What It's Like Parenting A Child With An Invisible Disability

There was something about my oldest that just always seemed different. He had severe separation anxiety as a baby and toddler. He never really played with other children all that well, preferring his own imaginings to that of his peers. His meltdowns to the world around him were frequent and disastrous. Although he ate well initially, his diet slowly and surely became constricted to only a dozen or so items. We, first time parents, assumed that this was what kids were like. All kids.

It wasn’t until our twins were born two and a half years later that we finally began to think that something was up with our first kid. That was only the beginning of our journey. It took a full 6 years of our son’s life for us to accept and begin using the terminology associated with his disability: high functioning autism.

While every parenting journey is its own rollercoaster of ups and downs, parenting a child with an invisible disability is a unique ride set apart from its brethren. If you have ever wondered, this is what it’s like to parent one of these unique individuals:

Everything is a preset.

Going to run to the store? Better preset that. Want to surprise the kids with a slime making night at the local craft store? No surprises. Better preset or suffer the consequences. Thinking about rearranging the furniture? Preset. Vacation? Preset the shit out of every step of the trip. Every day of our lives is discussed and detailed with our son before ever occuring. Picture reminders decorate our house depicting daily routines and schedules. Everything is a “rule.” We preset and practice for what “could” happen at a given moment. And during those curve balls life likes to throw that can’t be preset? Oh shit.

His brothers get the short end of the stick.

Constantly. My patience wears thin at a certain point of untying and retying shoes that are “too loose” then “too tight” then “too loose!” to the point that my younger children experience me snapping at them when they’ve done no wrong or committed a minor transgression. When it’s just me and the three boys, we’ve all had to up and leave community gatherings mid-show more times than I care to count because of sensory overload. They’ve done no wrong, yet they too must leave the show with an overloaded brother struggling to maintain control. It sometimes hurts my heart at how quickly and easily they give up something they want or earned in deference to their brother’s needs. Despite it all, they love their brother with everything in their little hearts and would gladly follow him to the ends of the Earth.

There’s judgment from others during our toughest moments.

Because he can present very neurotypical for long stretches of time, people think his sudden sensory overload or panic attack or meltdown is a bratty kid with shitty parents. Yes, he can be bratty on occasion. Yes, I can be a shitty parent sometimes. But usually his meltdown is not his fault. He is fighting as hard as he can to maintain control of his emotions. He doesn’t like losing his shit in public any more than you like watching it go down, so we can do without the judgy eyes staring our way and whispers about my parenting, thanks. Keep in mind, while I’m helping him manage his emotions in a socially appropriate way, I am also managing my own emotions. Raw frustration and anger over the situation are frequent feelings that I need to overcome simultaneously to helping him manage his feelings. We are a work in progress and I am probably never going to be perfect, but know that I’m doing my best on that given day and so is he.

We celebrate the victories with fervor.

I might break into a cheer when my son suddenly proclaims that a hotdog on a broken bun is a “halfdog” and proceeds to happily eat it. Last time, he couldn’t eat the hot dog with a broken bun. Victory. You might overhear me tell him how proud I am that he attempted the ropes course despite the fact that he got to the first platform, melted down and had be escorted down by two park attendants. If he wants to try it again? You better believe I’m following him up there again even though I’m well aware that there is a high chance that it will end the same way. Last time, he couldn’t even put the harness on without panicking. Victory. Every single time he pushes his comfort zone a little further or figures out a new way to expand his schema of the world, we celebrate big.

No is his first response.

He has a hard time with change. Any change. All changes. If you ask him a question, his gut response is no. Will he change it two seconds later when he processes the question or request? Maybe. Maybe not. But his first response will be no. Please don’t be insulted. He’s not trying to be difficult. He’s trying to stay in control in a world that doesn’t function the way his brain operates. But you won’t see that part. You’ll just hear him say no.

To disclose or not to disclose, that is the question.

Now that my son is school age, I am in a constant struggle with myself over the decision to disclose his disability and to whom. Autism comes with a stigma and can be negatively perceived by those who don’t understand it. While I want the parents of my son’s peers to understand him, I’m so, so scared that doing so will result in social exclusion from playdates, birthday parties and friendships. He not only enjoys these things but he NEEDS to socialize regularly in order to practice his skills. Do I disclose his disability and risk his friendships? Do I not disclose and see if he can hang in there with his peers? What if he has a panic attack? What if I don’t disclose and they just think I’m a bad mom or he’s a bad kid? Won’t that hurt his friendships? These are the questions that I struggle with daily. So far, I take it one situation at a time and hope for the best while I pray for understanding and grace in others.

He loves with his whole heart.

As much as this boy tests my parenting abilities on a daily basis, his heart is big and he loves us with all of it. He regularly tells me how pretty my hair looks or how much he loves me. He goes out of his way to surprise his brothers with special creations of their favorite characters and he confers his dad to hero status.

He is beautiful, creative, funny and loving. He is rigid, specific, ritualistic and impatient. He is a boy with autism. My boy with autism. And I would choose this ride every single time if it means that I get to ride along with him.