Being a family with a child on the autism spectrum can feel like being on a runaway rollercoaster. There are meltdowns. There are fears. There are abrupt jolts and hairpin turns. It gets stressful. It gets overwhelming. It gets scary when your child feels those things and while they look to you for help, you feel lost.
When our son was diagnosed, he was already 5 years old. We had so much catching up to do, I was terrified that if I didn’t move fast, learn whatever I could as quickly as possible, he would slip further through the cracks. There was also ADHD, and with it the lack of sleep, the impulsive mood swings. The motor skills issues. The digestive issues. The social development issues.
Then there’s our son, who skips down the streets, squealing happily to himself as we go run errands. There he unleashes a different kind of meltdown. His hawk eyes can read a name tag from feet away without so much as a blink, and he will greet a store security guard by name, then promise he’ll come back to see him soon. No matter how tough the person wearing the badge, he melts them down like ice cream in the summer sun.
He’s a boy who memorizes quotes from movies and TV shows and uses them at the perfect moment; a boy who can imitate anyone from family to game show hosts, and whose quick sense of humor is so damn funny, I’m sure he’ll have me and his dad using adult diapers sooner than we hoped. Years into this ride, I find myself having a lot of fun along with the jolts. My life as a writer and my husband’s as an animator allowed us many opportunities to create stories, but nothing comes close to the stories our son has helped create.
Now a tween, we asked him to help us craft a comic strip about our life. Ever the clever one, he saw the chance to use his voice and sense of humor in ways he couldn’t otherwise. He approves all the storylines, pitches new ones, and inspires most of them.
It was a long and ugly war, one with many battles. For seven years my mother went through a series of bouts with cancer, each leaving her a little less independent, a little weaker in body, but never in spirit.
The uterine cancer she got 11 years before kept at bay before it reappeared four years later, claiming one of her kidneys. The year after, a small lump in her breast required a lumpectomy and after some radiation, she was back on track, for a while at least.
Complications came a couple of years later in the form of intestinal blockages. During a hospital stay, they also found a small mass in the pelvic region. The uterine cancer was back and began to ravage her body, first taking part of her bowel, requiring a colostomy. She would live the rest of her days with an ostomy bag on her abdomen to collect her waste. It was tough for her to accept, but with time she mastered handling it and was back on track.
For the first time, chemo was her only option.
But it wasn’t enough. While the growths reduced, those that stayed weren’t going. In fact, they had strengthened to stage 4. The whole time, despite her weakness and frailty, she thought she had a chance.
Her name, Milagros, means miracles in Spanish — something she’d brag to anyone within earshot. She had been spared from death since her difficult birth. One of the nurses, impressed by mom’s survival, suggested to my grandmother she name her after the miraculous event.
Despite that claim to fame, she had a tough go at life. A single mom, she raised me and my sister on her own until she remarried and had my youngest sister. That second marriage was not easier, but she was always proud of her kids. This, she said, was her proudest accomplishment.
And then came my son and, with that, a new name for my mom: Grandma Bubbles. During a phone call with my mom, my son, then a toddler, tried to tell her he was watching a show with bubbles in it, but it merged into Grandma Bubbles. She loved it and to earn her new name, she made sure to stock up on bubble wands. She also had a knack for keeping plush toys that she would give names to and make funny voices for. There was often a show for my son, who was an eager audience.
Sunday visits became our ritual, where we stopped by, ate lunch and chatted. My son would whip out toys from the box she kept and got her out of her slump, if only for a moment. With time, it was tiring for her to even sit in a seat for too long. She’d still chat him up, but got tired quickly, and he would need to be quiet during most of our visits.
I thought my son’s ADHD would make the new conditions too restraining for him, but each week he’d ask, “We’re going to Grandma Bubbles on Sunday, right?”
During those visits he would come in quietly, greet her with a kiss and a hug, and pat her near the ostomy bag, so “She could feel better.” He would sit quietly in the living room nearby, popping in to check on her until it was time to go home. Each time he’d say, “Don’t worry, you’ll be better when spring comes.”
It was spring when she was admitted to the oncology ward.
