Summer break is over and what a summer it was. Drew attended an away-from-home camp at the Camp for Courageous Kids for the first time. He participated in a couple of day camps at a nearby children’s museum. We visited Florida for a follow-up with Dr. Paley. We were lucky to be 30 minutes or less of a drive from the path of totality during the solar eclipse which we took advantage of by crashing a friend’s place for an eclipse themed grillout. And, he had a minor surgery in Nashville.
This summer has been enlightening and presented Drew, a maturing kid, with some new situations to contend with. Previous summers were more “medically” centered so focus was only on surgery or rehab. But, this summer, having nothing on docket, he got to act like a normal kid and all of the normal kid dilemmas came with that.
Drew is probably one of the most sociable, open and uninhibited kids I know. Drew is not shy about approaching new kids to form a friendship. If there is a kid – male, female, his age, older – within earshot, Drew will engage them in conversation immediately without any insecurity. Meanwhile, I find it hard to even make eye contact with the cashier at Walmart who has perfectly made-up hair and all blemishes expertly concealed (or does she just have naturally perfect skin and manageable hair furthering my resistance to feel I’m good enough to even breathe the same air as her.) So, I admire Drew for his confidence and am thankful we live in a community that is so welcoming of Drew.
Drew has many friends and upon one meeting or one conversation with a new kid, this new kid is immediately referred to as, “My friend, (x)” whenever they are brought up. Every kid has a title that immediately precedes their name: “My cousin…”, “My friend…” etc. Drew knows no stranger. And he knows no acquaintances. Drew is friends with all.
Drew enjoys playing video games, playing on his tablet and enjoys the occasional art/craft project, but he’s never as happy as when he’s playing with friends. He will play with them for H-O-U-R-S and his day is completely centered around his friends. Which, don’t get me wrong, I’m so thankful he has these meaningful connections with his peers, but it does make for awkward situations.
First, it’s almost impossible for me to actually leave the our property for any reason lest he miss the chance to join his friends in any activities. What if they come outside while we’re away?!? Just a simple errand to the grocery store has the potential to bring an abrupt halt to the spinning of the Earth bringing about the end of the world simply because Drew was robbed of 30 minutes of friends.
It turns into an argument. “Can I just stay heeeeeere while you goooooo?!?” Which is one of the biggest downfalls of his “disabilities”. Shoot, when I was seven-eight, my brother and I stayed home alone quite a bit (which was common in the 80’s – not like it is now when sancti-mommies crucify others for any behaviors they deem unacceptable). I personally wouldn’t have any problem leaving myself-at-that-age at home alone while I drove to the store two miles away for a short list of groceries. I have left Drew in the house alone a handful of times when I was going to be gone 10 minutes or less, but any longer than that and he may have to use the bathroom, he may fall while walking, he wouldn’t be able to exit the house in case of an emergency (I lock the doors)….perhaps I am being a bit too paranoid, but when you have a child who, strong and independent as they are, STILL has a significant need for adult intervention, it’s not as easy popping on a movie and taking off.
Second, Drew becomes a stalker of sorts and even recruits me in his “closely watch the neighbor’s every movement” activities to spot an opportunity to swoop in and play. I feel like the creepy neighbor constantly peeking out of the blinds and giving Drew an account of which vehicles are present. When we go outside on our own, Drew not-so-subtly peers through their windows and will even park his chair facing the house and just stare longingly trying to detect movement from within. I have to holler at Drew: “Drew! Quit being weird!” But, is it my own social anxiety that is making me overly sensitive to appearing to be desperate or weird?!? Drew doesn’t seem to mind it!
It’s also presented some new situations that has put me in some awkward situations. For example, these friends being upper elementary school and middle school age, spend a lot of time on their bikes and have invited Drew to tag along with them just around the block in his wheelchair. Drew has never left our property without myself or Daddy (or another close adult) so it was a source of anxiety to me to let him go. The sidewalks aren’t in the best shape. In fact, just 100 feet from our house is a little divot Drew has gotten hung up in before trying to pass. And, a couple of years ago, Drew absent-mindedly almost backed into a culvert which would have turned his wheelchair over with him strapped in had it fallen into the crevice. Now, Drew has aged and matured since then so surely he’d not make a similar mistake, right?
