By Cathy Jameson
Ronan has a vaccine injury, mitochondrial disease and seizures. He can’t talk or use the bathroom on his own. He can’t be left unattended or perform typical daily living skills. Ronan requires a special diet, round-the-clock care and a team of professionals to teach him. He has another team to medically treat him and to support him. He’s a severely affected child. I’ve known all of this for a long time now, but nothing could prepare me for a day like last Thursday. That’s the day Ronan’s adaptive stroller arrived. The stroller, while it will be very useful and will allow Ronan to see more of the world, is a reminder that he remains very dependent and sometimes, very weak. Ronan just can’t keep up like other children can.
When I was growing up in the 1970s and 80s, I knew only of a few children who had as severe issues as Ronan does. Poor neurological developmental cases were not among them. One boy in my K-8th grade elementary school was physically disabled and used a wheelchair. A friend’s younger brother had gross motor delays and needed physical therapy. Out of everyone I knew or knew of, only one child’s issues demanded intensive, long-term medical care. Don’t get me wrong. Other kids that I knew needed care or equipment and were in and out of the doctor’s office. But more times than not, the equipment were crutches, and the doctor visits were to treat broken bones or get stitches after a hard day of play. Their pain and medical management was temporary. Children’s health forty years ago wasn’t fragile like that of today’s generation. And unless they were being hidden, cases of severely affected children were drastically fewer than what exist today.
As I stepped into adulthood in the early 90s, I prepared for my career in the education field. Only then was I introduced to children like Ronan. While real, these children were unknown to me personally. They were highlighted in case studies that I was assigned to read in journals found on the shelves of my college library. These children and their diagnoses were quite rare. So was the number of cases of them. Fascinated by how out-of-character their significant struggles and troubles were compared to children I encountered in my childhood, I felt sympathy for their parents. It wouldn’t hit me until after Ronan’s diagnosis in the mid 2000s what those parents went through.
Today, the population of severely affected children is increasing at alarming rates. Once unheard of, these children fill many schools. They live in more neighborhoods across numerous communities around the country. Greater assistance, equipment and therapy is required more so than what generations of children from decades past ever needed.
Their equipment, like alternative communication devices and therapy tools, as well as adaptive plates, spoons, cups and strollers, are daily necessities. They must have them in order to survive their reality, a reality that sometimes includes a world that doesn’t understand them.
My own reality is far different than what I ever dreamed. In preserving Ronan’s development, as well as understanding much of the development he continues to lack, I’ve learned a great deal. I’ve also overcome a great deal as I learn to cope with having to accept different expectations as the parent of a severely affected child. I haven’t appreciated everything or everyone I’ve encountered in the process. I haven’t liked that Ronan and so many other children are missing out on a typical childhood either.
None of this has been easy, and I dare say, we’ve both got quite a bit still to get through. As Ronan ages, I hope we both continue to take steps forward. I pray that he and I have the strength to do that and to push through whatever else happens to come our way.
Cathy Jameson is a Contributing Editor for Age of Autism.