I am a glass half full person, always the eternal optimist. You can tell from the name of the organization I founded – Talk About Curing Autism. But my optimism was put to the test back in 2006 when I handled a series of help calls that rattled my soul.
That morning I spoke to three parents who were at the end of their rope. Each parent wanted advice on how to give their child over to the state or even as extreme as an institution. Each call was a stressed out and broken parent. Their children’s issues were severe and each parent talked about having Child Protective Services called after their child wandered away. Each parent chronicled the self-injurious and accelerated aggressive behavior towards family members. All feared for their families’ safety, but never worried about their own. I had never been confronted with questions like these before. By the end of the last call, I could hardly stand up, I was crying for these families and especially their children.
One of the parent stories weighed heavy on my mind. The parent uttered, “Sometimes others make me feel like I am the enemy. How dare I produce this child into our society.” These words shocked me – my own personal experience with my son at his lowest functioning level where he screamed, threw tantrums, didn’t sleep more than 2 hours at a time, and couldn’t communicate his basic needs was enough to send me over the edge. He was four and just under two years into the diagnosis – I was exhausted! Basic needs like going to the store for much needed supplies were never easy. Often I had to clean up knocked over shelves or chase him in a parking lot while magically catching him before an oncoming car would hit him. Dirty looks and stern words addressing my parenting skills were the norm. “Why can’t you control your son? What’s wrong with you!?!” I am not proud of the answers or comeback remarks I often delivered. One time in a store I replied to a person standing in line next to me, who complained loudly about parents who couldn’t control their kid. My response “my name is Lisa Ackerman, that is my son in a full tantrum, he has autism. Clearly you are an expert in autism. Please show me what to do. I need help.” Needless to say, the person quickly disappeared and my son and I cried together all the way home. We experienced similar comments on a regular basis.
Children with autism don’t have any physical symptoms or a wheel chair that gives an outward sign to proceed with compassion to the outside world. They look and act in ways where the previous generation would recommend a good spanking. I only wish a good spanking would solve autism. After these experiences those calls and the regular communication with the over 24,000 families, which my organization serves, I wondered when did parents and their disabled children become the enemy? Many families, mine included, deal with severe judgment and justification for our existence. Much needed help often was and still is met with a closed door. Nothing about autism is easy.
I founded TACA over 10 years ago with the goal to build community for a fractured group of parents so we didn’t have to feel alone. TACA grew beyond any expectations. We keep moving forward because of the calls and e-mails from the many families seeking help and those whom benefited from our services. Amazing stories of recovery… a child that loses their diagnosis and no longer has autism or need for any services. A child in regular education and indistinguishable from their peers. It’s just like a unicorn sighting. These unicorns really do exist!
My goal is to change the perception that autism is hopeless. To change paradigms that our kids are worth fighting for and need our compassion. Families need to feel support so they accomplish daunting hurdles. Parents will lead us to new answers to help the children we hold dear and share what they have learned with others with a “pay it forward” attitude. Isn’t that what a parent is supposed to do?