Downs With Ups

I’m sure I wasn’t the only person the night of Poppet’s final primary school concert who marvelled at just how far she has come since her first performance as a ‘Preppie’.

Seven years ago, Poppet’s aide was also on the stage, dressed in black, trying unsuccessfully to look inconspicuous. Lea was wonderfully encouraging, helping Poppet with the simple dance moves and importantly, helping Poppet adjust to the strange and loud environment. Poppet managed a few of the moves but spent most of the time with her hands over her ears, cuddled into her aide.

Poppet was a little more engaged the following year, now knowing what to expect, but still struggled to keep up with the dance moves and songs. Her aide, once again giving up one of her evenings to be with Poppet, helped her through the routine. This time, her aide was less hands on, gently guiding Poppet through the routine. In Grades 2 and 3, Poppet became more confident, her aide stayed mostly in the wings, calling out prompts every now and then.

Poppet did her best every time and for that, I was immensely proud. She simply couldn’t keep up with the other kids. The dance steps became more complicated as the kids grew older and without exception, Poppet was always one beat behind the others. When the others were say, putting their arms up in the air, Poppet would be pulling hers down.

I actually let the music teacher know I was happy for Poppet to be given a role that didn’t require her to try to keep up with the other kids. It could have been a cameo appearance or a small individual role.  I didn’t want Poppet to feel any more conspicuous or pressure to attain something that was simply beyond her capability.

The breakthrough came at the concert when Poppet was in Grade 4. Once again, I was expecting her aide to be around, somewhere in the wings to help Poppet remember her moves. I anxiously waited for my daughter’s class for their turn on the stage. I’m always anxious at such public performances, for I never quite know what to expect. If she’s in one of her Ghandi-like, passive resistance moods, she may not even go on, as was once the case at her dance concert.

The time came for Poppet’s class. The stage curtains drew back revealing the class, every child looking wonderful in their bright costumes. The lights went up, the music started and I searched the stage for Poppet. There she was, at the back, stage left. Katy Perry’s ‘Firework’ filled the auditorium as the children sang and danced.

Tears filled my eyes, for the lyrics were so poignant.

“Baby, you’re a firework,

Come on, let your colours burst,

Make ’em go, “Aah, aah, aah”,

You’re gonna leave ’em all in awe, awe, awe.

You don’t have to feel like a wasted space,

You’re original, cannot be replaced,

If you only knew what the future holds,

After a hurricane comes a rainbow.”

There was my little girl with Down syndrome, performing quite a complex routine, mostly keeping up with the others and singing her heart out. Not an aide in sight. If the performing arts teacher for Poppet’s class deliberately selected this song and its routine, then I’m forever grateful. Her love of that song, dancing and Katy Perry all came together to make it one of the most memorable times in Poppet’s life.

The main factor contributing to the success of her performance though was that Poppet had learned to balance. After several years of playing hopscotch with Poppet, her aide achieved success; Poppet was finally able to stand on one leg. She proudly showed me how she could dry one foot whilst balancing on the other after a shower one evening. Even Poppet recognised this as a major change.

Motor skills development is often delayed in children with Down syndrome and this includes balance. Low muscle tone, retained primary reflexes and slow reactions all contribute to this. Learning to balance was one of the most important milestones for Poppet, for she became steadier on her feet and therefore more confident being amongst others, especially when dancing.

And danced she did, making us all go ‘aah, aah, aah’.