Wednesday, September 3, 2014

A Tragedy...

I read a news article and my heart broke.  A mother of three children one of which was affected severely by autism pled guilty of attempted murder and will soon be sentenced.  She had been an involved parent and a stalwart advocate of her child and others with autism for over ten years.  She had researched and fought with agencies trying to get help for her child and her family.  At the same time, she daily dealt with the behaviors that defined her daughter's autism.  The teenage daughter was big enough to hurt herself and her mother and her siblings when she was aggressive.  The girl had difficulty containing bodily fluids and did engage in negative behaviors such as smearing feces.  The mother reached a horrid moment and attempted a murder-suicide via carbon monoxide.  They were found before either expired.  Just retelling this story breaks my heart.

First the obvious, severe behavioral challenges do not justify an attempt to end a life.  I do not condone infanticide.  Challenging behavior, even severely challenging behavior, never gives a caregiver the right to take a life.

However, there is so much more to this story.  There is a tone of desperation that should not be missed.  Autism is diagnosed more and more frequently and a number of those diagnosed are severely affected.  I have tried to give you within this blog, sweet reader, a tiny peek as to certain aspects of what life can be like with Isaac.  I give you no more than a tiny peek because I do not think you could handle more than that.  I love my son dearly, and we do the best we can ....but I would not wish this experience on anyone ever.

I have been hit and bitten and kicked.  I have been bruised and I have bled.  I have cleaned out feces from every toy, room corner, and article of bedding.  I have cleaned feces out of teeth, nails and ears....while being screamed at and hit.  I have showered my child at all hours of the day and night.  We have rethought room construction and accessories in response to Isaac's pica (eating non edible things).  We are sometimes a half of a step ahead of Isaac's autism but are usually just figuring it out as we go along.

In the midst of these behaviors, we have fought and advocated with every available agency.  We have begged and cried.  We have written our legislators and have become indignant at their responses and the lack of real help.  Isaac gets every available service that exists here.  It is in no way enough.  At the end of the day, it is me and Sam interpreting, managing and mitigating Isaac's behaviors.  I have written at length about how this impacts our family and our ability to get about in the community.

There are more difficult situations.  I am not envious of them.

I am lucky.  I have an amazing husband and we share the responsibilities of caring for Isaac.  If one of us needs a break, the other parent steps in.  Some are single parents.

To be honest, I don't know which was the most difficult day...the day Isaac was diagnosed or the day I finally realized that help was not coming because help of the sort that would actually help did not exist.  Neither were great days.

I am lucky.  I have the ability to take life moment by moment.  I categorize my life in two time and not now.  It is a coping mechanism and it helps.  I get through the now.  I clean or deal with a behavior or argue for a nonexistent service in that moment.  The moment passes and I may have a moment to take a deep breath.  That is a good moment.  I thoroughly live there until the next moment sweeps me forward.  Moment by moment....step by step.

The mama in the news story got overwhelmed by all the not now.  Not now past is full of very difficult memories.  Not now future is full of worry.  Both not nows will crush you.  My heart breaks that my peer got swept into the not now and followed it down its overwhelmingly forceful bleakness.

I pray that this case will shed some light on the realities facing many families.  We need help desperately.  Our children need services now and will continue to need them throughout their lives. This news story is a tragedy but perhaps it can serve as the canary to alert the populace of the overwhelming need that is at hand.

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