My father-in-law and grandkids, Halloween 2011

His grandchildren were the light of his life.  So, at the funeral, my mom-in-law wanted to give them an opportunity to say something about him.  Lela bravely made her way to the microphone.  She told of his nickname for her, and how he played with her.  However, her little comments were interrupted.  Noah followed her to the microphone.  He pushed her aside and yelled, "Shut up Dog!"

Noah says that a lot.  I guess in the grand scheme of things he could have said something much worse.  He repeats a lot of what he hears, so yelling SON OF A BITCH!  wasn't out of the realm of possibility.  We all laughed.  My father-in-law would've thought it was hilarious.  So, I guess at the end of the day it was okay.

We have lost our patriarch.  Our family won't be the same again.  But the memory of his work on behalf of others will live on.  Eli spoke at the funeral after the Lela/Noah fiasco.  His strongest memory of his grandfather was of Pawpaw buying a Christmas tree and presents for two cognitively impaired men who had nothing.  I can only hope that my legacy is as good as that.