Autism is a big word. It doesn’t mean one thing to all people, but rather many things to many people. Autism for one person could be different than autism for another.
My 11-year-old son is non-verbal and is working on a number of life skills that many children his age may have mastered by now. Autism for him is different than others and simply being aware of his autism doesn’t take that into account.
In our home, there are no lined-up shoes, objects spun on the floor, or persistent questions. There are no aversions to smells or loud noises. However, there are certain things unique to us because they are unique to Lucas. Just as my daughter and I leave our own personal imprint on the house. So does my son and, in many ways, autism is the reason for it.
His cups are everywhere
Lucas uses a straw when drinking. While there are many “sippy cup” straw options, the plastic ones just don’t cut it when he leaves them face-down on the floor. There’s nothing worse than the fear of a yellow wet spot on the carpet, even if it turns out to be apple juice.
Instead, I got him a number of sturdy “spill-proof” cups. These little secure-straw devices are his go-to for water or orange juice. When he’s done…or halfway done…or just starting, he will leave it somewhere face-down.
It doesn’t spill, but it disappears into the house. Soon, I’m finding cups in his bed, under his bed, under the couch, and in the bathroom. Do you know how many times I’ve accidentally washed them with the laundry? A lot. A lot of times.
I memorized all the Raffi concerts
Hello. Hi, boys and girls. Hello mums and dads. Grandmas and grandpas. (kid laughs ha-ha-ha-haaaa) And hello you. Two-three four…
I have seen Raffi’s concerts thousands of times. Thousands. Lucas not only plays them on repeat but repeats certain segments over and over. I know every part of every show including the audience reactions and the ad-lib jokes.
At one point in a song about going out for a walk with things in his shoe, a man in the crowd lets out a bellowing laugh. When I sing it to Lucas, I include the laugh, and it has become his favorite part. To this day, when that spot on the concert comes on, whether, through his TV or iPad, he comes to get me so I can see it too. I always oblige. That bellowing man is our spirit animal.
It’s always A little louder
My boy loves to screech and holler in delight. Whether he’s stimming on his iPad or watching his favorite show, there are claps and hoots galore. One time, a cable guy on the phone heard this background ruckus and asked if I had birds. I told him no. He asked again and pointed out the screams in the background. Again, I said no.
REALLY? ARE YOU SURE? I, UH, THINK I HEAR SOME BIRDS BACK THERE.
Oh, that? No. That’s my son. He has autism and he’s screaming while watching a show he likes.
Yeah. I won the awkward award that day.
The funny part? We don’t even hear it anymore. The TV is on and he’s yelling up a storm in the back. We might raise the volume. Every once in a while, if he starts ramping up to incredible decibels, I will go, “Lucas, buddy, relax.” Then he does, but for a minute.
While we could easily send him away into his room, most times we don’t. He’s part of us and, after all these years, it’s become the elevator music of our lives. Having him around is worth the extra noise.
There’s food on the floor
There are ghosts of meals past littered everywhere in my house. I tell people that my kid could make crumbs drinking a glass of water.
I sweep and dustbust every morning, afternoon, and evening with this kid. Still, I find pieces of waffle or pirate booty rejects strewn everywhere. Ever hold a rock-like piece of garbage in your hand and ask yourself, “When did I make them Ellio’s Pizza?”
You know why this happens? Because he grabs a bunch of food in his right hand and literally holds it against his shirt, then slowly takes pieces from there with his left and puts them in his mouth. It amazes me. The entire process takes twice as long and increases the messiness quotient by a ton. He does it with everything. Cake, pierogies, pizza – everything.
I’m not going to lie, though. It looks kind of fun. If I wasn’t paying for the clothes around here, I might do it too.
My mornings are brighter
Mornings should be the worst. When you’re a parent, they require an immediate list of chores and they’re all time-specific. From lunch-making to breakfast-serving to clothes prep, getting these kids out the door and into the education system is hard work.
For Lucas, though, the mornings are the happiest time of the day. Sure, they start much earlier than farmers, but when I see him, he’s overjoyed. He laughs, claps, and kisses my cheek. I feel like a celebrity every time I get him from his room.
My favorite thing is when he wraps his arms around my neck and leans all the way back. He starts laughing and I’ll nudge him under the chin with my nose. We’ve been doing it since he was little. Although I have to admit, the pull on my head reminds me that he’s getting bigger and I’m getting older.
Regardless of long-term neck damage, mornings like this make growing older worth it. I live for those smiles awaiting me.
I Feel like I Can Never Die
This is the hardest part of it all. When you have a boy like mine, you can’t fathom a world without you there to take care of him. Yet, you know it will happen one day.
I talk to other special needs parents about this and, out of everything I have found, it’s the most common statement among us. No matter how much money you have or how much family is there to help, the prospect of leaving them behind is terrifying.
It’s so terrifying that I rarely write about it even though it rattles around my brain most days. I don’t write about it because I have little to offer any readers on the subject. There’s no moral or tight little bow to wrap around a conclusion. There is no bow. There is no conclusion. There’s only inevitability.
All I can say is that it sucks and it eventually happens. If you are dealing with it, my heart goes out to you. I know how scary it is.
I never knew autism could be so great
Autism was presented as a boogeyman word when I was expecting my children. You were told to avoid it and look out for it. It was so bad in its presentation that when it came, I thought I had done something wrong.
I did nothing wrong. My kid wasn’t broken. In fact, he was perfect. Everything about him is who he is. As his dad, I taught him to love and to be kind, to the best of his ability. I made him wave to people even when I wasn’t sure if he could understand what it meant. I made him thank his sister for her good deeds with a pat on the arm, even when I wasn’t sure he could understand what it meant. And I showed him I loved him, even when I wasn’t sure he could understand what it meant.
Today, I am sure he can understand. And I’m confident that happened because we always treated him like he could. We always included him and we always loved him.
What came from that baby was a little boy who cares for his family. He knows we love him and he’s a joy to have in our lives. Autism might be a scary prospect for many parents, but when you have a kid like Lucas, that’s hard to see. Everyone should be lucky enough to know a boy like mine. There’s no one like him and I wouldn’t want to live a life without him in it.
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