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Reality, cheque please!

October 14, 2011

How do you tell your kid you can’t afford for them to have autism?  Can’t seem to think of a good way to bring that up in a conversation with him. 

Autism is one of the most expensive diagnosis you can get for your child.   The therapy, treatment, diets, meds, toys, equipment and all that… it doesn’t stop.  Its not like a round of the chicken pox. Its a life long expense.   And we’re just getting started. 

I still haven’t decided what sort of therapy we are going to do.  The people I’ve talked to don’t seem to understand that it seems impossible to find someone to come to our house to give him 25 hours a week of ABA therapy.  The closest perosn to do the beginning eval to tell us where to begin is in Edmond, which is about 2 hours away.   That’s just the test to get started.  Then figuring out how to get it done.  Dr. Kellie told me that if I did an hour and Tom did an hour and we just incoporated it into our day, it ‘might’ work.  Meaning.. it might not. 

I haven’t watched the videos on youtube to get a good feel of exactly what I will be doing but Dr. Kellie said that sessions are usually 1 to 2 hours and go from a learning activity at the table to a play, floor time activity.  And Evie will be doing… Lord knows what.   How do you tell your other child that they have to go to mother’s day out because they are in the way?  And I really don’t want her to be away from me yet. She’s not even 18 months.  

The studies from UCLS were of preschoolers going to a school 40 hours a week and having ABA therapy from trained specialist all day long.  They had a 50% success rate. So I wonder what % of a chance I have? 10%?  0%?   

In addition to ABA therapy, Rett needs daily speech therapy to work on pragmatic speech.  Also daily OT to work on whatever issues are there, which we aren’t sure yet.  Probably low muscle tone which can result in difficulties writing and doing other things with his hands later on and perhaps balance.   Once we pay off our $1500 deductible,  that therapy will come to around $700 a month.  Just for speech and OT.   And I’m not sure 30 minutes is even enough.  I can’t seem to find anyone to tell me that either.  

As much as I would love to do the perfect program for him, our state lacks resources and I lack man hours myself.  My other option is to find college kids and train them to do the  therapy.  I’d need at least 2 kids.  Then each one do around 13 hours a week with him.  Finding someone to do really hard work for $10 an hour might not be all that easy.  

These costs are things you never really think about when you consider how many people are getting a diagnosis a year.  With so many children needing appropriate therapy, why is our state providing basically nothing for these children? 

The scariest part of our diagnosis is that Rett CAN be reversed.  We are standing at the choice between our child aquiring skills to be a normally functioning adult. Or not.  And there are big dollar signs in this equation. It doesn’t seem fair.   

I am a pretty thrifty person. I always buy the kids’ clothes a season ahead on clearance.  I used to be a major couponer, though I’ve gotten lazy lately. But the only way I can see to get the therapy he needs for cheap is to either hire people who are not all that great or do it myself.  The first option is depressing and I simply don’t have the available time for the second option. 

So we are faced with the impossible situation of helping our son with limited resources in our state and funds in our bank account.  But we have a lot of love and dedication in our family.  I have an education degree.  I know what REALLY goes on in the school system and can call them on it.  I have also been blessed enough to get in contact with a good circle of moms with lots of differing opinions but with great information and open minds to let me make my own decisions on Rett’s therapies.  I’m sure we will figure something out.  I just hope its good enough.  I hate feeling like we are gambling with his future.

One Comment leave one →
  1. October 14, 2011 2:56 pm

    I can relate so well, it makes me want to cry all over again. I can feel my initial despair when I realized that we could do so much for Sam, if only with enough resources. We’ve managed to do enough and he is making progress, but it is a complete lie to say there isn’t more that could be done. Unfortunately, we all seem to be trapped in a system that would rather pay disability for adults who can’t fully function in society, then to help us parents get the resources to give them the intense therapy our children need in the early years. It makes me sick. I can’t talk about it much because it makes me angry-very angry. I try to keep a smile on my face, I do the best I can each day, I try to see the positive and celebrate the little bits of progress we see, but deep down I wish I could do more. I wish there were more hours in a day, less demands from all my other children, more money in the bank account and more energy in me to do this. It is exhausting on every level-as you are discovering. I hope you find the answers that will at least give you some peace. I wish I had more positive words to share.

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