This past week, Fiona came home from kindergarten with the usual notes from her teachers, explaining her day. When I read one note, I envisioned party-style confetti raining down on me. It said, She identified all 26 letters of the alphabet.
For a writer like me, that sentence reads like, “Your kid has circumnavigated an entire planet, and will next start mapping its terrain.”
But that’s not the only big news lately. At kindergarten, she’s making friends, learning to dribble a soccer ball, and skiing cross country, the latter with loads of help from her aide. “She’s rocking kindergarten,” someone said to me the other day, and it’s true.
When she was a baby, I didn’t know she’d be self-feeding by age three, walking by age four, making steps toward literacy by age five. I still don’t know what’s in store for her—what serious road bumps or confetti-raining moments we’ll encounter in the years ahead. But so far Fiona has often been in the minority statistic of people with her syndrome. According to a medical overview written by leading doctors on Wolf-Hirschhorn syndrome, 45% of kids age 2 to 12 learn to walk, roughly 25% independently and 20% with the help of a walker or other supports. According to the same source, about 30% reach some autonomy with eating.
Sometimes people comment to my husband and me that we are responsible for Fiona’s progress. It’s a testament to how hard you guys work, they say. They give Fiona credit too, of course, because they know she’s determined and eager. But aside from her, they believe my husband and I are the ones responsible for our kid’s gains.
As much as I appreciate the compliment, it’s not true. We work no harder than the average parent of a kid with disabilities—which, by the way, means we work damn hard. You can’t be a parent of kid with disabilities and not bust your ass. The job description entails as much. (Wanted: “Special Needs Parent.” Must be able to: research seizure meds, monitor medical anomalies, arrange a complex calendar of therapy appointments, fight with health insurance companies, engage in two-hour-long IEP meetings, seek medically-approved and fringe therapies such as kinesiotape and alternative communication devices and hippotherapy and orthotics and Anat Baniel methods and a weighted blanket and DHA doses. Must do above without getting a single night of straight-through sleep.)
But even though nearly all parents of kids with, say, Wolf-Hirschhorn syndrome, bust their tails, that doesn’t mean all kids with Wolf-Hirschhorn syndrome walk, or self-feed, or learn their ABCs. So putting the acclaim on my husband and me could erroneously discourage other families. I’m not doing enough, they might think. I’m not working hard enough. That’s untrue. If you parent a kid with Wolf-Hirschhorn syndrome, and if you have a normal human heart—which is to say the kind of heart that naturally fills with love for your kid—you bust your ass. You just do.
The story that, after Fiona, my husband and I are the ones responsible for Fiona’s progress ignores two things: one, it ignores what I’ll call The Big Mystery (which is either the dice of the universe or complex gene expression or God’s enigmatic grace, depending on your perspective); and two, it ignores the bigger social picture in which Fiona flourishes.
I’m not going to write much about The Big Mystery. I’ve come to the screen today to write about the bigger social picture. The truth is, Fiona has a wealth of educational and institutional and financial supports, thanks largely to the state of Vermont.
I’ve written once before about the kind of therapy my daughter received in Ohio during her first year of life. Averaging forty-five minutes a week, it wasn’t good. The early interventionist often spent a good chunk of those minutes speculating on areas beyond her expertise, planting unnecessary worries in my head. She suggested Fiona was having seizures when she wasn’t. She speculated Fiona was in pain when I knew she wasn’t. About things a therapist should work on—such as Fiona’s perpetually fisted left hand—the interventionist told me she could do nothing, not even stretches. “We’re not really supposed to touch your daughter,” she told me.
Then we moved to Vermont, and Fiona began receiving hours of hands-on physical , occupational, and speech therapy weekly. Quantity wasn’t the only perk. These were high-quality experts, immediately working not only with Fiona’s fisted left hand but with a variety of other things I could never have known about. Eventually Fiona received even more support from a general therapist who followed through with the goals of the speech, physical, and occupational therapists, totaling sometimes eight hours a week of support. To boot, a special team of consultants visited our house because Fiona wasn’t talking but surely had things to say. They believed communication was a right, and consulted us on getting Fiona an iPad and an app for communication. Both were paid for by the state’s Flexible Family Fund program, which Fiona was eligible for because she had Medicaid. (As soon as we moved to Vermont, Fiona received Medicaid. In Ohio, we were on a waiting list that would have taken years.)
