QUESTION OF THE WEEK

[zacksdad]

Who/what has been the single most helpful source of information on your child's autism?

[tiny_mama]

Myself, The Internet, Library, And Parents on Cafe Mom..

Good question!!

~Jackie

[tamsmom]

Wow. What are you mind reading tonight? Lol.

I've been wrestling back and forth with some of the advice I've gotten...asking myself that constant question...what does it mean? Its like a loop stuck in my brain...what does it mean what does it mean...blah blah blah. Everytime I think I've settle the issue in my mind, the damn stuff pops back up and starts looping again. Gads...am I a constant mess any more or what?

Ok. So to answer your question....at first it was Tami's speech therapist. I had never heard of sensory processing disorder, knew nothing about autism...only knew that when I tentatively googled it...it was my kid. And my kid was totally non-verbal, totally unable to communicate and needed a mind reader. I had been trying and trying to teach my kid to point, to make an effort to communicate and while I was starting to get pointing from her...that was it. So along comes this therapist and she tells me to try teaching her sign, start simple etc...and it works! Took time and patience...but we were beginning to communicate. God how I loved that woman at that moment. Now Tami had all those classic autism signs at this point and the st mentioned the word autism but only talked about the obvious sensory problems Tami had and told me that all of her walking backwards, rocking, hand flapping, spinning, shut downs etc etc was due to sensory problems. So I stopped looking at autism other then a brief overview and started learning about sensory processing disorder and working hard hard hard on that and the speech. And we saw progress. And I took all I read and what I was hearing from the st and figured Tami would probably get a PDD dx. Read enough to be an idiot and tell myself that hey...at least its not really autism (REAL autism sounded pretty scary...did I say I was being an idiot?) and it means she'll be ok. So the therapist tells me that I don't need to get her dx'd. That I'm so good (what mom doesn't dig that?) and that Tami will be ok. So me and hubby are fighting about Tami (he was saying retarded and I was saying not retarded...just sensitive) and I was thinking about divorce so decided to go ahead with the dx so I wouldn't have to start evals all over in another state. Well, the dx turned out to be hf autism and I was dealing with it ok. Thinking ok...will do aba and it'll still be ok. Then the st gets very upset and tells me Tami is not autistic because shes not retarded. Yet I knew that the Dr was right and that the dx was right on target. And the st tells me that autism is the latest fad dx and aba is like ritalin...the latest fad for kids and harmful. Not a choice...its HARMFUL. She has another therapist that I've met but that doesn't work with Tami call me at home (during dinner!) to tell me that aba is evil, dog training, reinforces autistic behaviors etc etc and that I should try experimental drug therapy before aba and that daddies problems with Tami are because of daddy not Tami. The Dr had seen Tami's reactions to daddy and had said that daddies behavior is normal and Tami's is not. Which I really knew...but I was in denial. I had needed to hear what the Dr said because the st had been pushing that all the blame lay on daddy...and hes a great guy who didn't deserve that...but I was also a scared mom who'd rather blame him then except my kids problems at that time. Ok...I'm digressing. So anyways....she had been so much help and had given me so much insight into Tami's sensory problems that I wanted to keep her...I wanted help! And she had been the most helpful so far. But now she started telling me "not autistic" (though she was also saying "kids on the spectrum like Tami"), aba's evil, mommies know best and should do it ALL ON THEIR OWN because thats loving, and all kinds of stuff. And then I found out that her idea of "growing up ok" means not necassarily speaking, and shes telling me stories of autistic women who go to work and come home to an empty house and rock themselves calm again...and shes saying this like its the most awe inspiring, inspirational thing. And telling me that if Tami never wants relationships..who cares? What does it matter? And my brain started to loop on "what does it mean?"

So she sets me up with people who have never ever dealt with autistic kids as resources for behavior (I'd laugh if it was funny). And finally she brings me a book to help me learn how to teach Tami all those things that the st is just as lost as me on but that Tami needs...and the book is written by an aba consultant (lol) and it talks about the need to have something solid in place before your kid starts school or the schools give you nithing etc etc. And I'm going hmmmm. Then the other moms of auties here at our ASA chapter met Tami and told me to fire her st NOW and get her into aba.  

So I have fired her. I'm working on getting aba set up. I'm being told she won't and she will qualify now for long term care help with aba costs....though she definately would have in feb. And I no longer have anyone at all to turn to for help except other moms (you guys mostly!). On the good side...while I threw away a few months of Tami's time, I have made it a point to learn learn learn during that time...I worked hard with her as well and she continues to bloom...and my and hubby have found peace between us again. And now that I know more...I can look for help that really can help us. Help us with the total picture and the brightest future instead of help in learning to love autism. I don't need to love autism to love Tami...or to accept her. And accepting her does not mean I can't work for the best future I can give her.

But...some nights....like tonight....my mind starts looping on that "what does it mean" again...and wondering if I'm going to hurt her by trying to help her. And I feel sick that I wasted so much precious time. And I'm worried that in that time wasting, I threw away our chance for financial help and maybe without it we can't even give her what she needs.

But...I've learned so much from you guys here. And thats a real blessing!

[green5night]

me and there therpist

[sunnymom3]

Me, the pyschologist, and the internet! In that order.

[autismom]

Me, internet, therapists and teachers, and oh,  other moms here at Cafe Mom of course, inspire me to make sense out of all the info in my head and take action on that knowledge, very empowering.

[Jill_workathome]

Me, the internet, books, finally our DAN doctor!  Great question!  When my husband & I were given the dx, the report had a list of references--that was it!!  It was soo frustrating--I was freaking out!  So I went into over-drive!! 

Jill