advocacy · parenting · special needs parenting

Something Has Got To Give

Every once in awhile, when scrolling through Facebook, I see something that drops my heart into my stomach. Today, it was an article about a murder-suicide.  The victim was Grant, a young man with CP who was nonverbal and wheelchair bound. The co-victim was his father. A school principal, and special needs advocate. The theory is that the strain of caregiving caused the father to snap. 

I pass no judgement on him.*

The strain of caregiving is colossal.  Love is not enough when days and weeks of being overextended turn into years and decades.  And even more so, the heartbreak of seeing your child suffer.  When Ben is having a bad day the heartbreak of enduring it with him is immense.  Some days it’s easy to sink into the abyss of wondering how long it will last; to blame yourself for the circumstances, and to succumb to the inescapable feeling of your child’s struggle. 

Especially when help is almost impossible to access. 

Caregiver fatigue or burnout is a serious concern for parents of children with disabilities, yet if you Google the term, you find resources from the AARP, ALS, Alzheimer’s and dementia sites, etc.  In other words, caregivers are identified as caring for the elderly, not for their children. 

Furthermore, articles place the impetus for resolution for caregiver stress square on the head of the caregiver herself.  Yep, not only do parents have few resources for respite and help, but when we’re overextended in caring for our beloved children, we have to rescue our own selves, as if we wouldn’t have done that in the first place if there were reasonably accessible ways to do so. Getting respite for a child with complex medical, developmental or behavioral needs is outrageously complicated, and if you happen to be above a very low income threshold (just above poverty level), there’s zero help whatsoever in getting it.  And as for hiring a “mother’s helper”, I’m pretty sure no mom on the planet wants their precious tween to be hanging out here when Ben smashes a plate, breaks my glasses or damages my wedding ring (all of which have occurred within the past 24 hours).  

Let’s be realistic here!  Parents of complex kiddos, even those who have decent support systems, are barely keeping afloat, and some just plain aren’t. We’re falling between the cracks because there aren’t that many of us and because we’re too damned busy caring for our children to get the help we need. 

The point of all this?  As a full time caregiver, and acquaintance with many others who are in similar shoes, I’m asking you to stand in the gap for us. Call your state and national politicians, and ask them to make access to respite and wraparound services easier for parents of children with serious disabilities.  Or, just sign this petition

We have to do better. For the children and the parents. 

*Please know that I don’t think murder-suicide is ever okay, and I certainly never want to see it happen under any circumstances. I’m simply saying that humans can only endure so much before snapping. 

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