I chaperoned a field trip for the 5th grade last week; when I do this, it is more or less understood that I will be helping Elena. I try to be in the background (sometimes it's not possible) and try to let Elena be my guide.
The kids rode a charter bus, and chaperones rode by car; I brought the wheelchair with me. It was a hot day, and I had never been to our destination(s) so I wasn't sure what to expect. E's teacher typically prepares me well for field trips--but every one is a learning experience, and no one can prepare for everything. Still, when E's teacher is around she is very good at including Elena, having her lead her own way, and keeping her as close to the group as possible. I really appreciate that she looks out for E.
We separated into two main groups; E's teacher was in "A", and we were in "B". A random assortment of 5th graders (which is fine), and lots of parent chaperones (which is great). The kids got off the bus and we immediately went to our first destination, outside, a short walk across the street/bridge overlooking the river ("short distance" is relative, of course).
I immediately noticed there was not a bathroom break after the hour+ bus ride.
I asked Elena if she needed to go, she shook her head no and she started walking. She walked, stood, and when she got tired, she rode in the chair. It was a good fit. The third stop, I could tell that she needed to go to the bathroom. Why does she wait until we are far away? I had to wheel her back to the building, up the elevator to the women's restroom. By the time we got back, the kids were heading back our way--not a huge big deal, but I wish she would have taken my advice and gone before the group headed out the first time. We meet up with the group, and the guide tells me they will be going around the back of the building and for use to take the elevator up to the 2nd floor (where we just were) and they would meet us inside. I asked THREE TIMES which building--they all had names, and the guide just kept pointing to "the tall one" and he would not repeat the building name after me to confirm (really, how hard is that?). We headed to the buildings, trying to make sure we wouldn't be late to meet the rest of our group.
We go upstairs. There is NO ONE.
We walk around--I look outside the building's back door--there is NO TRACE of the group. Honestly, I don't know how you lose 25 loud kids and a guide, but I did. I figured I was in the wrong building, or they went a lot further away than the guide told me. So we went back downstairs, to ask the 10+ staff members who were hanging around there. They didn't know where they were either. With Elena nearly in tears, I nearly headed for the next building over…but thought that the 2nd floor on those were all outside, and the guide had said "inside the 2nd floor" so we headed back up. We have been searching for this group for over 10 minutes. We go back to the first place we checked, and finally we see some students heading to the door. E walks outside to see them, and I storm over to the guide--who is standing by himself in the shade. And I tried to start off civil, but I was super pissed off that Elena was left out. He actually told us "we didn't miss anything", and then I just about blew my top--she did miss things (I saw pictures later) and we were left behind. He knew E could walk out of her chair, he saw her do it, she was standing closest to him while he spoke in the beginning of the tour--it wouldn't have taken any effort to have him tell us where to meet him outside on the second floor. But it didn't matter to him--before, or after my comments, that Elena was left out. I WAS LIVID.
After that the tour switched guides (nothing having to do with my little chat, it was already part of the plan) and he was wonderful while he told us all about Civil War Cannons. They had a group exercise where they pretended to be a 7-man cannon team, and he had no issues when Elena was in a group. It was refreshing to see how well it can be done after such a rocky start.
The rest of the visit at that site was pretty tame--lots of Elena and me, walking or riding. Elena's classmates were giggling and traveling in packs, as they do; when E walks with her crutches she is typically not in a pack b/c she doesn't fit, or doesn't fit in (not sure which). Sometimes that is hard to witness, but as far as I can tell her classmates are kind and friendly--but when out of school, Elena has a hard time hanging with a group. It's an objective observation.
The second destination was a science museum. We broke into small groups. The museum was fantastic; BUT, a lot of the interactive exhibits had a huge physical component (running, walking a tightrope, feats of strength, jumping, etc.). Elena and I did these things to the best of our ability--again, mainly just us two (but not always). She was typically walking with her crutches, unless we were across the museum and had to meet up with the rest of the group. Overall, it worked well, except for one occasion.
