Have you ever wondered what it’s like to raise a child with Down Syndrome? A few years ago, I shared this post, written when Junior was only three. Ah, those were the days, when he was still little, and everything he did was funny or adorable. Now Junior is six, and in many ways still a toddler, but bigger, stronger, and heavier. His propensity for getting into trouble has spiked, and he keeps me on my toes all day long.

Just in the past 48 hours, Junior did the following:

• Snuck downstairs at 7am and helped himself to a tub of ice cream. When my husband came into the kitchen, Junior started eating as fast as he could.
• Accidentally smashed a glass dish on the kitchen floor while ‘helping’ to clear the dishwasher.
• Threw books into the middle of the aisle during Mass
• Then walked out of church in the middle of Mass
• Hid behind the furnace in a dark, tight spot where no adult can reach him — twice!
• Stuffed laundry down the air vent
• Tried to escape through a hole in the fence at the back of our yard – twice!
• Pushed a canister of crayons and all his books off a table, scattering them everywhere
• Dumped all the pieces of a board game onto the floor (now we’re missing pieces)
• Nearly flooded the bathroom by over-filling the sink with water and splashing all over the place
• And tried to flush the urine deflector from his potty down the toilet

I write this all down because I know one day I’ll read this post and laugh. But between that day and this is a long road of patience, patience, and more patience.

Raising a young child with Down Syndrome is tough. It’s being on high-alert from dawn ’till dusk, constantly keeping an eye on him or worrying, Who’s got him? Where is he? What’s he doing?

It’s tough staying on top of his health issues.

It’s tough because of toilet training. But let’s not talk about that.

It’s tough because parenting a child with Down Syndrome is so counter-intuitive. For most children with Down syndrome, any attention, the experts tell us, is rewarding and reinforcing, even negative attention. When Junior yanks his sister’s hair or throws his dinner onto the floor, my gut reaction is an emotional one: “NO! STOP! Don’t do that!!!!!!!!!” But the proper reaction is to respond calmly, without emotion. Yes, even as you fear for his safety as he bolts away from you and runs at full speed towards an elevator leading to the subway.

Sometimes that means purposefully ignoring bad behavior, sometimes it means redirecting or administering a time out. But always, the proper response means to keep my emotions in check. Because for Junior, getting an emotional rise out of anyone is highly rewarding.

To be calm and stoic all day long despite one near catastrophe after another. That’s tough. To take all things in stride with serenity and good humor. That’s really tough. But it’s an invaluable lesson I hope to learn sooner rather than later.

For all the trouble he makes, Junior remains endearing, funny, and affectionate. Even his siblings can’t stay mad at him for long. He’s just too sweet. His favorite word is, “No!”. But his second favorite is, “Hug?” Who can resist that? Junior is still the joy of our family.

This is an exhausting season in our lives, but this too shall pass. And in the meantime, I’m cherishing all the happy moments when my lovable mischief-maker isn’t wreaking havoc. Nowadays, that’s usually when he’s asleep.