The ward didn’t allow younger kids, but by Easter, Mom went to hospice. Mom now had three bags: the ostomy, the nephrostomy (to save her only kidney) and a tube to drain food from her digestive tract. The intestinal blockages had taken over the upper bowel, making it impossible to eat solids or too many liquids without them getting trapped between the growths.
I tried to figure out how to explain to him that she wasn’t getting much better. Through the years, my mother had asked me if I had prepared him about loss and death. I had, but hoped he wouldn’t have to bear witness at 8 years old.
For now, he seemed happy he was allowed to see her at the hospice, where he could have his Sunday visits again. Each weekend he’d notice more tubes, some to make the pain go away and soon came those to help her breathe.
“Poor Grandma Bubbles,” he’d say. I explained she could still hear him. She would open her eyes and mutter sometimes, and he’d tell her not to worry, she just needed to rest.
The week she became completely unresponsive, he was set to go, but I warned that there would be a big difference in Grandma Bubbles. She didn’t move much, but she was still alive for now. He said he was scared. I told him it was a tough visit and perfectly OK if he didn’t want to go. I figured he would stay home, but he thought for a moment then said, “I want to go, mommy. It’s Sunday.”
When we entered her room, a nurse was tending to her. He greeted the nurse and walked up to my mom’s bedside. The nurse and I exchanged a nervous glance. He reached over to mom’s hand, bowed his head and kissed it, like a prince in a fairy tale.
“Grandma Bubbles, I’m here.” He told her he loved her and rested his head on her chest. The nurse left, trying to hold it together. I swallowed as much air as I could stuff into my chest.
She passed away the next day.
Like many kids on the autism spectrum, my son doesn’t take too well to unexpected changes to his routine. The Sunday visits to grandma’s house were a big part of his life. He understood that things were changing and had been so empathetic in a situation that was the toughest of my life.
I thought about the wake. It had been scheduled for Sunday. My husband and I went back and forth. We had asked a lot of him during my mom’s illness and decline. He had shown maturity in the face of a situation that would daunt many, grown up or 8 years old. I didn’t want him to see my mom in a coffin, but it didn’t feel right keeping this from him. So, again, I asked him.
I explained what he would expect to see. He asked if she would ever talk or move again, where she’d go next and a bunch of deep questions I may never find the answer to, and I was honest about the fact. I started telling him he didn’t have to go, but before I could finish he said, “It’s Sunday, mommy.”
At the funeral home, he passed by everyone as they tried to greet him and made a beeline for the front, where my mom laid. She didn’t look in pain anymore. She looked like she was resting.
My mom was a casual dresser, but on this day she wore a soft blue dress embellished with delicate butterflies, one of her favorite themes. “Wow,” he said, resting his hand on her arm and marveling at her dress. “You look cute.”
As I wondered if he truly understood, he tells her, “I’m going to miss you so much,” and plants a kiss on her arm.
On this day he may have learned about loss and death, but I learned about the strength of my son’s character, and his poise and grace in the face of it.
On this day, I remembered how often mom said your kids are your greatest accomplishment, and took comfort that my son proved his Grandma Bubbles right.
Originally featured in The Mighty, December 15, 2017
This was going to be one of those days, I could tell. Any little bump or graze would make him screech. If a toy wouldn’t stand, he’d yell. My son was on pins and needles. I thought an active day would fix things. We’ll go to the playground, so he could climb and run it out. Since it was a hot day, he can enjoy the sprinklers too.
Getting him out of the house can be tough sometimes, but he went for it. Everything was going great; we came across a local festival. Lots of bouncy play areas and activities, another chance to expel all that energy. He waited patiently on each line for his turn at each activity. We made it to the playground, where he ran through the sprinklers and climbed and played to his heart’s content. I followed around, helping fill up his water gun, an excuse for me to dodge the heat and enjoy the sprinkler, too.
After that, we even went for frozen yogurt. With pop music pumping through the speakers, he couldn’t contain himself. He got up and began to boogie down, to the delight of the other customers and, I, knowing that I would’ve done the same thing if I wasn’t busy eating my fro yo, just sat and enjoyed seeing him so carefree after this morning’s edginess.
