Advocacy

Ethan’s SEIT told me about a new program they are starting at the agency that all of his services are through. I don’t know all about it yet, but the basic idea is that they are looking for parents to be advocates for families that are new to the world of evaluations and services. I think it’s a wonderful idea. It would have been nice for us when we were just starting off with it all. She said there is some training involved and there would be a small stipend for every time they would use an advocate. She asked me if I would be interested in doing it.

I am interested, but honestly, there are times when I feel like I have no idea what I’m doing. How in the world would I be able to help someone else? I think I can, though. I already tell anyone that will listen about what we’re going through with Ethan. I don’t really know how else to explain it, but I think I am very real when it comes to all this stuff. I know of some parents that are horrified at the thought of their child being classified as learning disabled. I will admit… that one stung a little at first, but it is a good thing. It got him so much support that he wouldn’t have otherwise.

It’s OK to feel like you have no idea what to do next. You may not be an expert in special education or physical, occupational, or speech therapy, but you are an expert on your child. You have to ask questions, you have to sit in on the therapies so you can learn how to adapt at home. If a therapist is doing something that you’re not comfortable with, it’s OK to speak up and try to find a different approach. You have to be involved in the CPSE meetings about your child. Bring a picture of your child so that s/he is not just a name on a piece of paper (that’s something I learned from one of Ethan’s fabulous physical therapists). I was fully prepared to fight for summer services for Ethan at our meeting this past April, but luckily the school district was generous and I didn’t have to insist. From what I understand going from preshool services to school aged services is not as easy, so I’ll have to be prepared for a battle next spring. Most importantly, you have take things a day at a time. You cannot expect an instant change. Ethan has come a long way since starting therapies seven months ago, but it didn’t happen overnight.

I am interested in learning more about this program. I’d love to help other families and as an added bonus, I think I’d learn some things myself.