Friday, December 9, 2016

Middle School: Welcome to 6th grade

This post is behind schedule, but it's nice that I have more of an experience to write about now that it's been a few months since Elena started middle school.

I had a few meetings with her IEP transition team at the end of 5th grade; basically, I met with someone from special ed and her new case manager. We talked about where she was in 5th grade, and they gave some suggestions based on the largest differences between the environments--but they had never met Elena, and I had never toured the new school. The key theme was the difference in size (in the general sense); building, number of students in classes, distance between things, homework load, responsibility, etc. Basically I was being warned about the beast that was middle school--when previously I was worried more about E's self-esteem, making friends, self-advocating for herself, and trying to gain independence. They started brainstorming about all sorts of adaptations for school, without seeing if she would actually need them. Honestly, I was so overwhelmed with our discussion I decided I would just have to wing it as best I could, withe one exception: I was adamant that she have a full-time aide (Elena didn't have one in 5th grade, and she loved it; I figured she may think it was taking a step backward, but I could tell it was non-negotiable).

Here's the good part: overall, her experience is very positive. I organized a meeting prior to school with all her teachers to try to prime them about Elena, with the key undertone of working together to help her use her time wisely. I could feel the teachers rolling their eyes thinking "here's another mom freaking out about homework", but when I put her situation in different terms, they started to listen. I said "as a general rule, it takes Elena four times as long to do things as other people. To do ALL THINGS--get dressed, brush her teeth, eat, go down steps, get in a car, write, read, open a backpack--ALL THINGS". Time is a precious resource to us. This means that every minute wasted out of frustration, or being idle, or spent on a worthless adaptation affects her life in a huge way--because with Elena, there is no "hurrying up". In order to make this work, I needed homework given in advance in order for us to ensure it would be turned in on time; she has extra time for work prescribed in her IEP (but I expect her to be responsible for her work as close to on time as possible). I could tell that most of her team was listening with intent--which was pretty good, as she has a lot of teachers.

And speaking of time, the only way to carve out some extra time was for her to get a ride to school. The county refused my request for private transport; I'm still working on this, but for now I am happy to drive her. It takes 8 minutes instead of 30+ each way and I get to recap her day with her aide. This is only really an issue 2 out of 5 days of the week; E has appointments right after school 3 days a week (special exercise program for biking, psychology, PT). School starts late here, and they get out late (4pm); this means there isn't that much time to do something fun/have appointments, eat, and do homework before bedtime (~830 pm--E needs a lot of rest).

Her aide is very helpful. She helps her organize her homework (there is so much issued and turned in online, it's mind-boggling), and carries her backpack/lunch when she is tired or her posture is too poor to manage extra weight. Elena typically has an extreme crouch situation in the fall because of the demands of school (lots of sitting, etc.) and this year is no exception. Her crouch is pretty bad, but objectively I think I've seen worse. Her backpack is heavy (I'm working with the Assistive Technology team to try to help this) but her classes are close to each other, and she only needs it in the first three periods of the day, when her energy is good. She wants to carry her own things and be self-sufficient--but she speaks up when she needs help because she feels unsafe or she is tired. In general, her teachers know I want her space to be accessible but also within the working group (socialization is a key element I stress with her educators). Her aide is close by, but tries to stay "invisible" so Elena can fit in as best she can. She leaves her classes a little early so she can navigate the hallways before they fill with students. The hardest times to manage are lunch (the lunchroom is loud, lots of people, and lots of fall hazards and a short time to eat)(she has designated snacktimes so she has enough opportunity to eat) and gym (outside fields are FAR away, inside gym is packed, needs Adaptive P.E. or other help).

Aside from all that, I wanted Elena to find something to enjoy, with peers, and make friends. I let her team know that I would make this a priority and try to help manage everything else. Because school gets out late, a lot of activities take place before the starting bell. Elena joined the art club, which she likes, and auditioned for a special choral group. Honor Choir meets twice a week before school; she loves it.

Managing the kids at school and ensuring downtime is very time consuming for me. Much more than I's a full-time job. It's much more difficult than elementary school. Time crunches/conflicts frequently end up in full-blown meltdowns, bringing the home to a standstill (hence our return to the psychologist--which is going very well, not to mention I think it would be a good thing for Elena to have a relationship with one through middle school). Rest is incredibly important, and we stress reasonable bedtimes and downtime. But it's a lot to fit in.

