Today I woke up, and in the haze that has followed me since Wednesday, I numbly got my kids ready and walked them to school. By the time I got home, I was soaked from the pouring rain. I didn’t realize that I had an unused umbrella in my hand until I put it down after walking inside. Freezing, I made my way to my bed where I now sit.
I looked for an update on Issy Stapleton. I wanted to know if she’s okay. If she’s regained consciousness that was stolen from her just days ago. The Team Issy page on Facebook hadn’t posted anything new, but I noticed something- it had at least a thousand more “likes” to it. Before this, every follower on that page had been fought for. Kelli had worked tirelessly to get Issy’s story out. To raise money for her care. I know this, because I worked with her and a friend of mine to get her story on CNN. That didn’t happen. Kelli had petitioned news outlets, television shows and even Dr. Phil. She begged and pleaded for some attention.
Today, she got it. As I moved from the Team Issy page to Google to look for any update, I noticed that her story has been picked up by most of the major news outlets. Not the story of a mother who had been fighting the system for years and years trying to get better care for her autistic daughter. Not the story of a beautiful blonde fourteen year old autistic girl who had been denied services time and time again, from the state, from insurance and lastly, again, from the schools. No, the story now being told is of a mother that did the unthinkable. The unconscionable.
I could grapple for months with the knowledge only that my beautiful, vibrant, strong, sunburst of a friend tried to kill herself. I could seethe in rage at her for just that. How dare she take the only mother her children have? How dare she stop fighting? How dare she not tell anyone it had gotten that bad? How dare she leave us? But all of that emotion gets grossly conflated when you add in the horror of the other choice she made that day. She tried to take her daughter with her.
There are no words for the emotions we all feel for that.
The news outlets I read are missing the point. Sure, it’s sensational to see this all-American woman sent to jail for the absolute worst crime a mother can commit, but that story will soon fade away. It will be moved from the front page to the back, maybe with a blurb about what a victory it is that she was found guilty and sent to prison for the rest of her life, but that is all. We will be left worse off than we were before, inside the autism community and out.
The story that needs to be told is one of an amazing fourteen year old girl who struggled to live in a body that raged beyond her control. A girl who wanted to fit in, be loved, and be herself, but couldn’t quiet the storm within her. People need to know how hard her parents fought for her. No stone was left unturned in her care. Time and time again they were denied access to treatment, to care, to school programs and to hope. They lived life on the highwire of special needs and had no safety net for when they fell. While we can have no sympathy for the last choice Kelli made on Tuesday, we do need to understand what led up to that. We need to get the message out that parents need a safety net. People with autism need easier access to the services they need. They need to be treated as equals, because they are equals. Parents need advocates. We need to feel that we can be open and honest about autism without being vilified as horrible parents who do not accept their child for who they are. We need to know that people care. And we need a break. A minute to take off the responsibilities of care-taking, parenting, therapist, advocate, and punching bag.
This will keep happening so long as we focus on the crime and not on the criminal and the victim. We need to focus on what we can learn from this to prevent it from ever happening again. If we do not understand what caused Kelli to break and work like hell to fix it in our own communities and in the system, we are all at risk for it.
All of us.