To cap things off, we needed to make a quick run to the drugstore. It would be a quick pass to get three essentials, and then we’d go home. It’s one of his favorite hangouts, so he was game. As promised, we got the items quickly and got in line to pay. Then he spotted a stuffed animal toy, this one larger than the one he already had at home.
After saying no to half a dozen other plush toys at a local toy shop on the way to the playground, he heard no one too many times. He started crying. Just as we were next on the cashier’s line, he stomped away, yelling all along the way to the back of the store. I waited for a minute, but it was clear he wasn’t coming back. I got out of the line to find him and called him, but no answer. I found him sitting with his arm in the health station cuff, trying to check his blood pressure and giving me the side eye. It was comic genius, but after a long day of running after him in the hot sun, I could feel my own pressure rising.
I told him if he wanted to get home quickly, he needed to calm down. He protested and got loud again. I told him I had to get back on the line, but he said he needed to sit. I asked him to sit on a beach chair nearby until he calmed down. Thankfully, the line was short, and I was up next. But his shrieks were so shrill, everyone stopped in their tracks. I ran to him. I hadn’t ever seen him have a meltdown like this. My skull was rattling. I told him we needed to leave right then, but he shrieked even louder because he didn’t want to leave.
At that moment, my mind raced, trying to find a way through the noise and chaos. The people gawking, my son unable to stop the ear-piercing shrieks, and I couldn’t get him to leave or to calm down. OK, what now?
I wanted so much to calm him down and not cause any more disruption. But all I got out of him was his confusion: He was angry, but he wanted us to pay for the items and get them home. But he was angry and couldn’t stop yelling. But he didn’t want to go home.
Even though it was a neurotypical reaction to not getting a toy that started this, it was that edginess he woke up with that was there now. It wasn’t about the toy anymore. Neither of us knew what it was about anymore. But I had to get us out of there.
I tugged at him to come, and he continued melting down. I ran as quickly as I could, parked the basket under the register and apologized. I explained he was having a meltdown and had to get him out.
I ran out with him, still screeching, out to the street. The whole way over, he stomped and yelled, begging me to get the basket and pay for the items. I could feel the huge knot in my chest rising into my throat. I couldn’t. Now we had new gawkers outside, and they only had half a story. I held both his wrists and swallowed hard. I looked into his eyes and told him my own fear. “If these people think you’re being hurt, they may call the police.”
His eyes widened. “Am I going to jail?”
“No, Baby,” I said. “But they’re going to ask lots of questions about me hurting you.”
He started yelling. “No! I love you!”
I hugged him hard and, this time, spoke even calmer. “I’m not trying to scare you. We’re going to be OK. But not everyone knows what to do when they see someone screaming like you are. Not even me.”
He looked at me, calmer, but still frowning. “But I’m so mad!” He started stomping and looking to see how I’d react. My mind fumbled for the proper response.
So I frowned back. “You’re doing it wrong. Stomp again. Harder!”
He looked at me, perplexed. He did a half-stomp.
“No!” I grabbed his hands. “Go ahead. Stomp! Stomp harder!”
I started stomping with him, and he followed suit, stomping up and down like we were on a trampoline. His frown began shaking out and a giggle erupted.
“Can we sit on the ledge? I’m tired.”
With that knot in my chest still doing a number on me, it was me who was torn. I wanted to get home already, but I was wiped out, too.
We made our way up the hill to the garden ledge of a senior home and I held him while we rested.
There I tried to get my bearings. I hoped he understood that telling him my fear wasn’t a guilt trip, but my trust that he was old enough to become aware of the way others could interpret things. That I’m as lost and scared as he is, but if we work together, we could work things out. And I wondered if I did the right thing.
I know a lot about electric hand dryers, more than I’ve got any business knowing. I know that the World Dryer Model A features a more comforting decibel than most dryers, despite its mediocre hand-drying capability. You’ll find this one in most fast-food joints and musty playground bathrooms.
I know that the Electric-Aire is small and also a quieter machine. This one is also so-so in the hand-drying department, and you’ll find these in smaller stores kind enough to be equipped with public restrooms.
Then there’s the Excel Dryer. It’s pretty loud and strong for its small size, but it doesn’t hold a candle to the ubiquitous and mighty Xlerator. It flaunts its brawn as a large, round-edged box with a sleek, built-in spout, sporting a tattoo that dares you to “Feel the Power.”
