The Good, The Bad, The Honest Truth: The Early Years

kathy-roberson-with-katieMy name is Kathy Roberson. I’m on the Board of UCP, and also the mother of Katie, who attends UCP’s adult day program. I’ll be writing some blog posts over the next few months to talk a bit about my family’s journey, and some of what I’ve learned along the way. Feel free to respond if you have thoughts or questions you’d like to share.

My husband, Jody, and I had two children – Nathan, who was 6, and Laurel, who was 3 – when we decided we’d like to have more children, and that this time we wanted to go the route of adoption. We felt we could provide a loving home for a child who needed it … which led to an interest in a child labeled, in adoption lingo, “hard to place” … which eventually led to our getting a call from the agency about a one year old girl with the diagnoses of general developmental delays and mild cerebral palsy. Neither Jody nor I had a clue what those terms really meant, so we decided to meet with the neurodevelopmental pediatrician who had made those diagnoses. Dr. Evans went through her report line by line, answering our many questions as best she could, but what struck me most were her opening words: The first thing I want to say is that Katie is a really lovable little girl … and in that one simple sentence conveyed the profound and enduring message, Katie is a little girl first, and a little girl with disabilities second.

Even with Dr. Evan’s thoughtful guidance, however, it was a scary leap to take. I can still remember the day we brought Katie home. I buckled her in her car seat between Nathan and Laurel, and as we pulled away from the curb, I could feel a wave of panic starting to build. Dr. Evans had also said she thought Katie would walk without aids, but couldn’t say for sure, and that she thought she’d be at the low end of normal, high end of mental retardation [the term used then], but again, couldn’t say for sure. What have we done? I thought. How will I be able to handle all this? And then Nathan turned to his new sister, kissed her on the cheek, and whispered, Welcome home, Katie, and his six year old wisdom reminded me again that first and foremost she was a child who needed a loving family, and that much we could do.

So home we went, optimistic and afraid, and learned what it means to parent a child with significant disabilities in the only way it’s possible to learn such a thing: By living it day after day after day.

In those early years, this is how Katie’s disabilities manifested themselves in our lives: it took a long time and a lot of effort for her to learn how to do things like walk and feed herself. Her speech was very limited – three-word sentences that were often difficult to understand. Every transition, even small ones like getting ready for bed, were difficult. She would have all-out temper tantrums multiple times throughout the day. At three, she started pulling her hair out in clumps until she was bald, and the only thing we could do to stop that behavior was to shave her head. She didn’t sleep through the night for years. Other children were often wary of her, and she was thrown out of a “blue ribbon” special needs school when she was eight years old because they couldn’t manage her behaviors.

I won’t lie. I was often overwhelmed – exhausted, angry, sad, you name it – trying to figure out how to meet Katie’s needs, along with everyone else’s. But what’s remarkable to me now is how despite that, what I mostly remember (and what Jody, Nathan, and Laurel mostly remember) about those years is that our home was filled with a lot of love and joy. Why? Because of Katie herself. Dr. Evans was right. From the time she was a baby, the words that have most often been used to describe Katie are not the disability labels, but rather loving, lovable, happy, and it is these traits, the very core of Katie’s being, that have always helped see our family through even the most difficult times.

Next post, parenting Katie as a young adult…

This post is part of a series that originally appeared on the Blossom Philadelphia (formerly United Cerebral Palsy of Philadelphia & Vicinity) website.

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