We’re running our own race without the milestone charts, one win at a time
We've thrown out the expectations, and are meeting our kiddos where they are
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We’ve adopted a family motto: “Run your own race.”
Both of our kiddos experience global developmental delay due to Prader-Willi syndrome, so my husband, Jamie, and I learned very quickly that we had to adjust expectations when it came to the typical milestone charts and timing. In partnership with their care teams, we came up with our own way to measure progress. Jamie and I call it running your own race, and it shows up in all aspects of our lives: how we prioritize. How we set therapy goals. How we reframe perspective on hard days. How we celebrate wins big and small.
On a recent weekend, we celebrated two wins!
Communication celebration
A current focus for our daughter, Emerson, is speech development. She’s almost 4 and is largely nonverbal aside from a few sporadic words. That doesn’t mean she doesn’t communicate, though. She’ll grab your hand and usher you to the refrigerator, sign a few words, and act things out until you figure it out. We work pretty hard for spoken words.
Her typical communication for letting us know she wants to watch TV is to grab our hand and pull us to the windowsill where we keep the remote. Our response is to encourage her to tell us what she wants. We keep it simple.
“On. Do you want me to turn on ‘Bluey?’ Ahhhhhh-nnnnnn. Can you say ‘on?'” I’ll say, pointing to my mouth, sounding out each letter sound. Then slower. Then singing it. I do this routine five or six times as she studies my face and moves her mouth. Usually, she eventually redirects herself to stand in front of the TV or point to it. Not this time.
I said “on” a few more times, watching her watch my mouth the way she does when she’s really working on something, mimicking the movements. And then, there was sound: “On.”
I’m pretty sure I scared her: I quickly scooped her up, bouncing and beaming at her in celebration of her big win. “You did it! You said ‘on!'” While I was ecstatic, she was just happy “Bluey” was finally playing.
Engage your core
Ellis, our 11-month-old son, had a win of his own. Building strength in those head, neck, and core muscles has been a primary focus. Growth hormone therapy has helped with hypotonia, as we’ve seen considerable strength gains. His physical therapist recently adjusted exercises to focus on postural muscles. They also turned us on to the Upseat, which has done a lot for his posture. Every day, we practice. Lots of assisted tripod sits with his legs out and hands on them or on the floor between them propping him up. We test the waters, providing less and less support.
Then, it all came together. No support. Perfect tripod. Balancing his head. You could tell he was working so hard for it, concentrating. We held our breath, smiles wide across our faces. Once he realized he was doing it all on his own, he just sat there, grinning, cracking himself up like he couldn’t believe he’d pulled it off.
He sat there for over a minute, until his head started to bobble, eventually taking him over. He just kept laughing. He was so proud of himself, and we were beside ourselves with joy for his accomplishment. He wanted to get right back up, and we were more than happy to help him practice some more.
There are no small wins
To some, these wins may seem small. For our kiddos, no win is small. That’s the point of running your own race. We’ve thrown out expectations and meet them where they are. We don’t compare them with others. We push them in a healthy manner, encouraging them along the way and celebrating every win.
Don’t get me wrong, these wins are hard work for both kiddos and caregivers. It’s consistent therapy appointments, specialized equipment, growth hormone shots, repeating the same word over and over again. It’s hard to watch your kid get frustrated with their own body or the difficulty in communicating what they want. It’s painstaking to sit there and watch their frustration instead of swooping in, because you know that healthy struggle is best for them.
Which is exactly why we make such a big deal out of each achievement, no matter its size.
Neither kiddo is behind. They’re right where they are. Ellis worked so hard for that minute of independent sitting. Emerson is communicating constantly, in her way. Consistent verbal communication will come eventually. In the meantime, we’ll continue to hug them tight, celebrating every time they sit up or repeat a word.
We’re running our own race.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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