Susan's Blog

Sunday, November 18, 2012

I want a job in government as a disability policy advisor

I am interested in moving from academia and writing to the field of government policy advising, particular in autism and disability policies. I would like to work at the federal or state (Massachusetts) level. I have a great deal of relevant experience and skills for this type of job. I currently work part time as Director of Autism Adulthood Services and Outreach for the Community College Consortium for Autism and Intellectual Disabilities (CCCAID). In September I was on a panel at the Association of Community College Trustees annual conference. There I spoke of the pressing need for community colleges to develop programs dedicated to serving the needs of those with autism and intellectual disabilities, who often graduate at 22 from the public schools with little or no vocational or independent living skills.

Community college, however, is just one area that society needs to rethink in terms of those with autism and other disabilities. Adult disability services in general, and the systems these adults must navigate, also need this country’s attention and support. I know about this firsthand: my son Nat is 23 and has fairly severe autism. I got my disability education and experience the hard way, by making many mistakes, thinking on my feet, and flying by the seat of my pants. I became a writer to raise public awareness of what parents like me face; back then the number of kids on the Spectrum was only just beginning to balloon, and society was simply not prepared.  I worked as an education columnist for our local paper and also began writing pieces for the Boston Globe, the Washington Post, the New York Times, and eventually wrote three books on autism and the family. My articles on Special Olympics helped forge my friendship with Tim Shriver, their CEO and Chairman. Tim invited me to a White House dinner in July 2006, where I made connections with Maria Shriver, the late Senator Kennedy, Senator Chris Dodd, and others involved with Special Olympics. I also had the privilege of giving a copy of my first book, Making Peace With Autism, to the First Lady, Mrs. Laura Bush.

On a local level, when I discovered that our school system had no autism programs, I ran for School Committee, where I served for five years, on several initiatives, one of which was the Legislative Subcommittee. My colleagues and I created an annual breakfast for our legislative delegation, making the case for more money for education and improvements to our state’s implementation of IDEA. This experience allowed me to form positive relationships with members of our State House, which I still maintain today; most recently I spoke with my state senator’s office volunteering to help on an election bill that would simplify voter registration here in Massachusetts.

I have been very politically active in my state and town, joining and founding various parent and advocacy organizations, holding forums at the State House and lobbying with our Arc on budgetary issues. On a national level, I have been giving workshops and keynotes to autism and disability professionals and parents like me, and always, also learning from them – and above all, learning from my son.

I would bring all of my years of advocacy experience, my writing skills, my speaking skills, my passion, and my energy to disability policy. I can also offer my facility for understanding and articulating issues and solutions that can help people like my son live fulfilled lives through work, continuing education, and community inclusion. Working in disability policy feels to me like a logical and exciting next phase in my journey as an advocate, writer, and mother. My CV is at the link here.

Monday, November 12, 2012

Giving Thanks for Good Job Coaches

Today Ned and I had lunch with the clients, staff, and parents of Nat’s Day Program/Day Habilitation Program. This was their annual meeting, and they made it into a Thanksgiving luncheon. It was held at a local community center, in a large banquet hall filled with round tableclothed tables.

The room was packed. I saw someone I knew immediately, a mom of one of Nat’s roommates. I couldn’t pick out Nat at first, but Ned did. Ned told me later that when he saw Nat first see us, Nat mouthed, “Hi Ma-ee Daddy,” with his lips, fish-style. We both laughed at earnest Nat. Anyway, I found him at last, at a table with two other men — Ben and Luc, two staff who sometimes work with Nat. There was handshaking all around. Soon Mikey joined us (the third roommate at Nat’s house).

I liked Ben and Luc immediately. They were very good-natured. A videographer and documentary filmmaker when he’s not doing job coaching, Luc exuded confidence and kindness. He joked and laughed with the others around them.

During lunch I took the opportunity to ask Luc to tell me about Nat at work. “Let me process that for a bit and access that particular file,” he joked.  Then he told me about Nat’s day. Nat and another young man know their routines and are mostly self-sufficient, but Luc is with them all the time, to be sure of their safety in the parking lot and to keep them on task. “Sometimes you have to make sure Nat brings back all the carts, not just one,” Luc said. They ride with Luc over to the Shaw’s Supermarket and they punch in their time clocks. They put on their special vests and Nat unlocks the shopping carts and starts gathering them from all over the store and the lot. If it’s raining they work indoors, putting away the baskets and cleaning the bottle-redeeming area. “Nat always knows when I haven’t put the cleaning bottle back in the right place; he makes sure I go get it and put it back right.”

The whole time Luc was talking I felt a buzzing happiness. I could see that Nat was not only safe and among friends, he was also respected for his good work. Luc told me that Nat is “very fast,” and that all the walking is really good for him. He also said that sometimes they take a break and go on a walk, and do some deep-breathing, to center them and get them set up for the rest of the workday. They work for two hours Monday, Wednesday, and Friday, and then take another half hour to have lunch in the employee cafeteria. “We all sit together, this supermarket doesn’t try to keep us separate, like some other ones.” This horrified me, that other workplaces separate out their disabled workers and job coaches. Why? What could that possibly accomplish, except to foster isolation in one group, and indifference or fear in the other?

