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Autism at the Beach

October 17, 2011

 

Straight from getting our diagnosis and second opinion, we headed to the beach.   When I came home and went through the pictures I cried.  Because you don’t leave autism at home when you go on vacation.  It goes with you. And the photos I took of Rett doing the things he liked to do at the beach showed the things that were just pointed out to us.  He’s been doing them at the beach all along. But he was so little, it didn’t seem strange.  Its starting to seem stranger and stranger.  I thought about people walking by. Did they look at him and see the truth? See what I missed? Were they analyzing my child? Were they measuring him up to ‘normal’ standard?  Did he fall short in their eyes? Or instead.. did they just see a little boy who wasn’t dressed for the water but that climbed in anyway and was enjoying a day at the beach.


 

Rett’s favorite things at the beach were the shells, the sand and the board walk.  Something about running barefoot on the hard wood just did something for him. He ran ten or fifteen laps each time we went out.  The ocean scared him a little this time. He has never been scared of it before.  The waves were really ferocious because of storms so maybe that was it.  Or maybe it was all that ‘What lives in the ocean? sharks? whales?’ I can just see his little mind imagining a whale eating his toes.  He refused to be in the waves at all. Tom carried him in once and they kicked around and had fun.  At the very end he walked in the surf holding onto our hands.  Hopefully next time he’ll be over the fear.   Evie loved to eat the sand, shells and run as fast as she could into the ocean so that we could all have heart attacks.

 

Its hard to believe the next time we go to Perdido Key, Thaddeus will be with us.  Almost the same age as Rett was the first time he went.

There are parts of these emotions that are impossible to share.  And people’s responses to what I manage to share sometimes make me feel more guilty. The things they feel they need to point out.  I guess there is no good response to someone going through a new diagnosis.  Just to take it a day at a time.

 

What most people don’t realize about getting a diagnosis like this is no one tells you what to do.  Your child is autistic. That will be $1,000 and good luck!  They offer you a quick intro to therapies, which may or may not be in your area.  A list of some reading to do.  Websites and articles to read, get you in touch with other people and leave you alone.  All alone.  To make these choices and decisions for what is best.  If they knew what was best, wouldn’t they tell you?  The horrible gamble you take with your child is heart stopping terror.  The balance between what is good for his future and what is good for his present.  And you have to collect what data you can, sift through opinion and make a life long choice for your child.

 

Meanwhile I feel like we are throwing money at everything.  First the diagnosis, now the ABA eval which I have no idea how he will get therapy once this $560 test is over.  Our deductible doesn’t start over until January so I have to decide if we want to go ahead and put him in daily speech now or wait a few months when it can go towards deductible. OT isn’t covered at all until January so the same with that.  Plus there are online videos you can purchase subscriptions to that provide training, materials to use and a million other little costs that add up.

 

And in the end, you wonder how pathetic it is that you are worried about money when your child’s future is at stake. If he needed a life saving operation, surely we would pay whatever it took? Do whatever it took?  Maybe it would be easier to not have a choice. To just do what we had to do.

 

I did a little bit of work today gathering information.  Rett has his initial ABA exam on Wednesday at the only place in the state that can do it which is an hour and a half away. She asked where I lived and I told her. She asked if I realized they were an hour and a half away and that there were hardly any services in my area.  And I said yes.  What can you say?  I wish it were different?

 

I called insurance to see about them covering the diagnosis we had gotten done.  I had to call 3 or 4 different numbers, set up an online account and still that job isn’t entirely done. I’m hoping that once we get some of that pushed through, Rett will have met his deductible and I can put him in speech everyday!

 

Tomorrow is mother’s day out and I will be taking a trip with Evie to the dollar store to stock up on clear plastic containers. More about that tomorrow!

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