As Fiona neared the age of 3, I worried about what would happen once she attended school, but the preschool program turned out to be even more amazing. Vermont uses an inclusive preschool model—classes are supposed to comprise of 50% kids with IEP’s, 50% typically developing kids. Fiona entered preschool unable to feed herself and mostly crawling for mobility. Within a year, she was shoving spoonfuls of chili into her mouth and toddling without a walker. Learning alongside typically-developing peers was a huge motivator for her, and she had expert teachers, special educators, and therapists as guides.
In short, because the state of Vermont has a progressive, inclusive educational philosophy and invests in quality early education, Fiona thrived. As a professor of poetry and essays and fiction, I could never have taught my kid these things, no matter how hard I worked. Likewise for her dad who, as a priest, can teach a person about The Big Mystery, but can’t help a child’s mouth learn rotary chewing.
Now my kid is in a typical kindergarten class with an aide, where she also receives many hours of speech, physical, and occupational therapy a week. And because she still has Medicaid, we were able to get her a more portable speech-generating device as well as custom-made orthotics that help her walk with more confidence. We’re can also hire a personal care assistant for several hours a week, which alleviates some of the stress of what a friend calls Extreme Parenting and ensures that Fiona has more support. In other words, Vermont frees us up to be a little less burned out, a little more energized, which helps us be better parents.
To recap, Fiona’s success isn’t just because my husband and I are awesome, or because she is awesome, although she is. She’s determined and eager, but she’s still a five-year-old who could easily spend her entire day marking up coloring books. Awarding my husband and I (and even Fiona) most of the praise for her progress negates the role of solid social programs: high-quality early intervention, inclusive education, robust Medicaid. It paints a faulty narrative, one where the individual thrives alone.
This matters now more than ever because the national headlines talk of federal budget cuts, of Medicaid block grants, of an Education Secretary who showed worrying confusion about IDEA (the very act that guarantees kids like Fiona receive an education in the least-restrictive environment.)
Putting the praise on my husband and I alone draws up a faulty myth that government-funded support is unnecessary. And it is oh-so-necessary. Nearly every parent is devoted to his or her child. Not every parent lives in a state that supports them as robustly as Vermont.
The narrative of the thriving individual is beloved in America. Yesterday I listened to an NPR story about a war Veteran who woke from a traumatic incident quadriplegic. He was unable to breathe on his own. He was fed by tube. A documentary filmmaker, Julie Cohen, made a movie about him called “American Veteran.” Cohen said the veteran, Sergeant Nick Mendez, eventually learned to use a sip-and-puff (mouth-operated) wheelchair, and even a sip-and-puff fishing rod. Then she said, “If you’re motivated, and if you’re smart,” all these things are available to you. In other words, the only thing stopping a disabled person from living a certain life of liberation is himself.
What NPR failed to mention, among other things, is the cost of such technology. What it failed to mention is the need for financial support to pay for such equipment. There was no talk of insurance, of social programs to fund such high-tech tools. All a person needed to thrive was “motivation and smarts.” (For way more insight on wheelchairs and cost, please see Bill Peace’s posts at Bad Cripple here and here.
Meanwhile, every now and again, in what’s considered the “poor section” of my town, I see a man in jeans pushing himself in a low-sitting wheelchair. It’s a wheelchair that, despite his arms’ hardy thrusts, despite the hefty effort he exerts in his upper body, moves abysmally slowly. He needs a better chair, I think when I see him. He’s got motivation. He’s got hard work. He needs a better chair.
My kid has motivation. She, my husband, and I put in the hard work. But without the state and the nation’s social and educational supports, I don’t know where she’d be. In the coming months and years, I’ll be doing what I can to defend those supports.
Sidetone: If you have a story about how your state supports (or doesn’t support) your kid’s development, I’d love to hear it.
(Also, if you’re a disabled artist with a story about how cuts to Medicaid might affect you, my friend, writer Sonya Huber, would love to hear it. Check out her project, Lives in the Balance Project.)