Watching Lilly Bloom

Lessons about tolerating the intolerant

Our granddaughter, 3-year-old Lilly, marvels at Philly, our mixed-breed dog she calls “Puppy,” the P’s in a popping sound in her own version of the English language. Lilly does not yet form sentences. She has Down syndrome.

“Woo, woo, woo!” she exclaims as Philly barks.

“Pa!” she shrieks, when my husband walks through the door.

Lilly lights up as various aunts, uncles, cousins and friends come into our bustling household, waving enthusiastically.

While we-and many of the people we meet along the way-enjoy the beautiful, outgoing child she is, sometimes, in public places, others fail to respond positively to her warm greetings and her outgoing personality.

At a recent dinner in a restaurant, Lilly turned and waved with enthusiasm to a party seated across from our table. The woman in the party, who was seated next to a girl about 10 years old, tugged the sleeve of the girl’s dress and told her to look away from Lilly.

The March of Dimes defines Down syndrome as a chromosomal disorder that involves a variety of characteristics. Affected people have varying degrees of mental retardation and facial features that may include slightly slanted eyes and a small mouth that may make the tongue appear larger than it is. Lilly has just mastered walking in the past few months. Her speech skills are delayed. She has, however, mastered several words through American Sign Language.

Right now, Lilly is unaware of hurtful reactions to her presence. She smiles and loves…but soon that may change. As Lilly becomes more aware of the actions of others, she will also become aware that there are people who are not tolerant of persons with disabilities.

Meredith Pool is an occupational therapist employed by the Richie McFarland Children’s Center in Stratham, New Hampshire. The center provides many services for families with children having varying disabilities. Lilly receives these services and has worked with Pool since she was 3 months old. As a frequent observer of children with disabilities, Pool offers sage advice for dealing with the intolerance of others. She attributes such behavior to a lack of education rather than blatant prejudice.

“I prefer to think of it as fear,” she explains. “Adults have a great fear of the unknown. And face it, if you don’t have a family member with Down syndrome or work in a field related to such disabilities, you probably don’t know a great deal about it.”

She continues by adding her own suggestions for grandparents who are confronted with a scenario like the one in the restaurant. (It took a healthy dose of patience for this nana to bite her tongue.)

“If a child [without disabilities] asks a question or appears curious, it sometimes is the perfect opening for educating the accompanying adult,” Pool says. “Speak in simple terms to the child. Tell her that Lilly may look a little different, but she still loves to play, be around her family and friends and do a lot of the same things other children do.”

It is Pool’s hope that in addressing the child this way, the adult will develop understanding as well. If encountering a child or adult who appears curious but only stares or sneaks glances, she offers even more tips.

“Approach the person in a friendly manner and say something like ‘Lilly really seems to like you. I think she’d like to say hello.’ This will hopefully open the door to a short conversation that may result in alleviating that fear of the unknown.”

Pool also suggests preparing ahead of time, at home. This involves both explaining others’ hurtful behavior to Lilly when she is old enough to comprehend, as well as having some standard-almost scripted-answers for family members who are questioned about Lilly. This can be a bit tricky.

“Be very careful never to berate the person who has asked a question or behaved offensively,” Pool advises. “Despite their poor behavior, meanness only breeds meanness, and that serves no purpose whatsoever. Explain to Lilly that not everyone knows people with Down syndrome, and that sometimes when people don’t know about something they become a little bit afraid.”

And as for those scripted answers, Pool offers a couple of basic options that work for many types of disabilities. For example, “Lilly really likes you. She has Down syndrome and doesn’t speak quite as clearly as some people do, so she may be a little hard to understand. But she understands you and loves it when people include her in the conversation.”

Sadly, there aren’t any scripted scenes to use when encountering a situation like ours in the restaurant. Politely turning away and distracting Lilly was the best thing we could have done, without appearing rude. Pool bolstered our confidence by assuring us we’d reacted appropriately, but it still makes me hurt for Lilly.

There are no perfect answers, but despite our differences, we all share the same basic human need: to love and to be loved in return.

And Lilly’s capacity for love is limitless!

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