In the end, I did let him go around the block with a little detour through our neighbor’s yard in order to avoid the divot. I felt a little at ease knowing that if Drew got into a pickle, the other boys would quickly return for my assistance. Even though they wouldn’t cross any streets and Drew has made this exact same trip with Daddy or me with zero issues, I still anxiously chewed my fingernails until I saw him bumping along through our neighbor’s yard having completed the trip. The first solo trip was a success!
Having been proud and confident at his success, his next goal was to go to the elementary school with the group. This meant they’d have to cross two major highways (in town limits – with marked crosswalks and Cross/Do not cross guides). I didn’t feel great about the idea. It was three blocks away. And, I try my hardest to treat Drew as a normal kid, but having a power wheelchair and mobility limitations, you can’t help but think of all of the things that could go wrong. As I balked in skepticism and expressed my deep apprehension about the trip, Drew BEGGED to go. And, his friends stared expectantly at the mom who they perceived as being “too clingy” and baby-ing her son too much. The thought of embarrassing Drew or making Drew look weak in front of his friends begged me to trust him and let him go.
Finally, with the agreement that they other boys would call/text me when they safely arrived at the school, through gritted teeth, I relented and down the road they went. Less than 10 minutes later – not long enough to have even reached the end of our block – I see the boys return to the driveway. Their plans changed and they decided to return home. Plus, the arm of Drew’s wheelchair had become dislodged from the plate. I’d never been so thankful that something on Drew’s wheelchair broke! (which I have since fixed)
None-the-less, I’m struggling letting Drew grow up and do things on his own like this. He’s no longer a baby, or a toddler, or a child. He’s still a kid, but kids his age are doing those mature things such as leaving the property without adult supervision. And, as much as *I* struggle with it, I know that he is probably coming to terms with his own limitations due to his syndrome that restrict these standard privileges that other kids enjoy unquestionably. I know it has to be hard for him to watch his friends freely go around the block or ride their bikes across highways and out of reach of their parents without a second thought. It has to be times like this that make his limb differences and mobility limitations especially painful for him to accept. And, I die a little bit inside each time I see him hang his head in disappointment because I keep him on a shorter leash.
Growing up and letting go isn’t easy for any parent, I imagine, but special needs parents have additional stress to endure.
Speaking of growing up…
Even though I purchased a collection of school clothes a month ago, Drew seems to already have experience a growth spurt so looks like there may be some more school shopping in our future. This adds a ton of work as most of his clothes have to be altered. Of course, long sleeves have to be cut and sometimes shorts are too long on him so they have to be hemmed. I spent the last month altering what I
had already purchased including six pairs of shorts, one long-sleeved jacket and a long-sleeved hoodie. This makes for pretty tense feelings as I, the amateur self-taught seamstress, have to cut into the fabric making it ineligible to be returned/exchanged if I muck it up! And, all of that work put into them, I can already tell this will be the last year he wears them!
And, Drew has already grown so much that the seat on his bike that he’s had for two months has to be adjusted. Too bad I can’t figure out which of the 150 joints to adjust! Hopefully I still have the manual lying around here somewhere…
Additionally, Drew has started to increase his independence. He has opinions now on clothes to buy as well as wear for the day. So, with that in mind, Daddy and I went shopping for a special “closet” for him to peruse outfit options and select from for himself. I’m a little stuck trying to think of a solution to help him at least put his own shirt on easily. His shorts will be a different story as his braces make shorts difficult to pull up as they catch on all of the apparatus even for us.
He also asked recently to start bathing himself. He won’t be 100% independent in that area as he needs help getting in and out of the tub, but I suppose some browsing on Amazon is called for for special devices so he can scrub from head to toe.
He now insists on opening the car door to enter and exit vehicles and is adamant that he retrieve his drink from the refrigerator each time.
Drew started his 4th grade school year and with his next minor leg surgery that we managed to schedule on fall break, I stated my ambitious goal of having one full year of perfect attendance. Well, that was shot within the very first week of school.
