Mother wants her 6’2″ son with autism to be seen, included, and loved
Debbie Dubois’s story as told to Darolyn “Lyn” Jones
“Casper,” he whispered to me in a hushed, anxious tone. “Casper,” he repeated, louder and with more urgency.
“Grandma will be right back to play with you, I promise! You play my turn this time, okay?”
“C’mon, Joel, let’s head to the kitchen so you can tell me again about the computer you are working on. And thank you for being patient, buddy.”
Casper was the friendly ghost, a lovable ghost that sometimes still shows up on the TV Land Channel. But he was also a very lonely ghost. He didn’t fit in with other ghosts because he wasn’t interested in scaring people, so he left and wondered the world trying to find humans who weren’t scared of him. He wanted friends, to be included, and to be a living child again—to be typical. He found a family, a mother with two children who became his fast friends, a family who accepted him.
When my 98- year old father-in-law was living with us, Joel walked up to me and said, Mom, I feel invisible. Casper.
My heart sank. Care-taking my father-in-law and my son was challenging. Taking care of Joel was also challenging, rewarding yes, but still challenging. So, I said, “Okay, Joel, let’s come up with a code word so when you need a hug or my attention, I can stop and give that to you.” He looked down at me (he’s 6 foot 2, so he has to look down to look in my eyes, something he doesn’t do often) and said in a hushed tone, “Casper.”
When I think about that lonely, invisible ghost wanting to be included, seen, heard, I have to wonder if that’s why he chose this word. I don’t know, but what I do know is that he still uses it. Most folks who hear it, don’t get it and that’s okay. It’s our secret mother/son language. We know what it means.
I’m the mother of two girls in their 30’s, one with two children of her own, so I am also a grandmother. And I’m the mother of a 19-year old son, Joel. Joel wasn’t only an “oops” baby, but he is also my only boy and my only child who has autism. Like Casper, Joel is high functioning, but doesn’t fit in as well, even with other kids who have autism. He struggles to find acceptance.
Here’s what I want you know about my son. He’s been failed, even rejected over and over by public and parochial schools. Listen to some of the hurtful and ignorant excuses I have heard over the years:
“He’s just spoiled; there’s nothing wrong with him.”
“He’ll never read.”
“We can’t accept your child at our school because academically, he couldn’t survive.”
I opted to home school him because I don’t see my son’s gifts as a deficit. My mantra is “If something isn’t working, then change it.” And so, I did.
I remember when we received his first diagnosis, Asperger’s. And I remember thinking, Thank God, it’s not autism. But in what was one of many misdiagnoses and mistakes made by the medical community, it turned out that he did have autism.
Joel has anxiety and a heightened fear of doctors. Once put under anesthesia for a routine procedure, he didn’t receive enough and remembered and felt too much. You take that trauma and marry it with autism and it’s tricky.
Joel LOVES computers and all things Bill Gates. He can take apart and put back together any PC computer system with an XP platform. He knows the history, make, model, and year of every computer and system Gates developed. He even dressed up like Gates for Halloween. I mean, what kid does that? Mine does. My Joel. My funny boy who tells jokes like “What does the tornado say to the twister? Let’s go for a spin!”
Joel loves the Prism Project in Muncie. He even emceed the event, telling his jokes. He was a hit! I wish this kind of programming happened all year. Because it’s one of those few places he can go and feel included, and where I can see what he really can do. It’s a space where we both feel hope.
When your life becomes about advocating, taking your son to therapy appointments, to social groups, and constantly worrying about your son’s future, your ability to socialize is tough. Family is so much more supportive now than they used to be. They finally are starting to see it and get it. But I have had to leave my job to take care of him; old friends don’t or rarely call on me anymore. Kids his age are going to college, have girlfriends, jobs. He wants what they have, but can’t access it. I would like to have typical friendships too, but it’s not accessible to me anymore either.
But I have found a wonderful support system with another mother of a son with autism in Ohio. We connected years ago and can call each other, drop everything to be there for one another. It’s a special relationship. Like my son and I, she and I share a special language. Mothers get it.
Sometimes a total stranger does too. I remember once taking Joel to the Hobby Lobby to grab some supplies, and he was whining and becoming increasingly loud and agitated and he’s again, tall—a big kid. There were stares. I kept him on my arm and kept talking with him. A woman behind me in line came up to my opposite side and said, “I work with kids like your son. Mom, you’re doing a great job.” This total stranger gets what I’m going through. I got in my car and cried.
That one moment was special because when we are out, we are usually confronted with ugly, misunderstood stares. I remember when our neighbors called the cops because they thought my son was threatening my husband. My husband had taken him outside for a walk after he was particularly agitated because it’s an activity that calms him down. But his outbursts and size were interpreted as a threat.
I do a lot of talking about my son. I worry that because he looks typical, he will be judged or hurt. What I wish people knew is that I love my son fiercely and I want him to be independent, included, and loved. I want what any mother would want for her child.
And most importantly, I want more people to get it.