| Special about the Akron Beacon Journal
Effective parenting requires a tailored approach to each child’s unique personality. But when children have a diagnosis that irrevocably sets them apart from their parents, the best course of action is not always immediately apparent.
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. Parents repeatedly report that they have to struggle with difficult decisions such as cochlear implants, medical bone fractures, or even having the children with their families.
I read Solomon’s book in 2012, shortly after my 8-year-old daughter Lyra was born with Down syndrome (DS). And while I was reading the chapter on DS carefully and repeatedly, what struck me most was how parents throughout the book have to watch out for the limit at which helping can turn into harm.
“Fixation is the disease model; Acceptance is the identity model; The path a family takes reflects their assumptions and resources, ”Solomon writes. And while I insist on human language – Lyra is a girl with DS, she is not a Down Syndrome girl – it is also true that an extra 21st chromosome affects literally every cell in her body.
Down syndrome causes intellectual disabilities and often other comorbidities (Lyra, for example, was born with bilateral cataracts). As her mother, I have tried to help her maximize her potential so that she can enjoy her life to the fullest and achieve her dreams.
But what if, in my efforts to support her, I lose sight of the fact that DS is an integral part of her? If so, is it because I have a problem accepting who she is? As with some parents in Solomon’s book, what if what I expect from Lyra collides fundamentally with who she is and will be?
The weeks after Lyra was born were filled with countless doctor’s appointments. I also anxiously tried to learn all about DS and early intervention. One afternoon, just days after she was born, I held my baby in my arms and cried over her diagnosis. And then I went on.
During Lyra’s first five years of life, I took her to weekly speech, physiotherapy, and occupational therapy sessions. I patched her eyes so she could see better, I shoved her into spandex therapy pants so she could move better. I used a series of straws that were harder to suck in one by one to train her tongue to stay properly in her mouth.
Lyra’s father and I soon described our daughter as functional, a term I hadn’t considered in any of my other children. I now wonder whether this term, which is no longer used in many disabled communities, does not hide the connection to typical achievements.
Just before she started kindergarten, one of Lyra’s preschool teachers told me she was glad we’d campaigned for Lyra to get into a general education class. However, the difference between preschool and kindergarten is significant.
Lyra struggled. We had her repeat kindergarten in the 2019-2020 school year and when we met her pedagogical team in February 2020, everyone agreed that Lyra would start first grade next fall.
Over the next month, COVID-19 stopped everything. As difficult as distance learning was for most students, it was devastating for people with disabilities like Lyra. The effects of a year without face-to-face training are difficult to gauge, but Lyra has clearly regressed.
As a result, I brood obsessively: am I doing enough to help my daughter? Or do I have to adjust my expectations? The answer is never clear, and it’s probably a bit of both.
When Akron’s public schools finally reopened in March, Lyra was excited to return. At least for the first few weeks. In early April she told me that she didn’t want to go to school. At the same time, their educators struggled to get them to work or participate in classroom activities.
After the school year Lyra’s father and I had an open conversation with Lyra’s intervention specialist. This fall, Lyra will be visiting a multi-disability classroom where she will have fewer classmates and worksheets, less pressure, and more one-to-one classes. We hope this will help Lyra to love school again while catching up on what she has not fully mastered.
There is a lot about lyre that is easy to celebrate and rejoice in. But it’s also easy to wish her to succeed on our terms – flourish in school, attend one of the many college programs that arise for people with intellectual disabilities, gain acceptance in the world, let her voice ring out far and wide .
And there is nothing wrong with wanting that. But sometimes it is difficult to say whether our goals for her do not really limit everything that she is and can be. If there is one thing I pray for, it is for discernment.
Contact Holly Christensen at [email protected].
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