by Krista Hanson
I learned they existed just weeks before we met. I attended a meeting to create something called an Individualized Education Plan — the IEP, they called it, rolling it out like a one-syllable word. My son’s IEP detailed the minutes per week he would have with school-based therapists. I was a child who moved through schools without ever meeting these people, so I had no idea how central to my son’s experience of school they would become.
Joan had been a physical therapist, a PT, almost as long as I had been alive. When we rolled our son Lucas into the Seattle Public Schools’ (SPS) developmental preschool back in 2012, she looked at our bright-eyed toddler and lit up. “Lucas!” she barked in welcome. And then, despite her tender knees, she knelt down on the hard tile floor and began inspecting Lucas’ gear: the wheelchair, the ventilator, the suction machine. Lucas’ peers would all sit on the carpet, criss-cross applesauce, for circle time, a central part of the preschool routine. “How would Lucas participate on the level with his peers if he couldn’t sit up?” she wondered aloud.
Therapists weren’t new to our lives. Lucas was born with a neuromuscular disease, so they had been coming to our home since he was tiny. They came once a week and tried to coax Lucas into moving his lips or arms or legs a little bit more. They brought fun adapted toys and ideas for us. But when they left for their next appointment, my partner, Burke, and I were left to figure out how to make everything inaccessible work for our baby.
At school, we were no longer solely responsible for trying to alter the terrain. When Joan saw something that didn’t work, she sprang into action. Joan had a treasure trove, deep in the bowels of the school’s most remote basement rooms, where she had been accumulating broken wheelchairs, walkers, standers, lifts, slings, braces, and other discarded adaptive equipment from the past three decades. “There’s probably an old Tumbleform in the dungeon,” she said. By the time Lucas started school, she had a seat that tilted back on the floor, complete with custom-sewn bean bags to keep his head up. In the two years of preschool, Joan would not only build custom desks and tools for Lucas, but also teach him how to drive a power wheelchair.
Then we met Ananda, SPS’s Augmentative and Alternative Communication (AAC) specialist. We sat in small chairs in a room adjacent to the preschool and talked about technologies he knew that might help Lucas communicate and participate in school. Lucas was only three, but Ananda was already picturing the third grade. I couldn’t imagine my baby doing long division or reading chapter books too heavy to hold, but Ananda started laying the tech foundations, trying out switches and adaptive computers when Lucas was still little so we’d be ready when he needed them.
A major tech hurdle for Lucas is that he cannot lift his head to look down at a computer on a table, and he can’t lift his arm to reach a computer held up to eye level. But Doug, the occupational therapist that joined Lucas’ team in kindergarten, sees creative possibilities in all of Lucas’ limitations. By the first grade, Lucas’ SPS-created, personally adapted computer system was in full development. One day Lucas’ wheelchair came home from school with a bracket next to the left footplate carrying a tall pole, and a computer connected to it. Doug found an old screw-on mount (I imagine Doug has a spare-parts basement of his own) and attached it to the wheelchair armrest for the Bluetooth trackpad that would allow Lucas to control the computer. Over the years Doug and Ananda have tweaked and adjusted the system to be more and more custom to Lucas’ body. They’ve tested access technologies that sometimes don’t work for Lucas’ extreme level of weakness but were worth trying. (One, a code-tapping system was developed for blind users. Have you ever wondered how people who are blind use technology like touch screens? Doug and Amanda know. They can help if your kid goes to Seattle Public Schools.)
Thanks to Ananda, Doug, and a handful of other tech geniuses working in AAC for SPS, Lucas, now in eighth grade, can do complex math, charting graphs and figuring out the equations for x,y coordinates. He is doing a group research project on fast fashion and global economic supply chains, sharing notes on a Google Doc with peers and writing a complex essay. He writes short stories both in school and in his free time. He took drama last semester and wrote me a play for my birthday.
If you’re picking up on my hints that Lucas is a smart kid, you’re right. But what I want you to understand most is that Lucas is doing all of this — art, reading, and math, at school, at home, completing his homework by himself — with the movement of only his left index finger. And Burke and I have given input, but we did not have to create the tools that assist Lucas. Or buy them. Or fight with insurance to get them. Students with IEPs have the right to these kinds of accommodations in public schools. But they would not happen without the dedicated, creative people who make up Lucas’ team.
