What’s So Hard About That?

By Vicki Vila

Sometimes having a child with special needs means doing things the hard way. By that I mean the painstaking way.

When our son with Down syndrome was two and a half, which was right after he learned to walk, I stopped bringing the stroller when we left the house. Why was this hard, you ask? If you have to ask, you have never had the pleasure of looking after a crazed toddler. Or in my case, two crazed toddlers. My son has a twin sister, who does not have Down syndrome but does have a great propensity for throwing her body around in dangerous ways and running without caring what she runs into. I loved the time when I could strap both of them, now age 10, securely in their twin stroller. Even then, I knew our days with it were numbered. Oh, Inglesina Twin Swift, we hardly knew ye.

I wanted our son to have as much practice walking, holding hands and following directions as possible. And the only way to do this was to not bring the stroller. Plus, it was obviously good exercise for both twins. I got used to not having it, but sometimes I questioned my sanity. Like the time I had to bring all three kids to the shoe store to get measured for new shoes. Did I forget to mention the twins have a big sister who is three years their senior? At least she is cautious by nature and usually listened in public when she was little.

Right after I finished explaining how we all had to stay together, they ran in three different directions. Big sis oohed and ahhed over the rainbow light-up sneakers that looked as though a unicorn threw up on them; little sis got busy trying on all the display models and saying “I want THIS one!” And dear boy started taking down all the price stickers and playing with the high heels. (I’d bet he’d make a cute future drag queen.)

Another mother walked by, very empathetic woman, and said I was brave not to bring the stroller. More often than not, “brave” is a euphemism for “out of your mind.” She left not only the stroller but her actual kids at home. She said she makes two trips, one to measure their feet, and another, without them, to pick out the shoes. Smart lady.

Now, if we were still in New York City, which is where all the kids were born, I’d have to have the stroller with me, because traffic and subways and overly caffeinated New Yorkers do not mix well with misbehaving little leprechauns.

The lack of stroller is only one thing that we do the hard way. It finally dawned on me that when it comes to toddlers, there are no shortcuts to teaching and discipline, double that for a toddler with special needs. For instance, when it was time for our son to clean up a toy — which, due to his attention span would usually be roughly 1.2 minutes after he had pulled out said toy — he would rather run around the house licking everything than listen to an adult telling him what to do. Oh I tried cajoling and demonstrating and punishing and giving time outs and repeating and repeating the request to clean up and refocusing him. But about the only thing that had a shot at working was to make a song out of it. So here’s a look at me, a very disgruntled Mary Poppins, giving it my best shot:

(Hum to the tune of “Clean up the House,” from “Bear in the Big Blue House”):

“Clean up the blocks, clean up the blocks, ev-ree-bod-dee clean up the blocks. Let’s clean up the blocks, let’s clean up the BLOCKS, please would you JUST CLEAN UP THE BLOCKS. Let’s do it right now, let’s clean up the blocks, oh-my-good-ness clean UP those gosh-darn blocks.”

By this point my blood would be about to boil over from being so darn fake-cheery. But every once in a great while, the singing worked and my son would look at me like a switch just clicked in his brain. He smiled, and started cleaning up, his sisters usually pitching in to help if they weren’t busy making each other cry in frustration.

It’s hard enough to teach a typical toddler to clean up, but that much more so when your toddler has sensory issues to boot. Meaning that his desire to run around and lick and/or touch everything is due to a neurological need for input into his sensory system, a situation common in children with Down syndrome and low muscle tone. We worked hard on that when he was little, focusing attention on figuring out how to meet some of these needs with activities like heavy lifting, wearing a backpack, jumping on a trampoline or swinging on our swing. We also added a behavioral therapist to our repertoire, and we really liked her. I recommend thinking of a behavior therapist as a necessity for any toddler or preschooler with Down syndrome (assuming you can get it covered through insurance, which is often but not always possible).

She basically taught me that more things must be done the hard way. I told her I would have preferred the “magic wand” package, where you just say or do the exact right thing and children listen immediately. Wasn’t there something like that? Maybe in the bottom of her bag? No, no there wasn’t, I’m afraid.

It’s nice to know that some labor-intensive things will pay off — for instance, she suggested spending just 10 minutes a day with each child separately playing on the floor so they can get the attention they crave, which over time will build a better relationship and make discipline easier. I loved that suggestion and tried to do it as often as I could. (I STILL need to make a point to give each child their own special time, and some weeks I do a better job than others.)

But it would be great to have something to quickly extinguish some of the extremely undesirable repeat behaviors. For instance, are those of you without children aware that some little kids enjoy LICKING SHOES?? Especially dirty ones. And not just one time, but EVERY TIME THEY GET THE CHANCE! I’m talking the soles of the shoes, people, things that are dirtier than even your toilet seat is after chili night. These two twins would put the most disgusting things in their mouths as toddlers, especially our curious son.

Ah well, at least we had a bigger house after we moved to the suburbs from the city, and that meant more room to play with appropriate toys and not dig around in dirty corners, which would have been more abundant, and dirtier, had we stayed in New York. I miss the culture of the big city and its myriad pockets of creative weirdness, but I have to say this is a nice place to do things the hard way.