Yes, that’s my son. I’m so very sorry that he bit your child on the slide. Yes, that’s my son. I’m sorry that he’s melting down on the floor of your store. Yes, that’s my son. He often talks a lot about what he’s interested in but won’t wait for your input. Yes, that’s my son. I’m sorry that he’s disruptive, sometimes he screams when he’s frustrated instead of using his words.
These are the apologies and explanations that I’ve made over the years and that I will continue to make. When you have a child who is not neurotypical, every time you are out in the world, you have to be prepared to make apologies and offer explanations. It’s upsetting and exhausting.
When you are pregnant, you have ultrasounds and blood tests, looking for problems. But then you are told that you have a perfect baby and nothing prepares you for the reality. Your child is healthy (mostly) but struggles much more in this world than you would have hoped that he would.
My son was born with a perfect Apgar score. He did the breast crawl, nursed like a champ, and was a pretty awesome sleeper. Around 8 months old, we found out that he had a very rare genetic electrolyte condition that causes a sodium deficiency. I have the same disorder, but it is much more severe in boys than in girls. He was also late to crawl and late to walk, but so was I. Birth to three evaluated him and he “caught up” around the time he turned 2.
At age 3, we started to notice aggressive behaviors. He seemed to have tantrums that got worse rather than better. He always recovered quickly but would fall to the floor if his toy didn’t do what he wanted it to (he still does). He bit his hand when he was excited. However, his eye contact was great. His language was appropriate. He engaged in lots of pretend play and frequently was socially appropriate, until he wasn’t. His behaviors were often unpredictable and out of the blue.
Doctors said, “Oh he’s a boy, he’ll grow out of it.” No one seemed to think that he was autistic. Impulsive, surely, but social. At age 6 we are certain that he has ADHD and perhaps anxiety but are awaiting confirmation of an autism spectrum diagnosis. He has a lot of the traits but not all.
The most challenging thing for us is navigating a social world with a child who is frequently inappropriate. How do we explain the seemingly rude and impulsive, sensory seeking behaviors? He’s not being a brat. He simply doesn’t understand how he impacts others in the world.
Yet, he has incredible empathy. When he was a baby, he cried if I sang a sad song. He cannot handle scenes in movies where children are separated from their mothers or characters die. He doesn’t want his father to kill the ants on the patio because “they are my friends.” But he is not always able to walk up to a child on the playground and say, “Would you like to play with me?” Sometimes he does and plays appropriately but sometimes he walks up and shoves them and bites his hand and runs away. How do I explain that this big boy wants to play, he just doesn’t go about it in the right way?
My heart breaks for how he is perceived. I know that he is a deep thinker and a kind soul. I know that there are lots of people who love him, but they are mostly family and primarily grown ups. At school he is challenging and I feel for his paraprofessionals and the staff that have to anticipate his aggressive outbursts. I have no idea what his future will look like. I know that we need answers but they usually lead to more questions. Some days he behaves very appropriately and on others, he wakes up and seems totally unable to function.
Yes, that’s my son and I’m searching for answers on how to better help and support him. Yes, that’s my son; I’m sorry that he is difficult and has impacted you today. Yes, that’s my son, my love. Yes that’s my son.