During the event, there was an open mic for anyone to come up and talk about something they are thankful for. Many of the participants (the clients with disabilities) spoke about people they had lost, and how they remembered good times with them. Most of the speakers were a little unfocused, but you could tell that they wanted to express their love for this or that person.

Then one of the young women who had spoken came over to Luc smiling and said to him, “Hey, it’s my favorite Haitian Retard!”

Ned and I looked at each other in pained political correctness. But Luc just smiled good-naturedly and said, “I know that you’re just expressing how good you feel about me,” and diffused all the awkwardness. It was masterful. It was Luc. I did wonder what the R-Word people would think of this interaction. I know I’m opposed to using the word “Retard,” but what if it is a person who has an intellectual disability herself, making a joke and basically Taking Back the Night?

My feeling ultimately was that if Luc thought it was okay, then so did I.  At the end of the lunch, Luc told us how happy he was to meet the people in his clients’ lives, “so that I understand where they come from,” (those were probably not his exact words). I was really glad that Nat’s program thought to have this kind of get-together so that we all know where we all come from. Just like in the school days, meeting the people who work with Nat does two good things: it helps me know who is working with him, and it helps them know who is behind Nat.  If I could have stood up at the open mic, I would have said I was thankful for Luc.

Saturday, November 10, 2012

Happiness is almost never grand

Unbelievable, sometimes, the interactions I have with Nat. So often I take his adult self for granted. Isn’t that the sorest of human regrets — our dumb unseeing of the most precious events? Must I be wearing a formal gown and standing in some fantastic ballroom in order to understand a Great Moment in My Life?

Great Moments in life are cloaked in grey routine, a few seconds in between a question and an answer. Recognizing them may be our biggest challenge as humans, because those are the moments that cause our happiness, our sense of certainty that our lives are worth living. Despite all of the mess, horror, sadness, and evil, there is also sheer unseeing. Wasn’t it Hannah Arendt who said that evil is banal, found in everyday callus interaction and casual cruelty? I feel that the other side of this is that good is also banal, half-hidden by the dullness of the normal.

Just as we don’t need a Hitler to experience true evil and pain, we don’t need a Jesus to experience true goodness. (I mean no disrespect here to my Christian friends.) It’s right there, it always was, in our own backyard, as Dorothy Gale said.

These thoughts are brought to you by Nat, this morning, around 7am. He was on one couch, I was on the other. He was reading some fliers from his social group. I suddenly thought that I wanted to take him with me to my conference today (the Current Trends in Autism 2012 — the fabulous Dr. Margaret Bauman’s brainchild, so to speak). At one o’clock, my favorite autism theorist and practitioner — Dr. Peter Gerhardt — will be giving a talk and I really want to see him. However, Nat is here for the weekend and I didn’t want to be gone for hours. So, hey, why not bring him? He is not registered, but is the CTIA conference going to turn away a brilliant Self Advocate like Nat? Besides, we’re not going to eat anything there — or else he can have my lunch.

So there I was, explaining to him about this conference, and how I wanted him to meet my friend, Peter. I told Nat very earnestly and carefully about the conference, and what Peter does (“he helps people with autism go to work, have jobs, like you do.”) and that there are people at the conference who have small children with autism, who need to know how to help them go to school and learn. I said that these people will want to meet him, because he has autism and he is grown up and has a job at the Shaw’s and is doing so well.

Right in the middle of my carefully-selected, Mindful, almost PC explanation, Nat started to smile. It broke into my serious little speech and cracked my face into a smile, too. “Hey, what?” I asked him. In that briefest flash, the walls and cloaks fell away and it was just Nat and me, no bullshit necessary. He was self-talking, light, round laughter bouncing in his voice, saying, “Yes.” I realized I didn’t have to explain anything to him about what he means to people, what he’s done with his life. He’s living it, and he knows how to enjoy it.


Sunday, November 4, 2012

The Birds Are Flying Away For the Winter

Ben came in at about 8:30 tonight, the cold air clinging to him as he spun around the living room. He’d been out with a girl — his girlfriend from high school — and a new friend, and he was beaming. I listened to him talk about the afternoon and evening they’d had, and I was marveling at how alive he was. I almost felt like I was talking to someone I didn’t know that well, this grinning guy with broad shoulders, long skinny neck and waist, hair bound back in a pony tail. He’s so grown up now that he seems to be amused by his own awkwardness. He let me cut up an apple for him, stayed downstairs with us a little bit more, and then zoomed upstairs to his laptop and cell to resume with her.

