Monday, October 01, 2007

"A Walk for Autism" and How about Advocacy?


I attended a "Walk For Autism" at the Detroit Zoo yesterday. It was a very crowded event with thousands of people that were mostly in specifically designed T-shirts. My niece sponsored our team from our area named “Coalition For A Cure.’

Getting in the Zoo was the hardest part because of the traffic jam with so many cars entering even before the Zoo officially opened at 10:00 am.

There were big tents all around that represented registration, food, team waiting area, resource, quiet tent any more. The tent I spent the most time was in the resource tent were there was many displays from different counties and kiosks from people representing speech therapy, oils, toys, psychiatry and more. Each table had handouts with information and explaining how important their clinic was for Autism.

Following are some figures and comments sent out from my niece (Thanks KC - you did great):
We were expecting about 3,000 walkers. Actual number of tickets handed out: 7,049!!! Last week we had roughly $305,000 raised. Last number I heard before leaving the zoo: $515,000!!!I can't believe what a success today was. Thank you so much for spreading the word and donating to a great cause. I can't believe this is the first year for the Walk in Detroit! We beat Chicago's first year numbers, which is not a small feat!

The main reason I spent so much time in the resource tent was because I was looking for information on one specific topic. I wanted to get more information on education. I wanted to know more about the laws governing what a child is entitled to when they have Autism. I wanted information about advocacy and help for the parents when they venture into an IEP meeting with so many professionals sitting around a table using acronyms that most parents would have no idea what it meant.

I have searched the Web and found some information but not enough to prove to me that this area of Autism is covered. I also called Autistic Society’s with little help. I searched Amazon for books with autism and advocacy and found none.

I guess that is why I am documenting everything I have done in the school and also my experiences outside when it comes to education and autism and how to help the child best in the classroom.

Perhaps that is why I get so many Emails from around the world thanking me for whatever information and experiences I provide. Too many are relying on the Special Education Departments (think about how confident you are about other government programs) to help them. Many of the S.E.D. folks are overwhelmed and have heavy case loads and little time or experience (my Emails and experiences are proof).

I guess what I am trying to say is there is so much focus on the cause and cure (rightly so) that little is done for those already in the mainstreamed educational system. What will happen to them if they are pushed through like so many of the other learning disabled children (it’s already happening). For Autistic children if the school determines them they can’t make it. For the learning and emotionally disabled there is little to choose from, be a dropout or make it through high school and be added to the social programs set up by the government or just drift away. There are contained rooms and disability centers (I believe the majority being mainstreamed should not be put in those situations).

I will stay in the road less traveled and leave a trail for others to follow and improve. If you can help with this type of information (advocacy in schools) please send me an email at

To read my other posts on Autism please click on the ASD Label below this post and they will all pop up for you to red.


Kelley Phillips said...

Kudos to you for posting this article! Sadly, we got little to no media coverage on one of the most successful autism walks in the nation. It seems that with all the national coverage, Michigan families are still invisible, but with your help, we are working to eliminate that.

During the month of October, there will be a hearing at the Michigan House of Representatives on the importance of autism insurance legislation changes, and the introduction of the Autism Insurance Legislation Bill, written by Rep. Kathy Angerer (Dundee) and Kate Ebli (Monroe). It is a public hearing, so anyone who supports this Bill is invited and encouraged to be there. My good friend, Ann Breznai, who has worked tirelessly on bringing this issue to congress, has been asked to speak, and asks anyone who is willing to write a letter and give a picture or two, to do so. We'd like as many Michigan families as possible to be represented and have their own story heard.

Again, thanks so much for posting this. The hearing date has not been confirmed (due to the budget crisis), but if you or anyone you know is interested, please email us @, and leave your email. We'll send updates on the hearing date and any other news that comes up. Thanks for your help!

Kelley Phillips
Autism Speaks
Michigan Co-Chair

Anonymous said...

It's nice to see that your posts on Autism are getting recognized. They are a big help for us with children in the public school system.

As far as being an Advocate I would welcome your help. In fact I will be sending you an Email.

Doris from Downriver

Anonymous said...

I could use your help too at an IEP meeting with my daughter.

Can you travel out of state?

Please see the Email I sent you.