You are your child’s advocate. Repeat: YOU are your child’s advocate. Not the schools. Not the therapists. Not the doctor. Not the government. Not some lawyer. Not even an advocate you get to tag along with you to IEP meetings. Not your support group leader, your best friend, your mother or mother-in-law, but you and your spouse. It is your job. Take it seriously.
But you say, “I’m overwhelmed! I don’t know how!”
Well, you’re gonna learn.
You’re gonna ask questions and research. You’ll buy great books and join a support group and make it your business to know how this diagnosis is going to affect your family – including your marriage and your typical children. And just so you don’t think I’m up here on my soapbox preaching down to you, I will tell you I learned this hard way. I thought I would drop my kid off at school and be inundated with information from his teachers and therapists. Instead I was told over and over, “today went fine” and found a ziploc baggie of PECS in his backpack with no instructions. I had to do a google search to find out what the heck these little pictures even were.
Now I’m not pointing fingers because there are a lot of hard-working, huge hearted people in the school systems who mean well – especially in the special needs department – and among private therapists as well. You will no doubt find one or two stand out people who really hold your hand down this road, as we have, but at the end of the day, when there are 20+ kids in a classroom and multiple clients at a therapy clinic, and these people have lives of their own on top of it, most people in your child’s life are not spending their free time researching new strides in autism and how they can specifically help your child.
It’s not cruel; it’s a fact of numbers.
And that shouldn’t bother you, because your job is not to find a cure for autism or to instruct a special needs classroom; it’s to help your child and to find the right people to help you help your child.
Resource List:
Vanderbilt University – Autism Center (TRIAD)
*diagnosis, therapy,
*research and studies (a.k.a. free evaluations)
Autism Speaks First 100 Day Kit
1001 Great Ideas for Teaching & Raising Children with Autism or Asperger’s
Ten Things Every Child with Autism Wishes You Knew
What You Can Do Right Now to Help Your Child with Autism
If you are local:
The Autism Resource Foundation
*Advocacy, awareness & education. Scholarships available
*Children ages 6 weeks – 6 years
*Coordinators of statewide walk in April. Very informative website and monthly statewide happenings.
Making Connections support group
*Monthly meetings, playdates, family outings, newsletters and social/informative group emails
Cindy says
So glad things are going well for you now, Jenn! Thanks for stopping by.
jenn alex brockman says
That’s a great list of resources! 12 years later, and we’ve finally found a good teacher and program, but there were many years spent learning the hard way when it comes to school and autism.