Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary toddler with cerebral palsy.
When you have a child with special needs your very definition of achievement changes. For a type-A perfectionist like me, this lesson came hard and fast. It was a lesson I needed to learn quickly if I wanted to experience happiness, joy and contentment again.
I know many people notice the deficits when they see someone with a disability — the inability to walk, talk, feed, clothe, bathe, toilet themselves or have typical social exchanges. They see what is missing. I used to think the same way.
This month marks the two-year anniversary of Syona’s cerebral palsy diagnosis, and one of the most remarkable changes in our life has been in my attitude. When I see someone with a disability I don’t only notice what he or she can’t do. My daughter has given me a superpower: to see past the disability and see the individual. It’s an incredible gift. We also slow down and celebrate the little wins and achievements. Our milestones may not be the ones you read in the parenting books but they are huge, amazing and worth celebrating. Last year around this time, I wrote a blog post reflecting on our first year with our new label, and this year I knew I would do the same thing:
• Syona has a lot of new words. Her most recent speech assessment showed significant progress. We communicate much better and, most importantly, there are times she is able to tell me what she wants without me guessing.
• She asks for toys and we’re working on getting her to play independently.
• She has a new wheelchair stroller and will happily attempt to grab onto rails, the sides of tables or anything else within reach and move herself around. I’m happy that she is motivated to move around independently. I never thought I would be in love with a wheelchair, but I am.
• Syona has a sense of humour. She makes jokes all the time. And most of the time they are funnier than mine.
• I’m grateful that she has temper tantrums and we are able to discipline her appropriately.
• Syona still loves food. She can eat sandwiches now (this is a big deal because they have different textures and require a decent amount of chewing). She is even starting to feed herself independently.
• She is still my favourite person in the world. And she’s extremely social and charming in social situations. The above-mentioned tantrums often only happen when myself, Dilip or his parents (who take care of her while we’re at work) are around.
• I’m back at work and Syona has adjusted really well. It’s wonderful to be back. I love my job, my colleagues and our new life. There are challenges, but they are so worth it.
• Syona is growing up. She has her own opinions and we need to ensure she has opportunities to make decisions (e.g. does she want to go to the park or go for her bath).
Since I’d originally written this post, a story came out about a hateful letter from a neighbour targeting a teen with autism and his family. I thought about re-writing this entire post but ultimately decided against it. Because kids like Max and Syona are awesome champions that deserve to be celebrated — heck every kid does. So you know what I say to this mom? “Na, na, na, na, boo, boo, my almost-three-year-old and Max are better people than you.” I hope that my childish jab is language she will understand.
Prior to having Syona, my mentality was that if you’re going to bother doing anything, you should do it perfectly. In retrospect it was a pretty narrow way to live. My new perspective is a bit different as my personal definition of perfection continues to evolve. And you know what? I love it.
How does your family celebrate achievements?