The Aspects of a Tragedy

I didn’t hear about the Stapleton family’s tragedy until this morning.  Then it was bits and pieces, no complete story.  I finally found Kellie’s blog and read the last couple entries.  Then I sought out a news report.

First, I want to say that I in NO WAY condone or understand what happened.  I do not walk in Kellie’s shoes, I do not fight her fights, live her life.  I do know there is always a choice and always help.  The help is often hard to find and when you do it is still difficult to get.  I also know that all life is valuable and that those with disabilities have just as much right to live and be happy as the rest of the world.  I could even argue that they have more right because they often fight harder, have bigger hurdles and are not treated as ‘real’ members of society.  Kellie’s choice was wrong.

But, I also understand the pain, fear, hopelessness and helplessness of feeling like you are not reaching your child.  That what you are doing to help is a waste of time and money and not helping at all.  I understand the fear of your child’s behavior, of not knowing when the next explosion will happen, what will trigger it or how significant it will be.

As Autism families, I think we sometimes feel broken.  We are not the broken ones though.  We are the ones striving to be whole and complete.  We do whatever, whenever to help our children.  We look for ways to include them, make them feel safe in a world that is often too overwhelming.  WE are not broken and neither are our children.  It is society, education, insurance and government that are broken. 

We fight to have our children included.  We fight to not respond to the stares, snickers or comments when we are in public.  We fight for inclusion.  We fight for access to ASD classrooms and services.  We fight for paras and appropriate education.  We fight for teachers to see our children’s strengths and help build them, not just look at the deficits.  We fight for speech therapy, occupational therapy, feeding therapy, behavior therapy, ABA, social skills therapy, social skills groups.  We fight for medical coverage for co-existing diagnoses.  We fight for laws and equality.  We fight for adult programs to support our children, who will grow up.

All this fighting is hard.  It is emotionally, physically and financially draining.  It leaves us feeling battered and bruised.  It leaves us feeling stressed.  It leaves our families feeling stressed.  It leaves our spouses stressed.  It often leaves our spouses and other children feeling left out or neglected.  It leaves us feeling guilty.  At the end of the day it leaves us feeling hopeless, helpless and defeated.

Don’t get me wrong, there are good, even great magical moments.  Small goals or milestones being met, new skills achieved, a day with no call from the teacher or school, a play date that lasted the full planned time.  There are even days or weeks where things seem ‘normal.’  Days when you can almost forget the battles you fight non-stop.  But it all cycles back around and the ever changing ebb and flow that is Autism shows its face again.

While we will all be quick to join one side of this controversy, I propose we do not judge this mom, this family, this situation, but that we unite and seek change.  Regardless of our stand on this tragedy, I think we can all agree that we need to make society, schools, insurance companies and the government aware of what we do, how hard we fight, every day.  We need them to be aware of hard it is and how little help there is.  We need to improve the system.

A single bad day does not drive a mom to think, let alone act on, the unthinkable.  A bad week or even year does not push us into that dark of a hole.  But a lifetime of fighting, climbing, pushing and begging that all goes unanswered does.  I have been there, in that deep dark hole, wondering how we were going to get out, how we were going to get better and move on.  It was not easy, it didn’t happen quickly, but it did happen.  It doesn’t stay sunny and bright either.  Occasionally we fall back into a hole and have to climb back out.

As you choose your ‘side’ and make your comments, either to friends, family, co-workers or on facebook, twitter and in blogs, please remember that while this mom made an unforgivable choice, the system failed Issy and her mom.

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6 responses to “The Aspects of a Tragedy

  1. I am a retired teacher; if I were not retired, I would have been on the phone today to MESSA demanding to know who they could have let this family down. If I remember correctly, when the family was first working to get funding for Issy to go to Great Lakes, they were told that the center thought Issy would need 9 or 10 months of therapy. A small regression should not have resulted in Issy’s treatment at Great Lakes being stopped.
    If someone has cancer, and it comes back, I do not think that treatment is stopped, or viewed as “ineffective.” Why are the standards different for diseases of the brain. I do not know the Stapletons; but I have followed Issy’s story since February or so.
    I realize how fortunate we are that our 25 year old son has never been violent. But that does not mean it has been easy for us, or that we have not had to fight “the systems” (ISD and CMH) all the way. I have been fighting back tears all day, since I first heard this news this morning. My heart is just breaking for this family, and all the families who struggle with children on ASD spectrum everyday. I thought things were progressing; but now I am not sure.

  2. I have to disagree when you say there is always help available. Sometimes there is no help out there and you only have yourself to rely on.

  3. Gretchen Gustafson Shea

    This just goes to show that there needs to be more support for ASD kids, families and adults. This constant fighting for services, what is best for the child/adult, and then what is best for your family, and then for yourself is exhausting. I am hoping that this tragic event can stir up a change in the system. I hope everyday.

  4. Yes the system failed immensely. The system needs to change so that people like Kelli do not reach such a desperate state. There is help out there but when you are in the depths of despair, it’s difficult to find it and depending on where you live, resources can be stretched to the breaking point. We, as a society, need to nix the taboo and reach out to those who need support and help in finding those resources. We are not always capable of acting in our own best interests, as this tragedy (and others) has proven.

  5. I read Her blog this morning and had no idea what had happened until later on. I was shocked. I was saddened.. and I’m so glad you wrote about this. I agree with you. I can’t condone her actions. Never. I do understand her pain to an extent. None of us will ever fully understand another mother/father’s pain.. we all process it different… I wish there was more that could have been done. On the school side… and on her side too.

    ” Regardless of our stand on this tragedy, I think we can all agree that we need to make society, schools, insurance companies and the government aware of what we do, how hard we fight, every day. We need them to be aware of hard it is and how little help there is. We need to improve the system.” <—— THIS… THIS….THIS….. I want to yell it from the rooftops!!! Thank you ❤

  6. http://higgle-e-piggledy.blogspot.com/2013/09/the-status-woe-and-status-quo-if-there.html

    Who could we go to to create something like the Bethany Services Safe Families program in hospitals for our kids? What organization would work with us for that? How could we create a state Autism Network who funds something like this?? If anyone knows, please, lets get it together!

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