I haven't posted on this blog for a while. I have been very busy (as stay at home moms
often are) and have sort of let your mommy Jess take over :) Recently I was reminded of why I should post more often.
Recently (about 2 months or so ago) I was verbally attacked by other moms on a Facebook support
page (mom’s with hemiplegic children) for a comment I made, and realized just
how far we have yet to go. To sum up the
exchange, it started innocently enough, with a simple question about riding a
tricycle. Greta has been insistent on
riding a tricycle like her twin brother has been able to for more than a year
now. We practiced every day, at her
request. I bought about 5 different
tricycles during a 3 month period of time of various designs, types, and modernity. I tried lots of "tricks" and prior
advice I'd gotten from others. Nothing
worked. To be clear I don't care if she
EVER learns to ride a tricycle. I'm
pretty sure one can succeed in life without mastering this skill. However, Greta cares, and thus I never
stopped her from trying. I researched
online, did advance searching of other blogs looking for success stories, I
asked professionals: no one had an answer.
So I made a stupid decision, and asked other mothers on a support group
FB page for children with your particular type of CP if you could ever learn to
ride a tricycle. Framing it as whether
it was one of those things that just took a lot of time to learn (like walking,
sitting up, rolling over, etc.) or not possible. I did get a few helpful responses, but not
very many. Instead I received a number
of posts telling me not to make you practice so much (let's chalk these up to
poor reading comprehension as I specifically stated this was something you were
very interested in), a few that said I should NEVER tell you that you can't do
something (let's thank these folks for creating a generation of children who
believe they can do anything, http://www.hulu.com/embed/xOR__JDNXqDVbyr2vZEdzw
), and then it happened. I responded
with a "thank you for the tips and advice, however there are some things
hemi-kids can't learn to do and I wasn't sure if the tricycle thing might be
one of them. As a family we are ok with
the fact that Greta may not be able to do or learn some things". Uh oh…this evil mom was about to be
destroyed.
Angry comments began piling up. Likes for each of the comments where reaching
the double digits. Mothers began telling
me how wrong I was, how wrong my parenting was, and how this wrongness was
going to destroy your life. Bragging
began, with mothers ignoring my post but noting their hemi-kid did learn to
ride, but only because they (as good mothers) believed in them. There were so many ways to respond to my post
and even to disagree on how best to learn would have been supportive…the
um…point of the page. Instead I got
back-handed shaming like: “of course we NEVER tell our child they can’t do
something”, and “we make sure to tell our child they can do anything their able
bodied brother can do” and worse “I think it’s important that you not tell your
child they can’t do something. Research
says that it’s bad.” Any attempt I made
to elaborate just made things worse. I
tried to explain, noting that "maybe telling our children that they can do
anything may not be such a great idea, maybe acknowledging that a child with or
without hemiplegic cerebral palsy could only do their best might be better
overall", only fanned the flames.
One mother questioned "who the hell I thought I was", others
made fun of my attempt to integrate some research I had done as part of masters’
coursework that supported my idea by calling me "uppity" and
explained they didn't need "some fancy pants degree" to know they
were right. It ended with one mother
exclaiming that it was FAITH that helped their child, and that you Greta, with
your faithless parent, would never learn because I had no faith in you.
In the end I learned that only 3 of the 20 or so children
the posts referenced ever successfully mastered the tricycle. So I didn't quite get the answer I was
looking for, but I got the response that I needed.
Now I know what you're thinking, I should just blow off
anyone who used the word "uppity" and call it a day. But instead I was upset and sad, I felt
horrible for having been scolded and wondered why so many mother's felt it was not only acceptable, but their duty to call me out as a bad mother. Once
the irrational and over the top insensitive comments, based on little evidence
and lots of fear, had sat for a few days I was able to think clearly. I decided these women were FULL OF SHIT. Yes, I said it, full of shit. How's that for uppity?
