Susan's Blog

Thursday, April 23, 2009

They May Think It’s a Movement

Activism and energy are pumping through my blood lately. I suppose it is because finishing my second book (a few weeks ago) and my second semester of teaching (as of today!) has opened up a space in my life, and most of my readers know how much I hate open space in my life/free time.

Anyway, yesterday I posted about wanting to put together an autism summit, and I still want to do that. I took down the post, however, because I am not ready to start dealing with comments and questions and all of the wonderful stuff that will come of this concept. So — as Bill Murray said in Caddyshack, when the Dalai Lama had granted him Total Consciousness on his deathbed — “I got dat goin’ for me.”

I walked out of my classroom, not wanting to feel the feelings that were coming up (sad that the school year was over, insecure that I am still not experienced enough a teacher) and straight up the steps of the Massachusetts State House. I figured I’d drop in on my State Representative, whom I’d called last week for an appointment. I told the front desk that I had not yet heard back, and so, here I was in person. I had had some very good advice the other day from one of the administrators in Nat’s school. This administrator is very accustomed to dealing with the state for adult services. He was adamant that parents need to know their State Reps, and be sure that the State Rep knows them. “You want to be on a first-name basis with your Rep,” he said. “When something comes up for your child, you want them to know who you are.”

So my State Rep, who already knew me from when I served on my town’s School Board, is now going to know all about Nat, and people struggling with the need for supports as adults. Budget crunch time is upon the Legislature right now, and so I had to meet with an aide instead. But I sat down with him and told him about Nat’s achievements (school and jobs) and Nat’s future needs (supported housing and employment) and how he must be allowed to continue to be a part of this world, contributing to society in whatever way he can. I’m going to send him my book and put him on my Christmas card list. As well as my Department of Mental Retardation person.

If I didn’t live so close to downtown Boston, that would not stop me. Here’s what I would do:
1) Google the House of Representatives in my State and find out which Rep was mine.
2) Get his/her phone number and email address.
3) Leave a message for a phone appointment
4) Send an email that says something like this: Who I am, my address, who is my child, his age, his diagnosis, his abilities, his achievements, and his needs for the future. I would thank the Rep for any support of autistics and their families he/she has given in the past and ask him to continue that good work.
5) I would tell him that if he needs support in the form of letters and phone calls on issues related to adult services for autistics, I could get my friends to do that, too. This not only offers help, but it lets him know that the autism community is very active.

Just imagine if we all did that. If you and your friend with the kid on the spectrum. If you, and an adult on the spectrum joined them. If then you found another, that new lonely mom whose second kid was just diagnosed. Get her to bring her kids with you. Those parents of kids in your kid’s class who nod knowingly at the stuff you tell them. Carpool over. And then..

...And can you, can you imagine fifty people a day,I said
fifty people a day walking in singin a bar of
"Give Our Kids Better Adult Services" and
walking out.

And friends, they may think it's a movement.


I’m ready!! I tell any and everyone that there is a real need for things like this. I will call, visit, email whatever is necessary. Someone has to advocate for our kids, it may as well be us parents.

— added by cameramom on Monday, April 27, 2009 at 10:11 am

Great advice for us all.

Great to see you at the State House today, even if from across the room. I had one of those starstruck moments … thinking “Holy Cow… There’s Susan Senator. She has NO idea how much she has meant to me over the last couple of years.”

I didn’t get to tell you that in person. I probably would have been to embarrased to get it out anyway. So I’m telling you now.

— added by Judith U. on Tuesday, April 28, 2009 at 7:27 pm

That really means a lot to me, thank you. Good job today, it was quite a turnout!

— added by Susan Senator on Tuesday, April 28, 2009 at 9:53 pm