All the students were going to meet up at the end of the trip to watch an imax movie. We were approached by staff that suggested we enter the theater at the top (wheelchair access) rather than at the bottom, where there are stairs going up to the three groups of seatings. The guide said the rest of the students would enter at the bottom and fill in the two outside seating areas (the middle reserved for other patrons not associated with our field trip). Sounded good.
Right before the movie was supposed to start, two girls were missing from my small group of six girls. We had three adults watching 6 kids; I was full-time on Elena, which was assumed by all of us, but I should have been keeping an eye on other kids too and I did not do that well. The girls knew they were to check in with us, and stay in the same area (we all assumed they just got sidetracked or forgot). There were at least 5 adults looking for them over 4 floors of museum. After 10 (?) minutes we finally found them, hanging out with friends from another group--glad they were fine (we figured that was what happened), and then we all went to the movie. But I was really ticked off. If two girls wander off, the entire student body came to a halt until we were all together--but if Elena is behind, no one notices. (I do understand that they know she is safe with an adult, and this wasn't necessarily the case with the two other girls. I do. I can't help being extra sensitive.)
Anyway, the students approach the theater, Elena and I enter from the top. We went to the leftmost rows of seats, as they were closest to the wheelchair entrance/wheelchair parking area.
The students came in at the bottom--and they all sat on the rightmost set of seats, closest to the entrance. All of her friends were on the other side. So, we decided to move closer--and by the time we got there, every single seat next to students was taken. If Elena wanted to sit near the student body, she'd be sitting next to chaperones. She nearly burst into tears. I was upset too. As her parent and advocate, I was really disappointed in myself that this happened while I was 'on watch'. I'm supposed to be thinking ahead…I let her down.
The truth is, she could have walked into the theater with the rest of the students and walked up the steps and sat with her school friends. It wouldn't have been weird, and it would have been fine. But because we took the wheelchair option (which I realize is not an "option" for everyone) Elena was excluded from the group. It hurt.
I figured it would be better on the ride home--I had carpooled with other field trip parents, and we were going to take our kids home instead of having them ride the bus. I figured the three girls would be laughing and giggling on the way home, making any uncomfortableness that Elena might have had that day fade away. Only then did I realize that an additional girl was riding home in the van…and as they piled in, the three girls went to the backseat (natural order of things, we were last to the car) and Elena sat in the middle row. Away from the giggles and jokes. She tried to engage in the conversation, but she was left out…again. I nearly broke down in tears on the way home.
A special needs parent might have realized that if any of the other girls was in the middle row, the four of them would have engaged together--b/c it's harder for E to turn around, she's much smaller than the others and gets swallowed in the seat. And it's no knock on the other kids or parents--they are nice people, and unless your kid is like mine, you don't realize these things are happening. It hurt Elena's feelings, being left out again, and it hurt my heart that I didn't prevent it.
After we got home, Elena and I had a few conversations about the trip (I waited for her to start talking--I wasn't going to bring up any issues she hadn't noticed). We comforted each other (probably more of Elena comforting me, to be truthful). I decided, as much as I/we was upset about these things--there is always something to be learned out of a negative experience.
Here is my list of lessons from this experience:
1. Make E try the bathroom before the group mobilizes.
2. Wheelchair accommodations that remove her from the group impede her chances of social interaction. If possible, have Elena stay with the group and use the chair afterwards. This is important as I want the wheelchair to have a possible connotation at all costs--and this was our first negative experience.
3. Bring backpack (lunch, etc) with the chair (or chaperone, or E wears something small) to help save time going to/from the bus to save time/effort during lunchtime.
4. Have E wear something with accessible pockets (small backpack, purse, crutch pocket, vest, etc.) so she can carry money, water bottle, etc. (She left it all on the bus b/c that's what the other kids were doing, but most of them had purses or pockets. E did not on this day.)
