Little Miss Adorable is a tiny four year old with Prader Willi Syndrome (PWS). In addition to the inability to feel full after eating, one of the many traits of PWS is hypotonia – very poor muscle tone that makes movement difficult. Until recently Little Miss Adorable could not walk. She spent the summer bum-shuffling over beaches and playgrounds, and travelled around the neighbourhood in a stroller.
This fall Little Miss Adorable started her Kindergarten year in a shiny pink walker. Queen of the Playground, she’d chase other kids across the blacktop in her walker and they’d greet her with a hug through the metal frame. Inside the classroom Little Miss Adorable cruised around using furniture for support, or bum-shuffling, or any available adult’s hand.
As any family with special needs will tell you, frequent medical appointments are a fact of life. Recently Hubby took our six year old to an appointment while I hung out in a neighbouring shopping mall with the two younger children. I envisioned a chance to check children’s snowsuit sales and an opportunity to sip a coffee and leisurely stroll through the mall.
You can stop laughing now.
Clearly I forgot what it’s like to have a toddler in tow. The Dunk is a typical toddler. He threw stuff, climbed on things, and ran away. And that was in the first store we went into.
I tried to strap him into our double stroller. He fought, he screamed, and then he just wriggled out. No five-point stroller harness made on this planet was going to restrain him.
I gave up. I gave up on looking at snow suits (honestly, that’s what the internet is for). And I gave up on restraining The Dunk and just followed him while pushing the double stroller with Little Miss Adorable riding in it.
Seeing The Dunk’s newfound freedom, Little Miss Adorable wanted to follow suit and demanded to be let out. Once untethered, she was thrilled to walk through the mall holding onto the stroller, pointing at everything (“Oooh, look at that!”). The problem was The Dunk has one speed – superfast – and Little Miss Adorable is a non-walker, sedately holding the stroller and window shopping. A fan of all things retail, Little Miss Adorable loves shopping malls, brightly coloured displays, and friendly retail staff. In her early days of walker use she refused to leave major clothing stores until she inspected ALL of their inventory. (See The Princess Gene and Why Walk When You Can Shop for more on this.)
Independence soon went to their heads. BOTH kids refused to go in the stroller and each had a firm idea of their own destination. Little Miss Adorable wanted to go into fancy clothing stores. The Dunk wanted to go into the water fountain (!)
The visuals must have been pretty funny as I struggled to haul my very pregnant body in two different directions, often leaving poor Little Miss Adorable standing alone (literally) while I extracted her brother from a large potted plant. Sales people handed Little Miss Adorable flyers from their storefronts while The Dunk bowled over entire families. (Sorry about that.)
I was exhausted, and had only been at this for 20 minutes. Hubby was not due to arrive for another 45 minutes at least.
I gave up, bribed them to sit in the stroller (Halloween candy on sale – our one and only treat) and attempted to find a safe and quiet place inside the shopping mall where I could let our two monsters loose and count the minutes until Hubby returned.
In the lower level of the mall I found some brightly coloured benches in front of a toy shop. Great, I figured I could collapse on a bench while the kids did some window shopping of their own.
Little Miss Adorable and The Dunk admired the decorated benches, then refused to let me sit on them as they counted designs and cruised around them.
I sent Hubby a text SOS, giving our exact location and begging him to arrive ASAP.
When I looked up from my phone Little Miss Adorable was pressed against up the window display, pointing out the delights of the toy store to The Dunk. How did she get over there, I wondered idly, then collapsed exhausted onto the empty bench.
I figured I had a few minutes to rest my aching feet before they’d get bored of staring at a display of toys. Then The Dunk broke and ran for the entrance of the toy store.
Abandoning the stroller and Little Miss Adorable, I raced after The Dunk and captured him just as he grabbed a fist full of penny candy. (Really, who puts those things at toddler height anyway?) Wrestling a toddler (NO! Mine!) and apologising profusely to the cashier, I dropped some change on the cash, and ran out of the store.
Little Miss Adorable was gone.
The stroller was still where I left it.
Horrified, I called her name, and she walked around a corner toward me. “Here I am, Mommy.”
I stood there, open-mouthed, with The Dunk still tucked under my arm.
There she was, Little Miss Adorable walking all by herself, shuffling her feet and elbows up in the air in a pose reminiscent of my grandma, but she WAS WALKING!!
By the time Hubby arrived Little Miss Adorable was walking from the window display to a large potted plant, and The Dunk was running in circles around the plant.
Poor six year old Mr. Sensitive was astounded, and wondered how his sister learned to walk while he was gone.
We had no idea how she did it. It seems like the excitement of being in a mall gave her the energy boost to actually set out on her own.
Within minutes Little Miss Adorable became ‘Little Miss I do it” and refused all attempts to hurry or otherwise direct her through the mall. She took her time investigating jewelry and fine leather stores, and dove into a rack of clothing.
Hubby loaded the other two kids into the van while Little Miss Adorable sauntered through the mall, smiling and waving at fellow shoppers. In the parking lot she refused to be carried, and I walked at a shuffle through the cold night air.
Exhausted, she fell asleep in the van and slept through the night.
Interestingly, the next morning Little Miss Adorable bum-shuffled around our house, completely forgetting she could walk. We tried to stand her up. She grabbed furniture. Hubby held out his phone and showed her the video clip herself walking in the mall. There she was, walking at a determined shuffle, bent elbows and arms straight up, marching through a Christmas display. (You can check out the video here)
“NO!” Little Miss Adorable laughed.
It took a while to convince her, but she soon ‘remembered’ how to walk again. And when we dropped her off at school that morning, the Kindergarten kids didn’t bat an eye to see Little Miss Adorable proudly walking across the blacktop. (All the teaching staff however, were ecstatic.)
By the end of the school day, Little Miss Adorable returned home with a scrape on her nose (she took a tumble during recess), and a note saying that she refused to go near her walker (yelling, “No walker! I do it!”).
It looks like Little Miss Adorable is becoming Little Miss Independence after all.