Susan's Blog

Monday, June 25, 2007

Somebody Nowhere

Career Blues. Dissatisfaction with the world vis a vis the plight of the disabled adult.

I want to do stuff with my life but I don’t know how to start. My days are chopped up by kids, chores, and then some free moments where there isn’t really enough time to do something productive. I’m writing this now as the kids start their showers, hooray for showering kids. Welcome to summer vacation. Don’t get me wrong. I love it all. I love summer, more than most things in life. I love feeling hot, being tan, wearing shorts and sandals and willingly going outside!

But — I hate limbo. I hate indecisiveness and that is where I am right now.

I keep thinking about starting a 501C3 called “Autism Works” or “The Disability Works.” How do you start such a thing? I want there to be training for Personal Care Attendants and Job Coaches. Incentives for employers to hire guys like my Nat (other than his pretty face). I want to be able to supplement Job Coaches’ salaries so that good people will be attracted to those professions. So I need a big endowment, I guess. I need to write a mission statement and get planning.

I don’t think it makes any sense at all that post-22 all entitlements under the IDEA end. Why should they end? Why spend all that money and provide supports and resources to educate our kids if they then can’t do anything productive when they finish school because they still need the supports that they had in school (because they are still disabled, duh!).

I’m now on the Adult Services Subcommittee of Autism Speaks. Our first meeting is July 5. I want to pitch these ideas but I don’t know how things work there. I am the new guy and I hate that! I’m sure they have their agenda already and their way of doing things and I don’t want to be coming out of left field, but that is where my field is!

How can I educate people out there, employers, about why it’s a good thing to hire disabled people? How can I teach others not to be afraid of seemingly bizarre behaviors or apparent lack of communication? Are articles the way to go? Or am I supposed to become some kind of lobbyist?

Or is this second book going to happen? When? I have emailed my agent twice in two weeks. I feel so antsy. I feel time slipping by, for me and for Nat. I want to accomplish something, something more than the book I did now two years ago! I get people writing or calling me everyday asking for help with their kid, their situation. I WANT TO HELP but I don’t know how to harness all this energy and passion.

I feel like a dilettante. And like I’m going nowhere, too fast.


I’m very glad to hear Autism Speaks realizes there are adults who need services, and that you’re on the committee. It seems to me that a good place to begin would be looking into the places and folks who are already doing adult services — MR/DD boards, the Goodwill, for starters. I’m sure they have lots of ideas about what could be done, if only there was funding and other support. No use in totally reinventing the wheel.

Please keep us posted on this stuff. My kid’s only nine but I wonder every day what his adult years will be like. Even if all the genetic and vaccine questions were answered tomorrow, there’ll still be people like our kids who will need help the rest of their lives.

— added by Anonymous on Tuesday, June 26, 2007 at 12:25 pm

For one thing suggest that they get autistic adults on the same board you’re on if they haven’t already.

— added by ballastexistenz on Tuesday, June 26, 2007 at 3:44 pm

Fear not, Amanda. That is one of the very first things I said to them. Got anyone in mind?

— added by Susan Senator on Tuesday, June 26, 2007 at 6:19 pm

Nobody in particular. I wouldn’t work for them personally. But others might.

— added by ballastexistenz on Tuesday, June 26, 2007 at 11:04 pm

Autism Speaks? Nice one. Change from the inside and all that 🙂 well done you.

— added by Beth on Wednesday, June 27, 2007 at 4:52 am

My son has autism and has been employed in the community for 10 years. He receives job coaching support.

In my state, there is an effort to provide more options/choices for people with disabilities – a departure from the status quo where others dictate which services are appropriate. Parents of adults with ANY disability need to get active and provide input as to what is required for their adult children to succeed.

We also need to consolidate the many disability advocacy organizations that exist – and develop a common voice.

My goal is to one day create a new community support model for adults with autism.

— added by Anonymous on Thursday, June 28, 2007 at 11:19 pm

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