Saturday, April 18, 2015

"Are You Serious?" Awards - Volume XLVIII: The Momma's Losing It Edition

Before I am construed as being overly snarky, let me begin today's post by emphasizing that it IS critical to have research that validates our personal experiences as parents raising children with special needs.  Being able to point dismissive friends and relatives to hard data can be incredibly vindicating.  It can also be essential in acquiring the help we need and in developing strategies for problem solving.

That being said, there are times when I wonder if the copious amounts of money poured into research could be better put to use elsewhere. 

Take for example a study whose results were recently touted in Disability Scoop, "Disability Caregiving May Lead To Memory Decline In Moms."  The article begins,
"The stress of caring for a child with a disability may truly take a toll..."
Are You SERIOUS?!

Ask any parent raising a child with some sort of chronic illness, special need, or disability and they will confirm what this unique role does to them as a person.  All of the demands requiring parents to coordinate intensive medical care, additional insurance challenges, increased interventions with schools, difficult financial hurdles, and more contentious family dynamics cannot help but create mental mayhem.  A parent's brain must continually be running on overdrive to prioritize, reprioritize, and reprioritize at a moment's notice the fluidity of crises they confront.  Is it any wonder that we get distracted, irritable, overwhelmed, and forgetful?

Aside from our anecdotal personal stories, I have to wonder about the redundancy of this most recent data.  Birthed out of the University of Wisconsin - Madison's Waisman Center, a similar study in 2009 likened parenting a child with autism to the combat stress of a soldier.  While those raising a child with autism know that it is difficult, the LEVEL of stress revealed by this particular study was compelling.

On the other hand, a discovery like "Memory may suffer in mothers caring for children with disabilities," seems banal at best.  Out of personal experience, it literally made me want to respond, "Well, DUH!"

My apologies to the hard-working crew over at the Waisman Center for my snarkiness, but perhaps future research might be better directed towards something constructive like unveiling best practices in caregiver stress management, similar to ones detailed in articles like, "Special Needs Battle Fatigue," or "Handling Stress - A Guide for Caregivers."  Parents like me need more practical help in learning to build a support system than having thousands of dollars spent on the obvious fact that we need one.  We need help organizing in a life that most days feels so completely out of control.  We need access to affordable mental health care that helps us manage the stress and memory loss.

Sadly, the lion's share of dollars will continue to fund big research like this every few years, because that's what universities do.  Wouldn't it be nice if instead that money actually went to helping us? 

What do you think?   

~ Barb Dittrich

2 comments:

  1. I hope this would get to the people in charged and with authority to make the changes you stand for here.
    I empathize with moms/parents who are going through the same challenge.

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  2. How about studying ways to help these children that are now becoming adults. There is nothing for high functioning, but seriously impaired adults with autism.

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