Summer is here! We’ve been staying up late, sleeping in, sitting by camp fires, eating good food, and enjoying some visits from some very special friends. At night I work on my exams and the mornings we take it slow and enjoy Abi’s summer schedule.
During our three weeks between the end of preschool (still can’t talk about it) and the beginning of summer school, Abi has continued to go to OT and feeding therapy at our beloved clinic, enjoy PT, and also ride her favorite horse once a week.
Without school though, the days are a lot slower and so much time is totally unclaimed. These long hours of summer break reminded me that there was a stage when “down-time” was a bit challenging. For parents of children with profound special needs, the summer landscape can initially feel a lot different. If your child isn’t able to go jump in the swimming pool, or find a book to read, or play with a toy independently, it can feel like you are entirely responsible for their every engagement- and if you drop the ball, they don’t have any experiences. (Insert heart palpitations.)
This was my fear when Abi turned three. I began to sense that her baby swing and the books I read were just not cutting it. She was getting bored. As an only child on a farm for most of my childhood, I was a master at entertaining myself. Making up dances, singing in the woods, swimming in the pond, jumping on a horse, writing a story, going on snake hunts (I used to go to the creek behind our house and turn over rocks with a stick in hopes of finding a snake- not exactly sure why I was so fascinated by snakes but I really, really wanted one). The point is- the summers were hours upon hours of independent entertainment.
As Abi entered “toddlerhood” I was worried that she might not be able to entertain herself… what would that look like for her, and also… what would that look like for me? Would every minute be spent helping her engage in activities? What would happen when I was doing dishes, eating lunch, or just doing my own thing- would she just be sitting there… doing… nothing?
We began brainstorming activities we could do together (painting, playing instruments, going on walks) and then searching for things she could do independently. Today I can say I’m truly OVER THE MOON in regards to her independent play. A) She’s a natural master at entertaining herself and B) Her skills from her years at preschool and therapies have crossed over into independent engagement at home.
Here are a few of our favorite activities:
- She LOVES Elmo, Sesame Street, and the Price is Right (ha!- all the buzzers and screaming create a real love affair.) She is able to sit in her amazing blue chair and watch tv. I love seeing her engaging with the video, laughing out loud, and sitting up tall with her legs stretched out so nicely. (Extension is so important for folks who don’t stand by themselves).
- She is also able to play with her communication buttons. If I lay two by her head she is able to stretch out and go back and forth, hitting them each with her cheeks and laughing the whole time. Sometimes I record funny songs on these buttons and other times I record educational things like numbers and letters. It’s also great practice at making intentional choices. “Play me your ABC’s.” “Play me a Taylor Swift song.”
- Abi also loves lying on her stomach. She loves lifting her torso and kicking as high as possible. This always cracks me up. Sometimes she laughs so hard she can hardly catch her breath. (There is a risk here of her button coming out- but luckily that’s not a big deal anymore. It’s a risk worth taking as we can just pop in a new one here at the house.)
- She can sit up tall in her new Rifton Activity Chair. This is basically a rolling lazy boy with amazing support for Abi. TV? Check. Hanging with the fam at our eye level? Check. Playing with items on her tray? Check. It goes up AND down. We made it a permanent fixture in our living room and I love that it’s her very own piece of “furniture”.
- The Rifton also allows me to engage with her one-on-one. We can do art work on her desk, practice knocking over blocks, etc. Sometimes I leave her keyboard, crinkle purse, and stacking cups on the desk and over time she will use her arms (or head) to knock them over and hit the buttons. I love it when I’m in the kitchen and I hear the keyboard start singing.
- She also loves being on the porch and while we’re working to get additional padding for her swing (due to her hip dysplasia) it’s a really awesome option for her as well.
- Abi also LOVES going on trails in her chair and “off-roading’” to a nearby creek.
- We love country drives with the windows down and music blaring.
- The iPad. Oh thank God for the iPad. So many amazing apps that require very little touch. Abi is able to activate the screen with her cheek like this:
- And finally, she IS able to entertain herself completely solo. When the movies are gone and the activities are done, she loves to lie in her bed and talk and kick with her stuffed animals. It’s my favorite time of the day, hearing her having so much fun in her own space all by herself.
All in all- I can’t tell you how thrilled I am with her ability to play independently. Right now as I type this she’s sitting tall in her blue chair watching Cat and the Hat with her legs stretched out so nicely. In a few minutes we’ll get in the car, go on a long drive, go ride horses, and then get this mama a latte. Life is so good.