Thinking About Tomorrow Today
Says Janice Nodvin, program director of the adult Down syndrome program at the Institute for the Study of Disadvantage and Disability, a nonprofit advocacy organization based in Atlanta, about her now 29-year-old son Evan in today’s Atlanta Journal-Constitution:
“Evan is a man, and he should always be treated as a man, even though we sometimes have to help him out.”
While doctors predicted that Evan would not live until adulthood, he now works at a senior adult day care center, lives on his own, takes public transportation, votes. The Atlanta Journal-Constitution article is about the issues facing the aging parents of developmentally disabled adults and also notes that
….Nodvin said, transitioning her son into the community has been a tricky dance. Without a personal consultant who helps him cook his meals and gets him to the places he needs to be, they’d be standing still.
…….
Nodvin said that many families work so hard to get their children into schools and become self-reliant that they neglect to look at the big picture.
She said her institute encourages parents to put a plan in place while they are young enough and strong enough to have a say because, “We’re still our child’s best advocate.”
“I’ve worked with families where parents are really aging and the adult with the disability has never been outside the home,” Nodvin said. “When is that going to happen? When the person gets sick?”
Today, the expected life span of people with Down syndrome is close to 55 years —- up from a median of about 35 years a few decades ago. The same is true for others with developmental disabilities, including cerebral palsy, autism and fetal alcohol syndrome.
I guess you could say, I feel that every day with Charlie involves looking ahead to that big, unknown tomorrow. There’s so many uncertainties and so much to think about in advance to provide for him. Yet I always take heart knowing that we’ve done all right thus far growing up together and just hope we can keep walking together on the long road.
Tags: asd, asperger, autism, autism blog, disabilities blog, disability, down syndrome, Education, Health, parenthood, schools, special education, special needs trust, teaching
3 opinions for Thinking About Tomorrow Today
Marla
Oct 13, 2008 at 9:05 pm
It is so true that we have to look ahead and it is also true that we have no idea what that future will hold. My older sister who is disabled was told she would never walk, read, talk or be able to live outside of an institution. She recently began her own blog and has two children.
Kristina Chew, PhD
Oct 14, 2008 at 1:01 am
I saw that she’s blogging now—-no one ever knows what will, what can, happen.
Tara
Oct 14, 2008 at 6:11 pm
We recently interviewed a mom, Lauri, who told us that one of the worst things she had read when her son Clark was diagnosed was that he would never marry, have friends or have children, and Lauri worried endlessly what he would do when she and her husband passed away. At age 10, Clark now attends birthday parties and Lauri believes Clark will make more friends and date when he’s a teen. Focusing on the negative became incredibly debilitating for her, just goes to show, you never do know. Lauri talks all about it in this video, checking it out http://www.trusera.com/health/stories/lauriperry/
life-with-autism-my-son-s-journey-is-my-hardest-fight
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