Sunday, November 27, 2016

Girls in the City: Chicago (Recap)

My husband was traveling almost weekly to his job in New York; we decided to make a trip out of it. My sister lived in Chicago at the the time, so the plan was for me to take the girls there first, and then hit New York, and then home. We dubbed our trip "Girls in the City" (we even made a theme song for it).

I made sure to pack only what I could carry. Meaning, with me, the kids, and the wheelchair (any combination of wheeling, towing, and carrying).

We took the train to Chicago--the girls have never been on a train before! I love the train. (I do not like flying). The staff at Union Station (DC) were so friendly and helpful--especially useful as I have never navigated the train station with a wheelchair before. (Aside: thanks to all the readers here who recommended bringing Elena's wheelchair; it was an absolute must.)

Girls on the Train

Arrived in Chicago!

I had heard the Tall Ships were coming through Lake Michigan on the radio about a year ago and wanted to see them--which was a main reason for this trip. My sister living in the city made the trip easy and fun! We also go to visit some friends, and enjoy the city (even if it rained a bunch).

Girls on a Ship
Ready the Cannons! Spanish Galleon was our favorite ship.
Captain E

Sisters on the Navy Pier

Navigating Chicago was challenging. I decided not to take the El, as I'd never used it before and wasn't sure how to go about it with the chair and Elena's crutches, so we traveled either on foot (lots of walking, but at least it was mostly flat; I was happy to lean on the chair given my bad knee) or by Uber (first time using it; drivers were wonderful!). Elena rode a lot in the chair because we all thought walking those long distances would tire her out once we got to a destination. That was both right and wrong, as we learned once we got to New York.

Center of my Universe (at the Planetarium)

Lake Michigan

We were lucky enough to see some friends while we were there! It was so lovely to visit with the Bs and the Ts! Thanks JB for the donuts (OMG Stan's!) and the good times with the Tribe, especially at the aquarium.

Fountains. Viv got soaked.

Crystal Gardens

The best lessons I learned from this first leg of the trip were: trains are (still) fantastic, always bring the wheelchair, Uber is great, Chicago food is amazing (I already knew that), and be sure to hang out with people who know the city if you can. Everyone we met was very kind. When Chicago weather is good, there is a lot to do and explore.  And walking 3-7 miles per day hauling everything with a bad knee is rough.

Finding the Cupcake ATM was probably Viv's favorite part. Can you tell?

Huge thanks to Aunt Kate, who was our guide and helper throughout the city, as well as The Tribe, who knows how to navigate with kids/equipment!

Thursday, October 27, 2016

Summer Recap: Beach!

Summer recap time! We had a great time at the beach again this year. The biggest difference was my mobility; my knee is (not all the way) better, and I can carry and move in the sand and surf (a little).

Elena is taller now, and better able to navigate sand and surf. We rented a beach on the water, which means that Elena can get to and from the beach on her own (if we are off the beach, she needs a ride in a car or wagon).

Elena and Vivian loved "wave jumping", where they launch themselves over/into oncoming shallow waves. Elena did this by herself this year! She typically launches herself off her strong leg (left)--which can make for a very tiring, sore leg after a lot of waves.

Preparing for wave launch

We built sandcastles (the "figure 8 castle didn't quite turn out), hunted for shells (lots of shell crafting this year!), playing in the waves and catching little fish in the surf. Vivian was very interested in catching her own fish (with a little net, as opposed to the cast net the grown-ups were using) and she was hugely successful! Elena even caught a few little fish with the net and one crutch! Elena was almost entirely independent while moving in/on the sand this year (some falls, but no bad ones as there really weren't many shells on the beach).

Wave rider
Beach cuties
Figure 8
Fish pond

Viv is REALLY excited she caught a fish!

The other big event was we decided to go deep-sea fishing (half day trip). I went when I was a little girl with my brother and father, and it was...memorable. We didn't have the best time--big boat, my brother and father we seasick, I didn't catch anything and was really whiny about it. My mother stayed on shore with my very young sister.

This year, we tried something different: a chartered boat. Mom and my sister wanted to go, and then our immediate family. We were all excited about all the fish we were going to catch. Jason kept talking about how great it was going to be...I kept telling him to replace "great" with "memorable". The weather looked good.

The morning of our arrival the weather turned. The captain told us it was still average swells, but he lied; we had to move from our intended fishing spot b/c the sea was too rough, and settled on a different location where the average swell was 8 feet high. 

As a precaution, my sister and mother and I took dramamine. I thought about giving some to the kids, but remembered my last trip I wasn't seasick, and hoped that kids were less susceptible. WRONG. 

