Adjusting expectations for child with disability

Effective parenting requires a tailored approach for each child’s unique personality. But when children have a diagnosis that makes them irrevocably different from their parents, the best approach isn’t always readily evident.

Holly and Lyra earlier this summer

In his book “Far from the Tree,” Andrew Solomon combines research and interviews with parents and their children who have a variety of such diagnoses, including deafness, dwarfism, autism and more. Repeatedly, parents recount struggling over difficult choices, such as cochlear implants, medical bone breaking or even if children should remain in the home with their families.

I read Solomon’s book in 2012 soon after my 8-year-old daughter, Lyra, was born with Down syndrome (DS). And while I read the chapter on DS closely and repeatedly, what struck me most was how parents throughout the book must mind the boundary where helping can cross over to harming.

“Fixing is the illness model; acceptance is the identity model; which way any family goes reflects their assumptions and resources,” writes Solomon. And while I insist on people-first language — Lyra is a girl who has DS, she’s not a “Down syndrome girl” — it’s also true that having an extra 21st chromosome literally affects every cell in her body.

Down syndrome causes intellectual disabilities and often other comorbidities (Lyra, for instance, was born with bilateral cataracts). As her mother, I have tried to help her maximize her potential so she can live her life to the fullest and pursue whatever dreams she may have.

But what if, in my efforts to support her, I lose sight of the fact that DS is an essential part of who she is? And if I do, is it because I have a problem accepting who she is? As with some parents in Solomon’s book, what if who I expect Lyra to be fundamentally conflicts with who she is and will be?

The weeks following Lyra’s birth were filled with myriad medical appointments. I also anxiously tried to learn all I could about DS and early interventions. One afternoon, just days after her birth, I held my baby in my arms and cried over her diagnosis. And then I carried on.

During Lyra’s first five years of life, I took her to weekly speech, physical and occupational therapy sessions. I patched her eyes to help her see better, I squeezed her into spandex therapy pants to help her move better. I used a series of straws that were successively harder to suck on to train her tongue to stay properly placed in her mouth.

Lyra’s father and I soon described our daughter as high functioning, a term I’d never considered with any of my other children. I now wonder if that term, which is falling out of use in many disability communities, doesn’t belie an attachment to typical accomplishments.

Just prior to her entering kindergarten, one of Lyra’s preschool teachers told me she was glad we’d advocated for Lyra to be in a general education classroom. The difference, however, between preschool and kindergarten is substantial.

Lyra struggled. We had her repeat kindergarten in the 2019-2020 school year and when we met with her educational team in February 2020, everyone agreed that Lyra would be first-grade ready the following fall.

The next month, COVID-19 stopped everything. As hard as remote learning was for most students, it was particularly devastating for those with disabilities like Lyra’s. The full impact of a year without in-person schooling is hard to assess, but it’s clear Lyra regressed.

As a result, I have been obsessively ruminating: Am I doing enough to help my daughter? Or do I need to adjust my expectations? The answer is never clear and it’s probably a little of both.

When Akron Public Schools finally reopened in March, Lyra was elated to return. At least for the first weeks. In early April, she began telling me she didn’t want to go to school. At the same time, her educators struggled to get her to work or engage in classroom activities.

After the school year ended, Lyra’s father and I had a candid discussion with Lyra’s intervention specialist. This fall, Lyra will attend a multiple disability classroom where she’ll have fewer classmates and worksheets, less pressure and more one-on-one instruction. We hope this will help Lyra to love school once again while catching up on what she’s not fully mastered.

There is much about Lyra that is easy to celebrate and rejoice in. But it’s also easy to want her to succeed on our terms — to flourish in school, to attend one of the many college programs springing up for people with intellectual disabilities, to find acceptance in the world, to let her voice be heard far and wide.

And it’s not wrong to want that. But sometimes it’s hard to know if our goals for her may not actually limit all she is and can be. If I pray for anything, it’s for discernment.

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