Today is my son, Kai’s birthday. He is nine years old and developmentally he is between 1 1/2 and 2. He is amazing and bright and brilliant and beautiful and I may be very, very biased.
Upon reflecting on our long journey through the years of endless hours of therapies, doctor’s visits and hospital visits there are little events that come up in my mind that make me smile. Like the time they wanted to test Kai’s IQ (inconclusive, but we knew it would be). Kai refused to participate in most of the test. He just wasn’t interested and didn’t want to be bothered. And then, he got pissed off at the doctoral candidate administering it, who just wouldn’t leave him be. So he marched up to the table, angrily slapped his finger on the right answer and then stalked away because he was just done. Or the time he was sitting in a swing at speech therapy and the therapist would push him back and forth a certain number of times and then he would have to touch the word “more,” on an IPAD to get her to push again, a precursor to speech. Kai hated speech but loved the swing, so he compromised. Kai knows exactly what he likes and doesn’t like and it shows. And, eventually, he could say the word more. After many, many hours of work. After learning it on the IPAD, in sign language and pointing to a picture of the sign.
So many moments.
We had heard that ABA (Applied Behavioral Analysis) therapy might be good for Kai, so off we went to tour a facility. Let us just say that the director and I did not hit it off. I am only speaking about THIS facility and not about others or ABA in general. But I wouldn’t allow my son to attend sessions there for anything in the world. Aside from the instant dislike I felt at first meeting, the big thing this woman said that really rubbed me the wrong way was that we would begin sessions that would help Kai to change his behavior so that he would blend in with other kids. Kai has 9 different diagnoses but the big three are PVL (periventricular leukomalacia), Duplicate Chromosome 16 and Autism. He is what they call low functioning. Kai is constantly on the move, tapping, bapping, twirling, rocking, throat punching (just himself, no one else), clapping, spinning and more. He makes loud noises and joyful sounds. When you enter a room, you know that Kai is there. He is beginning to talk but is still what is called emergent in this area. So he gets what he wants by a few words but more by gestures, leading you to what he wants, moving your hands.
Can you imagine if my son blended in to a room full of other kids? Can you imagine not being able to see that Kai might need special attention because you couldn’t tell that he was different? Maybe if the director had asked me if this was a goal in our family, I wouldn’t have been so bugged. But she seemed to assume that we would WANT Kai to blend in, as if it wasn’t OK that he was different.
Not only is it OK that he doesn’t blend in, I truly believe that my son was BORN TO STAND OUT. That his mission in life is to spread joy with every sweet smile, every song he sings with great enthusiasm, if not clear words. Kai is an educator, although he is not aware of it. He teaches people how to open their minds and broaden their horizons. To move past feeling uncomfortable and adjust to the concept that not everyone is the same and that this is more than OK.
Kai has made so many strides over the years. He has worked so hard to be able to do the things that he is capable of doing. And we are so proud.
So to my son, on this, your ninth birthday, know that we could not be more proud of who you are. You keep being you. Everyone else will figure it out.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!