Stories in the media usually carry some sort of hype. It’s how the newspapers and magazines sell. Printed pages with flashy one-liners catch a reader’s eye, drawing them further into the article. I don’t care so much for the “breaking news” strategy I see on the television or in print because the media’s ploy to attract me always disappoints. What does get my heart racing, is reading pieces like Kim Stagliano’s article about a young mother in Texas who killed her children. The mother claims she killed them because they were autistic. Kim reminds us that murdering children, even those with autism, is not an option. And, our children, all children, should be valued.
Stories of children losing their life at the hand of a parent aren’t new. Reporting on these stories isn’t new either. It does seem that we’re hearing more about autistic children their accidents and murders. Murders, with several instances of the parent committing suicide, are no exception. I haven’t counted but I think almost about half a-dozen cases were reported in the last year.
What saddens me about the stories is that we learn that the parent had mental instability, was without a solid support system or was down and out financially. The parents felt there were no other options than to end the life of their child and even themselves. Caring for a child on the autistic spectrum is truly daunting. It can include educational, medical, emotional, financial, psychological, behavioral and physical responsibilities for the child; add in the family’s typical kids’ needs plus a spouse and your own needs and that’s a lot of parts and pieces to have in place. I don’t know of one family, typical or with special needs children, that has it made, perfect, peaceful, picturesque. I know families with Dad working overtime or at two jobs to fund private therapy, Mom has her own addiction issues in order to face her reality and a once-faithful Church member is cursing God for the life they are living.
Those people and how they cope aren’t restricted to the autism world. You find folks with larger burdens to carry in all walks of life. Cancer survivors, the unemployed, family members of drunk driving victims, those who have suffered a terrorist attack, military members with post-traumatic stress disorder…we all are weighed down, some with overwhelming burdens.
Every bead of sweat that runs down my face, every tear that I wipe away, every aching muscle I feel after supporting my son hurts in some way—I’m either emotionally reminded that he’s got problems. I’m physically stung after a quick scratch to my arm when he wants to go in one direction but we need to go in another. I’m spiritually drained as I cry away a plea, a prayer, a saving grace to get me through a moment of terror. I may act strong and well-put-together, but I am weak, I do cave and I do hate with a passion some of the parts and pieces necessary for Ronan’s every day existence.
What I find more compelling in these media reports about murdered children is a lack of urgency about the autistic child and/or parent’s situation. It’s disturbing that there is a lack of a pivotal response, an absence of remorse to a horrific event, the calls for action to right a very serious wrong.
Why the world hasn’t clued in to our children’s situation is beyond me. We had all of April to make every single human aware of autism. You remember that. don’t you? We saw the autism awareness ribbons fly across the web, public service announcements were made and aired, people donated money for research. That damn puzzle piece was everywhere. It’s quite a busy month if you think about it. After weeks of preparing to make April the best Autism Awareness month, some people work thirty days straight to educate the public, family members, their children’s providers and the neighbors with information on autism. In fact, some have done that every year and for a few years in a row: Hey, you! Yea, You. Do you know about autism? You do? Cool, you know. See you next April.
We have Autism Speaks telling us autism is here, it IS closer than you think. Whoopdee freakin’ doo. A lot of us know autism is here. Saiqa knew. Gigi knew. Daniela knew. Jose knew. Karen knew. They knew all about autism and killed their kids because of it. While I wait for the rest of the world to catch up with the rising rate of the autism diagnoses, parents and providers like me will continue to celebrate their child’s differences while also facing the difficulties and the every-day hardships their child’s differences bring. Some of us will handle it better while others will suffer under the weight of the all that autism brings.
Until the world takes hold and really hears the urgent message about the alarming 600% increase in autism, I will force myself to read the autism woes. I will continue to cringe keeping one eye closed because I’m scared to death to see some of the news about the autism epidemic. Like anybody immersed in the autism world, I read a great deal on what it is, what is does, where it comes from, who has it and then, I sit back and cry. Yes, I’m overstressed but I’m not that overstressed to murder my child, to put an end to his misery and my pain.
Some days I feel like I sound like a big idiot spouting facts and figures on vaccines, autism, parent’s rights and sticking to organic or green choices. I sound exhausted and frazzled talking about how difficult it is to be Supermom to my son and his siblings. I wait for the light bulb to go on for some of the people listening to me. I wait for someone to offer more than just the pathetic, “it’ll be okay” look. I wait for the stranger to stop watching me man-handle Ronan out of a clinic. I wait for the schools to catch up to where my son should be and beyond. I wait for his doctors to show me respect when I share my worrisome reports of an increase in seizures. Instead, I’m patted on the head, shuffled to another department, told a lie, handed a script. While I wait, I know that more of us are paying out of pocket expenses to bring our children to better health. Some of us are paying for private therapy and instruction so our children will have more than self-help skills after leaving high school. Several are spending their entire savings so their children can live now and live better. Our own lives are put on hold but it’s for the good of our children, the ones we value, the ones we would bear the entire weight of the world. I’ll sit here but I won’t wait for help anymore.
It’s time to make a change because for kids like Zain, Faryaal, Jude, Jason, Ulysses and Kate, it’s too late for “awareness.” But for Ronan and all kids like him, as hard as it gets, as long as it takes, I won’t give up I won’t give up , ever.
Cathy Jameson is a Contributing Editor for Age of Autism.