Karen Mayer Cunningham tells the story of how her son’s diagnosis and early school experience led her to become a special education advocate.
Joy for the Journey – Hope for Parents of Special Needs Children
Karen Mayer Cunningham
Expecting my first child in the summer of 1994, the focus was a healthy pregnancy and delivery. As the nurses came back and told me James had ten fingers, ten toes, weighed in at 9 lbs. 6 oz. and got a 9 out of 10 on his Apgar test, I breathed a sigh of relief. My healthy baby boy had arrived safely.
At eighteen months, unusual, self-destructive behaviors began - loss of language, tantrums at the drop of a hat, eating objects, non-stop crying and sleeping only a few hours nightly. My sigh of relief had turned to panic. After seeing countless specialists, we were told our son was autistic, with 15 out of the 16 markers. He would always need one on one attention, he wouldn’t play with other children, he probably wouldn’t graduate high school, and at some point we would need to put him in a home.
As the mother of a child with autism in the mid-nineties, I found out quickly how little information was available for families with a new diagnosis of an intellectual disability. I had people tell me that children will outgrow it, and others that I needed to change my parenting style.
I had one friend tell me that children who are speech delayed can start school at age three. This would be my answer, I was sure of it. We took James for an intake in the summer and he qualified. I was over the moon. The school told us we had to have a meeting before he started. I was sure it was about dress code or school supplies… It wasn’t. It was an ARD meeting, a Special Education meeting. I thought, “I’ve got this, I’m good at meetings.” Except for this one. I walked into the conference room and there were so many people. Introductions were made. There were names, titles andstacks of paperwork. I don’t remember much of the meeting - tears, talks of his many deficits, and finally, “Do you have any questions?” Did I have any questions? Just one: “If he misbehaves will you kick him out of school?” They looked shocked, “No…he’s disabled.” I couldn’t believe it, and I couldn’t believe they used that word.
I knew that this PPCD program would be our answer. James loved it. I loved it. Until the day I received a phone call from my husband who told me a CPS worker was at our door and wanted to ask me some questions about our son and his disability. What????? Someone from the school had reported us, due to James’ strange behavior.
And so birthed the beginning of my special education advocacy career.
I had thought that we were all in this to work together and help my boy. I was wrong. I thought teachers could help me, but I found that most had their hands tied by policies. I thought doctors could help, but it’s the “practice” of medicine, and they practice on us. I had to become someone who could help – someone who could help my son and help others with disabilities. Out of my greatest pain birthed my greatest call. I am someone who finds a way. I encourage, educate, and equip others. It is what we are purposed to do for one another: A Special Education Advocate – one who pleads the cause of another.
In those firsts moments and months of a new disability diagnosis, there can be great shame, fear and worry about the future. We must come alongside those families and show them hope, and the possibility of their child’s abilities. The most rewarding part of advocating for families is to teach them they are well able to advocate for their loved one. The families learn how to better access the public school system, the medical world, local and county agencies, and federal programs. As we connect these pieces, working together, we get it right for the individual. With understanding comes compassion, with compassion comes co-laboring, and we can use those alliances to change the lives of these individuals with amazing abilities.