A Day In the Life of My Son with Down Syndrome

I run a tight ship in this household of five. When we’re not traveling, our days are pretty consistent. I’m known as the “Routine Queen,” and Troy thrives on it.

So, what’s a typical day like for my 5-year-old with Down syndrome? Much like any other 5-year-old boys’. Check it out below:

Our day begins around 6:30 a.m. This is actually sleeping in for Troy and his typical twin brother, Hunter. The elimination of naps at the beginning of the school year ended our pre-5:00 a.m. wake-up calls.

Troy is a creature of habit, just like his mother. Every morning, without fail, he comes to me and says “Os and milk and a spoon too, please.” Because he has Childhood Apraxia of Speech novel phrases are often hard for Troy to speak intelligibly. Routine phrases, on the other hand, are as clear as day. “Os and milk and a spoon too, please” is one example of a VERY CLEAR phrase that Troy has mastered.

After breakfast we read for a bit, before getting dressed. Troy is working on mastering a few of Down Syndrome Education International’s books, as well as his favorite Orange County Learning Program books. This kid has always been a bookworm!

Related: Teaching Your Child with Down Syndrome to Read

By 9 a.m. we’re at private therapy for Physical and Occupational Therapy. All three of my kids think Troy’s weekly trip to ABC Therapy means playtime for everyone.

Troy’s twin brother and little sister play while Troy “works”

Troy is learning how to cut with scissors, write his name, jump with two feet together off a too-high bench, swing, and bicycle. This is all fun-and-games compared to learning to crawl and walk and dress himself. He used to cry during therapy. These days it’s cake.

Troy throwing an epic tantrum, because he wants to sit in the front “this time!”

The kids get in a quick lunch before the school bus arrives at 11:45 a.m. I wish I would have gotten pictures of Troy getting on the bus, because he absolutely LOVES IT!

Luckily, his preschool teacher uses a cool app called Class Dojo. It’s like Facebook for school. One of the teacher assistants takes a ton of pictures and uploads them with a few captions detailing what they did during the school day.

Related: 321 Let’s Count! Teaching Simple Math Skills to Your Child with Down Syndrome

On this particular day, Troy used the scale to decide which objects were heavier and work on one-to-one correspondence.

His teacher says he does particularly well with organized learning games. That’s probably because we play a lot of board games at home. They’re good for working on intelligibility, math skills, fine motor skills, and turn-taking.

One of Troy’s new favorite board games, Stack Up!

Because we have an upcoming trip, I re-scheduled a swim lesson for today. This made our day much more action packed than usual. I usually only schedule one big outing, other than school, each day.

Troy is absolutely obsessed with swim lessons. He’s gone from screaming and crying to get out to the pool, to screaming and crying to stay in. The struggle is real!

I have to admit though, swim lesson have been hard on me as of late. To watch my typical son, Troy’s twin, progress quickly across the pool to a semi-independent class, while Troy is still with 3-year-olds gets to me.

Troy is still on the far right end of the pool; his twin brother has moved 5 lanes in a year and a half. Troy hasn’t moved yet.

Some days I feel like Troy is not progressing at all. Swim days adds to this despair, but I know he loves it so much and is putting forth effort. He has made progress since he started. I often chant in my mind “remember the power of YET“!

Related: Enjoying the Quiet Before the Storm

After surviving the 5 o’clock witching hour and dinner with Daddy (who’s in medical residency and works really LONG days), we all relax and watch a bit of television. Troy asks for “Jake and the Neverland Pirates, Please.” He answers with a “Yo Ho, Let’s Go!” if I say yes.