I read a question posted by a medical professional a while back that’s been stuck in my head.
This is a question that’s usually posed to parents/guardians of “professional patients,” rather than the patients themselves, especially when the patient is born with their disability (or diagnosed in early childhood). Cerebral Palsy fits that bill, in case you were wondering.
I understand that parents always want some kind of answer as to what their child’s life will be like as they grow once they’ve been branded with a diagnosis but no one has a crystal ball. All anyone can give you is their best guess, just like their able-bodied counterparts. Yes you’re given a different reality but there are more similarities than anyone knows to tell you.
There’s also something no one tells you about raising a child with a disability. You need to raise them to advocate for themselves, and as soon as possible (in my opinion), because they will grow up. And you may not be there, or they might not want you to be so involved anymore. They will become adults who will have the desire and need to speak for themselves so, take the same question and ask your child (or whatever term applies, and if they can’t speak for themselves yet imagine that they can).
“What do you wish you had known and what would you advise someone starting out on a similar life to yours?”
I, as in myself (and writer of this post), wish I had known just how common Cerebral Palsy is and how common it is that very few actually know what it is. I also wish I knew how drastically different my life would be as an adult.
Seriously, parents your children need to become self-advocates as soon as possible in as many ways as they can handle. Do you remember what it was like the first time you had to haggle with an insurance company for something for you child?
Now imagine doing that at 18 because you’re told by your insurance company that they can only speak to you because you’re the one legally responsible for your policy. And your parents never got around to telling you what actually goes into getting that assistive device or the therapy visits or the AFOs or the pre-approval for those Botox injections you’ve been getting every 3-6 months for who knows how long. Sure you knew they were on the phone A LOT but you never really knew what for.
All you knew was you got stuff you needed and your parents took care of it. Now that you’re an adult and your parents can’t help you in the same way that they used to (no matter how much they’d like to).
And if you have Cerebral Palsy it’s just that much more difficult (in my opinion) considering the fact that the vast majority of people, bureaucrats especially, believe in the misconception that Cerebral Palsy is a disability that only affects children thus making accessing similar services as an adult more difficult.
It’s like being fed to lions. Remember that feeling? Prepare them now, prepare them well.
And that’s just one aspect of life.
I wish I had known that life gets better, even though the fact that I have CP won’t ever vanish.
I wish I wasn’t given the impression that a surgery would fix all of my problems, but rather fix a current problem enabling me a change of being healthier and more mobile in the long run. I wish people, not just doctors, would have been more realistic when it came to voicing their expectations. It’s OK to have high expectations but it’s not fair to anyone to act like one event and no hard work went into the progress. Doctors have stethoscopes and the occasional scalpel, not magic wands and fairy dust.
There’s also so much more I wish I would’ve known but I don’t think I’d be who I am if I had known everything I needed to know.
I could also write several posts on “the stuff I wish I had known that your kids should know sooner than I did,” but I remember being a teenager so I know what I tell you whether you’re a parents or a teenager will eventually fall on deaf ears.
In the end (or even just further down the road) how can one really know how life is going to turn out (even if you think you have a pretty good idea), things have changed so much in the last 5 years alone there’s a more than pretty good chance that things will things will chance (hopefully for the better, and easier) even more.