Understanding Possibilities vs. Disabilities. My Incredible Son's Wish.

October is National Disability Employment Awareness Month (NDEAM). NDEAM is an annual campaign to raise awareness about disability employment issues and celebrate the contributions of America’s employees with disabilities. The 2018 NDEAM theme is “America’s Workforce: Empowering All.” 

In 1945, Congress decreed the first week in October each year as “National Employ the Physically Handicapped Week.” In 1962, the word “physically” was removed to acknowledge individuals with all types of disabilities. In 1988, Congress expanded the week to a month and changed the name to “National Disability Employment Awareness Month.”

My son's wish? For the world to advance the term disability by understanding what is possible versus what isn't.

I have had countless meetings over the years with teachers, counselors and principals. I use to come to these meetings prepared to defend my child. It is a vicious cycle to accuse and defend. So, I began agreeing with my son that many teachers and many people “don’t understand you”, however, I never agree with him when he states they don’t care. It is simply about understanding.

About a year ago I had one of those meetings. A teacher felt like Braden was tapping his pencil while she was talking on purpose. Another one felt like he was smirking at her. They both had gotten on him for his handwriting. Rather than defending I asked them how much they understood Tourette’s. They had told me like many schools they had, had students with TS but I asked them again if they knew how it worked in the brain. They both stated no and that they just thought it was associated with anxiety.

The next 30 minutes I educated them on the chemistry and the brain location of Tourette’s. I showed them Braden’s inventory of his own motor and verbal tics. I explained that children with Tourette’s have a difficult time with handwriting due to the motor tics. I also explained in 20 years overall in HR I had never seen anyone hired, promoted or fired based on their handwriting. While schools can accommodate with typing, Braden wishes to not have that accommodation unless the content isn't understood. Why? Because for him that is another observable moment for him to feel like he is different than his peers. He wants to feel supported and while he appreciates feeling unique he wants that uniqueness to be defined by his strengths not a medical condition.

I asked the teacher to act out what Braden did with his pen. As she tapped it I stood up and gently took her hand and placed it on her other arm and rubbed her back while showing her how to use her thumb to tap her other arm. I never saw so many notes taken in a session.

My point was you can’t stop a tic, but you can influence the brains threat or reward response by how you respond to what is possible. Touching my son with a quick tap on the shoulder to gently redirect him will tell him you are here to help. It will help quickly minimize the distraction. Most importantly it will release dopamine and a feeling of warmth and support. This will not stop the tic but will allow him to do it in a non-disruptive way. The happiness he will feel may trigger a new tic, but it will keep his mind open for learning and open to managing what he can do to help the class.

I ended the session asking them to play one of Braden’s favorite games to learn about what it feels like to have Tourette’s. They agreed.

The Happy Birthday game is based on Braden’s awareness of his most current verbal and motor tic which at the time was the sound “hee hee hee” and the motor tic was eye blinking and a mouth twitch which was initially thought of as an intentional smirk.

Braden's "Happy Birthday Game" to foster understanding goes like this:

You must sing Happy Birthday for 2 minutes. The word, “Happy” must be followed with the verbal tic “hee hee hee.” The word, Birthday must be followed with a motor tic, eye blinking or twitching of the mouth. The word, “You”, you must be followed by 8 claps, which is only reflective of Braden’s favorite number.   They were all hesitant, so I sang it first. Then I showed them my son’s response to the question, “who should learn this game?” In which Braden wrote “everyone” because "it helps when other people understand your life". The teachers teared up and not only committed to singing it but to telling Braden and to performing it in front of the class to talk about how everyone’s brain is different.

My son has become more self-aware and mindful at age 12 than most adults in the workplace, including me. He knows before a tic transpires he will get a "tickle" in his throat as a result of his body reacting to a social situation. This powerful "tickle" allows him to redirect and self-regulate. He has figured out the true purpose and power of diversity is not about being inclusive it is about being open. It is not about what can't be done due to a disability but what can be done based on the power of possibilities.

"Some tasks are just more difficult for some people in life. If we want to support each other we have to understand each other." - Braden

This month "empower all" by playing a game of understanding & appreciation for the "possibilities" in life. While my son wishes to become a "gamer", these are the types of games he wants to design. I couldn't be prouder and confident that his possibilities are endless. Start your day, your next business meeting, your next family dinner or parent-teacher conference by playing, Braden's Happy Birthday Game.