Susan's Blog

Sunday, April 9, 2006

Declaration for Independence

I have been asked to be a guest speaker at the Massachusetts State House in Boston on Tuesday, as part of Autism Awareness Month. I want to get the Legislature et al., to understand in a deep and personal way just how acutely challenging the whole Post-22 thing is for people with disabilities. I mean getting jobs, getting housing, having the right supports to be independent. This is the thing that keeps me up at night: the question of how best to help Nat live a good life, particularly when Ned and I are no longer around, without it being completely the obligation of my other two sons? I think the state has to do a lot more to help people with disabilities so that they can contribute more fully to society and live worthwhile lives. All it takes are laws, funding, and compliance! Below is what I was considering saying.

Right above my gym is a workshop for mentally disabled adults. When I see them climbing out of their van and walking slowly to start their day, my impulse sometimes is to look away. Maybe a lot of people feel that way. It’s not the kind of thing you really want to think about, the lives of the severely mentally disabled. But I have to think about it, because my severely autistic son is just a few years away from turning twenty-two, the year when going to school ends and adulthood supposedly begins.

I have been wondering about Nat’s future for much longer than I ever expected, from the time he was just a baby who didn’t respond to my overflowing love. I have long been dealing with his limited prospects and with the world’s lack of understanding, from the first doctor who told us that Nat probably would never marry (he was three years old), to the time five years ago when a prominent Children’s Hospital psychologist pronounced him “retarded,” to the blank stares we faced recently at his school when we requested stronger academics for him. We have had to think of our son defensively and strategically, always protecting him from the harsh world while at the same time pushing to get him ready for it somehow.

In my family’s world, independent living is the Promised Land, the dividing line, the measure by which you assess your child’s chances for a decent future. For the last six years, Nat has attended a private school for autism, at my town’s expense. It is a place where the emphasis is on job training — jobs like copying, watering plants, and stocking shelves. Meals on Wheels. They will do everything they can to make him ready for independent living. When Nat comes home from school, I often work on more of the same: chores, cooking, and self-care. We are on a two-year waiting list for a state grant (the DMR-DOE grant) that will enable us to hire someone to work with him on using the phone, taking the T, and talking to people at the counter in a store.

Just about every weekend my husband Ned takes Nat on a long walk into town, running errands with him.
This is part of our “community training” for Nat. Ned and I believe that we have to keep Nat fluid and flexible out in the world, so that he doesn’t become too routinized – a hazard of autism – and so that his repertoire of experiences keeps growing. Ned often springs the plan on Nat last minute for this very reason.

“Nat,” he’ll say suddenly, “Come with me to the library and CVS. If you’re calm we’ll get a treat.”

“Okay, yes,” is the sweet but odd way Nat always responds, whether he means it or not. Accurate answering is another skill we have to work on with him.

Outside, longlegged Nat lopes ahead and Ned runs to keep up so that together they can handle crossing the street. Recently Ned told me that Nat finally understands about looking at the lights to determine when it is safe to cross. But he was not happy as he told me this wonderful news: “Nat watched the lights change to ‘Walk.’ He was just about to go. It was a good thing I was standing with him because just then a car ran the light. Nat would have been hit if he’d been on his own.”

For nearly Nat’s entire life, we have sweated to teach him things that I used to think every human knows intuitively. Now, I want Nat to be independent like I’ve wanted nothing else, like some parents dream of Harvard. I don’t see Nat in a place like that sheltered workshop above my gym.
But I have to accept that it is a possibility. For some, it will always be a possibility. Because without the supports Nat receives in his school, he may not succeed on his own. We can plan for how he will work. We can spend every weekend trying to keep him flexible and ready to be out in the world. But without the right kind of help when school is finished, how do I make sure he is ready? After all, there will always be that one car that runs the light.


He’s just so gorgeous.

I guess for me, I don’t think about a time when I won’t be there for my kid. I don’t think that real independent living is a goal for this kid. S/he seems to be happy living with me (though I make him/her nuts sometimes and s/he is glad when I leave the house for a few hours).

