Monday, September 22, 2008

What's It Like to Raise a Child with Special Needs? Read This.

Especially if you do not have a child with special needs, please read this post by Margaret Storey, a history professor at DePaul University. Nothing I've previously posted better describes the emotions I've experienced raising a child with special needs. Maybe I just relate to Storey's experience because, like my daughter, her daughter is non-verbal with hard-to-control epilepsy.

She explains her mixed reactions to the nomination of Gov. Palin and notes the difference between giving birth to a child with special needs and raising that child.

"From our point of birth to a special needs child is no more God's work than having a 'normal' child....Once a child takes first breath, the responsibilities of a parent to nurture and protect take over with considerable urgency. Some undertake these responsibilities well; others do not. Sarah Palin may be a wonderful parent and have a loving family. But she has not earned the right to be regaled as exceptional simply for loving and caring for her youngest child. With the exception of those who adopt children with disabilities, parents of special needs children do not choose this 'vocation.'...

"It's true -- we aren’t like everybody else. But the difference is not a matter of heroism and sacrifice. And it's not just a matter of giving birth. It's the fact that raising a child with special needs is a life-altering experience in which one is initiated -- sometimes kicking and screaming -- into a largely unseen, or at least unacknowledged, world. Exposure to that world is fantastically transformative in terms of how one interacts with family, friends, neighbors and -- especially -- social and governmental institutions.

"Sarah Palin is currently at the beginning of this journey. She will, we suspect, soon discover that Hockey Moms have got nothing on Special Needs Moms who manage the schedules and transportation of their children: physical therapy, speech therapy, occupational therapy, primary care doctors visits, specialist doctor visits, medical tests, and on and on. As Trig grows, Sarah and Todd Palin may have to acquire arcane and specialized medical knowledge to understand and care for their son’s complex needs. Like other moms and dads, they will become experts in the health care industry as they advocate for comprehensive coverage, tests, medicines, therapies, and equipment that their child needs. And then will come school, and fighting for their child’s educational needs to be met by institutions that are underfunded and often ill-equipped to do the job....

"All that we do we do for her we do with help—and much of that help has been mandated by the often-derided 'big government.' The Americans with Disabilities Act, the Individuals with Disabilities Education Act (IDEA) that mandates fair and appropriate educations for people with disabilities, Illinois's 0-3 Early Intervention programs, the City of Chicago's grant program for housing modifications for the disabled, the non-profit foundations and organizations that provide us with resources and hope -- these programs and others like them have been put in place through the efforts of lawmakers and citizens who believe that we are all benefitted when the least of us is protected."

She concludes:
"Put your money where your mouths are, McCain-Palin. We don't need to be reminded of the 'great job' we're doing as parents of kids with special needs. We don't need 'heroes' to model sanctimonious double-talk. We need our country and its leaders to demonstrate a real commitment, not lip service, to the needs of the weakest and most vulnerable in our midst."
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