It ranges from causual glances, double takes, stopping and standing, nudging a companion, teenagers that openly make jokes, little kids that point and stare, and grown adults who almost bump into things. There is not a trip to the store or the park or anywhere else for that matter that I can say there is not one or more ‘staring’ incident. My reactions vary from day to day, the severity of the infraction and how much I’ve already put up with that day. Of course, the younger the child, the more I can understand. Recently there were a few 7 or 8 year olds at a soccer field that were so persistant with their ‘sightseeing’ that I had to say, ‘really guys, it’s just a bald head.’
It’s inevitable. Unavoidable. Guaranteed. Anywhere I take Ethan, he is going to get stared at. We are going to get stared at. Yes, everywhere, all the time.
If you are used to how Ethan looks – good for you! If you don’t find it that shocking – great. If you don’t think it’s a big deal. Think again.
I suppose it’s not just his bald head, but the distinct look of Down syndrome. He also draws quite a bit of attention with his somewhat loud, and somewhat gruff speech. We have a trifecta, folks!
Several times I have taken the opportunity to approach a group of teenagers and tell them how much it sucks – really sucks – that they would make fun of him so openly, and that they are old enough to know better, and that they better hope that they or any of their friends never get sick and lose their hair. I tell them to think about it. I don’t know if they ever do, but it’s a message I need to send.
I have had more than one mother who told their children to ‘shut up’ and pull them away quickly when they ask ‘why does that boy have no hair?’ Way to go moms, nothing like passing on your ignorance. In all honestly I have heard two moms give sweet, truthful answers – “I don’t know, honey” and “I guess he just doesn’t”. Now, was that so hard?
It’s the adults that I just can’t get. Turning around multiple times and mentioning it to their husband or wife and believe it or not, once a mom pointed him out to her middle school son. I don’t know if people feel invisible in crowded places, but I can easily read ‘look at that kid over their’ on their lips, with their heads tilted towards another’s ear and a gesture in our direction.
I have shared words with a fair share of them. I want my other kids to know that it is ok to let people know that you see them. I have told people they can stop looking now, only to have them offended that I would address it. I have asked them if they know Ethan or did they want me to introduce them. No one has taken me up on that offer.
The converse side of this, is we have experienced our fair share of people being incredibly nice to our family. Once, Ethan was given a basketball jersey at a basketball game just because ‘he should have this’. In an incredibly long line at the Empire State Building we were instantly picked out and told that ‘kids like him don’t have to wait’ – which meant the rest of us didn’t either! My boys were taken directly to the front of the line at Times Square Toys R Us to ride the infamous ferris wheel when the line was approximately two hours long. People have handed him extra ride tickets at the fair and we have received free ice cream cones on one occassion because ‘those boys all deserve it’.
And they do. And baldness has it’s benefits.
Ethan had normal hair until he was 6. He then developed alopecia universalis. It is an autoimmune disorder that causes his body to mistake his hair for ‘enemy cells’. It affects slightly more people with Down syndrome than the general population. He has no eyebrows, eyelashes, or hair on his arms and legs – ‘universalis’ – universal. It does not affect his health in other way and for that we are grateful. Although there are some standard treatments that are questionably successful, Ethan has other health issues that make addressing it with any types of medications or therapies very undesirable. Ethan enjoys being bald (except for his daily sunscreening at my hands).