Ballastexistenz lives on her own, in the main sense, but has people help her to maintain her independence. There are different kinds of arrangements for people. I could never see my kid in a sheltered workshop, I don’t see some kinds of work as helpful or rewarding for handicapped people.

The University here uses handicapped people in the foodservice jobs, cooking and doing dishes to feed the dorm kids, cafeteria kinds of things… I have a friend who is undx’d Frag X and middle aged, he can’t read but he can drive a car. He’s been a dishwasher for them, and more recently he cooks hamburgers. They take advantage of him. He says they are mean to some of the Down syndrome helpers… I don’t know if they are mean, but I know that it’s so noisy in the places where I have seen a couple Down syndrome people working that I think. ” Ah, gee whiz, I hope you don’t feel like I do about the noise in here. ‘cuz this is abusive.”

I have this bad feeling that they are being used like slaves. Maybe they aren’t, maybe it’s my imagination. The job that the autistic woman in “Exiting Nirvana” has sounds ok. It’s kind of a challenging job, she sorts mail or something. She likes it, for the most part. But she makes money from her art, too. I can’t even do that, not like she does.

I hope Nat learns about cars zooming from out of nowhere.

— added by Camille on Sunday, April 9, 2006 at 5:51 pm

The main reason I read this blog is because you are so honest – painfully sometimes. I appreciate that because I keep pushing these uncomfortable things away. What IS going to happen after we are no longer here to protect our sweet little girl??? It makes my stomach hurt just thinking about it.

— added by Elaine on Sunday, April 9, 2006 at 6:59 pm

Thanks for this post, Susan. And I agree with Camille–Nat is beautiful.

I’m 26. I have a nonverrbal learning disability (NLD) and I live at home with my mom and five cats. We discuss “independence” regularly–mostly because I bring it up–and we always decide that me living at home is the best thing for both of us.

After college, I realized that I’m a lot happier if I don’t have to be away from the house for long periods every day. (I get lost very easily and have a lot of trouble navigating places that aren’t my house). So I volunteer writing reviews of videogames and horror/cult films for websites. My bosses don’t pay me money, but they do send me review copies to keep and, plus, I really enjoy it. (I’d rather love my job and do it for free than get paid and hate it, frankly).

Since I’m “safe” at home, I have a lot more energy and willingness to go out. Mom and I run errands, go out to eat, go to the gym, etc. We go on lots of walks and she describes our routes to me, points explains which light we’re crossing at, or whatever. We used to live in an apartment that was a straight line from tons of shops, and I eventually learned to go to those shops by myself. Where we live now everything’s much more convoluted, but I think I could learn some things…with time.

There are a lot of things people associate with “independence” that I neither need nor want. I don’t drive, have no interest in learning, and am relieved that I don’t have to. I don’t see not-driving as a Terrible Thing at all. Yet, a lot of NLDers’ parents panic at the possibility that their kid may not be able to drive. (Some do. Some don’t. Some start driving and then decide that it’s a bad idea).

I also don’t want a job I have to leave the house to do, and fortunately don’t need a job that pays cash-money. My mom and I are perfectly happy without these things.

Good luck to Nat in his street-crossing endeavors! Mom and I practice crossing at lights all the time. I can cross at certain lights, but like Nat, I wouldn’t know if a car isn’t obeying the rules and coming at me even if the sign says “Walk.” When I did go out alone, I always sang the “In the Middle” song. (“Don’t cross the street in the middle…of the block”). It helped me focus, and was educational, to boot! 😉

— added by Tera on Sunday, April 9, 2006 at 7:18 pm

I have always believed that God blesses us with certain skills and strengths for a good reason. Your powerful use of communication is such a gift … for you, for your family and for all of us parents of autistic kids. Your book and blog no doubt bring peace and reconciliation to scores of parents and understanding to those who may not know what it’s like to live with, love, and plan a future for an autistic child. Thanks, Susan, for hanging in there. Good luck and don’t change a word! And… *thanks*!

