I'm At Home With A Profoundly Disabled Child And I'm Afraid I Can't Meet His Needs

So far, my favorite days are Saturdays. I fundamentally understand Saturdays.

For 40 weeks of the year, we have zero standing Saturday obligations. We mark time with my 6-year-old’s five tube feedings. WD sleeps in and later avails himself of cat naps, for which he simply must snuggle. I’m not here to argue about being forced to watch TV and enjoy time with a boy who will soon be physically too big for this. 

I do a few chores, and he tools around in his gait trainer, a piece of equipment he loves that allows him mobility and a modicum of independence, which he mostly uses to spin himself in endless circles. We go for a walk if the weather allows, play with light-up or sound-rewarding toys, read some books. He gets a bath. He goes to bed, and I eat ice cream. Wonderful.

Nothing has changed about Saturdays, other than I can’t stop for coffee while we’re on our walks. The other days of the week, not so much.

For the last year, I’ve been arguing — at Individualized Education Plan meetings, mediation, a due process hearing — with our school district about WD’s school placement. My argument, in short, is that WD needs an environment and educational protocol specifically tailored to children with cortical visual impairment, a neurological blindness. With this protocol, children can better access their world, as WD has experienced for the past three years.

Now that schools are closed due to the COVID-19 pandemic, the joke’s on me.

WD has schizencephaly, a condition in which the brain doesn’t fully form in utero, which has led to cerebral palsy, epilepsy and CVI. He’s nonmobile, nonverbal, and entirely tube-fed. He’s also charming, funny and tenacious.

I am dependent on his school and medical day care to anchor each week, so much so that we’ve never gone on vacation because I couldn’t see how we could make it work with just the two of us.

I know I’m not alone right now. Parents everywhere are in difficult positions trying to navigate working from home or not having work at all, educating and feeding their children, and managing worries about health and safety. For parents of children with disabilities, the days are that much more complex.  

In my insular world of profoundly disabled children, the focus is on what they can do and what they’re working on doing. Now, I have to large-scale reckon all of the things that both of us cannot do. I cannot do physical, occupational or speech therapy exercises that aren’t beat for beat what a therapist has written out and demonstrated for me. Even then, it seems dicey. 

I do not know the nuances of being a teacher for children who are blind or have low vision, nor do I know how to supplement WD’s education the way I might a nondisabled child. WD cannot run around in the backyard — which we don’t have anyway — or create LEGO cities or doodle along with Mo Willems or do a worksheet or anything else on the myriad lists of how to engage children while we’re all stuck at home.

If I hold his elbow, WD can help turn pages in a book as we read, he can paint, and he can shake jingle bells. If I shift his weight forward while he’s sitting in a WD-sized chair and cheer, “Muscles! Muscles! Muscles!” he will push until he’s standing, a skill new enough that he smiles with pride each time. If I hold his hands for balance, he can take halting steps, always starting with his left foot.

How do you fill days with activities when so many of those activities require direct assistance? When a child can’t tell you what he wants to do? How many activities are enough?

According to the National Center for Education Statistics , during the 2017-18 school year, 7 million students—14% of public school students — ages 3 to 21 received services made possible by the Individuals with Disabilities Education Act. Kids with multiple disabilities account for 2% of that population.

What is going to happen to them?

The U.S. Department of Education’s supplemental fact sheet released in late March isn’t very comforting, especially since it encourages school districts not to scrap education altogether for fear of violating the rights of students with disabilities. What falls under IDEA’s provisions for “for flexibility in determining how to meet the individual needs of students with disabilities,” particularly in times of emergency? Secretary of Education Betsy DeVos has 30 days  to inform Congress of the necessity of IDEA waivers “in order to provide schools with ‘limited flexibility.’” What does that constitute?

I want to believe the Department of Education’s guidance — replicated on both my state and school district’s websites — won’t be written off. Or that the directive that children’s IEP teams “must make an individualized determination whether and to what extent compensatory services may be needed consistent with applicable requirements, including to make up for any skills that may have been lost during the closure within a reasonable timeframe” will actually result in compensatory services.

The thing is, parents and schools often have different interpretations of the “appropriate” part of the legally mandated Free Appropriate Public Education. It’s why I sued our school district: Their “appropriate” or “good enough” was not mine. And now there’s an additional couching of phrases like “current circumstances” and “greatest extent possible.” IDEA has also been perpetually underfunded and difficult to enforce in the best of circumstances.

Until three weeks ago, WD had a cadre of teachers and therapists at school and day care who work so hard each day. They make magic happen. My job, then, is to parent WD, and parent I have, specifically making sure to not get sucked into the perpetual therapist-and-caretaker vortex. 

Welcome to the vortex, I guess.

Each day, I remind myself of our luck and privileges: WD is an easygoing kid who rolls with just about anything. I still have a flexible and understanding job. We have a place to be outside where people walking toward us make sure to step into yards or the street in order to maintain appropriate distance. We have a wealth of people to FaceTime and Skype.

WD has his gait trainer as well as a switch, a big button he can use to do things like turn a page in a digital book or express a recorded phrase — both of which are expensive pieces of equipment that not everyone has access to. 

I also find myself grateful for surprising things, such as last year’s back pain and the resulting physical therapy — because now I know how to monitor my body and protect it while being the sole provider of care for a physically dependent boy who is over a third of my weight.

Or for all the times WD spent in the hospital with seizures or neurosurgery or aspiration pneumonia. None of those stays have been as long as a pandemic, but the conceptual pathway is there for how to upend life and live in a world of altered time and uncertainty.

But it’s not enough.

When WD’s school sent us creative, thoughtful websites like Paths to Literacy and Active Learning Space , I spiraled further still. WD and I could do activities like squishing water beads or painting with black light-sensitive paint. You know what I don’t have? Any of those things. I have other things, but should I have these specific things? What have I been doing with our time? Have I already been hindering his progress? This is not a helpful place to be.

Every day that the schools (rightly!) stay closed, every day that’s closer to summer is another day of potential growth or skills maintenance slipping away. And if I decide WD’s going to be OK for however long this goes on, does that make our school district right that these services are expendable or unnecessary? Does it make the members of Congress who wanted to include waiving IDEA in the stimulus bill right? Will that give them eventual leeway in the future for further limiting services or Extended School Year, the summer programming that helps mitigate skill loss?

These are the fears that consume me as we go through each day. What I want, instead, is to go back to cans instead of can’ts. I want to be focused on moments like Monday morning when WD nearly broke his face from smiling so hard when his teacher appeared on-screen for virtual circle time. I want him to continue to thrive.

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