Reflections – Having children with disabilities

The role of parents speaking on behalf of their disabled children can be uncomfortable. I write only about my own experiences and with the permission of my children.

Welcome to the Netherlands

When my eldest was diagnosed in 1996, the poem Welcome to Holland by Emily Perl Kingsley was in its first decade. This piece continues to circulate, comparing the experience of having a child with a disability to landing in an unintended country for vacation. It prompts parents of newly diagnosed children to feel initially disappointment, but to eventually gain appreciation for the slow pace and beauty of life among disabled persons (represented by Holland). The poem sounded like the grief cycle and I wanted no part of that: Feelings. Failure. Acceptance. Blech.

Worse yet, my child did not evoke windmills, tulips or Rembrandts. He failed to crawl. His unique talent was a blood-curdling shriek. He was chronically febrile. Sleep was rare. Trust me, the suffering was great. If I’m in Holland, then where were my canals and Gouda?

I was cradling a newborn while the doctor discussed our 2-year-old’s prognosis and the prevailing medical wisdom that Autism was not hereditary. After the appointment, I sobbed, mostly because my husband looked so shattered, but I felt relieved that we were “very unlikely” to repeat this scene with future children.

Spoiler alert: Four of our five offspring share the label, including that newborn.

• Our third child—the one without Autism—needed more therapies sooner for his disability. Ironically, he fell during physical therapy, requiring stitches. Of course, there’sa scar.

• Our fourth one had brain surgery. Just once so far. (See what I did there? I am downplaying my son’s brain surgery. It was “low-end” brain surgery.)

• Our fifth one’s details are fuzzy and subject to a strict word limit.

  Reflections

  What I remember most vividly about my children’s childhoods are appointments and school meetings. What does that say about me as a mother?

  Our children needed professional support throughout the day, including at home. The more I tried to perform maternal tasks for observers, the less I felt like a competent mother. With a spouse underway (I enviously imaginedhis workspace—a Navy ship—as quiet, orderly and sweet- smelling), I was in zone defense and the opposing team had trick plays up their sleeves: Seizures. Croup. A fractured femur. So much noise. Intersections of chaos and biowaste.

  Professionals put words on paper, but the words mostly did not come true. Almost none of what the experts advised has been demonstrated by double-blind, peer-reviewed studiesof children like mine. Prescriptions are accompanied by warnings. Surgeons require signed acknowledgement that things may not go as expected. There is no guarantee that outcomes match efforts.

  Now in my 50s, I wish someone had said, “No one expects you to be prepared for this. No one expects you to handle everything with grace. Imperfection is not the enemy.” Oh, to have been offered preemptive forgiveness for the myriad ways I’d get parenting wrong.

  Lessons I’ve Learned

  I wish I’d been less ashamed of my family’s struggles. WhenI was a child, I learned that my behavior reflected uponmy parents. I internalized and carried that lesson into adulthood. Combined with ableism (the notion that disability

is automatically “worse” than ability), I viewed my children’s needs as an exposition about me.

I wish I’d been less jealous of my peers (whose childrenhad seemingly greater capacities). Disability hardly has a monopoly on isolation, disappointment or worry. I’ve had joys that my peers missed. They’ve had fears that I skipped.

I wish I’d understood that everything is a trade-off.

• Just because interventions are available, doesn’t mean everyone should spend their childhood in a minivan or waiting room.

• Just because there are hours of daylight, doesn’t require they all be scheduled.

• The compulsion to look in the mirror and feel I’veleft nothing untried; the idea that if I wasn’t fighting, advocating or hypervigilant, then I wasn’t doing “all” I could for my child. It was such a disservice.

• Nothing distanced our family from our peers more than having so few moments for spontaneity, relaxation and privacy. Frenetic overscheduling was more disabling than the disabilities themselves.

  I wish I’d known more ways that self-care could coexist with caregiving. I wish I’d been gentler to my spouse, less rushed with my kids, more patient with extended family, less critical of others and kinder to myself.

  I wish I’d known there is no one correct way to parent. I wish I’d understood that we are mostly guessing, adjusting and trialing-and-erring (with an emphasis on the latter). Messy is its own perfection.

  I wish I’d known that nobody really does this alone (even if it looks that way). We were blessed by distant family members and friends who helped us from one crisis to the next. In San Diego, friends and neighbors shared no genetics, but all the memorable parts of life. Our children continue to benefit from the expertise of hundreds of professionals. There are generous, kind strangers and helpers in our community.

  We were overwhelmed before the first diagnosis. Not tobrag, but our alma mater didn’t prepare us for parenting.We did nothing to deserve our offspring becoming such incredibly funny, delightful, clever, beautiful, demanding and sensational humans.

  Greetings to all the feelings and acceptance I rejected in 1996. There may be a parallel universe where our children would have been unlabeled, undiagnosed and untreated. But it wouldn’t have been nearly as entertaining, humbling, rewarding and (indeed) arduous. v

  Moira Allbritton works for the Exceptional Family Resource Center. She lives near SDSU with her family.