Viv was sick on the way out; she is a very well behaved sick person, so she managed to keep it together. Elena was next, once we stopped and the boat started rocking. Jason was next. The Dramamine Ladies kept it together; barely. I felt terrible, my sister didn't feel so great but was catching a lot of fish, and mom just clutched the side of the boat and prayed that we would go home soon. 

We fished for less than half an hour. It was that bad. BUT, we got this gem of a picture (thanks Jason!) which makes me crack up every time I see it. 

Deep Sea Fishing: Memorable edition

Amberjack dinner!

Once we recovered from our fishing expedition, we had a few more days on the beach. Elena moved pretty well, using her old pair of crutches (rusted shut, so I put some PVC pipe extensions on the bottom). We made sure to do lots of stretching and resting after being in the sun/surf all day.

Beach combing
Mermaid! With shell tiara!


 It was so nice to be at the beach with family. We miss all of you!

Tuesday, August 16, 2016

Swim Team

We've been at the pool a lot this summer. A lot.

Last year, I was approached by an official from our local swim team asking if Elena wanted to join. It was a very thoughtful invitation; a lot of kids from the elementary school are on the swim team. I declined; last year, Elena was not safe in the pool.

We pursued swimming with purpose this year. We found a new swim instructor. Elena needed private lessons, which are more expensive; I actually secured funds through a community initiative program to pay for her lessons until the start of summer. The intention was for Elena to make enough progress to be safe in the water--meaning, if she were to land in water, she could swim up to the surface, look around, find a water exit, and make it to a safe spot (edge of the pool/standing depth).

My clandestine goal for Elena was once she could accomplish the above criteria, she would be able to 1) pass the swim test at the local water park, 2) ride the slide (mostly), and 3) be safe should someone toss her into/around the pool, just like a lot of the smaller kids enjoy.  I figured, if she had no interest in joining the swim team, she could at least try to enjoy a day at a waterpark. She and Vivian could be together (Viv passed the test last year).

Elena took private swim lessons, twice a week, for close to three months. She loves her instructor Lori. They worked in the therapy (warm) pool, with emphasis on kicking, reaching (stroke mechanics), head placement, diving for objects and "flippy-doos"--where Lori would grab Elena, flip her (in a random direction underwater) and E would swim to the surface and back float. These were great drills in preparation for summer pool fun.

After a while, Elena started to get too hot working in the warm pool, and asked to start working in the lap pool (cold water). She started swimming across the pool. I asked her if she wanted to join the swim team. After some convincing, she and Vivian both decided to join.

I spoke with the head coach, Eric, prior to the kids joining the team. He said he'd never had a child with a physical disability before, but he was ready to learn and to help Elena become a better swimmer and enjoy her time on the team. His assistant coaches were high school students, and every one of them was wonderful.

Elena and Vivian both practiced with the 8-and-under group. Vivian is a decent swimmer, but not terribly competitive. Elena wanted to practice with her age group (11-12), but knew that the 8-and-under group was already quite challenging, and agreed it was the best fit. We were out of town for a few weeks during the season; when we were here, they practiced 4 times a week and participated in the weekly meet.

Nervous Viv

My plan was for Vivian to compete with her age group. Elena wanted to compete with her age group too; I wasn't sure if she could finish a 50-meter swim and still feel successful, so we were planning on having Elena start at the opposite side of the pool and swim 25m while her peers swam 50m. She would start in the water, instead of dive; this is not unusual--sometimes even required for all swimmers if the pool is shallow. Elena was always to swim in the edge lane (in case she needed a wall or assistance). Elena liked this plan...until her first meet. An away meet--the only meet in a 50 meter length pool.

Elena was nervous but confident. She said she wanted to swim the 50m.

Coach Julie helping E get ready for her first ever Freestyle

Her first event, 50m freestyle, took her more than three times as long as other swimmers. She took breaks on the lane line, but never pulled on it for advantage. By the time she made it to the other side, the entire pool was cheering for her--our team, the opposing team, coaches, officials, parents--everyone.


She was so proud of herself...and told me that she knew she could do it, and she'd be sticking with 50m events (the distance for her age range) because she wanted that ribbon.

Not only did she get a fistful of ribbons...she improved her times every single meet. She only competed in freestyle and backstroke--but, she actually has a legal butterfly and breaststroke! Currently, they are not terribly efficient so she can't finish a legal 50m swim...yet.

Vivian finished with quite a few ribbons herself, including a few heat winners! Both girls were avid cheerleaders for their team and had a great time!

When parents told me that the swim team was a supportive, fun, inclusive environment, I never expected an experience like this. They are incredible.

KWST, thank you so much for your support and encouragement, enthusiasm and inclusion. 

We were approached by the local news if they could do a story; Elena agreed. Here's the spot.

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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.