Autism Vox

Planning Beyond the Yellow School Bus

by Kristina Chew, PhD on April 11th, 2007

A few years ago I came across a newspaper article whose title was something like “What Happens When the Yellow School Bus Stops Coming?” My heart froze and I wondered if I could read the article, and knew that I should: Its subject was about developmentally disabled 21-year-olds who had finished high school and were not able to work, or, rather, not yet ready to work. A mother whose son had Down mentioned the yellow school bus no longer coming; I had just seen Charlie off on his, peering back at me with his big brown eyes.

I did force myself to read the article, which was about putting together a special needs trust and considering living options (group homes in particular) and the possibility of employment and other activities.

I suppose it is the hope that they will not have to worry about what happens when the yellow bus drives away the last time that impels some to seek a cure for autism; for recovery—with the thought that this will mean that, instead of having to think “group home, job coach, who’s going to be the guardian?”, one can think college, financial independence, marriage, grandkids, and so forth. And if maybe not all that (for how many “achieve” all of these things, anyways? what makes us want them?), then at least the hope that one will not have to deal with the whole business, or perhaps the mess, of special education, IEPs, ESY, case managers.

I know the day—the mid-afternoon hour will come—when the yellow bus drops Charlie, backpack on his back, off for the last time and we all face a different kind of tomorrow; I know it will be at least a bit bittersweet, to see so many years of routine drive away. And it was precisely in fear of this projected bittersweet feeling that, when Charlie was younger, I avoided reading about autistic adolescents, teenages, and adults. I knew this would all come before I knew it, but why have to face it?

Obviously, this was not very practical, not to mention responsible, thinking on my part. What moved me out and beyond it—so that, instead of thinking, “what’s going to happen when Charlie turns 18″ I now think “What will new thing will he, will be, be up to then?”—has been Charlie himself, and watching Charlie growing up, physically, cognitively, and in every other way. A report on NPR on April 11th, Parents of the Autistic Weigh Lifelong Care Options tell the story of 19-year-old Joey Mazzafro, who lives in Maryland with his parents, Joe and Maryjean Mazzafro. Joey is described as having “severe autism” and “will never be able to live independently”:

The scene could be straight out of an old TV show: A doting mom named Maryjean Mazzafro is making an after-school snack for her son, Joey. Today, it’s pepperoni pizza.

Joey’s school bus pulls up at the curb. He heads into the kitchen, and gulps down his snack.

Here’s the part that’s not made for TV: Joey is 19 years old. He is 5′10″ and weighs about 200 pounds. He doesn’t make eye contact much, and he didn’t start using a toilet regularly until he was 8.

Pretty soon, the pizza is gone and Joey heads down to the basement, to relax and watch Peter Pan. For Joey, that means singing along with the same clip of the video over and over.

………..

It’s an odd life, but Maryjean says it is a good one for her son: He is safe, and he is loved. But she fears that it will not last.

In a couple of years, Joey will be too old to attend public school. Then, it will be up to his parents to arrange just about everything in his life. Maryjean says they are worried about how long they can do that.

“He’s getting bigger and stronger,” Maryjean says. “We’re getting older, weaker, [and] things are going south rapidly. And I think my husband thinks, ‘Oh my God, you know, my mother died of a heart attack at 57, and I’m 52.’”

The Mazzafros are thinking ahead: They are meeting with an estate planner, James Allotey, who works for MetLife and is trained to help families who, like the Mazzafros and like us, have a special needs child. The Mazzafros bought their current house with the hope that Joey will be able to live in it long-term; they also have a 21-year-old daughter, Bobbie.

“When do I stop child-raising?” Joe asks. “When do I stop being responsible for this? Well, the answer is, clearly, never.”

Joe knows his parental duties will carry on long after he and Maryjean have died; they have been planning for that day. …….

“The hard part is not the house,” Joe says, “I’ve got that. It’s the care. It’s the persons, it’s the people. And I’ve got a [guardian], I’ve got somebody in mind, I know who I want. I don’t know if I’ll get him… You live here. We’ll give you the house. The quid pro quo is, take care of Joe.”

I agree: On the top of my list of “what about this?” for Charlie after Jim and I are gone is the question of who will visit him? be his companions, his friends; look after his financial and other needs? will there be no one to take him on the train and subway ride trips into New York City that he so loves, or to his beloved Jersey shore?

I apologize for a little alarmist thinking here. If I pause for a moment, it does occur to me that any and all parents have worries about their child’s futures. Joe Mazzafro notes that his attitude towards homeless persons has changed because he “recognizes many of them are not so different from his son”: “‘I think a lot of [homeless] people are people like Joey who have not found, or could not live in, these institutional settings.’” I know that alarmist worries and apocalyptic predictions—-like those noted in a previous post today—are ill-suited to address the real needs of real children who are growing up into autistic adults. A parent can certainly have them, but what does one do with such feelings, and the kind of practical, concrete steps the Mazzafros have taken seems more than necessary.

I find it a little disquieting that the NPR report mentions Joey’s height and weight and also that “despite his adult appearance, Joey is still in many ways a child, and always will be.” It does seem to me that many news stories on autistic children growing up into autistic adults tend to mention the physical size of a child (and especially of a boy), as if to suggest, here is this X tall X heavy person and he is like a child: My own son is getting taller and bigger and whatever age level his speech would suggest he is, it is not his biological age. Why fear that Charlie, or any autistic child is getting older and bigger—it is going to happen—and instead adjust our teaching to grow with and fit with Charlie as he grows up? Instead of hand-wringing about how how to “manage” an older, bigger, stronger disabled child, we can teach him methods to monitor himself; how to help out around the house (today, in addition to the garbage, Charlie started to learn another essential skill that many college students are far from masters of: laundry).

It’s hope and outcomes over and above “recovery, mainstreaming, independence”; it is knowing that this “odd life” can indeed be the “good life”; it’s knowing that the yellow school bus does not come for everyone for their whole lives. It is knowing that Charlie’s life will be, as it has been, some highly original creation, not some cookie-cutter model.

It is a bit bittersweet to know I probably will not be able to see where Charlie’s ends up, exactly.

But do you know what?

Even though I know Charlie gets on and off that bus everyday, and communicate regularly, and frequently, with his teacher, I certainly do not know 100% what Charlie is doing during his school. I do know that he likes the people he spends his day with—his teacher, aides, therapists, classmates—that he mentions some of their names and always gives me that serious look when I ask him “school tomorrow?” Tonight Charlie made sure his lunch box was in the refrigerator; I tucked him into bed with his calendar by his pillow (his choice). Earlier in the day, he had said “Hug,” and had given me a squeezer—and then again had said “hug,” and another squeezer; he then ran upstairs to find Jim’s old blue coat and plopped it at the foot of his bed. (Jim has been working long and late nights to get final revisions done on his book manuscript.)

Charlie, I suspect, has his worries about us, and I think he is starting to take care of us already, too. The yellow bus will not come forever but when we say good-bye, it will also be with feet turned toward the next stage of the journey.

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POSTED IN: Adulthood, Legal Issues, Parenting