What Did You Just Call My Daughter?

On the benefits of having an open mind about one’s child called a “retard”, or having intellectual deficits, being mentally deficient, and other interesting and ridiculous things...

When I was just starting out as a child and school psychologist in Syracuse, NY almost 35 years ago, I administered batteries of tests to children to determine their eligibility for programs designed to remediate their learning disabilities, what were termed their “handicaps” at that time. I thought I knew so much. Armed with the best that Syracuse University’s school and clinical programs taught, I offered parents a clear and cogent understanding (using of course the best practice efforts at that time) of their child’s diagnosis and needs in clinical terms.

I was so impossibly wrong about how to go about sharing this information, not having the slightest clue about how to impart this information mindfully and with humility. I cringe at the thought of my arrogance then at those parent interpretives. At remembering how the parents bravely fought not to crack open, break down, cry with shame. And I was so proud of myself: laying out their child’s disabilities and deficiencies with devastating clarity.

I became one of those parents 20 years ago.

I sat, holding back my sobs, my fears, my heart and body slammed and split open by the devastating words, the mountain of words, that inadequately described our beloved and struggling daughter. We listened, as professional after professional mounted, with devastating clarity of their own, a campaign designed to convince my husband and myself of her inadequacies, her deficits, her inability, her other-ness.

When we finally found a school community in another state which offered her a chance at a life filled with purpose, with laughter, with opportunity, I cried with joy. For the first time in her life and our lives with her, her new teacher asked us, “What does she need from us?” and told us that the community could learn as much from her as she could learn from them.

Recently, over a Skype conversation with our daughter, she proudly held up a stunningly multi-colored handmade card. She had delighted in making it for our 29th anniversary this year. It is a tribute to her resourcefulness, her determination – and to the love which flows between all of us.

About 10 years ago, we were told by a sorry excuse for a teacher (my daughter’s name for the woman was “That Witch”) at a public school meeting that included over 15 school staff and four of us (my husband, myself, our amazing Occupational Therapist Jo Teachman and our friend Dr. Gail Rodin, neuropsychologist extraordinaire) that our daughter would never learn to read or write, or tie her shoes. The absolute truth is: if someone can imagine it, they can find a way to do it. And our daughter wanted to read and write. She now acts in plays, writes in her storybooks, and reads at a fifth grade level. Her level of generosity and compassion is quite something. She has, however, never learned to tie her shoes.

As my mother (the teacher who retired after 43 years) once remarked about the way my daughter is put together: “The cloth is whole (it’s cloth of gold). There are just some holes in the cloth.”

In closing, I’ll submit this poem for your consideration by Laura Davies Foley, a most sensitive poet and mother of three wonderful young people.

Parents of Children

with special needs
are blessed.
Their hearts grow every day
larger, softer.
There is no armor,
no shell hard enough
but it cracks
and in comes the painful sun.
There is no forgetful cave of sleep for them,
no loud gestures from mountaintops,
no scaling trees, no surety but
a growing, steady wakefulness,
an attention to simple leaves
and how they gently hold the morning light,
holding
and not breaking.

(reprinted with permission from the author from her book of poetry: (2007) Syringa.
Rowe, MA: Star Meadow Press, p. 32.)