10.22.2012

OT's visit and the topic of wait lists

The diagnosis of Autism was followed by a flurry of activity. Hardly a day went by that we didn't have an appointment, received a phone call or met with some sort of specialist. We restated Sophie's entire life history countless times, eagerly latching on to any promise of help. We had felt helpless ourselves and were still hopeful that someone will come in and devise a "fix Sophie plan" which will yield immediate and profound results. However after speaking to each sympathetic yet visibly overburdened worker we began to realize there was no such plan. Each phone call interview placed Sophie on a wait list spanning a couple months to over a year long. Everything we read stressed "early intervention". How is that to happen if she is to wait optimistically a year, realistically closer to two for IBI, apparently THE autism therapy method?

I suppose that many parents resort to dipping into the bank account and opting for private therapy. Unfortunately that is not realistic for us. At the same time we do wonder if we really want her to be drilled for 40 hours a week, rewarded with a tidbit of food for each socially appropriate gesture she is able to replicate. Perhaps in this case the waiting list is a blessing, buying her some more time to just "be", regardless how unproductive her just being is seen as through the prism of ABA.

Sophie being Sophie

However, even in this seemingly bleak purgatory of bureaucracy and wait lists, we did meet some wonderful and dedicated ladies who will begin working with Sophie in a more timely matter. We have met with the speech therapist previously and the occupational therapist today. Both seem to "get" Sophie, the OT especially. They gave us useful pointers which we will definitely implement in our own little home-run Autism centre. On good days I think we are doing well. But on not-so-good days I worry that we are missing the critical period, that we should be striking while her neurons are hot so to speak. I have a feeling though that there would always be self-doubt, no matter what we did.

 

3 comments:

  1. At least from my perspective, I would say there really would always be doubt no matter what. It's a very frustrating part of all of it, because so many people seem so sure they know what is the right treatment, and all the sure people don't agree with each other, and whichever road you pick, it closes off other roads. And so many books and blogs I've read feature people that just somehow "find" the money to do ABA or IBI on their own, and I simply can't understand how they do. It would cost more to set up our own program than we make in a year. We wouldn't eat. But I loved what you said about buying the time to just "be". I think that's important. And of course Janey's experiences have no real predictive ability for anyone else, but when she finally started getting ABA (at age 5), it didn't do much. She still gets it, and I think the one-on-one teaching time helps her, but I am not sure if the ABA in itself really does, although we have a wonderful ABA therapist.

    Sorry to write so much! Reading about you and Sophie just brings back so many memories. I am thinking of you.

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    Replies
    1. I am glad you write! After doing some more thorough googling I'm starting to get the sense we are really the odd ones out in the Autism community with our girls. I've found plenty of blogs centered on boys and while many issues apply to us of course, somehow I feel that the Autistic girls are different than their boy counterparts (well duh, just as NTgirls are different than boys!)
      But anyway you got the point of my post, I too read too many memoirs where money for private therapy was somehow "found". And here I am having trouble "finding" it for a new pair of shoes... Lol

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  2. HI! sorry to reply to an old post, just wanted to say where you were in 2012 i am now in 2013, but here in the DR (Dominican Republic) there is nothing on autism, my doctor suggested i go back home to the states but i cant do that right about now, so im pretty desperate trying to get information as to how i should proceed with her, how i can help her until we can get her some real help. we took her to a `specialist` that was soo expensive as insurance doesent cover these visits or therapies, and there is so little known about the subject. i thank you both for sharing your amazing stories and struggles and your happy times as well, if it werent for what ive been reading on this blog and on Mrs Suzanne`s blog i would still be crying every night with worry. take care!

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