Tuesday, September 27, 2011

Living Life with a Double Dose of Special (from Bringing the Sunshine)

Today is the continuation of a post swap with Bringing the Sunshine that started last Thursday with my post 97 percent about the false statistics that shaped my pregnancy.

If you recall, or, you know, if you don't religiously check my website for updates (shame on you!), Andi is the mother of  an 8-year-old girl with cerebral palsy and an 18-month-old with Down syndrome. Today she is writing about the major differences between two disability groups that many lump together as a single "special needs" community. This post gave me goosebumps and I hope it affects you too.




cerebral palsy, Down syndrome, disability, children


Ten years ago, I was in an executive mentoring program with a large company, living in the suburbs of an up-and-coming city. My husband and I had already suffered a first-trimester miscarriage and a midterm stillbirth, but we had hope that we would, before too much longer, be blessed with the family we wanted. In 2002, our daughter was born prematurely with cerebral palsy. In 2010, our son was born with Down syndrome.

You could say that our family turned out a little differently than we expected.

When Sarah Kate was born, the initial focus was to keep her alive and healthy. Things were touch-and-go in the beginning, as they are with most preemies, but she sailed through the NICU. Eventually, we would learn that she had spastic diplegia, a form of cerebral palsy that causes tightness in the lower extremities.

The early years were tough. Other children developed at a much more rapid pace, and I found that some people would always look through my daughter, rather than at her. Instead of learning to knit or sew, I studied therapy and treatment options. It took a while, but eventually I grew accustomed to living in Bizarro World — that parallel universe that exists for those of us who have children with disabilities.

Although Sarah Kate still isn't completely typical, the gaps in development between her and her peers eventually began to narrow — a little. She is an intelligent, happy, and outgoing child who makes friends easily. Our focus was always to push her to reach the highest level of "normal" as possible, and we've been successful. She can't do everything that her peers can do, but she fits right in and often inspires others because of her positive outlook and unwavering tenacity.

We didn't know that Nathan would be born with Down syndrome. We opted out of prenatal testing, because if Sarah Kate's birth had taught us nothing else, it had taught us that you just can't prepare for everything. Nathan's name means "gift" and it was chosen before his birth because we believed him to be exactly that — a "surprise" given to us when we had long since settled into being a family of three.

Unlike many parents of babies with Down syndrome, I didn't go through a period of intense mourning; Sarah Kate's "specialness" had prepped me for Nathan. I already knew how to navigate the world of early intervention, IFSPs, and IEPs. I'd long since eulogized my dreams of perfectly typical children and being a garden-variety suburban soccer mom. I was well-versed in therapies, medical billing, spreadsheets, and the like. I knew that Nathan's circumstances wouldn't be the same as Sarah Kate's — his challenges would be different, and his long-term outlook for independence was less favorable — but I never doubted I could handle it. Same song, different verse, right?

Not exactly.

It didn't take long for me to learn that having a child with Down syndrome isn't like having a child with cerebral palsy. The first week I was home with him, I did some reading and discovered that of the parents who elect to undergo prenatal testing, 90% who receive a diagnosis of Down syndrome elect to abort. Several months later, I read that a non-invasive blood test to detect Down syndrome during the first trimester has been developed and will be available next year. I began to see the bigger picture — my son is one of a shrinking population, and it isn't because they're being cured. It's because they're being eliminated.

What I wasn't prepared for when I gave birth to a child with Down syndrome was being drafted into a fight for the lives of other children like my son. I wasn't prepared for the sudden and swift understanding of how cruel and intolerant the world can be, and how often that cruelty is cloaked in a mask of compassion and concern. I wasn't prepared to be judged for electing to love and care for a wonderful little boy who has been deemed by others as a "burden to society." I wasn't prepared to be labeled "overly sensitive" and "the PC police" because I objected to the widespread use of the r-word.

With Sarah Kate, I noticed the people who looked through her. They bothered me — a little — but for the most part I just placed them into the box of People I Won't Waste My Time On. But with Nathan, I care a lot more. I care because I know that if someone assumes Nathan is not only different, but also less, then they'll be less likely to stick up for him when bullies — or worse — unleash their heartless cruelty on him (Google "mentally disabled woman murdered" for a litany of true horror).

In most ways, our family is just like everyone else's. We laugh, we love, we fight, and we dream. We also don't waste a lot of time worrying about the small stuff that doesn't matter, but we do appreciate the small joys in life. Society would label our children as victims, suffering due to their disabilities, but we know better. True suffering for them — and for us, their parents — won't come from within their imperfect bodies. Suffering is created by a society that doesn't value them.

For that reason, we are open about our family — its challenges and joys — but we are also ever vigilant. We must be.

2 comments:

  1. "Although Sarah Kate still isn't completely typical, the gaps in development between her and her peers eventually began to narrow — a little. She is an intelligent, happy, and outgoing child who makes friends easily."- And that was possible by your nourishing through her development years. I wish more parents see their children the way you do. More power to you and Kate!

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  2. Thanks so much. We've done the best we can, but she's an extraordinary girl in her own right.

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