How an NHL Coach Helped Me Through a Tough Special Needs Parenting Moment


A couple of weeks ago, my husband, Rob, and I were sitting around reading books with our kids, Lola and Sebastian. Sebastian is enthralled with books. He could read and reread the same book 50 times a day if we let him. He also likes puzzles, shape sorting, stacking blocks and other forms of play that require complex fine motors skills — fine motor skills Lola hasn’t quite mastered yet. On that Sunday, I sat and watched Lola try to like the book reading too. She soon moved on to the toy piggy bank. I watched as she struggled to get the fake coin in the slot. I could see the frustration as she tried repeatedly to get that darn coin to go in. She finally gave up and handed it to me to do it for her. I gently guided her hand to complete the task, but it was too late; she’d already lost interest.

This type of thing happens all of the time. I can see it unfolding right before my eyes. She notices. She notices she’s different from Sebastian. She can see her brother effortlessly complete a task, she tries to mimic his actions and when her skills fall short, she gets frustrated. Rightfully so. I try to intervene and help her, but she has my stubborn genes. She wants to figure it out on her own, but there are some things she just isn’t able to do yet. It doesn’t mean she won’t get it eventually but just not right now.

Who knows why (hormones or maybe there was a full moon), but I began to have a moment of sadness for Lola. I felt bad she wasn’t enjoying the toys that filled her room. It broke my heart to see her get so frustrated with her limitations. It made me loathe NR2F1 for making her life so much harder, so different. I thought how nice it’d be if we could just snuggle on the couch and watch a movie. Just a lazy Sunday spent lounging around together. I felt a tinge of jealousy when I thought of all the moms who were complaining about watching “Frozen” for the hundredth time. Jealousy is an emotion I learned to tuck away a long time ago because it does no good, but in that moment — I wanted to be that mom.

Maybe we could go to the movies? That thought left as quickly as it dawned on me. Or bowling? I just saw a friend’s 4-year-old who’d gone bowling. Then I had visions of chasing Lola down the lanes. That won’t work. All of these what ifs began to flood my mind. I don’t allow them in often, but when I do, they show up with a vengeance and quickly take over. Just as I began to feel myself suffocating with grief of what could have been, I thought back to a documentary series Rob and I watched a few weeks ago.

My husband is a hockey fan. More specifically, a Washington Capitals fan. It’s a long story of how a guy from Indiana fell in love with a hockey team in Washington D.C., but now, oddly enough, I’ve become a Capitals fan too. This year, the Caps hired a new coach, Barry Trotz. I knew Coach Trotz had a 17-year-old son, Nolan, who has Down Syndrome. I always find myself drawn to individuals who are immersed in this special community, so when I watched an EPIX Series about the Washington Capitals, I began to appreciate Coach Trotz even more. This clip will show you why.

We sort of plan our days around something he can do.”

This line.

We sort of plan our days around something he can do.”

This line was the reminder I needed in that moment.

Why was I trying to immerse Lola in a world she wasn’t enjoying? Why wasn’t I appreciating the unique qualities that make Lola who she is?

A close friend said it perfectly, “It’s like putting me in a room where everyone is doing trigonometry. Listen, I like a lot of things, but I’m not ever going to like trigonometry.”

Now I’m not saying Lola won’t ever appreciate puzzles, books (she loves to pretend read) or freaking bowling, but on that Sunday it just wasn’t her thing. And even if she does hate bowling or prefers coloring over puzzles — who cares? We all like different things. It’s what makes us individuals. With that, I moved on.

I began to think, “If I was Lola, what would I want to be doing?”

Two things came to mind: Swimming and jumping.

Her favorite swimming spot was closed, so I packed her in the car and off we went on our adventure. We started with jumping at Monkey Joe’s, and she definitely liked that!

Afterward we went to Meijer for boot shopping because I had this genius idea that we should go sledding. We ate Raisinets as we sang “The Wheels on the Bus” in the aisles. Sure, people stared, but thankfully I’m at the stage in parenting that I couldn’t care less.

My daughter beamed her chocolatey smile, and that’s all that mattered. She was happy.

Lola probably wouldn’t have picked the sledding for herself, but now I know. When you have a kid who is nonverbal, you sort of just have to go on trial and error. She didn’t seem to mind the sledding for the first couple of runs, but she quickly showed her discontent with this barbaric action of flying down hills on plastic in the freezing cold. Sorry, Lola. I do forget that you’re a Costa Rican-born babe. Maybe we’ll try sledding again next year.

Here’s what I’m learning not only as a mother but as a mother of a little girl with special needs — there will be plenty of ups and downs. Most days it never even dawns on me that Lola has special needs. She’s just our daughter. When people say, “I don’t know how you do it,” I usually laugh because it truly is funny to me. I parent Lola just as I parent Sebastian. I love Lola just as I love Sebastian. Lola has the ability to drive me crazy just like her brother can drive me crazy. She may need a little extra help and she may have a few extra appointments, but she’s still a little girl, first and foremost. Every now and then I’ll catch a glimpse of what she could be doing and my heart stings for a moment. She’s 4 years old now, which means the gap between her and her typically developing peers is more obvious. While I always celebrate Lola for the spectacular human being that she is, there are rare occasions when I do grieve. I think it’s pretty normal in special needs parenting. No one wants to see their kid work harder than everyone else. But Lola’s happy and isn’t that what we want for our kids? Just to be happy, right?

I’m thankful to be in a special community where others can lift your spirits on the bad days. I’m thankful for strangers like Coach Trotz. People who are living a mirrored life who can articulate their wisdom for others to embrace. Sometimes we need reminders that life for our special kids may need a bit of tweaking. And if I remember this, never again will there be a day where I envy watching “Frozen.” Instead I’ll take Lola’s ear-to-ear smile that comes from doing things she can do.

Thank you, Coach Trotz, for encouraging my perspective that day! You have a beautiful outlook on life and raising your son.

This post originally appeared on Say Hola, Lola!

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
JOIN THE CONVERSATION

Related to Down Syndrome

The Time My Son Made Me Smile After a Tough IEP Day

Yesterday was IEP day. It always causes me anxiety and stress. In the days leading up to it, I try to mentally prepare myself for it. I have to admit, I can’t say I have really ever had a bad experience. For that, I am grateful. I really do feel that his team has always [...]

To the Women at Target Who Make My Daughter Happy

In our town, there are at least three Target stores. I’ve been going to one of them since it first opened about 15 years ago. When my daughter, “Princess,” was an infant, I used to push our jogging stroller there several times a week just to get out of the house and get a little [...]

The Friendship That Made Me Say ‘Thank You’ to Cancer

When I was in high school, I was befriended by this loud outspoken, tall, beautiful girl who happened to have a black belt in karate. She taught me karate, showed me what it means to be a good friend, and gave me the beautiful gift of friendship. Fast forward a few years, and Sam and [...]

Their Relationship Isn’t What I Planned, and That’s OK

As I lay in bed next to our 4-year-old, I feel myself wanting to hug him tighter and apologize. Some nights I look at his innocent face and tears well up in my eyes. This was not what we had planned for him. The beauty is… he has no idea of the plans I made. [...]