Thursday, May 20, 2010

The Resource Hole...

What is the common link between parents of newly diagnosed children with Autism, Austism Spectrum, or PDD-NOS disorders? They're all overwhelmed, heartbroken, and confused. Why us? What's our next step? Who do we see for therapy? What kind of therapy do we need? What does this mean for the future of our child? Will he ever leave home? Why didn't they catch this sooner? How are we going to afford his care? And the list goes on and on and on.

So now what? Your pediatrician, if you are lucky, will help you schedule an appointment with a specialist for the ADOS screening. And then you sit and cool your heels for 6-12 months while you wait for that appointment, tirelessly searching the internet, trying to find a fix, and being bombarded with various different groups who have different ideas of what causes Autism and how best to treat it. Everything from vitamin supplements to treatments you would liken to a form of witchcraft. And so you sit, waiting for that magic ADOS appointment with a specialilst who will answer all your questions and make everything better.


Please don't misunderstand me, they all mean well. These people devote their lives to understanding the cause and effect of Autism. They really, really want to help you, and you really, really want them to. So you go through the test, they give you a score and a packet of information to take full of "valuable resources" that will help you once you get home. Yay! You're moving forward! And then you discover that half the information is either obsolete, or conflicting, and not much of it, if anything, tells you what your next step will be. And so begins the trials of the resource hole. You begin to realize there is no one resource that will get you started in the right direction, tell you what to do when situations change, and hold your hand through the process. You will now have to do some research.

And as you research, your information becomes more conflicting.

The specialist says you need 40 hours of therapy a week. The family resource coordinator with the county says you only need 3 plus parental training. Several resources given to you by the specialist are anti-vaccine advocates. Your pediatrician thinks you are a monster if you chose not to vaccinate, the specialist says they don't really know if vaccines are the cause or not. Some therapists believe pechs are a great way to boost language, some think it hinders it. Some believe your child should be in a specialized class for autistic children, some feel that they need to be in amongst typically developing children. And as your child progresses or regresses, new challenges appear. How do I safeguard my home. How do I get my child swim lessons? What's the best way to handle the dentist chair?

Autism is still so very new to the medical community, and at the rate it is being diagnosed, resources are understandibly limited, and at times, hard to find. But that doesn't mean it is acceptable. And that is why this blog is here. To offer hope, support, and direction to those who are struggling with the challenge autism presents, through local organizations, and a community of parents who have been there, done that, AND been successful.

This blog, in the near future, hopes to provide forums for people to connect and share experiences, best practices, prayer, and insightful commentary regarding common challenges and current events related to cause and treatments of Autism and related disorders. Please feel free to leave a comment or feedback as to what you would like to see available here. God bless you and thank you for joining!

No comments:

Post a Comment

Popular Posts