Can I tell you something? I’m angry. Angry because I keep hearing about how children with Down syndrome have a rosy future to look forward to, a future where they’ll be just like everybody else. Angry because parents and advocates are all abuzz with the news that today, according to people like Time Magazine contributor, Bonnie Rochman, “Teens with Down syndrome go to college; 20-somethings get married.” I suspect the reason those lines are being repeated by parents, doctors and the press is because of the huge push from Down syndrome support groups around the nation to “educate” the public about the accomplishments of people with Down syndrome in hopes of changing the face of Down syndrome. It is a noble idea that I support completely. Doctors need to be telling parents facing a prenatal or postnatal diagnosis of Down syndrome that this is not the end of the world, that the world is a much better place for people with Down syndrome than it was even 30 years ago. Parents need to be told that a baby with Down syndrome is still a baby and is capable of giving and receiving love, that terminating a pregnancy is ending the life of a precious and valuable human being, a human being who will bring more love and joy into their lives than they could possibly imagine.
Even our pediatrician at the time of Noah’s diagnosis optimistically predicted something along the lines of, “Mrs. Dunn, I see Noah living on his own, I see him going to college.”
Me: “You mean he’ll be able to live on his own without anyone looking after him?”
Him: “Uh, well, stammer. Maybe an apartment on your property, and he’ll come and share meals with you.”
People, is it just me or is there a huge difference between “living on his own” and “maybe an apartment on your property and he’ll come and share meals with you”?
I really feel for people who are given such an optimistic outlook only to later have to adjust, once again, to reality.
But this is the thing that gets me the most!!! Reality for families of people with Down syndrome is not all that bad. As a matter of fact, it’s mostly good. We get to keep our child a child just a little bit longer – something that most parents of neurotypical children long for. Well, heck, we get to keep our child, period. We raise our neurotypical children with the knowledge that some day they will fly the coop. As much as that is a good thing, now that I have gotten used to the idea, getting to keep one of them is, well, pretty much a gift.
And there are many, many wonderful opportunities for people with Down syndrome now, and there are some pretty fantastic parents and advocates that are making sure that there will be even more in the way of jobs, social support, recreational activities and supported living choices in the future.
It’s just, well, college? College is a stretch for even the most academically inclined. The fact that some colleges have inclusive programs for people with Down syndrome that allow them to “go to college” right along side people without Down syndrome is wonderful. So can we be honest and talk about people with Down syndrome getting to enroll in college programs designed for people with Down syndrome, where it’s obvious we’re not trying to make it look like something it’s not? True, it would be “college” to someone like Noah, and I would certainly use that term with him, but why mislead the general population? Maybe I’m just naive, but I feel like the general population who hears that people with Down syndrome now go to college is being misled. There are articles out there on the net that boast of students with Down syndrome going to college just like everybody else, but when you keep reading you realize they are enrolled in a special needs program within a bigger university or college system. Take for example, this article which was published in U.S. News 02-13-2009.“Everyone deserves to go to college,” she says, “students with intellectual disabilities included.”One model program whose work Hart and others applaud is the Inclusive Concurrent Enrollment Program at Massachusetts Bay Community College. As Program Coordinator Molly Boyle likes to say, students enrolled in her program hardly recognize that they are enrolled in anything more than community college classes. Program participants’ education is completely inclusive, and the support they receive from the program is provided on an individualized basis, Boyle says. She added that most of the ICE program’s students come to “MassBay” two to three days per week and take one to two classes per semesterthat they choose based on personal or vocational interests.” The article also goes on to state that one of the ways students with Down syndrome participate in the college experience is by auditing classes, that is, attending the classes but not receiving a grade for them.I applaud those students that are participating in these programs, and I am delighted Noah will have all these options to choose from when he finishes high school. I just don’t think I’ll be leading people to believe that he is somehow keeping up with the same college demands as his neurotypical peers.
And marriage? Again, it is wonderful that people with Down syndrome are now getting married, and I absolutely support the people who have been pioneers on this front. But can we really just say that those marriages are happening without qualifying it with those little inconvenient truths like, the in-laws provide a garage apartment for them to live in, meals, transportation, oversight, safety boundaries, etc.? The award-winning movie, Monica and David, was a beautiful testimony to the love of two people with Down syndrome and the family that supported their marriage, but the marriage as it was documented was in sharp contrast to a traditional marriage where partners leave and cleave and rely and take care of each other. Their love for each other and the family that supports them is breath-taking, but when I first heard the claim that things are so good for people with Down syndrome now that I can look forward to my son getting married someday, this is not what I pictured.
I’m all for promoting how far people with Down syndrome have come, but as long as we are erring by omission, we are harming our own credibility and the credibility of people with Down syndrome.
The real accomplishments of people with Down syndrome deserve accolades and press. Can we focus on those?
What do you think when you hear that people with Down syndrome are now going to college, getting married, living on their own? Share your stories of people with Down syndrome doing these things successfully, and share what supports are put in place to help them. I’d love to see both sides here, so if you are in favor of spreading the word about college, marriage, independent living and leaving the bigger picture out of it, please leave a reply explaining your position. This would be a great topic for a guest blogger – I’ll give you the space, you give me a well-written post.