There are 17 million people around the world with cerebral palsy (CP). A further 350 million people are closely connected to a child or adult with CP. September 4 marks the very first World CP Day, and since I’m part of that 350 million, I’m sharing the top 10 things I want you to know about parenting a child with CP.
1. My life is not a tragedy
Syona faces more physical challenges than the average kid, and as a result our life can be a little more demanding than what we expected before we learned about Syona’s special needs. But it is not devoid of joy. Syona’s smiles make me smile, and her laughs make me giggle. We don’t focus on what Syona can’t do. We celebrate what she can.
2. We have more in common than you think
Yes, Syona has special needs. And yes, those special needs dictate our schedule and other facets of our life. But we also share the typical toddler woes: sleep problems, mealtime shenanigans and the ever-increasing toddler tantrums and whining.
3. Ask me questions
When other parents see that Syona moves differently, I would invite them to ask me questions about why that is. I’d love to tell you about Syona’s abilities and challenges. I won’t get easily offended — especially if you are sincerely trying to learn about special needs.
4. Stop using the word “retard” as a synonym for stupid
At this point, we don’t know whether Syona has cognitive challenges and we likely won’t know for a couple of years. But regardless of her abilities, I’ve learned that the word retard hurts. So please stop.
5. I worry about bullying
I bet you do, too.
6. I’m neither a saint nor a hero
I love my kid and I have more patience than I ever thought possible. But a traffic-filled two-hour drive with my lovely, beautiful girl incessantly whining in the backseat is going to leave me a little irritated.
7. We have a hectic schedule
It means the world when friends are willing to work around our schedule or understand when things come up and we have to cancel at the last minute. We love spending time with all of them and the fact they are always so understanding means so much.
8. I want my child to be as independent as possible
Syona is no longer an infant but it’s easy for people to treat her like a baby because she can’t walk and is on the smaller side. But I will treat her like the spirited two-year-old that she is, and I would love it if you did the same.
9. The opportunities are endless
Despite her physical challenges, my daughter will have more opportunities than I ever thought possible. This simply fills my heart with joy.
10. I am more optimistic and happier than I ever was before
We had things pretty good before having a kid. I really don’t think I appreciated how much. I was always thinking about the future. Having a child has brought so much more joy to our life than I ever thought possible (along with major sleeplessness and loads of clutter, but that’s beside the point). And while we encourage Syona to achieve as much as she can, we also slow down and appreciate all the little wins.
If you could tell the world about your parenting experience, what would you say?
P.S. Have you been following the 2012 Paralympic Games? Last I checked Team Canada had won a lucky 13 medals! The games wrap up on Sunday, Sept. 9th so be sure to tune in (check out the coverage at Sportsnet)!
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