Wednesday, April 3, 2013

Light It Up Blue for Autism Awareness!

If you didn't already know .... yesterday was Light It Up Blue for Autism Awareness Day.  I shared some of Nathan's story in the post prior to this one.

Nathan is a brightest shining star in a moonless sky.  He is still a very happy boy but he's so often stuck in his own world.  It's hard to get his attention - he ignores you for awhile.  Saying Nathan ten times doesn't cut it.  No... I have to do the whole "1 ....2.....3...." thing to get his attention.  The whole counting system works with him.  When I count, he realizes that I want his attention right away.  He's constantly sucking on his shirt (as you can see in the above picture) or has something in his mouth.  He went from putting his head down on the floor and turning in circles, to flipping.  He'll flip on anything that he can flip on.  It was the bunk bed, he'd grab onto the boards on the bottom of the top bunk and flip on those.  Splinters were not his friend.  He also flips on the closet rod.  We had one that hung from the upper rod creating a second - lower - rod.  Well, that wasn't for clothes - no - those got dumped on the floor and he'd flip on there.  He had his own uneven bars - only it was one bar...   and currently - we got him a little trampoline ... so he mostly flips on the handles...
Oh right ... and his toes are his FAVORITE part of his body to suck on.  Nathan's favorite thing to do is to be watching videos.  On the computer... and on the cell phones.  He will just sit on the couch or lay on the trampoline and watch videos.  If the computer is available ... he'll be watching youtube on there.  His favorite things are funny Cats, Mario, Yoshi, Kirby and other video game things... oh right, Minecraft and Roblox, too.  He watches walk throughs or silly things that kids do with toys ... whatever he can.

He doesn't flap, but he will rock.  He hides in cupboards and mostly under blankets or in small areas.  When he's really upset, he'll go hide under his bed.  He makes eye contact... sometimes, but I have seen him make less and less eye contact as time goes on.  Usually, now, if I want him to look at me, I have to tell him to look at me.  Otherwise he makes contact for a moment or two, and then looks away.  He is constantly on the move unless he's watching youtube.  When he's watching youtube or when he's sleeping is about the only time he isn't moving.  He won't eat things with certain textures or taste.  He won't eat potatoes, very rarely eats french fries.  He avoids red foods like crazy, spaghetti sauce, ketchup, juice that's red.. if it's pink, he *might* eat/drink it.  The only red thing I've seen him eat is red popsicles.  He isn't a dipper.  He won't dip anything in sauces.  If sauces or dips are on his plate, he'll refuse to touch it.  His go to food is chicken nuggets, especially if they are from McDonalds.  He also loves peppers, carrots, celery, grapes, and bananas.  And Lucky Charms is referred to as "Nathan Crack" .. he will eat Lucky Charms all day long.  Of course, he will only eat the marshmellow..  and might eat the cereal but mostly that gets thrown or dumped on the floor.  Bananas were a huge achievement!  When he started out in pre-school, I told his teacher not to even try to give him bananas or he'd throw up.  Well, I went to get him one day and she pulls me aside and says "So we had bananas today, and we asked Nathan to try it."  I snickered under my breath and asked her how that went.  She said, "well, he threw up."  She smiled at me and said, "next time I'll listen to you."  But we do continue to offer and let him try stuff.  Eventually one day, he picked up a banana and had no problems, now he loves them.

Speech is a huge issue.  He is "non-verbal" ... but I don't like to say that he's non-verbal because he does talk.  He makes sounds, he says words, he likes to sing and carry on conversations with himself.  The problem is that you can't understand him.  If you've never been around him - chances of understanding what he's saying is about 10% ... Family and friends that around him have about a 50% chance.  We understand him mostly when he's repeating stuff we say (that's like cheating though, right?)  ... or when he's giving us a clue (like pointing at something).  He has a few clear words.  A lot of the time though, we have to play twenty questions.  And it's yes or no questions.  It's a process and it royally frustrates us all, especially him.  He has a Pod (one of those books with the pictures in it - where you point to the picture) ... but he doesn't like to use it and it confuses him.  We knew that the best thing for him would be an electronic device.  And so last May he went through the process to get one, and took to it right away ... he was a champ at it in a matter of minutes.  However, after a snafu of the paperwork getting lost in in cyberspace ... and finding out they never got it after months of waiting to hear if he was getting it, and having to resubmit everything - we find out it's been denied.  That broke our hearts.  We're appealing the decision but I just have a feeling that they won't cover it and we'll have to pay for it out of pocket and I just don't know how we're going to be able to do that right now.

So ... that's a little peek into who Nathan is...   he is my superhero :)

We spent today in blue for Nathan.  For Noah and Kaedyn who both have Sensory Processing Disorder (as does Nathan) ...  and for all the other kids we know who are on the spectrum and all those we don't know.

 We are always impressed with those who Light it Up Blue for Autism.

 I leave you with the 2013 Light it Up Blue PSA  :)

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