First in a series. Coming in Part 2: Can there be a cure without a cause?
This is the face of frustration. This is the sound of fatigue. This is the mother who has jumped through every hoop, fought every battle, and pushed through every boundary for her son. This is the woman who, after it all, still finds herself without answers, without solutions, without anywhere else to turn.
This is an autism mom.
In the ever-changing and often confusing world of autism, Kim Goff's story stands out. Not because it is particularly unique, but because of its perfect ability to represent the experiences of so many other parents out there raising children with special needs.
When autism first nudged its way onto the list of disorders tracked by the Centers for Disease Control in 2000, it only affected an estimated 1 in 150 children. Today, that number has tripled to 1 in 50. This dramatic increase and the accompanying deluge of questions surrounding its exact cause — including whether or not autism cases have really even risen at all — have only added to the disorder's myth and mystery.
Confusion over autism, led by its vague definitions and a litany of contradictory and inconclusive reports and studies, has given birth to a hazy awareness of the disorder. Through the work of large national organizations such Autism Speaks, many people have come to recognize the colorful jigsaw puzzle piece used to symbolize autism, in much the same way that pink ribbons symbolize breast cancer.
But does that mean that society is also ready to interact with and care for an autistic population? These are the questions that parents like Goff have known the answer to for years. In a word, she says, the answer to both is simple — no.
Kim's son, Christian Goff, is 12 and has been diagnosed both with autism and mental retardation. He is barely verbal, cannot read or write, and until last year, was not potty-trained. Kim has spent all of Christian's life trying to improve his condition, but after 12 years of lost sleep and hard-fought battles with schools and service providers, she is still here.
She is still sitting in her Spring Grove home watching Christian suffer through massive meltdowns, banging on doors, breaking cabinets, and punching holes in the wall for seven hours at a stretch. She is still typing the name of Christian's favorite television shows into YouTube for him, because he can't type them himself.
“Christian can't have sleepovers, or birthday parties, or play sports,' Kim said. “It's very isolating.'
A business owner who started her own women's professional networking organization, Kim typically speaks in short confident sentences, punching out only what needs to be said before moving on to the next topic. But when she talks about her son, and the pain that he must feel with his disorder, things are different. She draws out her words and really takes the time to indulge in her emotions.
“I love my son,' Kim said, stifling a lonely tear. “But raising him has not been positive. I know I'm supposed to say things like, oh he's a blessing, but you don't live with what I live with and say it's a blessing.'
Kim can't take Christian out to restaurants, for fear he might have a meltdown.
“What if he flips out and hits me?' Kim said.
She takes Christian out and people stare. And when she takes him into public restrooms with her because he still needs help going to the bathroom, then she says they really seem to judge her.
These are the realities of autism for Kim. And even though people might not want to talk about them, they're there. From public life to Christian's school, Kim always seems to find herself talking when other people don't want to.
“If we speak up, we are labeled. We are the problem parents,' Kim said, drifting back into her brisk business voice.
Kim has a lot of experience speaking up. She has spoken up to Christian's school, health care organizations, and to the community at large, all with the intent to make her son's life better, along with others like him. The services that her son needs are just not there, Kim said, which is why she is pushing so hard for someone to establish them.
“Some moms will take this on and it will become a passion,' Kim said. “They will go back to school, they will become a therapist. Then society is like, why don't you do that? Well I have my own business and a women's group. People don't understand.'
So Kim advocates for her son in a different way. She fights the policies she feels are unjust. She butts heads with administrators. She focuses on the big picture. Because of all this, she said, she won't have another child.
“People always want to celebrate autism,' Kim said. “I want to fight it. I want to see something developed to stop it.'
Tomorrow: The search for answers.