Even I know I can't do certain things because I have an
autoimmune disease that makes some things impossible. Hell, there are things I can’t do simply
because I’m a short woman. I'm relieved
that I understand my limitations, and then focus on my strengths and use them
to help me succeed. Honesty is something
I value and think as a society, moves us FORWARD. However, being a person who refuses to hear
the voice of anyone else, who refuses to consider other points of view, is in
fact, disadvantaging themselves and their child. I listened to their side, I understand deeply
why it is so alluring to tell your child they can do or be anything they want. But when I see my child crying, sweating,
dragging her left foot in the grit at
the edge of the curb as her brothers race past effortlessly, I think out of
respect to my child, honestly acknowledging that this might not be possible is
the most ethical and fair (but hard) thing to do. Did these mothers not read that I had
purchased 5 different tricycles? Could
they not picture me at one dingy thrift store after another scouting for the
perfect design to make you fly? Did they
not understand how much it hurt to toss each one into our basement to grow cobwebs
and sit like a skeletal reminder of what we were unable to accomplish each spring, summer, and fall for almost 2 years? Maybe not, but I'd like to think that
regardless of our "fancy pants" differences, we can assume we all try
the best we can to be good parents.
In thinking back, perhaps it is not the specific insults but
the overall message that because of my perspective my daughter would not
succeed that hurt. I suggest we see it
from a different perspective. It isn't
about "can't" or faith or will or support it is about acknowledging
your child and their body with all its variety.
That my dear Greta is why I think you are lucky. Instead of telling you that you can do
anything I'm giving you reality. Not
only am I giving you that, I'm also telling you that it's ok to acknowledge
that you can't do some things, and that it doesn't have to matter. I don't have to lie to you to make you or I
feel better. Your disability is not
something I pretend doesn't disable you.
Those mothers suffer from a form of denial that I don't. In their defense, when your child is diagnosed
with CP it is heartbreaking. Everyone
copes differently with the reality of raising a child with a disability in a
world built for the able bodied. Some
mothers, they prefer to tell their children that they can do everything their
able bodied sibling can. The truth is,
you CAN'T. There is nothing wrong with
being disabled Greta. There is nothing
wrong with me telling you the truth and both of us learning along the way what
you can and cannot do. How frustrating
would it be for you if you didn't learn something as quickly, or you couldn't
play guitar like your brother Jack, or you couldn't ride a bike like your
brother Gus, and instead of compassion you received a message from me that your
struggle was all in your mind? I won’t
do that to you Greta. I will always be
supportive of you, and I will always concentrate on your strengths, without
resorting to a fantastical lie that might sound great on paper but in practice
just makes you feel like a failure.
Greta, you can't do everything, which is why CP is a
disability. However, if you ask me,
ignorance is a disability as well. So
for the mothers who decided to treat me so poorly, I feel no shame. I have learned that the support community for
children with CP is pretty thin. There
is little room for diversity and the kind of support they offer isn't so much
encouragement as it is entrapment (note: there seems to be much more support in
twin CP groups).
Today I feel lucky.
Today I feel happy for you, and I feel pity for those that felt they
must attack my parenting in order to feel ok with their own. It isn't easy to
hear the truth when denial is a part of your life. Next time I won’t defend myself, better yet,
I won’t even bother to venture into places where there can be no variety of
opinions. I've since left that group and
it felt good to just delete the whole thing.
Just like it felt good to heave the last tricycle down the stairs and
replace it with layers of wood to burn in our fireplace. Screw tricycles, I for one would rather
assist you in your efforts to craft the perfect s'more while indoors. And I happen to know you are one fearless
sled rider so bring it on winter. As the
chill replaces the warm breeze of fall the freedom to accept you as you
replaces the stifling silence of dishonesty. Of course if you want to try the tricycle again this spring, I will not deny you the opportunity to try and learn. If it doesn't work out, I hear those electric scooters are super fast! (Helmet needed of course). Oh, and don't forget, your one handed mini golf is actually pretty good. You were the first to get a hole in one in the family!
