Last night, I had the immense honor of sitting in the audience at a local school board meeting (not my own district) while a young man who is a junior in one of their high schools addressed the board regarding the lack of accommodations being provided so that he can be a successful learner and meet his goal of being an independently employed individual after high school.
I have tears in my eyes just writing that sentence.
Mike Chabanik is one of my heroes. He is an extremely bright young man who is also legally blind, has Asperger’s and other health issues. Although he is an honor roll student, he has been on homebound instruction since Thanksgiving after his doctor recommended that he not return to school until the proper accommodations were provided for him.
Here is what Mike is asking for:
- Text-to-speech software and instruction on how to use it
- A computer with a larger screen
- Texts provided in audio format
- Class lectures, including discussion, to be taped for him
It was so amazing to see how composed he was during his speech and to hear how clearly he articulated what he needs and why he needs it. And he got a standing ovation from the many people who turned out in support of him from his district and beyond.
I have embedded the video from one of our local news stations about it. I don’t know if the clips and stories rotate or how long this video will be available, but it came from the CBS21 website:
I took my son Michael with me and explained that we were going to show our support for Mike. He was very upset that the school was not giving him what he needed and was extremely well-behaved during the meeting, for which I was very thankful.
This morning, we had a two-hour school delay due to snow, and Michael was upset about something that he was afraid would not happen because of the shortened day. I asked him if he wanted me to email his teacher about it and he did. As I opened up a new email window, I realized that it’s never to early to start teaching the kind of self-advocacy Mike’s mom had taught him, so I had Michael dictate what he wanted to ask his teacher and then sent the email from him.
I think it was a good start, and I can only hope that one day my own son will be as confidently able to express his needs and goals as clearly as Mike did last night.
I'm a mom with Asperger's raising an amazing son with autism, which means I'm basically the case manager/advocate/cheerleader/chauffeur. The rest of the time, you can usually find me with my nose in a book!
{ 11 comments… read them below or add one }
What a fantastic story to share Trish. It takes effort to attend a meeting that’s not directly about you, and then to have the presence of mind to hand the wheel over to your son in terms of self-advocacy. But we reap what we sow, and we don’t have an unlimited amount of time to sow it. This is a great example of seizing an opportunity to teach a life-long and very profound lesson to our special kids.
Have you checked out ASAN (Autism Self Advocacy Network)? They are cutting edge, too edgy for some, but the origins of any liberation movement often has to come out with guns blazing to get the attention and respect they need to forge ahead. I have tremendous respect for their (very controversial) president, Ari Ne’eman.
Caitlin
http://www.welcome-to-normal.com
Thanks Caitlin! I haven’t looked at ASAN – I will definitely check them out.
First off, that whole bit about the puzzle being controversial is just ridiculous! Absolutely ridiculous. People need to get a hobby if they have time to complain about things like that! There, off my soapbox.
I love this story. Please keep us posted on what happens. How courageous of Mike to get up and talk to the school board. He must be learning so many valuable life lessons from all of this. All day my son told me he needed to tell his teacher something and I never thought to email her. You are such a great mom Trish. You know how things can eat away at our kids and I should have done this rather than have my son suffer with wanting to remember to tell his teacher. I have much to learn! Thanks for the tip!
I will definitely let you know what I find out. It is incomprehensible to me how the district can not respond to a clear physical disability like this. It’s bad enough that we have to fight over the “invisible” stuff!
Trish, what a wonderful story. Thank you for reminding all of us parents how important it is to teach our kids self-advocacy. We have the tendency to want to take care of them, keep them from harm, but they will all grow up to be adults. It is our job to give them the skills to be able to succeed to the best of their ability. Thank you for reminding us that it is never too early to start.
In a recent interview with Julie Clark, author of Asperger’s in Pink, she said the exact same thing. Her daughter is having to learn self-advocacy–to ask for what she needs. I know that at my daughter’s therapeutic day school the wonderful staff has been putting in a lot of effort teaching my daughter to “ask for what you need.” Instead of going to the restroom and hanging out b/c she needs some down time, she is being taught to ask for that down time. Again, great post!
How great that the school is promoting independence and asking for what she needs. Even though this situation is unfortunate, my friend’s son is learning a lot of how things work and how to speak up for himself through it!
Thank you. I think I *really* needed to see this. My son has been having a *very* rough school year, and my first inclination is to get angry / upset and attack the world on his behalf. What I *should* be doing is not only advocating for him (yes!), but also teaching him to use his voice to advocate for himself.
I am so glad it spoke to you. It’s a very hard thing to do, but definitely worth the effort.
Hi Trish
My name is Ashley and I’m from MN. I found your blog through Stacie at Super Mommy to the Rescue. Sorry for leaving a comment on your post but I wasn’t able to find an email address. I was wondering if you could help me out. My husband is currently researching ASD in children for his PhD in clinical psychology. If you won’t mind, can you fill out a quick online survey? If you can, the survey can be found at this link https://www.surveymonkey.com/s/ASDStudy
Thanks Trish, feel free to email me if you have any questions.
Ashley
I took the survey, Ashley, and hope your husband has good results with his research. Take care!
Really love this story! Thanks for sharing!