KRWG

Take the Time to See, Not Just Look at Down Syndrome

Apr 4, 2017

Credit Richard Kadzis

Commentary: Look into her eyes, and you see unconditional love shining back. She has an extra chromosome, and that makes her special.

Callie Grace is my granddaughter, and she was born with Down syndrome nearly three years ago, with 47 instead of 46 chromosomes; otherwise known as Trisomy 21.

Down syndrome is a disability. It slows cognitive abilities, reduces physical growth, limits motor skills and coordination, challenges speech, and is often accompanied by heart, respiratory, hearing and other physical shortcomings. But it does not make anyone with Down syndrome any less human or feeling.

March was National Down Syndrome Awareness Month, a good time to shed light on this often misunderstood condition affecting the daily lives of countless families who are endlessly challenged to ensure their children are made part of mainstream society, not an exception to it.  

It was around this time when I finished reading the book, An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter’s Life.

Callie’s dad, my son, Kevin, gave the book to me with a hand-written note saying “while no two situations are exactly the same, there is significant overlap with my experience and the author’s.”

Paul Daugherty, a sports journalist, wrote the book about his daughter, Jillian, now a young adult.

Kevin’s note, taped to the inside of the front cover, ended with these words: “Thanks for putting me in a position to succeed.”

As a father, I was happy Kevin recognized my hard work parenting him to the point where he has a great career as a teacher inside a prestigious private school in Atlanta.

But after reading the book, I knew Kevin was also referring to our Callie.

Jillian’s dad, the writer, said it this way: “Expect. Don’t accept.”

The main focus, as with any child, should be on commitment to preparing a Down child to lead as productive and engaging life as humanly possible.

Limitations Disappear

“For us,” Daugherty wrote, “it was the difference between battling and settling, between daydreams and real ones. It is how we’ve helped Jillian become Jillian. Her limitations are obvious. What’s less apparent is how many of those limitations disappear when we expect better and more from her and from ourselves – and from everyone charged, however briefly, with Jillian’s progress. Jillian’s potential would not be tethered to anyone’s preconceptions.”

One of the most serious challenges Kevin and his wife Erin will face, like Paul Daugherty and his wife Kerry, is the tacit resistance of schools and other institutions to treat these kids differently from everyone else. Counteracting the unstated bias of wanting to separate them from normal kids and relationships will remain a lifelong pursuit and challenge.

I watch Callie’s older sister and brother, Anna Claire and Bradley, play with their younger sibling, and I see the innocence of children too young to know better embracing her within fun and games, much like Jillian’s older brother, Kelly, did in the book.

Callie is their peer, and hopefully there will be many more ahead in her life. We expect her in the mainstream. We accept nothing less.

I watch Erin and Kevin taking Callie to different therapists, practicing early intervention, to proactively improve her speech and hearing, even her motor skills, concentrating on living in the moment so that the next one might be better than those before. 

Paul and Kerry Daugherty did the same. “Kerry and I had no desire to discover what Jillian wouldn’t do. Not that first day, or any day thereafter. We didn’t want anyone defining Jillian. We would leave that to her.”

Despite the volumes of expert advice and information on the topic, it turns out that there is no better authority on raising a Down syndrome child than the parents of that child. “Nine out of ten things people are going to tell you about Down syndrome are going to be wrong. So it’s up to you. If you choose to have the baby, you have to be the expert. Take leadership. People are going to follow your lead. If you’re really positive about it, others will be positive about it,” wrote Daugherty in quoting from Mitchell Zuckoff’s book, Choosing Naia: A Family’s Journey.

Influencing others to be positive and make constructive contributions to the development of a Down child’s life turns out to be one of the most important forms of advocacy a parent can take. “Jillian Daugherty’s life has been a happy conjoining of partners. Her story is about the power of a communal joining of hands and demonstrates that we were each put here to benefit the other…We’re only as good as the way we treat each other.”

Equal Treatment

It’s been half a century since we spoke of Down syndrome as a mental illness using harsh words like “retarded” to describe it. The 1950s ended a long time ago.

But, sometimes, morality needs to be legislated, especially to safeguard against the slow creep of latent institutional bias.

Equal treatment in the classroom for Down syndrome children became the letter of the law when Congress passed the Individuals with Disabilities Education Act (IDEA) in 1975.

“It was a monumental civil rights triumph for kids who wanted to be in typical classrooms, learning and socializing with their typical peers,” Daugherty related, likening the legislation to the Supreme Court ruling, Brown vs. the Board of Education, ending “separate but equal” education for black children.

Children with disabilities must receive what IDEA says is a “free and appropriate” education in the “least restrictive environment.” In addition, each student must receive an Individualized Education Plans (IEP), customized to meet specific needs.

That’s why it’s very encouraging to see Callie thriving in a pre-school environment with kids who don’t have Down syndrome, just going to school with and like everyone else five mornings a week. At this stage, the social aspect is most important. But an IEP is already in development for her.

The time will come soon to begin the lifelong learning process, when Callie starts adding, subtracting, reading and writing. The main objective will be for her to learn alongside all the other students, as a peer.

“Kids watch each other,” Daugherty noted in his memoir about Jillian. “How they behave, what they wear, what movies and music they like. Peer influence is more powerful than anything a parent can offer. If you want kids with disabilities to achieve beyond the norm, why would you put them in a segregated classroom, only with other kids with disabilities?”

Like Jillian, Callie will hopefully encounter several teachers who will embrace and truly educate her. And like Jillian, whose mom is a teacher, Callie’s parents are both teachers. Still, they know the time will come when forceful reminders of IDEA and the IEP will be needed. Keeping a teacher’s view of tangible, quantifiable measures of success as opposed to vague or generally worded goals will be an ongoing task requiring constant vigilance, as An Uncomplicated Life also illustrated.

Bonus Wiring

When it’s all said and done, it will indeed take a village to ensure a promising and productive future for Callie, for it is the combined caring effort of family, friends, providers, teachers, mentors and peers that will help shape a positive outcome.

In the end, after all of the battles have been won and struggles overcome, Kevin and Erin can only ask, as Paul Daugherty ended his book by saying, to take the time to see Callie, rather than simply look at her.

Consider the depth that a 47th chromosome brings, and you can imagine what the author means. “Number 47 contains a lot that makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness…Number 47 puts out the fires of ego and envy and vanity and guile. It filters anger. Thanks to 47, Jillian lives a life of joy, giving and receiving in equal time. Nothing defines her more. Number 47 isn’t a governor on her aspirations. It’s an extra storage tank for all her good stuff.”

Now, when I see the joy in your eyes and experience the feeling of love with no presumptions, I’ll know for sure, that’s why you’re exceptional, Callie Grace!

Richard Kadzis resides in Las Cruces and enjoyed a long career in journalism, public relations, corporate advocacy and economic development. He is a former New England correspondent for a NPR affiliate station.