October 6 is World Cerebral Palsy Day, a time to come together across the globe to break down some of the misconceptions and to educate those who don’t know anything about the condition. Cerebral palsy is the most common childhood disability and affects around 17 million people worldwide.
Recently I was thinking back to Braeden’s cerebral palsy diagnosis and remembering what a deer in the headlights I was when I was told he would live with cerebral palsy. You can read more about my feelings when he was diagnosed with cerebral palsy here. In short, I was holding my baby who had quite an unremarkable entry into the world, and finding out he had a condition I knew nothing about. In retrospect, I actually feel ashamed I didn’t know more about it. I knew of the Spastic Centre (now renamed the Cerebral Palsy Alliance) but I really only thought of them as a charity and didn’t know much more. It wouldn’t take long before I was thrown into the world of therapy, a whole new language, and a new way of doing everything. Suddenly I needed advice on everything from how to carry my baby for best positioning for his condition to equipment I hadn’t imagined would be part of his world and future home modification needs. It was overwhelming to say the least but like most things in life, you learn when you must and in the process of learning about cerebral palsy, I’ve also expanded my knowledge on disabilities in general. We should all know more. It would certainly make for a world which is more accessible and inclusive if people took the time to learn a little.
Braeden lives with athetoid cerebral palsy, the rarest kind of CP. His athetosis makes up 1% of all the different types of cerebral palsy. It means he’s been lucky to have no issues with muscle spasms and spasticity, but it’s also meant we’ve never really known what to expect by way of outcomes. We haven’t met many people with a family member with pure athetoid cerebral palsy. Everyone works at their own pace though, so perhaps it wouldn’t have been the great help I thought it would be when Braeden was little.
World Cerebral Palsy Day seems like a good time to share a few things I’ve learnt along the way.
None of us know what the future holds so looking to the future only means you are missing out on the good stuff that’s going on right in front of you. So, enjoy your loved ones and try not to always be worrying about the future. I spent many years wondering if Braeden would walk, talk and how he would fit into a society that wasn’t geared to people with a disability. All those questions were valid, but no-one could give me an answer and worrying about it didn’t change anything. It was wasted energy that should have gone into just enjoying my baby.
Small milestones add up to the bigger stuff. I can tell you no-one asks me when Braeden sat, gave up a dummy or any of those other baby milestones that seemed all consuming when he was little. As soon as you can do it, no-one cares about when it happened.
Being non-verbal does not mean your child will not be social and have a lot they want to share with you and the world. Braeden has friends across the city from the ferry operators to his support workers, past and present. He has found a way to make people feel special and built a community for himself.
Engaging positively with children who are curious and providing an opportunity for them to learn and understand is usually more rewarding than walking/wheeling away. We’ve had some great encounters with kids and listened to them chatter away to their accompanying parent in such a positive way after their questions have been answered.
Don’t get stuck on one milestone or the timeline a therapist might give you to achieve it. Braeden has shown us that there is the opportunity to improve and develop long after the usual timelines. This could just be Braeden’s personality but he’s still gaining new skills every day. I wish I’d known this when he was little. When he started high school I felt he had probably reached his peak.
Motivation – we all need the right motivation. For Braeden everything is an effort, the simplest of tasks can be like a marathon for him so he needs to see the point in putting in that effort. There needs to be something in it for him and I reckon that’s fair enough. We always acknowledge that it’s hard work and pile on the praise. Everyone needs encouragement, and praise never goes astray.
People take their cue from you, so the way you treat someone with a disability will be reflected in how others see them and react to them. We’ve always been positive and highlighted what Braeden can do. There’s certainly never been a pity party in our house.
We’ve never believed in limiting Braeden with our ideas about what he will be able to do. By the same token we’ve always been understanding of his limitations. It’s a balancing act but I guess it comes down to keeping an open mind.
See the individual. Everyone is different and that’s same for people who fall under an umbrella term like cerebral palsy. Appreciate a person’s unique qualities, whether they live with disability or not.
Remember to have fun and maintain the role you were meant to have. For us it’s important we spend time being parents and a family. It’s easy for the caring role, including therapy, advocating and daily admin to become all consuming. That’s one of the reasons travel is so important to us.
Be kind to yourself. There are things I would change if I could turn back time (cue Cher) but ultimately I know we made decisions in good faith and with good intentions. We made the choices we made feeling they were the best option for Braeden at the time so we can’t regret them.
Let people into your world. I think when Braeden was little I felt so protective of him I shut people out. I was worried about people judging him, not loving him and being critical. As a result I wasn’t as open to spending time with people other than those in a similar position. While I had great relationships with other families with a child with a disability, I didn’t spend as much time on my friendships with others. What I’ve learnt is that people really care and have taken Braeden into their hearts. I should have trusted more. It’s also never too late to enjoy those friendships, I have a wonderful balance of friends now.
It’s been a steep learning curve for all of us and really tough at times but Braeden is a happy, loving guy who is living his best life. That’s all I could possibly want for any of my loved ones.
World Cerebral Palsy Day is a great opportunity for us to share what we’ve learnt and how we have grown since that day when we were told Braeden would live with cerebral palsy.