The Popsicle Man

May there be an oasis, a six star resort, waiting in the next life to receive the caretakers of special needs kids. For the parents giving an honest effort and for the teachers and paras and BTs and BCBAs and speech pros, specialists, PTs and OTs, Grandparents and partners and aunts and uncles.

Like the Ritz in Maui, it’s littered with refreshing pools made for soaking tired bones. Private cabanas, Umbrella drinks, quiet nooks to hide with a book. Bottomless baskets of hot salty tortilla chips with finely diced salsas. Unlimited spa treatments. TV’s pre-loaded with a library of shows and movies perfectly curated for you. My TV would be without “selling sunset” or “real housewives”. Maybe your TV would not have NFL games or PGA tour events. It’s 85 and sunny everyday.

It would be a place to connect and share stories and be handsomely rewarded for walking a path that most people don’t have to suffer down. The night skies are heavy with darkness, smeared with stars, and you never have trouble slipping off into the deepest dream soaked rest. The kind of rest where you might even feel better in the morning. You can set down the burden you’ve lugged all your life and let your shoulders fall away from your ears.

I think of Keegan’s current teacher, and hope that one day she is showered in riches for what she’s done for families like ours. She’d respond by saying “the time with the kids is the reward.” She’s been working with autistic kids for a couple of decades, she must have an army of people who could pen these words.

After summer break, I drove him to school on the first day and this is how he walked into the building.

If you’ve got special kids, I pray that you are gifted a person like this at some point in your journey. Knowing that you can leave your child in this kind of care, where they are safe, loved, and in an environment to learn new skills, gives us a breather so that we can replenish our video game health bars.

I’m so worn down at the end of a week, that I am looking for places to hide. I don’t know if I can do another shift of unbroken vigilance or potty training a seven year old or making 85 pieces of buttered white toast that I’ll later find smooshed between couch cushions. I don’t know if I have the jam for another evening of modeling the use of the ipad talker like a person having a psychotic break.

[I’m using a high pitched sing song voice here]

Are you trying to tell me something? Let’s find your words [the Ipad]!

[we engage in this game of charades on an endless loop to practice communicating together.]

You want a popsicle. Yaaaay. Thanks for telling me. Yaaaay.

Here’s a popsicle, but it’s still in the wrapperrrrr. Can you show me ‘OPEN’ (sign language)? Uh-uh, nice tryyyying, but that’s the sign for ‘more’. Show me open. Good trying, but that’s still the sign for more. Show me open, please. Ah, fuck it, here’s your popsicle, bud.

[4 minutes later]

Ohhhhh? You’d like another popsicle? [meanwhile in a secret location, the first popsicle melts into carpet]

[Present the ipad to the child. put on sing song again]

Show me popsicle. No, nice trying, but that’s the icon for going to work in a coal mine. How about popsicle? Yay. that’s showing me. Show me [the sign for] open. No that’s the sign for…actually I don’t know what that is. Show me open. Yay. Open.

Amidst the heartache, life is braided with moments of joy. It’s the hardest work to keep the door cracked enough to let them in. It’s easy to feel bad for ourselves and wish that Keegan was different. And to get stuck in that space. I wish he was able to speak. Able to have friends and playdates and participate in sports. Able to be left alone with a couple of toys or a sketchpad for thirty minutes so I can finish pan searing these GD chicken thighs without worrying about feces finger painting.

Here’s me keeping the door wedged open for joy to slip through. Look at this child.

He is beautiful. He is happy. He loves to hold hands. To be tickled and to wrestle. He likes to be picked up and hugged at 60 pounds. I suspect he will at 160. He will jump on a trampoline for four hours without a break. He loves to drag a soft blanket behind him and join you in the bed for a couple of rare quiet moments as the sun comes up. He likes a car ride. He loves to swim and he loves the beach. He’s mesmerized by the waves, but covers his ears on windy days. At the beach, he will run into the ocean in all of his clothes in January. You learn to pack a change of clothes and leave the car running with the heat on. You’re the only one with beach towels in your armpit in the winter. He doesn’t experience cold like the rest of us. There’s something about the sensation of being in water that soothes some invisible itch that remains a mystery to us.

Well meaning parents will tell you that it gets easier, as you fight your way to the end of each challenging day.

Sometimes I yearn for the days when he was 14 months old before we knew. In my best moments, I feel proud that he can put a jacket on and work a zipper. It’s magic watching him learn stuff.

I’ve been thinking about writing this post for a year.

To the caretakers this holiday season, may you find moments of peace.

May you rest, knowing that your work is cherished.