I know all this because it’s my son’s business. Not that he sells them or manufactures them. He did try to order an Xlerator online a few times, for the tidy sum of $500. He’s made it his business to know all there is to know about electric hand dryers, particularly the Xlerator. It’s the windmill to his Don Quixote. He has been terrified and fascinated by it since he was a toddler. He’s 7 now, and whenever we go somewhere new, he needs to know 1) If there’s a public bathroom and 2) What type of hand dryer it has, if any.
To know this, he must inspect the bathrooms. If the bathrooms carry a brand of hand dryer he’s not familiar with, he will stand outside the bathroom until someone washes their hands and uses it. He will tip toe to the door and see how it works, how it sounds. Only then will he resume any planned activity with peace of mind.
When our son was diagnosed with autism spectrum disorder and ADHD, he was already 5. Despite our concerns earlier on, it wasn’t until doctors noticed his repetitive round of questions and short attention span that they caught up to what we were already sensing.
When he was younger, he seemed like a very bright little boy, which he still is today. What we saw as unusual, they saw as cute quirks. Like the fact he needed to own a minimum of 13 tubes of toothpaste at a time. If we got down to 12, we’d need to go shopping. Thankfully, this only happened for about a year from age 3 to 4.
So as a parent, what do you do? Long before he was born, I made it my mission, like all parents, to be there and help him through life until he got the swing of things.
So I did the only thing I could do. I became Sancho Panza. Yes, I became my son’s sidekick.
For those who know that Sancho was humoring the Man of La Mancha so he can access the old fool’s gold, you may question the logic of my plan. But you see, just like Sancho, I’m mining for gold in my son’s reasoning, within reason.
My son is no fool. He is smart and imaginative and funny and adorable. He’s friendly and caring and quick, but his mind works differently. The trick is finding out what I can about how his unique reasoning works.
So when his toothpaste supply came down to 10 tubes, I’d call him in. “We’ve only got 10! What do we do?” I’d ask. Then we’d run to the drugstore, where he’d gallop like a man on an important mission, and I’d trot behind him, observing. The tubes of kids’ toothpastes had different characters on them. He’d run out of the one with Thomas the Tank Engine. There was a new one for girls with Disney princesses on them. I, like any good sidekick, would help keep track of what he needed. And when he wasn’t looking, I checked the expiration dates on them to make sure they could all get used in good time. Then he began phasing out on the mission, going from 13 tubes to only two. Now he doesn’t even notice when he’s running out.
In the two years since he was officially diagnosed, we’ve had to catch up quick to advocate for what he needs. With so much time to make up, I choose to let my son be my guide. And so far, it hasn’t failed me. Through our adventures, I’m able to better gauge some of his reasoning to his therapists, his teachers, our family and the rest of the world around us.
Though I haven’t cracked the code on his fascination with hand dryers, it’s helped me understand how he tackles his fears. When he’s outside the house, he runs like a bat out of hell at the sight of an Xlerator. When he goes home, he watches YouTube videos on how they’re installed, what makes them work, the variety of models. He prepares for another day.
And I follow dutifully by his side, hoping to see that day when he does conquer it or if not, to mine one more piece of gold from him so maybe together we can next time.
This summer we got closer to the dream. He agreed to go to a movie theater and sit through an entire film. There I discovered the holy grail of hand dryers. It’s sleek and efficient and futuristic. I ran to tell him about it. “You’ve got to try it,” I pleaded. “It’s not that loud and dries your hands in 12 seconds. It’s awesome!”
Intrigued, he ran to check it out, with his dad in tow. I paced the floor, eager to find out how it went as he skipped out, looking pretty pleased. “So, wasn’t it cool?” I gushed. “Yeah!” he said. “It’s a Dyson.” One mighty blow for the windmill …
Our new mission: Jeopardy contestants. He memorizes their names, their total wins and days on the game. When they win for long streaks, it’s nuclear devastation when they finally lose. I do my best to console him, and it takes a lot. “Don’t worry, they’ll be back,” I promise. “There’s a Tournament of Champions.” He sniffles and smiles.