Future Reflections Special Issue: Blind Children with Additional Disabilities
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by Marie Smith
From the Editor: Any child who is visibly different will probably be teased, ignored, or even bullied by peers at one time or another. In her blog Marie Smith of Alabama described how she reacted when her son was bullied due to his atypical appearance. Her blog post expanded into an article for Future Reflections on this important and often painful topic. You can visit Marie Smith's blog at <http://allaccesspasstojack.blogspot.com>.
This is Jack. He is four years old. To me, he is the most awesome, brave, hardworking, self-motivated person who has ever lived. But if you walked by Jack in the grocery store, you'd probably take a second glance--and not for the reasons I've just mentioned.
The night Jack was born I distinctly remember hearing the words "Apert syndrome" for the first time. Apert syndrome is a rare craniofacial disorder. It causes a number of issues that vary from one affected person to another. At least three characteristics are seen in every person with Apert syndrome. The first is early fusion of the sutures in the head. The sutures are supposed to be open at birth to allow room for the brain to grow. Another characteristic is called retruded midface; the middle part of the face grows at only one-third the rate of the rest of the face. The third trait is fusion of the fingers and toes.
Children with Apert syndrome require a series of surgeries. Cranial surgery is necessary to make room for the child's growing brain. Eventually most children with Apert syndrome also need surgery to correct breathing issues by pulling the middle part of the face forward. (Jack hasn't had this surgery yet, but he has severe obstructive sleep apnea and requires a device to help him breathe at night.) Still more surgeries are needed to separate the fingers and toes of children with Apert.
Jack has not followed a typical Apert's pattern. In a two-year period he needed thirteen operations, most of them to reduce or prevent pressure on his brain. Somewhere along the way he also developed optic nerve atrophy. He is legally blind in his right eye and has only light perception in the left eye.
At nearly five years old, Jack is in the beginning stages of acquiring speech. He also has fine and gross motor delays. He is socially delayed and does not read nonverbal cues well, probably because he doesn't see them. Nearly constantly he has a runny nose due to very small nasal passages and what his allergist calls "vasomotor rhinitis"--his nasal passages overreact to irritants.
As I said earlier, if you saw Jack in a grocery store, you would probably take a second glance. If you had children with you, they might point and say, "Mommy, that kid has a big head!" or "Daddy, look at his weird eyes!" Young children tend to let their thoughts spill out without any filter, using whatever words they know. I'm sure that one of these days it will be Jack's turn to embarrass me with some ill-placed remark, uttered innocently and entirely too loudly. He will be speaking his mind with whatever vocabulary he has.
My husband, David, and I do not attempt to shelter Jack from children's honest observations. We would rather that parents not try to hush their children and hurry them out of Jack's presence. We know that he has a big head and his left eye protrudes a bit. His fingers and toes look unusual, too. We think Jack is aware that he looks a bit different from other children, but we want him to know that he is still essentially the same.
We realize children are bound to make honest observations. We would like parents to acknowledge their comments calmly and say, "Yes, that boy looks a bit different, but he is a little boy who might like to play. How about we go say hi?" Someday when Jack is on the playground and a kid says, "You sure do have a big head," I hope he'll say, "Yep, so do you want to play ball?"
What's really important to us is that parents and children not avoid us. We're just regular folks. Everyone has differences. Jack's differences are more readily apparent than some, and that's okay.
We want children to treat Jack the way they would treat any other child. Like any other child, he responds according to his mood. If he's in a good mood when a child approaches him, he'll flash a beautiful smile. Now and then he won't seem to care that anyone is there. Sometimes he wants to play, and sometimes he prefers to be by himself.
To answer the questions children ask about Jack, we explain that he was a bit different when he was born. He did not have separate fingers or toes, but we got the doctor to separate them for him. Also, he had some problems with his head that made it grow big, but the doctor took care of those problems, too. Jack does not see very well, so he often uses his hands to touch people and things. He is still learning to talk.
It's a lot of information for a child to take in, so we always finish with the fact that Jack is a little boy who likes to run and play as much as they do. Often children only remember the last part of anything you tell them, and that's the most important part. Kids will notice Jack's differences on their own. They may need adults to help them see that he is like them. He very much is, and he loves to be around other kids.
A few months ago we spent several days surrounded by lots of people we didn't know. At times like that we encounter a great deal of curiosity from others. We met the full spectrum of reactions.
Some kids did not seem to register Jack's obvious differences. They played happily beside him and with him. Some kids asked a couple of questions and then resumed playing with Jack. A few kids refused to go anywhere near Jack, even after I tried to introduce them to each other.
Heartbreakingly, there were some kids who (there's just no other way to say this!) were mean and hateful. I tried to introduce Jack to them, but they would not listen to me. They called Jack a monster and told other kids to run away from him.
It was a shock to my system. I'm not going to lie; it hurt. It hurt real bad. The worst part was seeing how the mean kids influenced the others. I did not dare to react for fear that the pain inside me would burst out and injure those little people.
I wish I could believe this was an isolated incident. Sadly, I know there will be more to come in the months and years ahead. All kids get picked on for something from time to time, and Jack's unusual appearance will doubtless attract the attention of young bullies. If I'm around when it happens again, I will remind the child that he is being mean--if you call someone a monster, you know you are being mean!--and ask him to stop. Again I will try to introduce Jack. If that does not work, I will ask the bully to take me to his parent to discuss his behavior.
I wanted to believe that Jack did not hear what the kids were saying, but I'm sure he did. He asked to leave, although he'd been having fun. He started clinging to me. After that episode, we had a brief talk with him about how some people are mean. We tried to explain that meanness is a reflection on that person and what they are going through, not a reflection on Jack.
Why do some children play comfortably with Jack and why are some kids mean? What makes the difference? Is there inherent goodness in children, or do we need to be suspect of every second glance Jack receives?
After a lot of prayer, thought, and discussion with my other half, I believe parents make the difference. If parents are uncomfortable with Jack and are busy processing their own thoughts about him, they cannot help their children feel at ease. They will not encourage their children to play with him if they cannot get past his differences themselves.
Some people live their entire lives surrounded by people who look and act more or less like they do. When they encounter someone who speaks a different language, has a different culture, uses adaptive equipment, or has a craniofacial disorder, they absolutely don't know how to react. Sadly, lack of knowledge sometimes results in fear.
What can we do? How can we show these people that different is neither bad nor scary?
One thing we can do is to get out into the world. I truly believe that it helps for people to see Jack being the adorable little kid that he is.
To keep friends and family updated without overloading their email servers, I started a blog. I find it easy to write about how I think and feel. Fortunately, other people have found our life interesting, and we've spread a bit of awareness through my posts.
When we're out in public, I find I can connect with most kids, and these exchanges help me connect with the parents. However, that's not always a winning formula. In the live presence of other adults I tend to be rather shy. Out in the big wide world I have to take a deep breath, step up, and introduce myself and Jack a little more often. "Hi," I'll say when I meet you. "I'm Marie, and this is Jack."
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