Thriving with a Life of Independence as an adult with Spina Bifida –
I have news for you. It ain’t easy. Nothing worthwhile ever is. So get that notion
out of your head right now. No whining about how “hard” it is to be independent.
Because whoever told you it was going to be easy flat out lied to you.
And after reading this, do yourself a favor and show it to your parents. They may
not like it (ha, I doubt you’ll like it either, but hey, this is coming from
someone who’s been there and knows what she’s talking about so all of your excuses
are out the effin’ window).
Before I go any further, let me clarify something for those who get their exercise
by jumping to conclusions. I’m not so limited to my own reality that I believe
“everyone” can do “exactly” the same things I do. We all have strong points and
weak points. BUT we can work on them, around them, get help with them. For example
I’m good at managing finances and doing chores on my own. Sometimes I need help
with things, like if my shoulder becomes injured. The point is, I’m independent,
it is my nature but it was also nurtured by a family who recognized the importance
of me being independent. Maybe you need a little help with finances (because
frankly, it isn’t just us (people with disabilities) who sometimes need help in
that department. And there is nothing wrong with that. Perhaps you will find it
helpful to enlist the aid of a Personal Care Assistant, or maybe reside in an
assisted living facility.That’s what they’re there for. And who knows, maybe some
where down the road I may find myself utilizing these services. Such is life.
Where was I? Oh yeah. The reason why I wanted to write this blog is because of the
(too) many adults with Spina Bifida I’ve spoken with, who are completely capable
of living more independently but aren’t because they haven’t been encouraged by
their caregiver to be more independent (and who are constantly lamenting over how
much they WANT to be independent). You may not have had much of a say in it when
you were a kid, but guess what? You’re an adult now. Time to “step up to the
plate” and “put your foot down”. Sit down with your mom or dad or whomever and let
them know flat out that they’re not going to be around forever and they really
need to look ahead and seriously think about how YOU are going to live your life
as independently as possible once they’re gone, if they aren’t already showing you
how to do it. There is no magical transformation, it doesn’t automatically happen.
They’re setting you up for a world of hurt if they don’t. I’m not parent bashing
either. I’m a mom and a grandma, I worry about my babies (yes, they’ll always be
my “babies”). But I also know I won’t be around forever and they had/have to learn
to be as self-sufficient as possible. And they are. Even my four-year-old has a
say in making simple decisions – it’s called preparation.
Another suggestion. Don’t go off half-cocked and start the conversation when
you’re in a bad mood or frustrated. Your point won’t be heard. Arm yourself with
knowledge. Do a little research on the internet. Look up Centers for Independent
Living and find out what services they offer that might be of help to you. Most of
all, SHOW them you are capable, even if it’s starting small, like keeping your
room clean if you’re physically able to do chores, or learn how to manage a bank
account (people at the bank would be more than happy to show you, I used to work
for a bank and part of my job was to do just that). No one will take you seriously
if you don’t CONSISTENTLY make the effort.