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At my house, one moment of inattention and my older daughter will turn the sweet and sour sauce into face paint, the hand soap into sweet and sour sauce, and the kitchen floor into a grated cheese sandbox.
She is eight, on the Autism spectrum and non-verbal, but she is also quite capable of attempting to satisfy her own needs, which makes her particularly mischievous when it comes to grabbing snacks from the cupboard. And starting the bathtub. And sneaking outside for a quick jump on the trampoline. And deciding that she would be more comfortable wearing fewer clothes.
As a result, my kitchen cabinets have child locks, my bathtub has a removable handle, my yard has a fence, and my daughter wears leotards under her overalls. Parenting a child with an intellectual disability is a profound journey, filled with laughter, as well as moments of bittersweet longing but it is, also, just a little more difficult than those with typically developing children might imagine.
For example, a trip to the fridge is a highly strategic game of beat the clock. How long will it take my daughter to recognize that the refrigerator door is open and that parmesan cheese, which is both yummy and visually pleasing as confetti, is within her grasp? A journey to the grocery store requires bringing the very snacks one intends to buy, a circular proposition that, like time travel in the movies, is best left unexamined. A simple walk outside requires keeping a wary lookout for ice melt, which, to my daughter and her surprisingly nimble reflexes, looks like candy spread upon the ground.
Of course, I am lucky. Chance has provided me the means to be able to build a fence, to have parmesan cheese in the refrigerator, and to live in a neighborhood safe enough to walk. And though our nation has seen fit to elect a President who openly mocks the disabled, there has still never been a better time for my daughter to be born with her particular challenges.
And yet, the trials that face the parents of disabled children are real. One problem is social isolation. Kids tend to create social connections for their parents, through school and activities. Soon a social network blooms, connections are fostered, and parents become attached to the world, which, multiple studies show, is the key to happiness and long-term mental health.
Parents of intellectually disabled children don’t always get these advantages. Even in families with multiple siblings, where one of the children is able to generate such connections, the life of a parent of children with disabilities is more difficult. Social gatherings require difficult decisions. Some children don’t react well to interruptions in their routine or to strange places. For some, the noise of a large gathering is difficult to process from a sensory standpoint. Even children who are comfortable attending a gathering require constant supervision, meaning one parent is away from the adult group attending to the needs of their child and missing out on forming the connections that sustain adults. Often, the easier decision is for one parent to simply stay home, which creates distance and isolation.
Other kinds of comfort are also denied families of children with disabilities. My daughter loves music but attempting to bring her to a live performance is highly stressful since she often expresses her admiration by dancing in the aisles and sounding full-throated approval.
One might think that children with disabilities might be most welcome in houses of worship, but that is not always the case. All too often religious services require rapt attention and silence, something children with intellectual disabilities are unable to give.
The pressures and isolation that come from parenting a child with disabilities, which is, in many cases, a lifelong responsibility, are among the reasons parents of children with developmental disabilities have been shown to have higher rates of mental health needs than their peers whose children do not have disabilities or chronic conditions.
Public policy does not make it easier. Figuring out how to increase access to respite care for parents of children with disabilities would be a simple, low-cost way to help families but is low on any list of legislative priorities. In the meantime, it is up to us. Recently, my daughter expressed her approval of a religious service by humming, which is what she does when she is content. My wife apologized to the woman in front of her.
The woman waved away her apology. “I love to hear her enjoying the service. You never have to apologize for her,” she said. That simple act changed the whole day. You all have this power to make life just a little bit easier for parents of disabled children.
Please do so.
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