I haven’t put much stock in my kids looking picture-perfect. Sure, I can be as much of a sucker as the next person for a really cute outfit from time to time, but I struggle personally to not fall into the pressure of conventional beauty traps — especially gender ones — and had planned to raise kids who felt comfortable valuing beauty on the inside more than their clothes or their hair.
Some days, my daughter goes to school looking like a hot mess and I have to admit I’m proud of it. A striped pastel short-sleeved shirt, hot pink fleece pants, a painter’s cap and a bunch of ponytail elastics as bracelets. She is a site to behold, and I like that she’s figuring out her own style and learning what she likes. “How do I look?” she’ll ask with the total confidence of someone who expects only admiration and praise. Sometimes I reply with a phrase I borrow from a friend when it comes to these complicated outfits: “That’s a lot of look.” But most often, I tell her she looks great.
When it comes to my son, who has a developmental disability, I’ve paid even less attention, if that’s possible, to how he looks. His genetic syndrome, in addition to behavioral and medical challenges, also brings physical characteristics which are, shall we say, congenital anomolies. Some people would call them birth defects. Others would call them dysmorphic features. I wouldn’t. I think he’s beautiful just the way he is, of course. Because he personally doesn’t seem to care much about what he wears, it’s very easy in the hustle and bustle of everyday life — and let’s be honest, I’m chronically exhausted — to not pay attention to the details of the fit of his clothes, how overdue he is for a haircut or how fashionable his sneakers are.
But I’m re-thinking my position how much attention we should spend on appearance.
A month ago I found myself at a Tommy Hilfiger outlet buying the perfect skinny jeans (for those of us with failure-to-thrive kids, skinny jeans are a real gift!) and a beautiful plaid shirt that fit him well and looked super cool. Aviator glasses (which he proceeded to break in one day, but they were only $3) completed the look. Maybe it’s not your idea of style, but he looked significantly better than when he wears his washed out t-shirts and sweat pants.
Then a couple of weeks ago I was telling a colleague that I had signed up both kids for soccer. She asked if I had gotten my son a “proper” soccer uniform. “These kids don’t care,” I said. “They can just wear street clothes.” But with her urging and on reflection, I realized that there were a few kids who were wearing soccer clothes, and that my son had maybe even more a reason to have them than anyone. So to the sporting goods store we went.
Now I’m on a quest to find the perfect hairdresser — someone who isn’t just patient and kind toward him, but someone who loves cutting hair really well and will take on the challenge of finding a flattering style that works with his hair and his head shape, which is a little special, just like him.
It feels a little weird, all this concern with looks and being cool. As with so many things, being a parent of a child with special needs is making me do things, say things and think things that I never expected. Maybe inner beauty is more important that outer beauty. (Although I’m beginning to wonder if I just don’t appreciate outer beauty because it’s not a quality I possess.) But then again, why shouldn’t he get the chance to be beautiful both inside and out, too?
My personal opinon, my ” special and most beautiful ” girl had have some many opportunities combine with some many other things taking away from her, That she deserve to express her inner and outer beauty to society. So it’s my pleasure to make sure she look her best mostly of the days( because we all have a bad days) And you can see a big smile everytime she gets a compliment, it’s like …Yeah yeah yeah I know I look gorgeous. Lol
She surely is beautiful! Beautiful mama too!
Oh my gosh. You completely had me up until the point where you say you might not possess outer beauty. Cristin, you are one of the most beautiful people I know! I think it every time I see you. You are gorgeous and radiant. Don’t you ever forget it!
That’s nice of you to say. I wasn’t fishing for a compliment. I guess I just never see “beauty” as one of my gifts–funny how we have perceptions of ourselves and how we judge the world according to those beliefs too.
