Cerebral Palsy, Our Son, Parenthood, Sebastian's Achievements, The things people say, Toronto

Hair Cuts and Strangers

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We always go to the same place to get Seb’s hair cut. It’s in our old hood on the east side of town. The ladies are always really nice. I was nervous the first time we went because I didn’t know how they’d react to Seb. They have different seats for kiddos to sit in, like in an airplane or on a pony. Seb can’t sit on his own so I knew he wouldn’t be able to sit in one of the fun chairs. So he sat on my lap. And we both wore fun capes. Although the stylist offered for me to hold him up in one of the fun seats, I knew we’d all be a lot happier if he sat on my lap. She asked a few questions and we had a nice chat. She shared a story about another child she knew with a disability, like a lot of folks do. It was his first hair cut at a salon so she took his photo and he got a certificate. It was a positive experience so I knew we’d be back.

Seb gets his hair cut twice, maybe three times a year. We like to let it grow long in the winter. He’s known for his wild and crazy hair at school and we all love it. But towards the end of the winter it starts to get too long. So long that when his hand goes up in a dystonic movement, it catches hold of his hair and a fist forms around it. If I’m not quick enough, he ends up with a handful of hair. Then we know it’s time for a hair cut. I always ask them not to cut it too short because I love his hair long, but they always do. Which is good really, even though I wish it didn’t need to be so.

Today was a perfect day to head over to the other side of town for the annual Spring hair cut. Sebastian’s on March Break from school this week, so we get to do fun stuff in the morning and afternoons, rather than stick to a routine of breakfast, school, home, lunch, nap, therapy, home, dinner, bath and bedtime. When we arrived there was a baby crying getting his first hair cut. Thankfully it didn’t alarm Seb too much and they were finished within minutes of our arrival.

Unfortunately the ladies from our previous visits were not working, so a new stylist set us up in the chair and then started with the usual questions, ‘Why can’t he sit up?’ ‘He has cerebral palsy.’ ‘Oh.’ Pity/sad face. Which I ignored and just smiled. I usually say something about how awesome he is and how it doesn’t matter that he has CP. Today, I just wanted to get his hair cut and get back out into the sunshine. She asked about where he goes to school (‘What do you do about school for him?’ Like, how can a kid like him go to school?) and whether he can talk. Whether he will ever talk. She doted on him and told him how cute he was. Well, maybe she told me how cute he was. I told her about the awesome INCLUSIVE school he goes to. He was doing a fabulous job sitting up in my lap. Holding his head up and pretty still, although he did like to try to see what she was doing. She was amazed at his ability to be so interested in what she was doing. Why do people think that because he can’t talk he’s not going to be interested in his surroundings?

A woman came in with her son and his friend as as they looked at the toys and other items in the shop, she cooed over Seb, ‘Look at that cute baby getting his hair cut’. I cringed,  wanting to tell her HE’S NOT A BABY. He’s almost 4. But I bit my tongue. I wanted to be able to come back here again and making a scene wouldn’t help. Ignoring her I told Sebastian what a big boy he was doing such a great job getting his hair cut. He smiled and tried to look up with his eyes to see his hair being cut. Cute.

The other stylist in the shop came over to chat. ‘What’s wrong with him,’ she asked. For those of you that think that is an acceptable way to approach a mother and her child, disability or not, IT’S NOT. I gritted my teeth and simply stated he had cerebral palsy. Hoping Seb was so interested in his hair cut that he did not hear her. Because nothing is WRONG with my son. You may wonder why I didn’t tell her that nothing is wrong with him. Well, I had just listened to her discuss her family problems a few minutes prior which included her sister really being her mother and a number of other V.C. Andrews type story lines. As a CP mom, I tend to pick and choose the lucky folks who get the good conversations about my son. I did not choose her.

Moments later I was happy with my decision as she decided to tell me a story about twin girls her sister (mom?) used to babysit and the younger one had muscular dystrophy. Because, either that is the same thing as cerebral palsy, or she didn’t hear me in the first place and picked something she was more familiar with. The conversation ended when she asked how much he comprehends. I looked her right in the eyes and said, ‘Everything.’ Perhaps I made my point after all. She then let him know how cute he was. Of course. Because kids with disabilities are really much cuter than typical kids. Or because people just don’t know what else to say. I’m partial, but I do believe Sebastian is cuter than your average kid. 🙂

I am an advocate for my child. I am happy to educate others about his cerebral palsy and talk about how awesome he is. But sometimes I wish I didn’t have to. Sometimes I wish I could just take Sebastian for a hair cut without having to explain to each new stylist why my son cannot sit on his own or why he doesn’t talk, but does understand everything you say. And that he’s not a baby. I want people to see him for the adorable, smart, inquisitive child he is. Will we go back? Yes. But next time, I will make sure I make an appointment with the first woman we had. Because she was the reason we went back in the first place.

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8 thoughts on “Hair Cuts and Strangers”

  1. I can’t imagine how frustrating it must be to have to constantly educate and explain to others but together you and Seb are educating, breaking down stereotypes and making a real difference in helping people to understand cerebral palsy. Maybe you can’t see the ripple but it’s there!

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    1. Thanks Kim, I appreciate your support and encouragement. Some days are easier than others to be the advocate. And I know every bit makes a difference, at least I hope it does!

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  2. I somehow missed this while I was traveling . I can’t imagine how hard it must be to constantly have to educate, advocate because you really shouldn’t have to. People should just stop and think or apologize if they don’t know how to ask. I am so grateful you take the time to write about your life because you educate me daily and I am a firm believer that if you tell just one person and give them insight it makes them stop and think and then they become someone who educates and advocates. You teach me every day.

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  3. Okay, so this is the second time I have had a problem trying to post something. My computer skills seem to be on the decline. I’ll try to rewrite what I wrote! First, I don’t know how I missed this post but I am sorry that you had this experience. I am however eternally grateful for your education and insight into your life. I can’t imagine how emotionally draining it must be to constantly have to decide whether to educate and advocate and smile through it when it is someone who doesn’t really deserve the emotionally energy you have to put out when you just wanted to go and get a haircut for your son (maybe not deserve as a word choice but there you go). Because really you shouldn’t have to. People should just have a stop think button or at the very least say I am sorry but is it okay if I ask this question. I am a firm believer however that when you educate just one person and it opens their eyes they pass that along (well I hope). Big hug

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