Wednesday, June 22, 2016

Tough Mudder

Jason signed up to do a grueling mud run, the Tough Mudder this year. The girls and I went to watch; it was a lot of walking on a very, VERY hot day. I served as pack mule, traveling concession, portable bank, photographer and occasional human transport. We managed to catch a ride twice with EMS on their carts; most of the time we were on foot, watching and cheering.

It was a 95 degrees and shadeless for most of the way. I keep the kids hydrated and busy. Elena did tons of walking; Vivian tired quickly and I managed to carry her on my back a while (very hard with my bad knee). Jason did a terrific job, and we managed to watch him several times on the 10+ mile course.

The evening before the race, the kids decided to do the mini mudder, a kid-centric mud obstacle race. This was good timing for Elena; she just got new braces and shoes, so we had her old pair that were ready for one last use. We had her wear her kiddiegaits with her old braces and shoes, and figured I'd scrub the carbon fiber clean after the race.

Monkey Viv

The officials were very accomodating--although the really didn't have to be. Vivian was brave and strong, and had an awesome time on her own and helping/being helped by others. Elena tackled the obstacles with determination and strong will--it was as if everything she learned at PT these many years was in preparation for this. She used her crutches to get through anything she didn't have to crawl/climb through, and gave them to Jason to hold when she didn't need them. It was AWESOME. The kids had a great time. 


The course was four laps, to complete one mile. Elena completed one, and did every obstacle on her own--except the pipe climb and the monkey bars. It was easier for me to get pictures of Vivian, as I had more opportunities with her laps. 

Mud Pits

Helping Hands as E goes up the pipe

Viv grabs hold after a running start

Mud crawl after tube slide

Both girls were so proud of themselves, and they had such fun! All of us were an exhausted, dirty, muddy, exhilarated bunch!


Tuesday, June 14, 2016

5th Grade Recap and Graduation

The 5th grade finale was a whirlwind time…so much going on, I was pretty exhausted and didn't have energy to write.

Elena had a few goals for herself for fifth grade; they were all academic. She mastered her times tables (she really wanted to do that) and we managed a pretty good routine related to schoolwork, being active, and getting rest.

I didn't visit 5th grade very often (I volunteered in Vivian's class quite a bit). Mostly I didn't b/c the kids were all pretty busy and needed less parent intervention; I decided it was important for me to be as "hands off" as possible with Elena in school. I think she appreciated that.

She was more independent in general; this was the only year she did not have an aide. Sure, there were people who helped E in the lunchroom (if needed) and on/off the bus, and at field trips--but Elena was mainly on her own, and did well. If I was concerned about her being included (or excluded), or feeling upset about how she was doing physically…any time I checked in on E at school I was pleasantly surprised. Every time. She would be working in a group, or running around in PE trying to tag someone, or sitting at lunch with friends, or playing four-square with one crutch at recess with the rest of the kids, taking turns just like them. I can't say enough how thankful I am for this school, these teachers, these students.

Elena took her SOL tests (state mandated Standard of Learning; for the non-Americans reading, these tests are a hotly contested topic) on paper this year instead of online (last year it was a mix). Her teacher recommended paper-pencil accommodation; both Elena and I agreed this was a good idea. She had extra time (really didn't take it) and mandated breaks. Elena hated the tests, but seemed to have a decent attitude and was relatively calm about taking them (that's a win!). I still don't know if she passed them (scoring takes longer with this accommodation, but I'm still not sure how to get the results).

Elena's favorite academic subjects are science and history. She does not like math, and this is our hardest subject right now (but we have a good homework ritual). We had a tutor last year but lost him with scheduling conflicts. Elena is also a slow reader (especially with books she does not like). She has worked very hard, and her grades showed it throughout the year, ending with straight As. We are so very proud.

Elena's big IEP goals were related to keeping up physically with her peers (getting to/from classes, being swift and safe on the few stairs that are in the building, sitting properly to best use her hands, carrying a lunch tray, interacting in PE). I took a great video of E carrying her lunch tray (with her lunch on it) (no crutches) in a crowded lunchroom and navigating perfectly.

She stood and sang with her peers during her (long, hot) 5th grade choral concert. She took a seat in a chair (the only one) while she played the recorder part of the concert, and then afterwards went right back up with her peers (it was perfect). She helped wash cars with one crutch during the staff car wash and got sprayed with water with everyone else; the only difference begin she wore her shoes and I helped her dry off and change out of her wet clothes (and soaked socks). She joined the drama club again this year, and for the first time had a few costume changes. I stayed away from backstage this year and just enjoyed the show.

Cropped from an ensemble Jungle Book song/dance number

On graduation day, she walked (and kept up) with her paired classmate during the ceremony. Vivian was part of the ceremony too, a lovely addition to a beautiful occasion. Elena navigated the steps and seats, and when it was her turn to get her diploma, walked down/over and shook hands and held her certificate.

Our graduate

Just like everyone else.

What a great year.

Wednesday, June 1, 2016

5th Grade Field Trip: The Good, the Bad, and the Wheelchair

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.