Your daughter sounds exactly like my daughter in the dressing department. I love it! As to Jeremy, I have always taken extra care to have him looking “good,” from my imagined perspective of the people he might be with. So, in his early days I made sure he looked cute and approachable to the adults in his life. Once he went to school, I paid attention to what the other kids were wearing. This was aided hugely by the fact that he inherited his cousins’ clothes, which were all good quality and relatively cool. Those days are coming to an end, since his cousins’ growth has slowed down; but for the moment I’m still living off their choice of clothes. I noticed that there were some new looking shirts in the last batch and asked my sister about it. She said her boys didn’t like the shirts she bought that had buttons at the neck; they preferred T-shirt style, or maybe slight v-neck. Well, I sure didn’t let Jeremy wear those button shirts! I have also avoided sweat pants as much as possible, except on weekends. That might be my own thing. For about 10 years now I have bought the same pair of pants from Lands End — “cargo pants” that have elasticized waists, right up to size 18! With a loose t-shirt over top he looks like any average kid. I highly recommend those pants for any boy needing elasticized waists.
Right now I’m agonizing over whether to buy a new pair of sneakers, or skateboard shoes, which are much wider and can accommodate his orthotics more easily. My 12-year-old daughter is adamant that skate board shoes are only worn by lazy and snarly teenagers, but I see a lot of kids wearing them. I have already consulted with an 11th grade student on the politics of skateboard shoes and what they represent! I do most of my personal shopping at our local second hand store (hence my daughter’s wonderful style!) and I’m adamant that no child of mine strut company logos (unless someone pay me for the advertising), so what I wear is not generally an issue for me. I just think this is one area Jeremy doesn’t need to stand out, especially in high school. I saw my friend’s son with Down Syndrome at high school the other day sporting a golf shirt tucked into his sweat pants. I know my friend has so much on her to do list that I don’t think I will ever share my particular approach to dressing with her. But since how we dress communicates something about who we are (and how similar or different we are from others), I do believe it’s an opportunity for connecting with others. And now back to my dilemma: skate board shoes or sneakers?
OK, we need links to some pics here, Diane! So glad you totally get me. And thanks for the LE cargo pants tip. My son is still so slim and cargos are often baggy, but I’ll check them out.
I was given a book by a Dr when Ashley was born:
A Parents Guide to Down Syndrome.
Some of the chapters are written by parents and after each chapter is a few pages of parent’s comments. There was one parent-authored chapter that burned into my soul. It was about making sure your children look nice. The author opined that we can’t do much about the genetic features our kids may have but we certainly make sure they look nice and that they deserve the dignity of being well groomed.
That’s all it took for me. From that day on I made it my mission she would always be well groomed and have good looking/fitting clothes. I still can shop for hours at the Salvation Army just to find a few articles of quality clothing. I will iron her cotton shirts and even make sure she has good looking sports socks. Although most of the time… she unravavels within moments.
It makes a huge difference, for me… and for her. Not that she even knows, but when she meets folks/kids, or is just out in the world, she is more approachable, looking pulled together. Socially speaking, having a good hair cut or sporting a cool Nike’ shirt, gives others something to organize a greeting around. “Hey Love that shirt!” And on occasion, when the sun is shining and the planets align… Ashley may even grumble “Thank you”. Then I get to spin that into … Yahoo, another social interaction! Gooo Ashley! (And Nike’)
Besides I have been permanently scarred by images of institutionalized adults in stained clothes that are out-of-date and poor-fitting. (Grew up in the 70’s during the de- institutionalization era when thousands of adults in MA poured into communities looking like they just arrived from some war-torn country. Actually for some, perhaps they had.)
Those images screamed… No one is being their dignity surrogate.
As far as outer beauty, I must tell you, the author of this blog has misled the readers who have never met her. To set the record straight, Cristin is physically beautiful, with her deep soulful eyes, perfect facial features, healthy skin and gorgeous mouth. She also has that serenity aura that makes one think… I am looking at true beauty that is oozing from the inside to the out. She is simply captivating and an impressive creature to behold with all her inside and outside stuff.
You nailed it–dignity. That’s what it’s about. I couldn’t put my finger on it but you did. Thanks! And as for the compliments…aw, shucks. I’ll just let them sink in. But again, I wasn’t pretty growing up, or at least I didn’t see “pretty” as my identity then, and I don’t now. But dignity, yes. There’s a difference.
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