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.