Life With A Child With Down Syndrome Is 'Extra'

Recently, I was checking my email and saw a message with exciting personal news. I yelled out with enthusiasm. My youngest, who has Down syndrome, jumped up from his seat at the computer with screams of his own. He didn’t know what we were celebrating. But if there is celebrating in our house, he is in!

It isn’t just celebrating.

It’s extra celebrating.

Having a birthday? He is right there to light the candles and sing. At 5 am.

Christmas morning? I can hear his breathless enthusiasm as he punctuates every other word with, “I’m so excited” while trying to extricate his brother from his bed. Also at 5 a.m.

When my husband arrives home from a 24-hour shift at the fire station, my boy is cheering throughout the house, “Dad, is home! Mom, dad is home! ”

Heck. If I’ve just returned from the grocery store, he is not just jazzed about my arrival, he is forcefully rallying the troops (his older brother) to help empty the car. “G! Mom’s back!”

Life with a child with Down syndrome is extra.

This extra isn’t just in celebrating, which is a delightful manifestation. This also plays out in other ways. Starting with his chromosomes. There are even extra words typed in the sentence to express people-first language, “person with Down syndrome.”

Shooting hoops in the driveway can devolve into an aggressive contact sport with continuous goading, “Mom, come and get it. Come get the ball!” until my arms hurt from all the fouls. This aggressiveness is part of our story. Other parents have gentle children with Down syndrome, sometimes extra gentle.

Our three-step nightly routine of Bath/Bed/Book is extended to thirty-five steps, which include a thousand prompts and multiple reminders such as, “no, you need to sleep in your bed, not ours.”

Extra also looks like extra waiting to reach certain childhood milestones: crawling; walking; talking; going to the bathroom alone.

And friends often say this is just like typical kids. Typical strong-willed kids, for instance.

Yes. There are some typical aspects. But sometimes there aren’t. I imagine friends offer examples of sameness to build a bridge and create some sense of solidarity because the differences are so obvious. Oh, you have a strong-willed child? So, do I.

But so often I crave the verbal acknowledgment of the differences, the understanding that parenting my boy is unique. Perhaps with an empathic nod.

Herein lies a tension in my experience. Parenting a child with Down syndrome isn’t just living in the extra, it is also holding tension in paradoxes. My son is like typical kids and different than typical kids. Both are true. A paradox.

These paradoxes, with all their tension and complexity, often fuel my desire to bury any discussion about Down syndrome and simply get on with life. But, I also want to be known in all the complexities, in the differences, in all the extra, even when I can’t always articulate it very well.

I know that is a tall order.

It is all quite confusing for me because I see the Down Syndrome diagnosis all the time and I don’t see it at all. Another paradox. The former is because it’s quite obvious. He has the familiar look of Down Syndrome. The latter may be a mixture of some denial with a lot of “just going about our days.”

Having a child who falls outside of, or below, neurotypical standards certainly has its challenges. Some of these challenges are specific to DS and some are specific to parenting a human. There have been many ways in which I wanted to start this story, with anecdotes and examples but often it is hard to clearly explain what makes these moments unique to Down syndrome.

And this is all quite jumbled in my head.

It is also critical to note, the extra in parenting a child with Down syndrome is different for every single family. Similar to the autism spectrum, there is a Down syndrome spectrum that includes many variations and abilities in categories like cognitive functioning, speech development, muscle tone, health, and dual diagnoses.

Understanding this continuum is critical to understanding Down syndrome. We families are all in the same club, waving the DS flag, but our day-to-day experiences are very different. There is solidarity in the similarities and value in being aware of the differences. I have even changed the language here from “We” to “Me” because my experience is distinct from my husband’s.

My child with Down syndrome sits on a high-functioning end of the spectrum I mentioned above. For example, he has high muscle tone, is athletic with strong hand-eye coordination (from his mother), and had an early aptitude with a straw, which apparently was a thing.

He reads, often out loud to himself on his bed, usually “Diary of a Wimpy Kid.” But he is uninterested in retelling the details of the story. We don’t know if this is because of limited comprehension, difficulty in speech or articulation, or if he’s a 10-year-old boy who simply doesn’t want to talk about it.

So, we are in the club, we have the membership, but each member is distinct.

Back to extra.

When my husband and I embrace in a hug, and our youngest observes this, he can be heard uttering a variation of, “Oh we’re doing this?” as he drags a stool across the floor, then wiggles his way in between us. Sometimes, he wraps his arms around us as he calls to his brother, insisting he come down for a ReamTeam hug.

And if his mind is set on this course, he does not relent until all four Reams are standing in an embrace.

It is best just to comply. And, why wouldn’t we?

Well, sometimes we don’t want to continue our group hug because love and affection are great but so is space.

And sometimes, we also need space. (Connection and autonomy. Another paradox.) It is a dance between these two experiences. It feels shitty to rebuff a child with Down syndrome his affection. But if that affection has been offered twenty times already in one morning, it can feel suffocating.

Sometimes it is our boy who wants the space. When he was very little, walking but not speaking, he would simply leave. Quietly slip out the door and elope. (A new connotation of this word for me. He wasn’t getting married. He was leaving.) His mind was set on exploration and discovery. It wasn’t until a kind neighbor later knocked on our door that we would realize with horror C wasn’t in the house.

His eloping was extra.

My son is happy and content, a stereotype of Down syndrome. Except for the times when he isn’t.

This is usually when he is asked to shift into a “non-preferred activity.” I also don’t like to do “non-preferred” activities because they are, well, non-preferred. It’s in the name. So, in that way he is typical. However, his non-compliance (another great term we have learned on this journey that means he won’t do what we want him to do), is extra. It’s Olympic.

And we are the coaches forming and shaping his behavior so he will be healthy and clean.

And sometimes these coaches drink.

These vignettes offer both a glimpse into our experience while also illustrating the challenging nature of it all, the contradictions and complexities. In many ways, this is all just parenting. But it is extra parenting.

For some of us in this club, the extra itself is extra. The expected speech delays are more delayed or speech never comes. The delayed potty-training extends beyond the toddler years into early adolescence into puberty. Learning can also be slow, the pace extra slow, with extra patience required.

As I type, my boy is upstairs playing on his iPad. This is not a quiet activity. He is yelling at the screen, talking to the characters. When he is finished, he will come downstairs, transitioning to his next activity.

And with each transition, he will declare, “Mom. I love you.”

This sentence is definitive. Insistent. Important. This is a statement shared with me multiple times a day. Not said, declared.

“Mom. I love you.” All. day.

He doesn’t just love. He loves extra.