5. Make plans to talk to the tour guides personally (if I am chaperone, which I plan on doing for most of these types of trips) to determine beforehand when/if E can stay with the group, and when to separate with a handicap accessible route. Have a plan to meet up as soon as possible.
I'd appreciate any other insights you might have about field trips. Even though the trip had some uncomfortable moments, I'm glad we had the opportunity to learn these lessons before middle school.
Wednesday, June 1, 2016
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3 comments:
That sounds like a busy and stressful day. D is only in kindergarten, but I've seen some of the same things you mentioned. It's pretty easy to fall behind when you're slower and be unintentionally excluded. For now we've mitigated the carpooling issue with me doing the driving and setting up the minivan to seat the kid where I want them (him center of the three boys, etc.), but I can see how that will not work as well when they're not in boosters anymore.
Thank you so much for sharing so much. I'm sure it's not easy, but I know I really appreciate hearing your stories and find great advice to use when thinking about D in the future.
Hi Amy,
I can relate to these experiences! Field trip accessibility can be such a challenge, and it's never fun to feel left out, even if it's unintentional!
I love the lessons you took away from this experience. For a small, lightweight backpack, have you ever tried a cloth knapsack for E? I have spastic diplegia too and I've had awesome luck with a little quilted Vera Bradley-esque knapsack that can be used as a purse but also has little backpack straps. It has been soooo helpful for me, even for smaller outings like the mall with my friends. It's unobtrusive, stylish, it helps keep my hands free, and it's great for carrying around a snack/lunch and a water bottle...and a bunch of my (non-CP) friends bought something similar after they saw how useful mine was!
Also - I'm not sure how this would work out for you logistically, but here's what worked for me on field trips. Like you, my mom usually chaperoned our trips so that she could help me. I'm a triplet, so my brothers and I kind of made up our own group, but we always had one or two additional classmates in our group as well, which really helped me feel less isolated. For example, in sixth grade, we went on a field trip to New York City, and my mom was in charge of my brothers and me as well as two of our friends. The six of us had such an AWESOME time, and there were times when we had to break away from the main group for accessibility reasons -- and we got left behind on a tour because I was having trouble keeping up -- but it was totally fine because we all had each other. If it wouldn't be too overwhelming for you, maybe in the future you could ask to look after E plus a couple other classmates (preferably friends of hers if possible) so that she won't feel so isolated from her peers? Just a thought. :)
We must be in sync with each other, because I *just* wrote a post about my own field trip difficulties as a college student with CP going solo on a field trip and STILL battling accessibility issues! Accessibility is HARD sometimes...how I wish there was an easy fix! If you want to read about it, I've linked it here: http://transcendingcp.blogspot.com/2016/06/the-field-trip-fiasco-when-everything.html
If you ever have any questions about middle school with CP or anything else or you'd like to talk more, please feel free to send me an email at transcendingcp@gmail.com. :) I'd be more than happy to help out in any way I can and/or be penpals with Elena if she'd like someone with CP to talk to who's "been there, done that."
I just graduated college (as a neuroscience major, with high honors -- I think CP gave me an advantage as a student of neuroscience because I had a unique connection and personal relationship with a lot of the material we covered)...and I've been following your blog for several years now. I can relate to so many of your experiences! Middle school was a challenge for me (as it is for many, disability or not), but I also met my best friends there - and ten years later we STILL talk every day and go on adventures together. :)
HUGS. I love that you and E talked through your feelings after all this. You are an AWESOME mom, and E's resilience will take her far in life!
About the bathroom issue, during a lot of my grade school years it was not that I waited to use the restroom so much as it was that I could not feel that I had to "go" even though others could tell by my body language that I had to "go". For me I had a very weak bladder and could not feel my pelvis very well. I have CP as well. Perhaps have a PT work on getting her lower body in better alignment to prevent bladder issues? As for walking with crutches for me I have 2 options, go fast like everyone else and be miserable physically, or go slow and actually have the stamina for functioning. Most of the time I choose function over a social interaction and Elena may be doing the same.
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