Being Bald

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.

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.’

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).

4 thoughts on “Being Bald

  1. Nicole

    I think he is so adorable I could just squeeze him! And I kind of have a thing for bald guys. Tell Ethan he stands in the ranks of other cuties like Vin Diesel (my favorite!). You are such a great mom. My son has some special needs and is very quirky and I know that I am a fierce mama lion when it comes to his heart.

  2. Rie

    Ha, ha, baldness has its benefits! I don’t know how I missed this post. We get the stares everywhere we go too. It is very difficult for me. I don’t like feeling conspicuous. I don’t know when or if that will ever change. I’m still not used to it and can’t stand it. Honestly, people are just trying to figure out what’s “wrong” with Charlotte. With her prosthetics, it’s difficult to figure out. Obviously we would get the stares without the prosthetics too! More times than not, I have to explain to people that she is blind. When she starts using her cane more, the explaining will probably stop. Although, we’ll still get the stares!

  3. Rosemarie

    Janet, I love your blog. I was trying to remember if my boys asked any questions when we met Ethan a few years ago,I don’t think they did. Seems when boys are playing at cubs scouts, running around together all company is accepted (even older siblings). 🙂

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.