Unshelved by Bill Barnes and Gene Ambaum
comic strip overdue media

Tuesday, May 01, 2012

An excellent article

on the toll on and needs of families whose children have special needs, and how woefully unprepared our society is in dealing with the greater numbers who survive and live into adulthood, in this week's Newsweek.

The Coming Special Needs Care Crisis [in print, the article is titled 'When Love Isn't Enough'.]
But for most parents, it’s the day-to-day stuff that consumes them: the hours of therapy, the doctor visits, the financial pressures, and the grinding anxiety that comes with it all. It is a rough, often isolating road. And one that promises to become even more challenging as our society enters a new, more complicated era of caregiving. That era is coming in part because many of the medical and social advances that have improved the lives of special-needs individuals have also increased the burden of caring for them. For instance, people with Down syndrome were once lucky to survive to age 30; today, the average lifespan is 55. This presents parents (and society more broadly) with the challenge of somehow providing for an adult child decades after their own deaths, a situation complicated by the fact that the Down population develops Alzheimer’s at a rate of 100 percent, typically in their 40s or 50s.

Then there is the 800-pound gorilla in the room: autism. In late March, the Centers for Disease Control issued an estimate that 1 in 88 children now fall on the autism spectrum. While debate rages over the roots of the “epidemic,” this swelling population is placing increasing strains on our health-care, education, and social-services systems. A study released last month put the annual cost of autism in the U.S. at $126 billion, more than triple what it was in 2006. The bulk of those expenses are for adult care. Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, calls the situation “a public-health emergency.” And if you think things are tough now, she cautions, just wait until autistic teens start aging out of the education system over the next few years. “We as a nation are not prepared.”
Every day I see families dealing with challenges that would no doubt break me. I'm glad for my experience at the hospital I work for, which specialises in orthopaedic issues in children, teens, and young adults. Working there has taught me a lot about being cognizant of the needs of patients and families, and a simple kindness can mean a great deal in what could easily be a frustrating experience.

Also in this issue, there's an excerpt from a book about raising a son with special needs:

Buzz Bissinger on Raising a Special Needs Child: The author comes to terms with a son who can never grow up [in print, the article is titled, 'You're 21--not 6'.]

And the editorial also has this theme, for the editrix knows from personal experience the challenge of raising a child with autism. In her editorial, The Forever Child, Tina Brown reflects on her own experiences and the the challenges parents (and society alike) face as their children come of age.

If you don't normally read Newsweek or The Daily Beast, you might want to check these out. Overall, it was an excellent issue. And on a lighter note, I got to read one woman's entertaining account of discovering the distance between 'fanny' in American and British English in a live interview in Britain, and how it turned out to be a mistake that worked well for her in the end.

Continuing with the autism theme, there's another great article in USA Today:

The May family copes with four boys' autism as a team
Children aren't the only ones who are cruel. Adults often don't understand, either, Nicole May says. "No one wants you around when your kid can't behave."

"People say, 'I don't know how you do it. How do you go out?' But we can't just stay home. They're autistc. They're not animals. They have to learn to live in the world. The world is not going to adapt to them."

Just getting in and out of the grocery store — let alone sitting through church — can take all of her patience, May says. "I try to explain why they scream and yell and run. It's not because we don't discipline them. Older people will say, 'In my day, we didn't have these things.' Well, that's because they were in an institution."

No comments: