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It turns out that April is Autism awareness month. I found out via pop up banner on an appliance dealer’s website. I never know about these special months or days because we live with autism everyday.
Keegan Joseph Sullivan was born thirty-ish minutes after his twin brother Jake skidded across a blue tarp at South Shore Hospital at 3:00am on April 2, 2017. Keegan was and is a happy, sweet baby. He started crawling around the time kids start to crawl. He started walking around 13 months. I remember the pressure about hitting these milestones. It always seemed like a competition with other parents. Parents love to act smug about little Susie who crawled at 12 weeks and walked at six months.
The first signs of trouble started around the language milestones. Keegan babbled and made sounds and said “Muh-muh” on schedule. Then “Muh-muh” disappeared one day, but I didn’t notice it at the time. The weeks slipped by until we carted the twins off for their one year checkup.
All of their physical markers were solid. We got to peek at the computer monitor and see their growth plotted along a curve in relation to the national average. Our skinny babies were always a little low on weight and height but made up for it in head circumference. Towards the end of the appointment, Dr. Lindsay said, “Keegan really should have a handful of words by now. I’m wondering if we should get him evaluated.” I remember my hackles going up and feeling defensive. Jake didn’t have any words yet either. I muttered something about kids developing on their own secret timeline that they don’t share with us. I didn’t ask any follow up questions because I was afraid of what “evaluated” meant. And since I’m a doctor, we ignored the suggestion.
We went back for the 18 month check up and Keeg still had zero new words. Jake had a handful. At 18 months, typically developing kids have 20 words. She pressed us to get him checked out again and this time we listened.
We got him an appointment with a Pediatric Neurologist from Mass General who keeps an office in a strip mall in Sandwich. The first available appointment was six months away. In preparation for the trip, I filled out the AQ questionnaire that gave us a score that put Keegan somewhere on the autism spectrum. I put little stock into it at the time. What can a multiple choice Scantron tell us about our kid? When the day came, we loaded both kids in the car and slogged our way to Cape Cod.
After sitting in the waiting room with other nervous and tired families, we were shuffled into a small exam room with an assortment of puzzles and toys. I felt like I was in the stands watching my kid compete in the Olympics. I was clenching my fists and sweating and hoping for a strong performance so we could forget all of this spectrum talk. Dr. B watched Keegan skip and hop and flap his arms for about six minutes. He avoided the toys. He covered his ears. He hid in the corner.
“We can safely assume that he’s on the autism spectrum,” She said bluntly. We need to get as many hours of services as we can find. ABA, speech, OT, PT, everything we can throw at him.”
My response was numbness. I didn’t ask any follow ups. I didn’t know what any of the words and acronyms meant. I was in a fog. On the car ride home, I allowed my thoughts to drift. Keeg’s mom had a more appropriate response and couldn’t understand mine.
The feelings have since hit me in unexpected waves, even years later. I’ll be making school lunches or cleaning up after the kids fall asleep and the next thing I know, I’m weeping into the carpet. It feels like grief and hopelessness.
A daily occurrence: A well meaning stranger who tries to chat with Keegan at a playground.
“Hey pal, what’s your name?”
No response from Keeg.
“Awww, he’s a shy one, huh, Dad?”
“He’s autistic. He doesn’t know any words yet.”
“Oh. I’m so sorry.” The well meaning stranger starts physically backing away from us.
“You’re so lucky to have twins. Built in playmates. They can just entertain each other for hours.”
I never have the heart to tell these people that the only time these kids interact is in the bathtub. The tub is like a water filled pack-n-play. They love it. Jake will tickle Keeg and share his dinosaurs and John Cena action figure. Outside of tub time, they don’t seem to notice each other.
It’s been heart-wrenching to parent Keeg. He turned five in April and still doesn’t have any words. When he’s pissed off, I go through the same checklist that I used when he was a baby and unable to talk. Hungry? Wet? Cold? Hot? Tired? Thirsty? We are on constant defense against elopement (a word his therapists use). If you aren’t gripping his hand or carrying him, he’ll bolt, sometimes directly into danger. He never stops moving.
I’ve heard people on documentaries say sentences like “I wouldn’t dream of trading my special little Bobby for a developmentally normal kid.” I don’t understand how people can say that. I love Keegan, but I don’t know if he’ll ever drive a car or live on his own. The parents that I see at drop off at Keegan’s special school all look slightly defeated and fully exhausted. I’m jealous of parents with regular asshole kids.
“So how’s he doing? Has he made any progress?” These are the questions I field constantly from well meaning friends and family who don’t know what else to ask. They are fair questions.
The behavior techs and speech professionals that he works with for 36 hours per week are delighted by Keegan. He can sit at a table for a 40 or 50 seconds (timed on a stopwatch), he’ll let you touch a toothbrush to his teeth for 1 second, and he’s 50% accurate using his Ipad powered word app to request what he needs. The other 50%, he’s just mashing the wrong buttons. These metrics are cause for celebration.
There are some things that we know he loves. He loves to jump on trampolines and shows incredible strength and body control in the air. He loves any body of water. Bathtub, pool, 45 degree ocean, ice cold river, muddy puddle. He likes to dip his fingertips into the water and then shove them in his mouth. If we show up at a playground after a recent rain, Jake will find any random kid to play with while Keegan licks every drop of moisture off the plastic playground equipment. I used to scold and redirect him hundreds of times during a trip to the playground, now I mostly let him do it while I chug strong iced coffee to keep me alive.
I worry about the young lad. I know there will be a time when he will face some mocking, because I was a kid once. How will I respond? I hope that I’ll sit with him and help him process the feelings for as long as it takes. Then maybe I’ll go find the other kid’s dad and make him eat his shoes.
I struggle with this job. Through no fault of his own, he wears me down. At the end of a long day or at a crowded playground you can catch me being snappy and grabby with him. I’ve never felt worse about myself than after yelling at my autistic kid while he covers his ears. I’m not feeling much of the joy that other parents talk about. We don’t have many play dates because of how stressful it is to chase him around other people’s homes. It’s isolating.
Here’s one of his favorites perches.
When I see this picture, I notice the sandpaper bags under my eyes. I look worn down and I am. But there’s a tenderness there too. I’ve got a weird connection with Keeg. He likes to sit up there and run his open palms over the stubble on my face. It satisfies some tactile input that he’s looking for. He’ll often babble into my ear or lick my head. I’ll wake up in the morning with my C4 and C5 vertebrae in pieces. I can’t look over my shoulder when backing out of the driveway, but I get a little satisfaction knowing that the neck pain comes from lugging my pal around. It makes me want to stay strong and fit in case Keeg likes to be up there when he’s twenty.
If the Keegan man found this essay when he learns to read some day, I’d want him to know that he is loved, safe, and that he belongs. He’ll always have a safe spot on our team.