Editor’s note: This is a guest post by Tonia, a young woman who has cerebral palsy. Tonia and I met online, and we have had several conversations about disability and more specifically, disability in children. I do not have a disability, but two of my daughters do. Tonia’s insights are invaluable, and thanks to her I have had great conversations with my middle daughter who also has cerebral palsy. This post is not just about cerebral palsy, this applies to any disability.
As an adult with Cerebral Palsy, I often read the thoughts of nondisabled family members who are raising disabled children. Some families get it so very right, and I am beyond grateful for parents who listen, who love their children unequivocally for who they are at any given moment. But too often, I read things that are hurtful. Statements that could be emotionally devastating if the children ever read such things said about them.
It isn’t easy to fully immerse ourselves into an experience that we are not living, and it is a very rare opportunity indeed to know how it feels to be a disabled child. So, in this post, I will be revisiting my formative years, sharing memories of things that helped and things that hurt. These are memories that in retrospect are some of the most important aspects when someone is raising a disabled child.
THE IMPORTANCE OF SOCIALIZATION:
Just before starting nursery school at age 2
I’m two years old, at nursery school, and it’s first thing in the morning. Nothing has started and almost no one is here. No other kids. That’s good for me, because I have one objective: I have to get to the Big Bird jack-in-the-box toy, to play with it for a few minutes before school starts. All the other kids tower over me, because I crawl, and they walk. They move faster. If they get here before me, sometimes one of them plays with Big Bird. I don’t know any of those kids. I only know my sister, and I know Big Bird from Sesame Street on TV.
I crawl as fast as I can before any more of them get inside the class with me. I get to the Big Bird jack-in-the-box, which is kept on the lowest shelf – barely off the ground – so I can easily reach it.
It’s hard to play with, because I have to lift one hand off the floor to turn the lever, but I do it. I turn the crank as slowly as possible. I don’t like the popping noise Big Bird makes when he comes out. If I turn it slower, the pop is softer. I like knowing when it’s coming, and I like when it’s softer. It doesn’t make me jump. Now that the jack-in-the-box is open, I love the feeling of having Big Bird right here. I love looking at his plastic self. It’s like he came right out of TV to play with me. I love pushing the green lid down, and watching how Big Bird stays stuck to the inside cover.
The teacher sings the song for circle time, and I look up. The other kids came in, and it’s time to go be with them. I put Big Bird back on the shelf.
He is mine, because I love him the most and I play with him the most. I look around the circle for my sister. We can’t sit by each other because it’s school. The rules are: listen to the teacher, and play with kids we don’t know, not each other.
I miss her.
It’s interesting to me that among my earliest memories is one that demonstrates just how difficult it was for me to connect socially. I wouldn’t say I was unsocialized. I spent most of my life around adult family members. However, the only other child I knew and played with was my identical twin sister, who also has CP. We were the very best of friends and got along well because we each knew our place. As the older twin, she was the boss. As the younger twin, I did what she said. We helped each other out. I spoke for my twin from very early on, when her intense shyness persisted after mine fell away. She helped me reach things and brought me toys.
I was comfortable with my family as they all knew how to move around me. Other children were not only unfamiliar but unpredictable. In nursery school, I remember being fearful and struggling a lot. We played a lot of physical games that didn’t come naturally to me.
I know my parents and grandparents had a kind of tightrope walk to maintain when my sister and I were little, especially having to balance our medical fragility with us having the opportunity to play with other children. Having been born prematurely, I had been trached as an infant and both myself and my sister were susceptible to respiratory infections. We were hospitalized with pneumonia many times. I don’t fault my family at all for putting our health at the forefront, but I do wish there had been some way to connect with other children as a very little girl.
Today, we have technology at our disposal that my family didn’t have access to simply because it was 1983. Skype and FaceTime are ways for your little one to connect with other children without endangering their health. Even if those are not options for some reason, take an opportunity when we are playing to play with us. Model for us what it looks like to say hello to new friends. Practice introductions and asking if another child would like to play.
This way, perhaps, when we are around children, we won’t struggle knowing what to say or how to begin building a friendship.
LETTING GO OF “NORMAL”:
A pervasive theme in parenting blogs I read includes parents grieving over a diagnosis of disability in a baby. Perhaps it’s because I’ve grown up disabled, but I’m naturally aware of the possibility of someone having a disabled child. To me, the only thing guaranteed through pregnancy, birth and beyond is that parents have absolutely no idea what to expect. Nothing is guaranteed. Because I’ve had CP my whole life, this is normal to me. The idea that parents to be would not factor the possibility of disability into having babies is difficult for me to comprehend. Sometimes the words come across as if the parents were grieving their child’s existence, and those words hurt me, even if they are not about me, just as comments made around me hurt me when I was growing up.
I am three now.
My sister and I are getting dressed and my shirt won’t go over my head very easy. I don’t see because my head is stuck inside, but I hear the voice, laughing:
“You have a square head!”
“No,” I protest.
“You do! Look! The sides are all flat! I’ll just have to call you Square Head!”
Hands are on my head, feeling all the flat places that should be round like a circle. I know my shapes and heads aren’t square. I never knew my head was the wrong shape.
My head is wrong.
I feel bad inside.
I am five.
I’m living with more family, because I have lots of them that love me. They like taking pictures of my sister and me. We like being the same. Our clothes match, but not our bodies, because I have a walker and my sister doesn’t. When we get our pictures taken, our family likes us to be the same, too.
They like me to stand without my walker. They say it’s better that way. They are grown-ups, so I listen. I stand leaning against a wall, or hanging onto a chair or a cabinet, or my sister. Just as long as my walker is not in the picture. My walker makes me worse, so I stand far away from it.
I want to look my very best for the picture so I smile, hanging on very tight so I don’t fall.
My family never came right out and said they wanted “normal” kids. However, as a young child, I listened to the way my family spoke about me and my adaptive equipment (which is very much a part of me.) Decades later, I’m still self-conscious about my head (which is a bit square shaped, likely due to having been hospitalized and lying down for much of my first year of life.) And, though I am now in my thirties, pictures of me with my walker, crutches or wheelchair are rare finds. Many pictures are portrait-style and don’t even include my legs.
I would never encourage any parent to deny their feelings after the traumatic birth or unexpected diagnosis of their child. However, be mindful of how you express those feelings around your child. Keep them between yourself and another close family member or friend. Do your best to speak positively about us (including our adaptive equipment), even if you are sure we won’t remember because we’re young, or that we can’t understand what you’re saying.
We remember. We may not understand all your words and their implications in that moment but we remember how it made us feel. Comments about our differences will stick in our heads long after they leave yours.
I love my family.
I spent my preschool years eating amazing food around the dinner table with them. They taught my sister and I to play card games, dice games and Dominoes, and from about five years old on, we loved pairing off against them, playing long after we should have been in bed.
My sister and I stayed up late at night playing elaborate games of pretend, and we always feigned sleep when our parents came in with the flashlight to check on us.
My family members painted my nails and were always trying to make me laugh. They worked hard to provide a good life for my sister and me.
My family always fought for me, even when I didn’t see them doing it. I would not trade them for anything, and I know they did their best with what they knew at the time. As the late Dr. Maya Angelou said: “Do the best you can until you know better. Then when you know better, do better.”
My hope is that this blog post will allow you, as family members, to do just that.
Tonia is a 30-something woman passionate about bridging the gap between disabled adults and parents of disabled children, as well as respectful representation of disability in the media. She blogs at Tonia Says, and you can best reach her at Tonia Says on Facebook.