Ned and I had been alone in the house for the later part of the afternoon. We had taken Nat back at around 3, stopping with him for a treat at Starbucks before trying to find the gym where his roommates and staff were hanging out. He was anxious to get there. This was a gym we had taken him to years ago, back when an area support group (TILL, Towards Independent Learning and Living) ran a family day on Sundays. The family gym was the only place we could all play with total impunity, a precursor to our Special Olympics experiences. He’d swing on ropes and jump on the trampoline with us. Max could have fun there, too. And Ben was not yet a twinkle in Ned’s eye.

It was strange to think of how shut out from the world I felt back then: to think that there were so few places we could go where we felt comfortable, and unafraid of what Nat might be up to. The boys were so young, so bright-eyed and so much themselves. Life had not really gotten through to them yet. Max was a big-hearted little boy, his soft self showing right from his eyes, unguarded. Nat was bigger than him then. He was wiry, high-pitched, electric. He did not talk to himself back then, but he was extremely self-contained and self-sufficient. I was used to not feeling needed by him emotionally. My connections to both of them were physical, as the mommy and caregiver. I didn’t get anything back from them; it was just the selfless love you feel towards your children. Anything I got from them was given off in surprising wisps like the cold air surrounding Ben tonight.

The gym building was all locked up, and we could not figure out what happened, except that the house manager must have been operating on old information. The family gym was not there anymore. Nat asked Ned once about going to the gym, and Ned told him it was closed, and that he was going home now. Was it Nat’s disappointment that shot through me, a vestige of our past physical bond? Or was it my own? Yet he accepted the news with a calm “Okay,” and got into the van to go back. I felt the need to reassure him somehow, so I told him we’d make a pie next Friday. “Yes,” he said, and the door shut. I felt alone. But Ned took my hand and played with it, poking my palm while we drove back.

We had a date to skype with Max when we got home, and sure enough, he popped up on Instant Message as soon as I flipped open my laptop. We sat across from him, and I found I was tired and didn’t have much to say. I listened to his stories about his new girlfriend, their evacuation from New York (due to Hurricane Sandy), the friend’s house they stayed in. The next movies he’s going to make, the movies he’s seen (Wreck It Ralph, the same one Ben saw tonight with his girlriend). I had a sigh inside me, an indecipherable feeling, like I was floating above the conversation, not really a part of it.

I went upstairs after that and got under the covers. It was only 7pm. Ned let me sleep and came up as soon as I called for him. He laid down with me, on his back, while gathering me in the crook of his shoulder. He made me laugh at something, and we started talking about dinner. I threw back the covers and went downstairs to the dark cold kitchen, and made some soup. We ate together alone, in the living room, each doing our own thing but talking. Always connected. It’s a new life for us, and yet it’s an old one, too.

Saturday, November 3, 2012

Why Autism Families Should Vote Democrat

Several readers have written to me saying, “I’m an autism parent,” or “I have ASD,” AND “I’m voting Republican.”

I have been wringing my hands trying to figure out how to explain to special needs families how this decision will harm their own children. If your child is in public school, and on an IEP, he/she is getting supports and services paid for by the federal government, the state government, and in most cases, their own city or town. That “big government” that you despise is taking care of your publicly educated children — with IDEA (Individuals with Disabilities Education Act) and No Child Left Behind funds and federal aid to cities and states.

If you have a child on an IEP, are you satisfied with the services he/she is receiving? If not, have you been told about The Strained Budget? If you have heard that there’s not enough money in the budget, that is partly because the federal government has only partially funded IDEA and public education, year after year. Yes, that’s correct. It is lack of adequate public money that accounts for the services you complain about. Without even that amount, you would have little or nothing for your child.

So, yes, it costs a lot of money to educate our kids. There is no getting around it. And perhaps some of that is waste, or some horribly corrupt story you read about in the paper. But by and large, the expense of special education is about the cost of paying specialists and teachers who need to get trained so that we are satisfied with how they treat our kids. Again, if you are not satisfied, that is probably because there is not enough money — enough public money from the government: local, state, and federal — to pay for this. If there were more, you’d have more. Less is not more. Less is less. Is that what you want for your kid? You know it isn’t.

If you want a smaller federal government and you want to pay lower taxes to it, then be prepared for your state and local taxes to go up. Or you will see a serious decline in the services your child gets. It is that simple.

We don’t want it to, but special education, costs money. Lots of money. Not military-level lots of money, but still, a good chunk of a town and state budget. If you don’t want to have to pay more in town taxes and state taxes, you will have to pay more to the federal government –or do without. Do you really want your autistic child to do with less than he’s already getting?

Government programs are for the greater good. They cost money because they do serious things to help people live and be educated and work. If your life is perfect, and you have a lot of money to pay for a private education, and to set up your adult autistic child with whatever supports he many need, then thank your lucky stars. But if you are like most of us, let’s say that number is 99%, then you should vote Democrat and for public funds. You should vote for a government that is willing to raise taxes on corporations and oil companies and the very very wealthy who can afford it. You should not vote for the government that claims to give you more in your own pocket.

And you should ask yourself, which is the more selfish of the two? The government that tries to help the needy and educate our challenging children with tax money — or the government that says, “let them do it by themselves.”