As you can expect, Drew is quite the curiosity when meeting new kids. It’s not unusual for him to be subject to looks and questions, which is totally understandable. Young kids are naturally curious and polite questions about his arms haven’t been an issue. Drew would casually respond, “I was born this way.” But, other than that, Drew seemed oblivious to his differences. Sometimes so much that I often wondered what his thoughts about his arms were. Was he OK with his arms looking different? Did they ever make him feel bad? But, I never asked instead referring to his positivity and silly rambunctiousness as a sign that his self-esteem was intact.
But, I’ve seen something change in Drew the last couple of months. Several times over the past couple of months, Drew’s arms have grabbed the attention of new kids who will immediately ask Drew about his arms. Now, instead of the casual reply of “I was born this way”, he ignores the kid completely and walks away. And though he seems to move on and forgets the encounter, later, I find Drew lost in his thoughts when the activity dies down and he goes inside his head.
I can understand Drew’s reaction because it must be overwhelming to be immediately bombarded with personal questions about his arms. It must seem like an attack, regardless how polite and casual the kid asked. I imagine being scrutinized so quickly before even learning each other’s names seems nosy. But, seeing him defeated and shutting down makes me worry for the future. His physical appearance seemed to be low priority for so long and it’s just starting to become important to him and we’re 4-5 encounters in what will probably be a lifetime of curious looks and questions and he’s already letting it get to him.
One such encounter happened at a park. The first time, it was a kid who noticed Drew’s short arms and said “They’re like Tyrannosaurus Rex arms”. Drew was really upset by her comments. My mom explanation was, “When you think of the most vicious, most terrifying and strongest dinosaur, the one who is perceived as the king of all dinosaurs, who does everybody think of first? The Tyrannosaurus Rex! Which dinosaur was the star of the Jurassic Park movies because of its badass-ness and became the ultimate hero in Jurassic World beating the much feared enemy? The Tyrannosaurus Rex!”
The second encounter was a younger kid who stood stone-faced staring at Drew with an extended arm and index finger loudly describing Drew’s arms. The boy’s father, upon noticing, immediately rushed in and swooped the child away. A few minutes later, the father walked his kid up to Drew and had him apologize to which Drew thanked him. I also expressed my gratitude to the father for having his son do that.
On the way home, Drew was too quiet and I could tell he was contemplating. I could feel his vibe was off. We talked about it was unfortunate that kids didn’t know tact, but they really were too young to understand the appropriate way to broach the subject and unless they say something mean, he should try to give some leeway and let kids ask why he has short arms. Drew understood, but said it still made him feel bad that people were bringing so much attention to the matter.
And, I can completely understand because as an elementary-school-aged-child-moving-on-to-Jr-High-next-year kid, there is nothing more important to a child this age than fitting in…to not sticking out…to being just like everybody else. I recall back in my school days that a pimple, a freckle, a misplaced hair seemed like the end of the world and would surely be obnoxiously analyzed by every one of my peers. Sticking out was bad.
We talked about ways to respond to unwanted questions. But, in all honesty, I’m totally unsure how to handle it. I’m not the one with the short arms. It is so easy for me to give advice about how HE should handle it, but ultimately, it’s HIM that is constantly being bombarded with attention he doesn’t ask for.
Drew also told me how kids at school, though kind to him, never give him chances when playing sports during recess. Drew described how kids will let him join their team, but if the ball comes to him, nearby kids will always take over and steal the ball, even when it was clearly coming to him. He said, “I can tell they don’t really want me to play. I can tell they think I can’t even kick the ball, but I can. I play soccer, but they always steal the ball from me because of my arms and legs.”
It does make me sad that he is so affected by casual questions because though he does, indeed, look different, he is still so capable of so many things like swimming across a swimming pool, dancing, playing soccer, etc. I tell him that he does all of these things with short arms and none of us long arm people could ever imagine doing without them. He has short arms thus he is better than everybody else because he has half the tools we have and can still do the same things we can do. I was very proud when he smiled gratefully and leaned in for a hug.
But, this doesn’t bode well for the future. Life has been really easy in elementary school with kids so ready to accept him and love him. I always feel such pride when at our local parade, kids from most floats will holler out to Drew and make special sure he gets tossed candy. It warms my heart to see and hear kids protect Drew from danger when jumping in bouncy house: “Watch out for Drew! Give him room! Let him in too!”
