“To The Hairdresser Who Changed How People Saw My Child With Special Needs: I should know your name. I can’t believe I don’t. I was so busy trying to corral my two children, pay for their haircuts, and maintain my sanity. I remembered to profusely thank you and I could have very well asked your name. In fact, I’m sure I did, but that important detail has faded. Unfortunately, what I do remember is people were staring at us prior to you calling my daughter, Lola, back!
My face was flushed, I recall. When Lola began to run in places she wasn’t supposed to, grabbed at items she shouldn’t have, and screamed at me when I tried to redirect her behavior, I thought the outing was a horrible idea. My mother attempted to help, but she was just as helpless as I was. The majority of our final interaction (even if it was just a few weeks ago) is now a distant memory, but one thing I will never forget is how lovely you were to my daughter.
I once read a story where the mother shared her fear there would be a day when people didn’t think her child with special needs was ‘cute’ anymore. As the child aged, the little nuances the kid had would no longer be adorable or socially acceptable. She voiced that, for some reason, strangers love babies and toddlers with special needs, but the cuteness factor clearly wears off with time. This struck a chord with me because Lola is now pushing 4 1/2 years old.
She’s a delightful little soul who has faced tough medical challenges in her short years on this earth. She has an extremely rare genetic condition called Bosch-Boonstra Schaaf Optic Atrophy Syndrome; which has caused cortical visual impairment, developmental delays, and epilepsy. This condition affects most every aspect of her life, but Lola has always been ridiculously charming and she sure is a beauty. Yet, I’m starting to understand the writer’s concern.
A tantrum by an almost 5-year-old is not really cute anymore. In fact, her occasional tantrum used to be a cue for others to say, ‘Don’t worry, it’s just the terrible twos.’ But, that has now turned into uncomfortable stares and awkward whispering. Because she is now becoming a little girl, a screaming fit or my inability to get her to stand up and walk, makes her look like a spoiled child who doesn’t listen.
I totally get it because I was once on the other side. Before I had a child with disabilities, I probably would have been curious as to why a kid couldn’t be easily calmed. Yet, now it’s our life. Now I wish I could go back and have more compassion. It’s not that I was ever rude; I was just naïve. I wish I could have offered an empathetic look that said, ‘I’m not looking at you. I see you.’
Lola has incredible hair. You even noted how gorgeous her hair was. She has had more haircuts than any other kid I know—without incident. So, it came as a huge surprise when she began to have a meltdown as you started to cut her hair. You and I tried everything. You took extreme caution because you didn’t want to upset her more. You were gentle in your actions and words. You tried to talk her through it, but she was angry. I gave her my phone and she just threw it. Then, thinking quickly, I grabbed your mirror because she loves mirrors, and she cried even harder.
Nothing was working. I was baffled by her unusual behavior, yet we were getting used to her fits of displeasure (no thanks to an anti-epileptic drug called Keppra). But I didn’t have it in me to explain the awful side effects we’ve all had to endure. I just wanted to get through that moment. And just when I was about to give up, you did something I didn’t see coming —you began to sing to her. I’m crying now thinking back to that moment. Finally, we began to see Lola relax.
A lot of people are genuinely curious about Lola, yet others will say the most asinine things like, ‘She doesn’t look like she has special needs.’ Really? That sure is comforting. ‘God only gives special kids to special people.’ That’s ridiculous in my opinion. There are awful stories in the news every day about parents doing horrific things to their kids with special needs.
I do feel pretty lucky she’s mine though. ‘I don’t know how you do it.’ What? Love my kid? Me either—it sure is hard. ‘Well, can’t she talk?’ No. As a matter of fact, she can’t right now. Why do you think she is screaming so loudly? It’s because she can’t voice her dismay. ‘She doesn’t look visually impaired.’ Why? Is it because she doesn’t use a white cane to guide her? I’m telling you, the comments are something I couldn’t make up.
Why can’t people see her as just a kid? Why does she have to be a spectacle? Most days I educate and other days I ignore the comments. I’ll admit, there are times I just want to go about our life and not explain a damn thing. But I almost always want to adamantly defend her because she has worked so hard to get to where she is today. In this journey, I’ve realized most people just don’t know any better. So you can understand why it came with great surprise to see how warm and gracious you were with Lola.
You’d say, ‘It’s all right, Lola,’ and then start singing a song. You’d glance to me for confirmation, and I’d just smile. The tears in my eyes, I believe, spoke it all. I was grateful for your presence. You discreetly mentioned that you have a daughter with Asperger Syndrome near the end of the haircut. You expressed your understanding of how I was feeling at the time.
You said you were able to cut your daughter’s hair at home, but she had similar meltdowns like the one you saw my daughter experience. You didn’t have to share all of this with me, but I was thankful you did. In fact, it meant a lot to me. Your act of kindness seeped into the hearts of the onlookers. What once were stares that said, ‘Get your kid together,’ now were looks of empathy instead of pity. Most were quick to say hello to Lola. Some even asked if she liked her haircut, and they jumped at the chance to get the door for us.
You see, compassion is a quality that not everyone possesses, yet the compassion you showed my family matched what others can do on a daily basis. Perhaps they’ll remember that Saturday afternoon the next time they see a toddler having a tantrum. They will, hopefully, remember the tunes you sung and the peace you imparted in my daughter. Hopefully, they’ll remember how simple it is to simply be nice.