The smell of freshly cut grass. The warm winds blowing through the trees. Birds chirping and squirrels scampering. People taking leisurely walks and the sound of the ice cream truck in the neighborhood. Spring is here.
For months our kids have been inside playing as the winter took over. For months they have been on their devices, or playing board games, or watching movies and crafting. The time has come for them to venture outside.
Over the years the kids have built a network of friends from school. They text one another through the messaging apps or converse through games...making plans to get together. In one moment the kids will all be home and the next moment they’re on their way out the door; off to a friend’s house.
Even though Ella is in a wheelchair, this doesn’t stop her from making friendships and playing outdoors. The trickiest part for her is initializing the get-together when she wants to play with someone. She cannot simply drive herself over to a friend’s house to see if they’re home--she can’t get close enough to reach the doorbell. She often relies on us to text her friends’ parents to see if they’re available, or even has us walk her to the friend’s house. Sometimes she’ll take a chance and simply roll herself out the door, down the driveway and go straight to a friend’s house to see if they’re outside playing. She brings her Gizmo (a watch/phone) and calls us when she knows if she’s staying. She is ever hopeful. Once she's there the families make great efforts to accommodate Ella and her needs.
Ella has another challenge that faces her when it comes to playing with her friends. The bathroom. Often, after being gone for an hour or two, she has to go to the bathroom. She’ll call us on her Gizmo and ask if she and her friend can come to our house for a while. She often gives the friend a ride to our house on the back of her chair. They roar down the sidewalk, Ella navigating every bump as she has it all mapped out in her head. She rolls up the driveway and lets her friend off. In the house they go straight for the pantry to get a snack. Once her friend is taken care of Ella will ask me to take her to the bathroom. I oblige. When that’s finished, the kids might spend a few more minutes at our house (depending on what they find to do) or simply race out of the house to continue their day of escapades.
Ella has a whole summer ahead of her. She loves to be outside racing around in her power chair, or tooling around in her little chair. She enjoys the sprinkler, groups of friends playing together, and having cookouts on the deck. One of her favorite past times is swinging on the swing. She has learned how to sit and balance on the swing (ever since her back surgery) and thrills at the prospect of swinging back and forth as I push her, whooshing through the air. Kids need that kind of movement to help build their vestibular systems (that’s why they love spinning and being upside down); kids with SMA often miss out on those kinds of movements.
Ava will be in 7th grade, Henry in 5th, and Ella in 4th next Fall. These are all ages in which friendships and socializing are important developmentally. We are fortunate to live in a neighborhood where there are plenty of kids and families around us...we’re especially lucky that these families are willing to adjust themselves to Ella’s needs.
