Over the weekend Jillian had a soccer game at our local school grounds. Ike was away on a camping trip so with the help of my mom we wrangled both kids that morning. Mom and I took turns taking Mark for wagon rides around the middle and elementary schools. As I pulled him along, listening to the games in the distance, I looked at the school and felt a pit in my stomach. He might go here someday and I don’t know what that will be like. Nearby a dad was kicking a soccer ball around with his little boy who looked to be about Mark’s age, and immediately I felt that familiar special needs parent pang of hurt and jealousy wishing I was kicking a ball around with my son, but this time I just thought, “please teach your little one to embrace mine”. And so I began writing this letter in my head…
To My Son’s Future Classmates’ Parents,
Inside your cells lies a nucleus and inside that nucleus is a pair of chromosomes made up of DNA, which consists of nucleotide pairs, G, A, T, and C. When these amino acids are put together they make up your DNA. (Stay with me, this gets better). If you look at the strand of DNA, you would see that there are different sequences and they are broken down into genes. A gene is a string of nucleotide base pairs that create specific proteins, which are involved in every part of your body, from chewing to blinking to breathing. When you and your children were formed your DNA went through a process of translation of these base pairs. It’s a very delicate and intricate process that makes you who you are, and sometimes there’s a mistranslation, which causes a mutation. In many cases mutations are benign, but in my son Mark’s case, something didn’t transpose correctly in an important spot on his SCN2a gene, which for him, causes autism and a number of other challenges, punctuating his life, and ours. This could have easily been you or your child.
Instead of soccer or baseball, Mark spends his time in therapy learning how to match colors, recognize his name and communicate his basic needs. Last week I watched his teacher spend 10 minutes just getting him to sit in a chair to do his work. That’s ten minutes spent on a very simple motion and request that should be easy, but for Mark it’s not. Everything Mark can currently do has taken him 20 times longer than it probably did for your children. He spends an hour in OT every week working on climbing up stairs, using his hands together and learning how to hold on when he’s being swung.
He’s very quiet, and the few words he knows he can’t easily say and he has to be incredibly motivated to use them, but please know he understands what you say. Please let your children know that if they ever have the opportunity and privilege to be in his class that even though he may not be able to talk, he can hear them. He recognizes more words than he can reproduce.
He may do different things that are foreign to your kids. Right now he screeches and growls because the sound and feeling of the vibration feeds his senses. When Mark was diagnosed we learned that he can’t regulate his central nervous system naturally like most of us can. He needs things like swinging motion, tight squeezes, and lots of movement to allow him to feel “normal”. Mark actually spends a lot of his free time sensory seeking or “stimming”. Sometimes he spins in a circle, becomes obsessed with corners of walls or runs without purpose. He’s just trying to feel good.
However, aside from the things Mark can’t do, and the odd things that he might do, I want you to know that despite these struggles, Mark is an amazing little boy. You’re probably thinking “of course she would say that he’s her kid”. And while this is true, I do absolutely adore him, I am in awe of how he overcomes so many challenges with so much joy.
Mark smiles all the time, even when most people wouldn’t. Every Wednesday I spend an hour in a play gym at an Occupational Therapist’s office and I watch him struggle to place the correct puzzle piece in the right hole. He gets upset, and wants to run as far as away as possible, but we push him through it and eventually he gets it, and my goodness, you should see him smile! If you ever have the pleasure to meet him, you will hear him giggle and I promise you it will be the best sound.
So my point in all of this is that our story could be yours. One wrong translation of your DNA could mean that you are the one trying to teach your three old that his hands can clap, or to use his voice to tell you what things he needs, you could be using your vacation time for medical appointments and spending every last penny (and pennies you don’t have) on medical and adaptive equipment. And you could be afraid, like me. Afraid that other kids won’t understand your child and that they would eat alone at lunch with perhaps an aide or their sibling, and no one would be their friend.
With the incidence of developmental disorders and autism increasing (the CDC currently reports that one of out of every 68 children will be diagnosed on the spectrum), there will be more kids like Mark. Children who have challenges, learn in different ways and have parents who worry like crazy about their well-being and how the world will treat them.
So my prayer is that in addition to taking time to teach your kids manners, how to be safe, and how to ride a bike, I hope that you also include how they could accept and welcome other children who are different and that being their friend is not a charitable act but a genuine interest in developing a friendship. Kids shouldn’t get awards for befriending children with special needs, the reward should be in the value of accepting, and loving their classmate openly and genuinely.
Be the change that is needed, show your kids how to love others without borders.