Monday, April 15, 2013

How do our children affect us?

Giving C. her meds
A team of researchers from three major Australian universities has been devoting lots of time and energy to parents of children with disabilities - 30,000 of them, to be precise.

Last month they released results of their survey [here]. They found that their subjects were under twice as much stress as parents of "typically developing children". (Now, there's a  PC term for "normal kids" I hadn't encountered before.) 

They also learned that 70% of those parents reported feeling "stressed and worried" compared to only 32% of parents of typically developing children. (Whew, that's a mouthful; I think I'll stick to "normal").

They concluded that the main source of stress was the fact that 
"Children with disabilities have three to four times more emotional and behavioral problems than typically developing children."
Once again,  parents of the profoundly disabled were overlooked. Don't we just wish our children had a few "behavioral problems"?

The emotion I'd presume is most rampant in the land of profound disability is not stress: it's depression.

The prognosis for our children is usually bleaker than for the rest of the disabled population. The knowledge that they will probably never improve and will remain eternally young and dependent, is demoralizing. How did those researchers miss this?

For some more reading about the impact that a child with disabilities has on the physical and mental health of parents and siblings, see "Family Consequences of Children's Disabilities", "Impact on the Family: Time, Employment, Finances, and Physical and Mental Health", and "Family Adjustment to Childhood Developmental Disability: A Measure of Parent Appraisal of Family Impacts from the Oxford Journal of Pediatric Psychology.
P.S. I'm riding a serious wave of demoralization these days. C. is nearly weaned off the Neurontin totally (2 weeks to go). And she has been walking with her new brace and shoe lift for about 3 weeks.  But still no improvement of any sort!

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