As for adaptations, that's still a work in progress. I have a few in mind that we haven't really tried yet; we'll have some experience with these by the end of the year, and I'll report about that. I'm not particularly tech savvy, but I hope Elena becomes so. 

And the best news? Elena is getting great grades, she's very responsible with her schoolwork (if only that could spill over to things at home!), and overall she seems happy. Her favorite subjects are Chorus and her Advanced Language Arts class. She is doing well and we are so very proud of her.

Thursday, December 8, 2016

Girls in the City: New York! (Recap)

The girls and I continued our Girls in the City tour from Chicago to New York by plane. Jason was working so much in New York, we had the opportunity to stay with him for a few days--we even invited some friends!

Flying with the wheelchair was easy (the hardest part is probably putting it in/out of cabs). I guess we could have borrowed an airport chair, or asked for a ride on a cart, but having the chair with us provided me with a lot of security (I could keep track of all our things and the kids, and was certain no one would be too tired).

We decided to try more walking as opposed to riding in the chair once in the city. This was a shift from our plan in Chicago; I think all the riding in the chair made Elena more stiff than rested--it's a balance that we didn't quite get right. Here, Elena did a pretty good job keeping pace (we were pretty slow), and we were sure not to plan to travel more than a few blocks on foot without the chair (sometimes we just brought it and didn't use it). And, sometimes we didn't bring it and wished we had (as you'll see in some of the pictures).

Rock Center

Sister LOVE

Mom, Pack Mule NY Edition.

Against reader advice, we did take the subway (not all the time). The difference was I never took it as a lone adult with the kids; I always had another grown up, so we could keep eyes on kids, or carry the chair, or one help E while the other keep track of everything else. The girls LOVED the subway. We took elevators when convenient; if it was only one flight of stairs, E typically climbed up/down.

Girls on the Subway

Lady Liberty in the distance

Doing their best Marilyn impression

There was so much to do...the girls loved it. The weather was hot, but gorgeous. We went to the Metropolitan Museum of Art--I wasn't sure how much the girls would like it. Elena loved it! I could have been there all day. Our favorites were the Egyptian exhibit and the sculpture garden. I also liked the impressionist paintings.

The Met

The Met


Central Park was more of a challenge than I thought. Mostly b/c even with a map, we found it hard to find the nearest restroom. The park is so massive, we only saw a small part of it. 

Alice in Wonderland


The girls LOVED the Rockettes! I wish I could have taken a picture of how spellbound they were during the show. It was awesome! We also did some shopping, but with all the choices (and not much knowledge of what was fun for kids) the stores were a bit of a bust. We did find some really awesome glasses for Elena!

Pack Mule: Vivian is tired this time

New Yorkers were very kind--especially on the subway. I'll admit, I was surprised (maybe I shouldn't have been? Shame on me.). People were looking out for us, and were very friendly and helpful.

Girls in the City

Insomnia Cookies at night

Girls in an Elevator

Art Park

 My sister joined us for the last few days in the city. We went to the High Line--really beautiful!

Popsicle on the go
Chilling Out

Pack Mule, thirst quenching edition

We didn't do much New York at Night with the kids; they were typically worn out every evening. The grown up ladies did have one night out, which was really fun!

Times Square

We were all a little sad when our week was up.  We had such a fun time exploring, we weren't ready to leave. I was always very apprehensive when I thought about Elena in the city, because of all the walking she would have to do. But our experience taught me something very different.  I realized that if Elena can successfully navigate the subway, and learn her walking limits, her universe grows much larger. There is so much to see and do in a city like New York; if Elena can master the transportation piece, she can enjoy as much of it as she likes despite her disability. It was a really positive revelation. I think weather also is a factor; I can't imagine trying to navigate with lots of bulky clothing and coats.

Pack Mule; heading back home by train

Again, we enjoyed a relaxing ride home by train (we still LOVE the train!). It was great to sleep in our own beds, and be in our own house, and be in our own town. But it's official. The kids love traveling and exploring! Huge thanks to Aunt Kate, and the Gs who joined us! We loved your company and all your help!

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!