I remember the moment my son Sam was born. I remember his sweet face. His bright eyes. I remember my mom to my left and my husband to my right. I remember what they were wearing. I remember loving the smell of the sterile soap they used at the hospital. I remember staring at him and thinking how unbelievable and amazing it was that he was mine.
Sam is almost 3 now — and I still think that. I look at him and I’m grateful every day that he is mine.
He’s funny. So funny. After his bath, when I’m drying him off, he’ll stand up on the counter, stick his butt out and smack it — then he laughs. I have no idea where he learned this (really, I don’t), but it’s hysterical.
He’s also smart. So smart. I remember when he was younger, I’m not sure exactly what age, but it was young enough that when I gave him the puzzle to play with, I was really surprised to come back a few minutes later to see all the pieces in the right spot.
He’s loving. So loving. He runs to us for hugs. Not just when we come home or pick him up from school, but just randomly because. He grabs my face, looks me in the eye, smiles and gives me a big kiss. Each and every day.
This little boy is wonderful in every way. My husband and I always ask each other, “Do you think other parents love their kids as much as we love ours?” I know, of course they do, but still, it’s hard to imagine. And it’s hard to imagine this child you love so much having anything in their life that makes it harder for them. So, when we learned that Sam has autism, my thoughts immediately went to the world around him.
Sam did not “look” like what I thought autism was. He loves hugs, he makes good eye contact, he likes other kids, he doesn’t really have many sensory issues. I already knew him, so while it was a bit of a gut punch to hear someone say those words out loud, my first worries weren’t about him or his outcome. I was worried about everyone else, how he would be treated with this stigma attached to him.
For the first few months, I was obsessed. I read all the books, read all the blogs, the comments, Googled every last detail, attended conferences, asked a million questions. After all that, I remembered learning the important lesson I did while pregnant… that the internet is just a big rabbit hole. If you want to find something to confirm your beliefs or suspicions or fears, you will and most likely the outcome will leave you with a terminal condition on WebMd at 2 a.m. So, I stopped… and immediately felt much better.
My husband was a big part of that, too. One day, he just said “Enough.” “There’s nothing wrong with Sam.” That’s what he said, and not in the denial kind of way. The obvious kind of way. We feel like the luckiest people in the world to have him. He has some delays, some quirky things about him, maybe some other stuff that will come up — and there’s nothing “wrong” with any of it. It’s what makes him him. Even through my obsession (which my husband kindly calls diligence), I never once wished Sam were different. I wanted to help him be the best he could, but not different. We never felt sorry for ourselves, there was never any big crying moment. We have a pretty healthy sense of perspective. That has made a huge difference. We decided we’ll handle things as they come and not take life so seriously.
I know it’s not all rainbows and unicorns. I know the daily struggles for many families can be hard. Some days Sam is just like every other kid, but then there are other days, when I can see that he gets a bit lost in himself. When he paces back and forth. When he won’t respond to his name. When I remember that my nearly 3-year-old child still doesn’t put words together. Those days are harder.
When I read about yet another kid who was bullied, or one that sat and waited while no one came to their birthday party. That’s not just a problem with kids; I believe that’s a problem with what their parents teach them. When I hear how kids in public schools are falling behind, inundated with homework and overwhelmed. When I learn how the basis of Common Core is that students now must be able to not just answer the question, but explain exactly how they got the answer, which can be particularly hard for children with ASD. That is all of our problem, whether your child is a typical kid or not. When I see the “free” options for kids with ASD that so many parents rely on that are failing them. When I see how much is not covered by insurance. When they tell you that early intervention is crucial, but after eight months on a wait list, we still can’t get a behavioral therapist to help us. When I visit special preschools for him that aren’t bright and fun, with hallways lined in art work. They’re basically converted homes or office spaces with used, donated toys. When the “good” school that everyone is trying to get in basically tells you you will never get off the wait list. Those are the days that I worry for him. It shouldn’t be like that. Not for him. Not for any kid. Not for something that may affect as many as one in 68 children.
Sam is going to do wonderful things. I can see it. This little boy who loves music and dancing, loves painting, loves cars and trucks, peanut butter and jelly, bubble baths, books before bed, sidewalk chalk and cartoons. This little boy who is afraid of the big tractor from the movie “Cars,” won’t eat his veggies, pouts when it’s bedtime and loves gummy bears. He’s just like any other kid in those ways.
Sam goes to preschool and has great teachers. He has an awesome speech therapist who works with him on his level. He will hopefully soon be approved for a behavioral therapist to help as well. He has grandparents nearby, and he has my niece, his best friend, across the street to be his sidekick. He has a little sister, who at only 6 months, I can already tell will be a fun and loving companion. He has parents who are able to devote a significant amount of time and attention to making up games to help him speak and focus. He has my niece and nephew, my cousin’s daughter, my friends’ children, all of whom are around his age. I believe they’ll be his first friends and forever allies. He has an army of family and friends who love him tremendously. Sam will do just fine. He will reach his full potential, whatever that is. But not all kids have access to these things, and that is heartbreakingly unfair. Not to mention those great teachers and therapists who will help him reach his full potential, who go above and beyond what they need to…their salaries, in my opinion, don’t justify the work that they do.
I thought I knew about autism…until I had a child with autism. There is so much work to be done. I will fight for those things for him — because I’m his mom, because I love him, because he deserves better. And maybe that you can now say you know a child with ASD and that you know there are awesome kids not getting what they need and not being treated how they deserve to be treated — you’ll fight for them too.
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