My first children were a set of triplets born at 26 weeks gestation, 14 weeks early. We went from happy young couple planning to start a family to being thrown straight into the crazy and confusing world of the Neonatal Intensive Care Unit, times three. Because they were both triplets and micropreemies, we got a lot of freebies, and we also got enrolled in a lot of research studies. One of these was looking at outcomes from improved communication between medical professionals and families. As part of this study, we were able to meet with all of the doctors who were caring for the triplets all in one room, every week. Neonatalogy, cardiology, pulmonology, ophthalmology, everybody met in one conference room. Each doctor would give a report on how the triplets were doing that week, they would outline their plans for the upcoming week, and we would have a chance to ask questions. Everybody could hear how all of the pieces of the triplets’ care fit into the whole and get an integrated picture, instead of just dealing with their little pieces.
A couple of weeks ago, I attended a training conference about the concept of a medical home and integrated care. They invited (paid, actually) me to attend as a parent of a child with a genetic condition, specifically. We talked about the idea of having one medical professional in charge of a child’s care, one person who would talk to all the other doctors and integrate their practices. The idea dissolved over the course of the day, though, as it became obvious that we, the parents, were the ones who were doing this work.
I am the only adult in Kender’s life who talks to the ophthalmologist, the family doctor, and the psychiatrist. As a homeschooler, I am also the only one who orders and pays for adaptive equipment like canes, audio books, and braille. I am the one who handles his service dog. I am the one trying to figure out, by myself, how to meet his needs, both medically and educationally.
And I don’t think the two can really be separated. His blindness affects how the psychiatrist evaluates him, and it affects the ways in which we meet his educational needs. His autism affects how he presents his blindness to the optometrist and the ophthalmologist, and it affects what kinds of adaptive equipment and skills he can use. Everything affects everything else. His eye condition led to chronic pain issues, which slowed down his development, and the autism kept him from being able to communicate changes in his vision or pain issues. Even his dental needs affect his autism and his education, because he was in pain from tooth problems that developed because his autism affected his self-care skills, and his autism also prevented him from telling us there was a problem. And round and round it goes.
Something about that conference sparked an idea: What if I could set up with Kender the kind of roundtable conference that we had with the triplets in NICU? What if I could get an optometrist or ophthalmologist or both, a Teacher for the Visually Impaired (TVI), a psychiatrist who has done a recent developmental evaluation on Kender, a teacher from either a Montessori or Waldorf school (preferable with experience in autism or blindness), A’Kos’ trainers from 4 Paws, even an occupational therapist (OT)? What if I could get all of these professionals to sit down with me in one room, corporeal or virtual, and talk together about Kender? What if the ophthalmologist and the psychiatrist could interact directly with the teacher, without the conversation being relayed through me over months and years of scattered appointments? What if everybody could communicate together, and together we could come up with the best possible strategies for facilitating Kender’s continued growth, development and education?
I thought this was a hugely exciting idea, and I’ve been trying to pursue it for the past couple of weeks. I’m not having much success, unfortunately. I’m running into the same walls that I always have. TVI and OT professionals work for the school districts exclusively and have told me in the past that their contracts forbid them from working privately for somebody. The Commission for the Blind does not work with children, because that is the school district’s job. The autism professionals have no experience with blindness. Most of the professionals, educators, and researchers with experience in the conjunction of blindness and autism are in Texas, at the state School for the Blind there. (No, Michigan doesn’t have one.) The Montessori and Waldorf teachers don’t want to work outside their schools. Maybe our ophthalmologist would do it, just for fun, being an inquisitive and research-minded kind of guy; I haven’t asked him yet. I would pay all of these people, and it would have to be out of my own shallow, bedraggled pockets. I would do it, for the chance at this roundtable, for the chance to really have a sense of direction with Kender.
I can’t do it alone, though. I’m hoping to spread the word through some extra channels now, through both the blindness and the autism communities, even through the education communities, to find some folks willing to work with us on this. I will teleconference, if it comes down to it I will beg, borrow, sell whatever I have to to travel. I want this to happen. Kender needs this to happen. Not just Kender, but the other kids like him whose parents are also lost in the sea of multiple doctors and disciplines. Even school IEP meetings don’t feature this kind of meeting of the actual doctors who really know about the conditions involved. I refuse to believe there are no professionals out there interested in this model of care.
So please, share this around, and let’s find some professionals. I may have a psychiatrist lined up, and I’ll be approaching our ophthalmologist about the idea. I can talk to the trainers at 4 Paws. But I also need a TVI and a non-traditional teacher, at a minimum. If you know anybody willing to work with us on this, please send them my way.