First, I have been working on getting Drew a new hip piece that would allow for quick and easy attachment and detachment for use only at night per Dr. Paley’s instructions. We have a routine orthotist here in Kentucky, but my inquiries about something more innovative were met with “This is the go-to and there’s nothing out there that would do what you want it to do” so I figured I would try a larger more renowned orthotic clinic to see if they had access to anything new to the market. I was happy to have arranged for an appointment right before school started to receive the hip piece they were kind enough to order without first seeing Drew.
So, we arrived and within the first two minutes of introducing ourselves, the technician explained that they did not know his braces were bilateral (on both legs) and had ordered something that would only work on a single-leg brace. Silly me had not thought to mention this critical fact. So, before we even got started, we made arrangements to return to Louisville on a later date so they can order a different piece. I was disappointed to have had made such a lengthy trip to Louisville (2.5 hours) with two boys only to be turned away before we even made it to the exam room. And, of course, this meant that Drew would have no choice but to miss a day of school when we returned.
So, that’s what we did. Drew didn’t go to school and Drew and I trekked back to Louisville (this time, we were lucky that Daddy was home so I didn’t have to drag Holden around with us.) Only, once more right before entering the exam room, the technician asked for the current hip piece so he can take it to the lab and get started. I stared at him blankly as I had left the hip piece back at home, 2.5 hours away, because I thought we were getting a whole new hip piece and not accessories to add to the existing hip piece. The technician let out a defeated sigh and explanation that it is, in fact, something that is to be added to the existing hip piece and without it….
So, yet ANOTHER trip to Louisville wasted and for no reason at all, Drew’s “perfect attendance” is out of the realm of possibility. Further, this means that he’ll have to miss ANOTHER day of school when, for the THIRD time, we drive to Louisville (WITH THE HIP PIECE). Siiiiiiiiigh….
I had also forgotten about a standing appointment with Drew’s ENT doctor at Vanderbilt in Nashville (three hours away) for a routine follow-up so Drew had to miss another day of school. Turns out, Drew’s left ear tube, placed in 2014, needs to be removed. Surgically. So guess what? Yup. Another day of school missed for surgery. And also guess what?!? He’ll have to go for ANOTHER follow-up for a hearing test and exam to determine the next steps and you know what he’s going to miss that day?!?
Whatever. What was I thinking anticipating perfect attendance for a boy with so many medical needs?!?
Drew is also very excited to rejoin the soccer league again this year. He played on the YMCA soccer league in 2015 and had a blast. But, last year, due to his surgeries and rehab he was unable to participate. This year, however, he’s fully rehabilitated so he’s been counting the weeks until soccer season which has just begun.
Somehow, I got roped into being a coach this year, something I’m apprehensive about because I have a four-year-old ball and chain I’ll have to contend with, but Drew is very excited having “Mom” as his coach. Aside from the anxiety of having trustworthy and reliable care for Holden, I’m a little excited too.
Our first task as coaches was to draft the teams which required us to rate each of the players on athleticism and draft equal teams of top-rated players, age and genders. Unfortunately, Drew was attendance in this meeting with me due to Daddy being at work so as we went down the list discussing each kid’s soccer experience or sports experience in general, we came to Drew who, though made an excellent goalie last time and effective member of defense, his physical limitations do impact his overall performance on the field.
Not wanting to be biased or even in ignorant denial the challenges he’d bring to being on the field, I gave Drew a lower ranking. I wish I didn’t have to say it in his presence, but he seemed to understand my reasoning. None-the-less, I died a little bit. I strongly encouraged him that based on defense and goalie, I would have rated him much higher, but because the limited positions he could play on the field, that I had to take that into consideration. I hope I did the right thing.
Drew seemed to be OK with it and is still very excited to play soccer. I hope I can make it work being the coach. So, I should end this post so I can go study up on the rules and research effective coaching skills!
Coming up next month is another trip to West Palm Beach, this time to have the hardware removed from each leg. Pretty thankful this surgery wasn’t scheduled this month as Hurricane Irma may have really mucked those plans up! I really hope all of the Paley families and staff make it out of the area safely!