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!
Peace out CP Facebook group, may your minds grow one day to accept your children as they are instead of how you wish they could be. Being supportive of other parents is a LARGE point of the group, so you may want to keep that in mind before your "advice" becomes scolding of other parents who think differently than you and are in no way hurting or harming their child. However, since you felt so justified in telling me that I was so very wrong, this post was so very necessary. I'm sure this is not an isolated incident. So please, try to remember that not all parents have to tell their children that "you can do anything!" and that they are not bad parents for doing so. Advice is great and always appreciated. However, someone asking if something is possible for a child with hemiplegic cerebral palsy is a NORMAL question, and in no way supports critical and unjustified attacks. Moving forward, I will continue to respect and encourage my daughter with anything she wishes to learn or try, and I will also tell her that she may not be able to do EVERYTHING, and that is OK:)