In the case of students with disabilities—autism like my son Charlie and with multiple disabilities—what ought to be the main focus? Is it academics or more functional areas like life skills and vocational training? Keep in mind that many of these students will not be attending college and may only be able to work in sheltered workplaces, and/or assisted by job coaches. Is that the way we should be thinking or are we undermining what these students might potentially learn by not ’rounding out’ what they are taught to include lessons in literature, in social studies, science?
An Enormous Challenge
This question is highlighted in a June 19th New York Times article about the struggles of public schools to teach students with multiple, severe disabilities. The plight of 20-year-old Donovan Forde is highlighted: as a result of a traumatic brain injury that happened when he was only 5 months old, Donovan cannot walk or talk. Should he be learning subjects like science and English, the curricula very much adapted to accommodate his cognitive disabilities?
Donovan’s mother, Michelle Forde, likes his special education high school, Public School 79, the Horan School, in East Harlem, where she feels he is welcome and cared for. But she wishes his teachers would spend more time working on his practical challenges, like his self-abusive habit of hitting himself in the face so hard that he has to wear thick white cotton mitts most of the time, even when he sleeps.
Instead of having him work on basic academic goals, like identifying shapes and coins, she wishes he had physical therapy more than 30 minutes, twice a week, because it is generally the only time during the day he is taken out of his wheelchair, except when an aide takes him to the bathroom to change him.
A quick glance at some (thankfully not all of) the comments to the New York Times article suggests—more than unfortunately—that many people have a long way to go as far as understanding why all students have the right to a free and appropriate public education. Writes one reader in a comment that over 300 people ‘recommended’ (I didn’t):
We are spending 5 to 10 times as much on students who will never be the backbone of society, never be able to consistently hold a job. Indeed, many will be shuffled off to expensive group-home settings. Many more will be wards of the State in other, less desirable ways. In our desire to do everything for everyone, state and federal politicians and lobbying interests have carved out special-niche mandates that significantly reduce our ability to serve those who will one day serve our country best.
Providing an education for students like Donovan and for Charlie is not a waste of resources. Far from it, it’s a sign of the humanity of our society and—I know I sound idealistic here, but so be it—of what sets our society apart, that it’s the law to educate students with disabilities.
My son Charlie can talk a little and he does not have any physical disabilities. As Charlie has gotten older, more and more of his learning has been what is called ‘functional’; has been about teaching him ‘skills’ that involve ‘self-care’ and ‘daily living’ (teeth brushing, household chores) and that, it’s hoped, might prepare him for some kind of job. He still receives speech therapy and occupational therapy, with the subject matter of both of these determined according to what might best help him in his day-to-day experiences, needs and interactions.
Charlie does not read; he’s currently working on various sight words for places, things and the like. Since he was in preschool, teachers and therapists have been trying numerous methods and curricula to teach him the alphabet and reading. It was just a few years ago that Charlie mastered the alphabet (he is 13 years old). I still always feel the tug of hope: Maybe, maybe, and who knows but perhaps Charlie is able to read much more than he appears to, but just hasn’t revealed this yet to us.
That is, Charlie is not being taught to read with a view towards reading books but to help him navigate the world a little better. And isn’t that what reading is for, for many?
Still, I often feel a tug: Shouldn’t we be challenging Charlie more? Have we ‘given in’? Charlie is only 13 years old; isn’t it too early to have ‘narrowed’ his education down to teaching him the skills for a job?
And then I feel exactly like Donovan’s mother, who, as quoted in the New York Times, says ‘ “The only goal I had for him was when he was in the hospital after the accident, when the nurse told me he wasn’t going to live……He’s here, and he’s 20 years old. So he surpassed his goal. He’s alive.”’
Yes, Donovan is here and Charlie is here, as are so many students with disabilities and we need to make sure that they have access to the education that they need. I believe the onus is upon us all to keep finding new and different ways to teach students with so many different needs, to do all that we can to help them learn and grow and achieve their full potential.
It’s the least that we can do.
Photo by the author (yes, that's a page from my son's IEP).