In a February 2007 American Journal of Public Health article, "Framing the Public Health of Caregiving," Ronda Talley, PhD, MPH, and John E. Crews, DPA, contend that "surprisingly little attention has been focused on framing caregiving from a public health standpoint." (quoted from the Family Caregiver Alliance)
I had always envisioned a family caregiver as someone typically dealing with a hospice or perhaps an eldercare type of issue-- Alzheimer's, Parkinson's, stroke, dementia. But in our case, Asperger's Syndrome never impressed me as a matter requiring me to be a caregiver as the wife of an AS (Asperger's Syndrome) individual.
I realize now that my line of thinking was representative of the big-huge identity crisis going on in the field of autism advocacy. American TV viewers have recently seen Jenny McCarthy on Larry King and Oprah, and the media images of her cute-blond autistic toddler might come to our mind's eye as we consider the burdens of those who lovingly and sacrificially take care of autistic family members.
My autistic husband is 51, and while I still think that he's cute, it is not endearing to face his unemployment and my frustrations about the daily tasks that he struggles to perform.
We've tried to get some additional vocational training and developmental skills services for him, but because he's an adult, and because I am considered to be his guardian/caregiver, he falls into a gaping hole in our regional social services safety net.
I should know. I spent six years looking for services and they don't exist in our state... read part two
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