Thursday, March 12, 2009

#3 What surprised you the most about autism in the beginning?

How did you overcome/deal with your surprise?

For me, the biggest surprise was the lack of a protocol for treatment. When I was dx'd with gastric ulcers, the doctor had a specific protocol to treat them. Ditto with my gall bladder. But for autism, a brain disorder, there was no protocol. I now completely understand why there isn't a protocol in place. Every child with autism is so different that no one therapy or protocol will help all children. Also, some things that we do now as "therapy" for Jack are really normal kid things, like gymnastics and school. I felt like we should be doing something more... I don't know... unusual!

It was left entirely up to me and George to decide what to do, and much of what I read left me more confused than before. The developmental pediatrician and child psychologist gave good guidance, but in those early days, I was really too ignorant to understand much of what they said or why they said it. The big picture did come together as we started doing "stuff," but I felt really lost and directionless at first--a very unhappy feeling.

Appendix C of The Autism Sourcebook helped a bit because it lists all treatments alphabetically and says what aspect of autism each treatment addresses. (The rest of that book totally freaked me out, though!) In retrospect, I really wish I'd read Overcoming Autism then. That book would have been a huge help, and it's my number one recommendation for anyone who's just starting this journey or feeling lost on it. Huge thanks to Karen D. for sharing that one with me!


tinamarie said...

Yes I was also shocked that there was no treatment plans or suggestions on where to start. I was so lost at first. Thankfully I had a wonderful boss at work that let me search the internet about Autism when I was not busy. I did not have a computer at home. All of the different treatment options and therapies on the web really shocked and overwhelmed me. I talked to Tony's pediatrition and he couldn't really tell me anything except to ask the school district for help. I did ask his teacher that help get him diagnosed and she gave a book that was written by a mom that lived in Madison WI where I was living at that time. Most of resources pertained to that area.
I did teach myself as much as I could about all of the different options from the internet. Then figured out what was possible do to actually do.
I remember thinking several times how would I have learned everything and know what to look into without the internet?

We will be happy to share that the school letter with you. Do you have my email?

Susan Raihala said...

Tina Marie,

I don't have your email. (If you're a subscriber, I only have the email address alone and can't tell which one is yours.) Please send me an email from my profile. I really appreciate your input and help!


maiahs_momma said...

I would have to say the lack of programs, lack of treatments, or steps out there that you had to follow to get the help you are doing it basically on your own. Then I was surprised that there are no support groups for those who have reserved diagnosis.


Anonymous said...

The first book I read was jenny mcarthy's book. Which I enjoyed but it scared me half to death. The thing that made me overcome my anxiety was a quote she said it was when you tell people your child has cancer they bring food. When you tell them your child has autism they hide from you in the grocery store. For me it made me think how different my life would be and it honestly made me angry. I thought of how people would react. Also how I might have behaved if it were a friend in the same situation. Seeing my child tantrum and not being able to stop it made me feel like a bad parent considering I used to judge every parent in the store who I thought could not control their kids. I would say Having a child with Autism makes you a stronger person.