Monday, December 9, 2013

Advice for parents: What to do about your Cerebral Palsy child

A while ago I reached out to a parent of a child with my type of Cerebral Palsy. They were very excited to hear from me as someone who has been through all of this and -not without dedication and sacrifice from many people in his life managed to get education and a career. Their child was too young to communicate on their own and talking to me may have felt in a way as a reassuring glimpse into the future. I in turn saw a familiar blend of eagerness to get started, hope- that with plenty of rehabilitation they get beat this, fear- that every moment is precious and many were already lost. But most of all- that caring for a special needs child is a gargantuan task and  they could not shake the feeling that with every turn they could be making a mistake. "You'll make plenty of mistakes"- I said- "But you'll get most things right". And I think that's a true statement. Raising children is difficult on its own, a child with a disability is an extra level of complexity. Kids don't come with instructions and what may work with one, won't necessarily work with another. Think of me and my brother for an example. He was a little rascal growing up that would get in trouble. I wasn't- not only because I couldn't physically move as much but I was the sensitive one with big imagination, constantly afraid of everything. Our mother tried to treat us equally and had a pretty tight grip on us both. My brother perhaps needed it, as despite his good grades he was a prankster. I ended being stressed about  everything and till this day quite jumpy- and I didn't feel like my mother's hands on attitude really helped me get out my own head. As a child I may have been talkative, but in many ways introverted.

1. Breathe.
I really believe that kids are not made out of China. Yes, as a parent sometimes you will make a mistake. You know how your parents always said, you'll understand when you're an adult? Well, there are things mine did that I don't understand till this day and others I openly disagree with.  Did any of it ruin my life or scarred me for the rest of my days? Not that I can think of. If we were really as delicate as psychology tends to suggest and we were to believe that every decision and every reaction is a matter of life and death with countless implications that cannot be reverted - how would we ever survive evolution as species. Breathe, do you best, adjust, breathe again. Your child may be tougher than you think. I've written countless texts about all the sacrifices my parents have made for me.  Simply put I wouldn't be were I am if it wasn't for all their gave up for me.I was hesitant and stayed silent  about the mistakes that they have made because I didn't want to shatter the image of them that I created for my readers with minor things that felt petty and insignificant.  And yet everybody has something they can blame their parents for and remember thirty years down the line.

2. Try Anything
I can't tell you what forms of therapy to try. I can't pick a rehabilitation facility for you. If you read my blog you'll know that I happen to be a big proponent of Conductive Education because that's what incidentally worked  for me in combination with other things and I'm more than willing to talk about it. You have to figure out what will work for you and your child. My parents were more than happy to  try out or read on any new approach out there. Many did not work or did not have a lasting effect, but we never stopped searching. And just because Peto was our man thing doesn't mean that my mother didn't insist on a host of other physical activities in between: horses, biking, swimming. You never know where the next big break might come from.

3. Be reasonable.
With that said, remember that there are only 24 hours in a day and there's only so much you can try. As someone who grew up with a very structured, physical activity driven childhood I say push your child towards greatness but don't push it or yourself too hard. I guess we really didn't know what to expect and did not temper our expectations accordingly, but I did grow up feeling a certain degree of failure, because despite our best tries I never ended up walking and to me it seemed like I disappointed my parent. Be smart navigating times and schedules. A child needs to be challenged physically and intellectually, excel academically and develop social skills. It's often tempting to focus on that one thing, that new method neglecting everything else, but not worth it.

4. Give space.
As someone who grew up being carried or wheeled everywhere by his parents I wanted to caution you about how difficult it is to develop your own identity, your own space and secrets if there constantly is  someone virtually attached to you. My mother would point out that when I was very little I could have not been left alone and cried for companionship and she'd be right. I just don't know which was the cause and which the effect. We all have a need for physical boundaries and physical space. Note how we are forced to give some of it up when we can't move on our own.

5. Give support and push harder.
Giving space doesn't mean that anyone should be just left alone. Throughout the years of rehabilitation, for many hours in the days my parents pushed me  to try harder, make one extra step and didn't seem satisfied unless I was exhausted and sweaty.

6. Remember: All kids are different.
My brother and I had different emotional needs. Not so much because of my disability but because we were different people. We reacted to the same things in different ways. We were not similar at all growing up when it came to hobbies, academic interests, the like or-in my case- dislikes of all things sports related or our choice of literature. We differ greatly in temperament and how we relate to the world. What worked on him growing up may have not worked on me.There's no one size fits all solution to parenthood

7. Give yourself.
Go ahead, browse through my blog. I have written repeatedly how much my parents have given up for me carrying me to school every day. I'm a "success story" if you will only because the one thing they have never given up on was me. While other parents around us did, we kept going strong- at the price of my mom and dad developing severe back problems.

8. Have hope and be happy.
What my parents sacrificed gave me in turn this great sense of guilt and uncertainty, fear for the future if you will. Push your kids harder, inspire them to walk, but never stop reassuring them that if it doesn't work, it's not their fault. That life goes on, and  wheelchair is not the end of the world. That whatever they end up to be, they will always be enough. And they should never stop dreaming and aiming high. I can tell you, that when I was growing up we felt like the most average family. We just did certain things differently. The special needs issue doesn't come out front and center every day. Most times, it's not even a factor. But I wish I had more of a sense of what my future was going to be like. Perhaps perhaps I would be so scared all the time.

2 comments:

  1. Thank you for this post, I think a lot of parents out there need to hear this. I run a Conductive Education program out of Halifax, NS and I am happy to hear that you were a participant in the 'CE World' in the past. If you or anyone you know would like more info about our program here please feel free to contact me. blynch@marchofdimes.ca, www.marchofdimes.ca/ce.

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  2. Thank you for this post! It all sounds too familar as I am also some one living and working with CP. I can't tell you how much I learned from my family. My Grandparents in particular! I'd love to hear more about your story. Feel free to contact me tanyawin1@gmail.com. It's so important to support each other and share our stories :)

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