Turning frustration into an opportunity to spread knowledge and awareness— a story on advocating for Autism.
“Never worry about numbers. Help one person at a time, and start with the person nearest you.”
Mother teresa
Public is such a loose term. Standing on the sidewalk and speaking to a person walking by is considered talking publicly. However, some would interpret talking publicly as speaking in front of a gathered group of 25 people or more. It’s all relative.
I have not stood on a platform or podium and gazed into the eyes of a crowd to talk about autism or about Makai. I definitely would do it, without hesitation, if the opportunity would arise. But I have gazed deeply, with intent and fervor, in the eyes of individuals who needed me to drop Autism knowledge and awareness on them, shared my story as an autism mom, or talked about Makai’s journey with autism. Those are the gazes that I find more meaningful for me.
Let me share with you one of those encounters.
A FINE DAY FOR A HAIRCUT
When Makai was younger, we would take him to the barber for a haircut. He didn’t like going to the barber, but we had to desensitize him from the negative experience. Makai is sensitive to touch and sound so the entire experience of getting a haircut gave him high levels of anxiety. The barbershop we frequented was fully booked, so I called another barbershop to make an appointment for Makai, who was five-years-old at the time.
After the appointment was set, I let the receptionist know that Makai has autism. I asked her to advise the barber so he could be aware, and I would discuss the best way for him to give Makai a haircut upon our arrival. Before I could even finish what I had to say, she defiantly told me, “We don’t give haircuts to misbehaved kids,” and that Makai could not have his hair cut at their barbershop.
My blood pressure elevated to a dangerous level. I had to pause and ask myself if I really just heard what I thought I heard. My inner gangster was fighting to come out and throw some lyrical punches over the phone or head on over to that barbershop right that very moment and throw real ones! No joke! Jesus took the wheel on this one though. Through gritted teeth and my heart beating savagely, I calmly told her, “I will see you on Saturday at 11:30 a.m.” — and hung up the phone.
A TEACHABLE MOMENT
I shared this experience with my husband, Lamont, and my eldest, Rae. They too were livid, but Rae was the most upset about it and said we shouldn’t take Makai to that barbershop because they thought kids with autism were misbehaved. Rae was only nine-years-old at this time, and it truly hurt her that people had this perception about her brother.
I had to explain to her that because they think he is misbehaved due to his autism, is exactly the reason why Makai needs to still get a haircut there. We need to provide awareness, understanding and educate others on what autism is. We cannot allow our knee jerk reaction to fight, defend, and go gangster to overshadow our hope, shake our faith, and overcome our purpose of advocacy for Makai and others with autism. It was a teaching moment. I wanted Rae to look at the bigger picture and find purpose.
CALM, COOL, AND COLLECTED
On the day of Makai’s haircut appointment, I reminded Rae to stay calm and follow my lead. I let her know that Makai would need her positive and calm energy to get through his haircut. Rae has always worn her emotions visibly on her face. She can’t hide it no matter how hard she tries! Lamont is always calm. I don’t know how he does it. But it’s a good thing, because I often need his energy to balance mine.
I also had to remind myself to maintain my composure. As I appeared calm, cool, and collected, I was actually seething on the inside. I even debated on what song I should come out to— you know like in a UFC fight, right as the MMA fighter enters the arena. Songs and quotes often provide inspiration and put me in a zone. I had Schubert’s Ave Maria playing in my head as we walked into the barbershop. It was a safe choice— it was a good choice. It was either that or DMX’s Ruff Ryder’s Anthem!
NOT ALL HEROES WEAR CAPES
As soon as I checked in for our appointment, all eyes were on Makai. It appeared that the receptionist informed all the barbers that an unwanted and misbehaved child would be getting a haircut that day. I didn’t let that bother me and I just smiled as I caught their eyes. Before the barber cut Makai’s hair, I told him that Makai had autism, and I proceeded to give him a very simple and basic explanation of autism, emphasizing how it affects Makai when it came to getting his hair cut.
I compared Makai to Spiderman and his Spidey Senses. Spider Man has a heightened sense of danger that others do not feel. Makai has a heightened sense of touch and sound. He is more sensitive to those things than other kids would be. I described to the barber that if Makai is Spider Man, he needs to be Superman. He needs to be quick with the clippers and scissors— fast and short strokes. His hands need to be flying with a swiftness.
So, we worked together in unison. I did what I had to do to calm Makai— massaged his hands, provided reinforcement, played a video, or sang him a song. The barber followed my directions with ease and it was a positive experience for us all.
SHARING THAT SPACE OF AWARENESS
After the haircut I thanked the barber, praised him for his willingness to understand Makai and hoped that he would not discriminate giving haircuts to individuals with autism. He also thanked me. He said it was a good experience for him to cut Makai’s hair and learn about autism.
I also had a talk with the receptionist about our experience and told her we will be returning the following month for another haircut because it would be mutually beneficial. At this point, it seemed as though my words did not resonate with her. The barber’s gaze went from cold and unwelcoming, to warm and proud. However, the receptionist’s gaze was that of a deer in headlights! The look of shock and confusion.
As we walked out of the barbershop, Rae paused and ran back in. She was talking to the receptionist! She came out before I was able to follow her in. I asked her what happened. Rae said she wanted to have a talk with the receptionist about Makai and reiterate how he is not misbehaved. Wow! Seeing my nine-year-old baby girl advocating for her brother was priceless. I was a proud mom. It brought tears to my eyes. I was doing something right.
Ten minutes later, the receptionist from the barbershop called me. She wanted to apologize for her reference to kids with Autism being misbehaved, and said Rae really opened her eyes to her hurtful comment and actions. She also mentioned that she would be willing to change and open up to learning more about autism. Rae was already changing the world!
This was just one of many encounters I’ve had talking in public about autism. It’s one of my favorite anecdotes. We all learned so much from it.
More about Grace and Makai as they drop knowledge on Autism.
Read our in-depth interview with Grace about being an Autism Mom, and everything you need to know about children with autism.
Photos courtesy of Grace Siller
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