Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy.
Since Syona was diagnosed with cerebral palsy in August 2011, our life has drastically shifted course. Time is spent on therapies, appointments and working towards specific cognitive, fine motor and gross motor goals. Any “extra” money goes straight into the cost of Syona’s therapies. The “me” time that is left over at the end of the day is spent doing research on just about everything from therapies to toys. A trip to the toy store is usually strategic, as I inspect toys and figure out what “functional” goals they will help us achieve and whether Syona will be able to play with them independently.
When I cook food for Syona I focus on textures and try and come up with shapes that may help with her self-feeding goals (I also have to be careful about the size so she won’t choke). We own just about every sippy cup on the market to try and get her to drink with a straw.
I went back to work (thanks to the support of our amazing family who have taken over a lot of the day-to-day tasks for Syona) in a field that focuses on children with special needs.
My next task is to go through all of Syona’s toys and figure out what (if anything) she can play with independently and put it in a separate box for self-directed play. I have a feeling this will require a trip to the toy store (and I’ll be sure to share what we find in a future post).
It sounds like I’m complaining. But I’m not. I’m really not. This is just our life. This is just how it is. It doesn’t seem overwhelming to me or feel like too much. It’s the only thing we know so I usually just barrel forward as needed. But over the past couple of weeks it feels like all I focus on is special needs, and our life is so much more than special needs.
It took an incredible post over on BLOOM blog to remind me of this. “Families teach this OT student key lessons” is written by Eric Smart, an occupational therapy student, and it’s a very honest, straightforward post.
After reading it, I popped in on Syona’s bathtime (usually Dilip gives her a bath). She was playing with her Boon Creatures toys and the scoop from her Boon Whale Pod. I could have focused on the fact that Syona was learning the concepts of pouring, scooping and working on her fine motor skills by grabbing the little toys (you know I’m a fan of building therapy into everyday play). But instead, I sprayed her with face with water and she giggled hysterically. It was the best moment of my day.
So I am grateful that students like Eric Smart choose the field of paediatric rehabilitation. I’m grateful that he shares his learning and I’m hopeful that other professionals in the field will read what he wrote. I’m also grateful that families and parents like me will get that reminder that letting go of the special-needs and focusing on the fun is a necessary and welcome part of any day.
How do you balance special-needs and your family life? What do you do when you need a break and just want to have fun with your kid?