This May, a three-year-old Andrew will age out of the Early Intervention (EI) program which has provided all of his therapies to date. The natural next step for most families with a child of significant physical disabilities is to then begin transitioning their child from a home-based therapy program to a special needs school where the child is pulled out of class through the day to receive various services.
At this point in our lives, it is difficult for me to imagine Andrew ever going to school. Based on travel logistics, the demands of Andrew’s feeding schedule, his overall temperament, and a bit of soul-searching as a family, we have made the decision to not send Andrew to school this fall. Instead, Andrew will stay at home and we will arrange for our local public school district to have therapists come to us, much like how it has been with EI. But, even then, we have been re-thinking much about Andrew’s rather intensive therapy life. When we first started with EI, this is what his weekly schedule looked like:
physical therapy 3x
occupational therapy 2x
vision therapy 1x
feeding therapy 2x
speech therapy 2x
special education 2x
In all, that meant that somebody was coming to our home twelve times a week to work with Andrew. On the one hand, it is wonderful we live in a county so generous with services. We also cannot discount how much Andrew enjoys the touch, sounds, and overall attention he receives during sessions with our dedicated team of therapists. But then add to the many therapy sessions: nurse visits, equipment vendor meetings and visits, the near-daily stream of Andrew-related paperwork and phone calls, doctor appointments, and the occasional night or two in the hospital. It is a lot to juggle and it can be hard on Andrew and our home life in general. Our therapists are wonderful and dedicated to their work, but I sometimes question what it is, exactly, that we are all working towards. And at what price?
In some ways, having a child who is as disabled as Andrew brings a certain level of clarity in terms of therapy expectations. Our personal goals for Andrew have shifted from questions such as “How can we get Andrew to walk, talk, and eat by mouth?” to “How can Andrew best experience love and life?” The old and new goals are not mutually exclusive. But recognizing the futility of the older goals for Andrew, we’ve largely abandoned them and have chosen to, instead, accept and appreciate Andrew as he is. Therapy will always have a place in our lives (it is important that Andrew is continually stretched, bearing weight, and encouraged to move), but it will not be a centerpiece.
Such realizations could not have been made without much reading and contemplation. As Andrew Solomon so eloquently states in his epic tome, Far From the Tree:
You find beauty or hope in the existence, rather than the achievements, of such a child. Most parenthood entails some struggle to change, educate, and improve one’s children; people with multiple severe disabilities may not become anything else, and there is a compelling purity in parental engagement not with what might or should or will be, but with, simply, what is.
I lay beside him in his bed, in the dark, and contemplated some very uncomfortable thoughts. “What if he dies? How will I remember his childhood?” Then, “What if he lives? How will he remember his childhood..?” This second thought was more harrowing for me than the first.
With this realization, Jennifer withdraws Owen from school, puts together a youthful and eclectic caregiving team, and focuses on providing a more meaningful daily life for her son. She continues:
I made the change just in time; Owen passed away two years later, at the age of twelve. I am grateful to have few regrets. He had a good life, which included two wonderful years in which we didn’t try to achieve anything, and more importantly, I didn’t try to prove anything.
Life after EI for Andrew will consist of a dramatic reduction of official therapies, and involve more swimming, napping, cuddling, walks around the neighborhood, and tagging along with his sisters on afternoon trips where he can fully experience the sensuousness of the world. In short: we envision meaningful, sensory-rich days at a pace our family can handle and will hopefully all look back fondly on. There’s a good chance we will never enroll Andrew in school. But it won’t stop him from continuing to learn about the world in his own way, and for Andrew to teach the world a thing or two as well.