I have to admit, I’ve been pretty spoiled and maybe even a little in denial that school will turn bad for Drew. Elementary school is when life is easy for pretty much all of the kids. It’s Jr. High School in which the real bullying and excessive valuing of physical appearance begins. Drew is starting 5th grade in August, one school year away from moving on. In addition, our county has three elementary schools and only one Jr. High School so Drew will be joined by a large number of kids who aren’t quite as accustomed to his situation.
When we were pregnant with Drew, I anticipated a difficult school upbringing and contemplated speaking in an assembly about limb differences and Drew, focusing on the amazing things he can do and answer those curious questions about his arms and legs as a way to break the ice and perhaps win them over with his charm now that we got the weirdness of his arms out of the way. Luckily, the popular fundraising we did for Drew in preparation for his leg surgeries managed to bring awareness to how amazing he was so the kids were already familiar and had lovingly contributed to Drew so when he started school it wasn’t an issue. And, now that Drew is starting to shut down at any attention thrust upon his arms, I’m not sure Drew would even WANT me to do something like that.
Self-esteem is so fragile even for “typical” kids. To this day, I struggle with my physical appearance and want to hide rather than faced it head on. I know it must be even harder for Drew. Currently, is so happy and carefree, the strongest kid I know and to see him shutting down and seeing that seed of self-doubt and shame is absolutely breaking my heart. Of course, being his mom, I think he is the most amazing, best looking, and strongest kid known to man and Drew is already aware of my bias so, like me at his age, doesn’t put a lot of weight in his parents’ opinions. “Mom, you’re SUPPOSED to love me so obviously you think I’m awesome.” Obviously, as parents who dote on him non-stop, we love him. It’s not us he has to win over. We’re easy. It’s his peers that aren’t so naturally inclined to love him.
Raising a child with TAR Syndrome so far has been about outward things: fixing his legs so he can walk, treating conditions and creating a healthy body. But, it’s his emotional state that will soon feature. And, I’m afraid we have little control over that. I think in comparison to walking into a doctor office and doing a surgery, ensuring Drew’s self-esteem and self-worth is going to be the real challenge. And, once a person is broken emotionally, it can be much harder to recover from. The damages are deeper and don’t completely heal. How can I possibly help Drew in this matter? I’m completely lost.
Drew also exasperatingly described how sick he is of hearing kids say, “You’re arms/hands are small.” He’s like, “Uh…duh! It’s my body…clearly I know they are small!” He doesn’t say that out loud, only in his vent sessions to me. He says, “It’s like they don’t think I KNOW my own arms are short. OBVIOUSLY I know” with a deep eye roll. He gets that from me. And, even worse, on several occasions while using his wheelchair, kids have said, “You’re so lucky to get a ride! I wish I didn’t have to walk!” Which Drew hates even more than Captain Obvious. Drew says, “I am NOT lucky! I am not lucky to have to use this wheelchair. I would rather be able to walk really far for as long as I want. I hate it when someone says I’m lucky because I think THEY’RE lucky for not having to have surgery.”
The other day, Drew asked me once again about arm lengthening. Dr. Paley, who has surgically corrected Drew’s legs with external fixators, is also known for arm lengthening, quite a few TAR friends have experienced. I think he’s starting to put some real consideration into lengthening his arms. Luckily, we have a follow-up appointment with Dr. Paley in October so I encouraged Drew to think of any questions he may have. Drew says he isn’t sure he wants to do it or not, and I’ll support him either way, but was just curious. So, we’ll see.
Other than that, life has been pretty routine lately. He’s currently on summer break after finishing 4th grade with all A’s and one B (or two?) He’s made some new friends with neighbors who recently moved in close by. And, next week, he’s going to be visiting a new specialist, an endocrinologist, due to a recent x-ray that revealed “demineralization of bone” aka the start of osteoporosis.
Also, Drew has apparently made his dream come true and started his own YouTube channel. His favorite pastime is following his favorite YouTube stars on his beloved tablet and finally convinced us to allow him to join the YouTube world. You can find him here. He uploads videos on Tuesdays, or as we call them, Drewsdays. So, go give him a Like and subscribe to his channel. Don’t forget to hit that little bell for notifications of new videos!
But, we have lots of activities planned throughout the summer to keep us from getting too stir crazy and bored! Stay tuned!