2015-06-19 Posted By Jenna
I truly believe that we don’t start off life judging people’s abilities. Buying into society’s expectations of us and how we’re supposed to meet them is what does us in. Trying to feel like you belong can come with such intense pressure, because the alternative is just plain awful - feeling like you don’t (a scary thought for children and adults alike). If we don’t create opportunities to discuss how we’re seeing the world around us (and the people in it) with people who will strive to help us be open-minded and accepting, we’re ALL headed down a dark road - those of us who don’t fit society’s idea of what its people should be, and the ones who can’t or won’t see the opportunity diversity creates in the world. So, we’ve got to help each other out, for all our sakes!
I’ve been wanting to touch on the Bully topic for a while now. I don’t think anybody can really stomach the idea of a child being bullied, and yet we see it all the time - with dire consequences. I hope this will be an opportunity to shed some light on how to break down barriers and create an environment of education and respect for those of you trudging through school (which is hard enough) with health challenges (or know someone who is).
All the kids I’ve worked with who have health challenges are the most resilient creatures on this planet! Yes, I know I talk about resilience a lot, but I think it’s a really important quality to emphasize (however many times), thank you very much! And no, I don’t say this because they get out of bed in the morning, which can be hard for anyone, I say this because (almost without fail) they show an unwavering fighting spirit that says, “Ya, I’ve been knocked down but I’ve gotten back up - it takes a lot to break me.” Frankly, if you could meet these kids (without knowing the details of their medical lives or without seeing their challenges as defining who they are), you might actually be tricked into thinking that they’re just an ordinary child (don’t feel bad, it can happen to anyone).
When I get to hang out with these kids, it’s incredible how quickly their mobility aids disappear. What I see are kids who: want to make friends, would rather play than be in a doctor’s office, have their own tastes, are learning new skills, and who have goals and go after them the best way they know how. Know any kids like this? Do they all face health challenges? I didn't think so. In my mind they’re all just kids, and up until elementary school-ish - that’s how they see themselves, too.
Personally, I was lucky to have been introduced to some pretty great kids really early on. They were so open and adaptable! It didn’t take long for my “normal” to become their normal. There were no questions or judgmental expressions when I needed to be carried or stuff like that. To them, I was Jenna. Period.
I can actually remember a lot of my playdates when I was a little munchkin. We’d make up dance routines to Aqua, we’d play with Barbies, we’d go to the park, we’d play dress-up…ahhhh, those were the days. Hmmm, now that I think about it, all of that doesn’t sound half bad, do you think I’m too old to do that all again? What do you mean, “Yes, because you’re an adult”? Oh come on! Pleeeease? *Sulking*
But there was a storm a-brewin’!
My mom probably summarized this phenomenon best (in a part of her still-unfinished book about my life, from my perspective, she started writing about 15 years ago):
“I didn’t appreciate any of that early drama at the time [the details of Spina Bifida], of course. In fact, it wasn’t until about three years later that I actually realized I was different from anyone else. What was to notice? I could see that all babies were carried and strolled around, all babies had a great time playing with balls and puppies and, as far as I knew, all babies had major surgery every year or so.
But, lo and behold, I did discover at the age of three that there seemed to be some discrepancies between me and the other kids. I noted that when we sat in the sandbox, they would always be getting up to run around or look for rocks or swing on the playset. And I wasn’t doing that. It wasn’t any big epiphany or anything and I didn’t think too much about it at that point. But I started to notice then that there was something wrong:
What was the problem with these kids that they couldn’t sit still?”
It wasn't until early elementary school that things really took a turn for the worse for me and my friendships. It wasn’t just our little group anymore. All of the sudden, there were other kids. Kids who started asking me questions about my Spina Bifida, which had never been an issue before. Ironically, I thought they were the weird ones for asking questions about me and my life (but I didn’t want them to feel self-conscious about it). My plan? Answer their questions as quickly as I could so we could all get back to recess and forget this whole silly let’s-dissect-what-Spina Bifida-is-all-about business.
You have to admit, it was a brilliant plan…in theory. But somehow my answers made it harder to make friends with the other kids. Which, again, had me cocking my head in confusion because I gave really good in depth answers to their questions (if I do say so myself). What more did these kids want?! And why did they ask me questions like, “How do you go to the bathroom?” Honestly, I just thought they were having problems getting the hang of catheterizing themselves, and they just wanted to make sure they were doing it right. NOPE! My bad…
So, it was a good run while it lasted, but my gig as one of the “normal” kids was up. Even though my parents were lawyers, I didn’t see all of my answers to their questions coming back and being used against me in the court of the playground. Rumours and half-truths started spreading. Teachers sent me to the office in lieu of gym class, not thinking I could participate (yes, even though I had been doing Karate for half a decade by this point), which didn’t help my peers see me as one of the gang. I missed a lot of school, which was actually a good thing (in a sad way) because conversation between me and my peers had become non-existent - at least now they had the chance to ask me, “You’re having surgery, again?!” I was officially in limbo.
I was a kid who grew up in an adult world. An adult-kid? I had suffered pain beyond my peers’ wildest nightmares, which hadn’t given me the street cred I had hoped it would. Why did the adults seem to understand and accept me, but the kids didn’t? Again - I was VERY confused.
I started to withdraw, not wanting to be bullied anymore or pitied, and I started to entertain myself. My parents, teachers and most other people didn’t realize the extent of how serious things had gotten because I didn’t talk about it. I thought this was how it was supposed to be, that I was different and wasn’t supposed to belong. I mean, if it wasn’t, why weren’t the adults helping?!
But let’s stop there. This story might sound familiar, and I’d like to tell you that there’s a magic solution to navigate it unscathed, but there isn’t (that I know of…).
I’ve learned that life can’t be about playing the blame-game, it has to be about learning and using what you've learned for good later on (even if it’s for the benefit of others and not your own…you once the legitimate feeling of bitterness and helplessness stops serving you).
So now that you know where I'm coming from, let’s look at some tips so that (hopefully) your kids don’t find themselves missing out on the opportunity to see the awesomeness in others (and for others to see the awesomeness in your kid)!
1) It would be really helpful to, early on, sit down with your kid and talk about how what they’re going through might be different from what others go through. I know this might not be your first instinct in building their sense of self-worth, because you don’t want them to focus on the fact that they’re “different,” but you can broach it in a way that prepares them and enables confidence in who they are.
Emphasize that neither set of circumstances (your kid(s)’ or their peers’) make either one any better or worse than the other. And why not remind them about the things they’ve learned to do (albeit differently), so that they realize there isn’t just one way to approach life’s obstacles? Riding a bike is riding a bike, whether it’s a hand bike, or one you use your legs to control.
*If there is something that your child learned to do that you might have been told that they wouldn't be able to, consider telling them to show them that nobody can really predict anybody’s potential until they’re given the opportunity to have a go at it first.*
2) If your kid is joining a new school, or going to school for the first time (if it’s feasible) get together with the other parents and teachers beforehand. This way they can learn the ins and outs of your child’s “case,” ask questions, and be better equipped to prepare their kid(s) to meet yours. Even though you might want to focus on the facts of the medical side of your child because you’re working with adults, try not to forget to include things about what your kid can do or LIKES to do - who knows, one of these things might be the basis for a new friendship!
*Some families choose to do this “information session” with the kids in the class on the first day of school, instead of with the parents, so that the kids have the opportunity to ask questions about how they’re really understanding the whole situation. I’ve heard pros and cons to both methods, so it depends on your family and how well your child has been readied to hear the blunt curiosity of his or her classmates. You might actually want to consider a combination of both of these tactics, so that your kid’s peers have time to digest and ask the questions that only kids can get away with with their parents (potentially saving your kid’s feelings), and then giving your child the opportunity to stand up for him or herself and explain what they feel is important about him or her to their class.*
3) I touched on this briefly in the last tip, but please make sure that the school staff is also aware of what your kid can and can’t do, or how they approach tasks differently. Make sure to make it’s clear that staff can talk to you if they have any questions or concerns. I didn’t know that my parents weren’t aware that I was being sent to the office in lieu of gym class until my report card came and there was an “N/A” beside Gym and they asked me why. Things can fall through the cracks without open communication!
4) Validate. Life isn’t always fair, and your kid is learning that (heck, I’M still learning that). Give them the space to grieve what they can’t or have trouble doing (which they might be more aware of thanks to their peers…oy). You’ll have a better sense about this than anyone else, but when he or she is ready to hear it, you can let them know that everybody struggles - some struggles are just more visible than others - and when we struggle we can manifest great strength in learning how to live in a way that works for us, and not comparing ourselves to others. It’s NOT easy, and we aren’t weak for needing to take a physical, emotional or spiritual break. All anyone can do is there best.
5) Give your kid the opportunity to take part in activities that make them feel confident - for me it was Karate. Sometimes you might feel the urge to want to have them focusing on areas that need improvement, but giving them the opportunity to excel is just as important in every aspect (especially socializing with peers). With this confidence they can face their obstacles with a little less fear, and a lot more spirit!
Do you have any tips that you want Phoenix Attitude to share? Let us know!