Emily was Lucas’ speech therapist in elementary school. Therapy in our culture — physical, speech, emotional — focuses on the individual’s body as the site of the problem and intervention. But Lucas’ speech is slurred because of the shape of his mouth. No amount of speech therapy will ever make all of his speech sounds clear. So, Emily gathered up Lucas’ peers to teach them how to communicate with him. The little kids’ ears were already used to his unusual articulation, but sometimes they ran past him in the hallway, saying “Hi” without stopping to make sure he saw who was talking. Emily taught them how to move in front of Lucas’ wheelchair, into his line of vision when they greeted him. She taught them “repair strategies” for the moments conversation fell apart. One year she helped Lucas and a friend make a video about how to be a friend, showing what to do and not to do when communication falls apart. If you think I cried when I saw it, you’re right.
There is another Emily, Lucas’ current school PT. This Emily makes school physically accessible for Lucas’ bigger-kid body. She trains the people who lift him in and out of his wheelchair. She tracks his pain and helps look for adjustments for his body and also teaches him the body awareness to be able to tell us more clearly about his pain and the sources of it. She teaches him to advocate for himself, and she’s also doing the behind-the-scenes advocacy that she shouldn’t have to do. Next year he’ll go to high school, and back in November she started the process of getting the necessary renovations to the building so they’ll be ready for him in September. Meanwhile, she also fills a gaping hole in our medical system, advocating for students’ wheelchair repairs — the adjustments that keep them moving and prevent sores and chronic pain — that could otherwise fall through the cracks. Emily has been supporting Lucas since he was in the third grade. She sees him in his most intimate moments, moving his body in and out of his chair in the bathroom. Even there — or most importantly there — she takes time to joke with Lucas and talk with him about his latest story. I know she loves my brilliant and also deeply dependent kid.
I have started this love letter over and over in my mind, turning it around in so many ways over the years. I’ve been afraid to write it because I don’t want to gloss over the holes. You may know from personal experience how big the gaps are, how the lack of resources in public schools disproportionately disadvantages disabled and BIPOC kids. And I’ve also been afraid to write this because I don’t want to leave anyone out. The fierce and loving special ed teachers, the one-to-one aides who have been so critical to Lucas’ learning. And there are more therapists that I can name. Caring administrators, too. And amazing teachers. And I have one more fear: I’m afraid of the narrative I grew up with, the those-kids-who-drain-the-system ableist (and racist) ideologies about some kids costing so much. My kid costs all these salaries, and he is worth that and so much more. All our kids are worth the loving support they need to grow and learn and thrive.
When your child is disabled you become their doting parent and also their administrator, scheduler, nurse, advocate, scientific journal reader, renovator, and builder. Burke and I divide up the jobs of scheduling with social workers and doctors and the medical supply people, of fighting with insurance and making our couch taller and looking for camps that might be willing to adapt for our kid. We tend to his body and do the stretches he needs, and when no one is available to fix the things, Burke goes deep on the internet and tries to figure out how to replace a broken part himself. And we make sure to carve out time to just be parents, watching a movie or playing games with our kids, too.
Dearest Joan, Ananda, Doug, Emily, Emily, and so many more:
Every time I look at Lucas fully participating in school, a thirsty learner excited when they start a new unit in history, a diligent and incredible mathematician, a kid doing so many things online that would usually require many fingers on a keyboard, and he’s doing it all with his left index finger, a hilarious writer of short stories, I think of you. My heart bursts with appreciation for you. You, his team at school, moving around often unnoticed in the background of every public school in Seattle, making it possible for so many kids to show up, to be in school, participate in the classrooms, get on buses, get to the inaccessible gym, act in the school play, go on the field trip, type their response, lie down, take off the braces, learn to use new equipment, eat in their unique way, sing in the school talent show even though no one thought to invite them. When my kid is feeling confident at school, which is most every day, despite it all, I think of you. And I thank you with all my heart. Thank you. Thank you. I love you. We love you. You make school wonderful for my kid, and I will never be able to find all the words to express my gratitude.
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