— added by Lisa L on Sunday, April 9, 2006 at 7:22 pm

I had never heard of you or your book, Susan. I found it in the bookstore last night with my husband and sat down to read it. I skimmed and found the chapter where you talk about Nat and his annnoying laugh, and your epiphany about how that was his attempt to connect. I soon had tears streaming down my face as I identified with this so strongly. I then made my husband read that section.

We had been out for nearly four hours, celebrating our 19th wedding anniversary with dinner, a walk, and the bookstore visit. I was amazed in the bookstore that my cell phone did not ring with a question from my 17-year-old son with autism. At the restaurant he had called to tell me about a decision he had made regarding next Halloween.

Anyhow, your book prepared me for the scene when I got home–it turned out our 14-year-old and 11-year-old had hidden my cell phone number from their brother, in an attempt to give us a peaceful anniversary celebration. In fact, L was livid with me and my husband–with me because I had not returned in time to watch a show that he had wanted me to watch with him (although he had not asked me to do this before I left) and with my husband for turning down the volume on the show L had made him watch earlier in the day. Turns out he had been standing at the front window for some time waiting for us to return,and getting madder and madder, despite his sisters’ protests.

This thing about watching shows with him–it drives us crazy. They are often the most annoying and inane (to us), and to boot must be watched at top volume. But like Nat’s laugh, they are L’s way to connect with us, as are his repetitive recitals of plots from TV shows, or his requests to watch him as he plays video games. Whether we think they are legitimate or appropriate or not, they are his way of reaching out. Anyway, what I am trying to say is that providentially, reading that chapter enabled me to keep my cool and sit him down and calm him down, without ranting at him about how unreasonable he is. Thank you for reminding me about his.

— added by susanchartreuse on Sunday, April 9, 2006 at 11:05 pm

The best thing about my blog is my readers — the responses I get, like the ones here, give me a new perspective on some very old questions and allow me to “meet” people I might otherwise never know.

— added by Susan Senator on Monday, April 10, 2006 at 6:55 am

Hello all,

This was wonderful!! I get so overwhelmed when I think of how to teach Ben and Isaac about safety and ALL the other things they will have to try to “learn”. Thank you to all the wonderful people who responded so positively to Susan’s latest blog. It helped me tremendously. Susan, thank you again for you honest thoughts and your ability to write them so well.

I have quadruplet boys that turn four next week!! Two of my boys have ASD’s. Susan’s book was one of the first books I have read that changed the way I think about our situation. She helped me to see we can/are a happy family even with our challenges.

After dropping off my two boys at school today (they receive more hours of intervention than their “typical” brothers) I took my two other boys to the park. It was amazing to me how much easier it was to be at a busy park with my sons that don’t have ASD. They listen so easily and stay in the area they are supposed to. As my friend, who has twins and one with ASD, says “so this is how the other half lives”. I felt that way today and a bit guilty feeling relieved that Ben and Isaac were at school but they function better there-I don’t need to tell any of you that I suppose.

I really like that Ned takes Nat out on weekends-that’s pretty cool. It is a great idea and we will have to start doing that with our boys.

Thanks again to all of you,
Molly from Minnesota

— added by Molly on Monday, April 10, 2006 at 4:00 pm

One more thing…

We were told Ben would probably never care about getting married either(he was two years old at the time). I looked at my husband and said “Married? I just want him to say ‘mama'”. He still won’t say “mama” so I won’t worry about his marriage plans just yet (smile).

Nat is so handsome and from what I can tell looks like his mama!!


— added by Molly on Monday, April 10, 2006 at 4:06 pm

Susan, thank you for saying that. I felt the same way about you when I read even a few pages of your book, but it sounded so clichéd that I dared not say it!!

— added by susanchartreuse on Monday, April 10, 2006 at 9:17 pm

Good luck today Susan! I am a regular reader of your blog. I live in Ashland, MA.

You’re amazing.

Mary-Ellen Kramer

— added by Mary-Ellen Kramer on Tuesday, April 11, 2006 at 7:45 am

%d bloggers like this: