The great irony of parenting a child with a disability is that one of the things you want most for them – full inclusion, with no strings attached – is often sabotaged not by the actions of others, but by your own fears.
When Sarah Kate wanted to sign up for swim team, every ounce of my being screamed, “NO!!!” It was only after stepping out of my comfort zone and emailing the coach that Mr. Andi and I were convinced to let her try it. And for the record – we already knew the swim coach, as she attends our church and is one of the P.E. teachers at Sarah Kate’s school, so it wasn’t too hard for me to muster up the courage to contact her.
Swim team was a good experience for Sarah Kate.
She became a better swimmer, experienced what it was like to be part of a team, and took pride in her accomplishments. This summer will be her third year of swim team, and while the long-term benefits are impossible to measure now, I have no doubt that if she continues to swim she’ll be healthier and stronger throughout her life.
But swim team was tough for me (and Mr. Andi) – especially in the beginning.
I don’t mind having the kid who’s last, but I struggled with having the kid that held up the meet because she was so far behind the others – the kid that caused parents to look around, wondering why the next heat hadn’t started yet. The kid that everyone cheered for once they noticed her, because Holy-Cow-There’s-A-Kid-Still-In-The-Water-I-Wonder-What’s-Wrong-With-Her.
Eventually, however, I grew accustomed to swim team, and so did Mr. Andi. It helped that she got better – while she’s still last, she’s no longer PAINFULLY slow. Somebody’s gotta finish last, right?
The thing about Sarah Kate is that she doesn’t think of herself as different.
She knows she has physical limitations, but she’s never really equated those limitations with inability. After attending baseball opening day last spring, she decided she wanted to play baseball – neither the fact that she was the wrong gender nor her cerebral palsy entered her mind. And she’s been making noises about trying out for her school’s talent show this year – her talent: DANCING.
Heaven help me.
Sarah Kate’s been working with Mr. Bill, her adaptive P.E. teacher, on fielding and throwing for about a year. Recently, they started working on hitting, as well, so of course she determined that she could now play softball. My mind again screamed, “NO!!!” but we signed her up, anyway.
Tuesday night were the evaluations. Sarah Kate was wearing long sweatpants that hid her braces, so it wasn’t immediately obvious that she was “different” from the other girls. As she stood on deck waiting for her turn to bat, I could feel every fiber of my body tensing up. I texted Mr. Andi and posted on Facebook and Twitter, desperate for some moral support. I began to shake, and pretended it was from the cool night air.
The coach pitched to her eight times, and she hit almost all of them into the infield. Maybe this wasn’t going to be so bad, after all. Before the last pitch, he told her the next time she would need to run.
She hit her final ball, dropped her new purple-and-white bat, and took off down the first base line. Now it was obvious. Now I knew that the parents who may not have paid any attention to her before could see that she was different. Her awkward gait was steady and consistent, though, and unlike most of the other girls, she didn’t take the wide trajectory or slow down in anticipation of reaching the base.
Thank goodness that’s over.
On the way home, she bubbled over with enthusiasm:
“The coach said I hit really good!” “The coach said I did a good job throwing!”And then, the question I was dreading:
Should I temper her enthusiasm by telling her the (albeit sugar-coated) truth? Or should I build her up and tell her she did great? Should I try to strike a balance so that she’ll have realistic expectations but also believe in herself?
I tried the latter. I told her that everybody’s better at some things than others; she was good at hitting and throwing, not quite as good as fielding, and that her weak area was running, but that being good at one thing can make up for not being as good at something else. She was good with that, because she believes without a doubt that she is awesome.
The hardest part was convincing myself that it’ll be okay.
That she’ll have a great time and get to experience the value of being on a team that, unlike in swimming, works together during the game. That other people will be positively impacted by her presence on the field. That, as my friend Dawn wisely told me, she has the gift of being okay with who she is.
k says
As soon as I saw you post on facebook even MY nerves took off. I was so glad to see your last post about how well she did and how good she felt.
You are a wonderful mom, and I can’t wait to hear about how the season goes.
Sarah says
“I told her that everybody’s better at some things than others”
Good call.
And next thing she tries out for I’LL GO.
Andi says
Thumbs up!
Wren says
My favorite part, what made me wish I was as strong as Sarah Kate: “…she has the gift of being okay with who she is.”
I’m not ashamed to say I’m a massive self-doubter. I’d give anything to have in me the confidence that girl’s got in her pinky finger. Such an incredible young woman. 🙂 Can’t wait to hear when she hits her first home run!
Kristen says
Sarah Kate might be my idol. I’m with Wren!
Krista Gage says
I just started reading your blog and I love it. I have twins that are 5, one of which has Down syndrome. They are in kindergarten and we just signed them both up for wrestling. We will see how it goes. I figure I will sign both of them up and then if Kyler (the one with Ds) doesn’t want to do it…oh well, we can try something else later. I’m loving your blog.
Andi says
I know you didn’t intend your comment to be funny, but when you said you signed your boys up for wrestling, I had to laugh. I think Nathan would LOVE wrestling, LOL!
Thanks for much for visiting and for commenting!
Krista Gage says
Trust me I think it’s going to be funny too. The best part about it is that they get issued “singlets” to wear for the two meets. I’m very excited because what is cuter than 5 year olds wearing singlets. Totally awesome.
Zachary Fenell says
Exceptional post! Your daughter is very lucky to have you because you care so much. I have a mild case of CP and growing up my parents fears prevented me from trying little league and other things. At the time it really frustrated me but I don’t complain about it anymore because I realize how fortunate I am to have such loving parents. I do have a book out on the Kindle and Nook called Off Balanced which talks in much more detail about my experience as a teenager.
Andi says
It’s a delicate balancing act – protecting your child from harm but pushing them to do more and take risks. All parents go through the same thing, I’m sure (I don’t know – I don’t have any typical children…), but I think it’s probably magnified when you have a child with a disability.
Shasta Kearns Moore says
That’s so great, Andi. All of it. I know there are many people out there with children with CP who wish their child could even approximate swimming, running, hitting and dancing! I say live it up!
Jenny says
I thought this was great!
I totally understand what you mean by it being a fine balancing act but I think you are handling it perfectly! By giving her the opportunities to try new things you are showing her you believe in her and that nothing should hold her back. As she gets older she will realize what her limits are by herself, but at least she will not be afraid to try things.
I love reading about Sarah Kate 🙂
Kim says
My Sarah holds up swim meets every.single.time. She the slowest swimmer because she’s slow, but she loves it, so like you I had to learn to go with it. Everytime she throws her tiny body into the water I swallow a bit of vomit, I’m not gonna lie. Your Sarah is beautiful and courageous – and you’re doing a fab job 🙂