Thursday, October 5, 2017

7th grade: observations and obstacles

Prepare yourselves for a long post! Honestly, I'm not sure how to organize this...here goes.

Elena started seventh grade this year. Fall is always a difficult time; there's the end-of-the-summer blues, the excitement of a new school year, the change in schedule, and the constant issue of time management--those issues are typical. On top of this, Elena has a slew of others: worsening crouch (happens every fall), time crunch, increased responsibilities (see time crunch), struggling independence (wants it, but has issues carrying, keeping up, etc.). I am trying to navigate technical resources (online school curriculum, social media for tweens, assistive technology), and give the right assistance when needed, teach her to be responsible, and give Elena the fun time she wants and deserves. It's challenging, to put it mildly.

Social/Fun time/Time Management
I let all Elena's educators know that social interaction was going to be a huge focus this year. I want her to enjoy her school, extra-curricular activities, and spending time with her classmates. Unfortunately, as a parent, it can be difficult to know what is available for kids around school groups--they are typically not posted online, or sent home as paper flyers. Normally they are advertised on school grounds or during the school announcements--this means I have to depend on Elena to not only pay attention, but also relay the message to me on time about what she is interested in doing. Sounds easy, but it never happened last year, in part, b/c of her leaving early to get to her next class or for school dismissal. We stressed at home for E to pay attention this year to what was being offered. She did, and wanted to do everything--a girl after my own heart. So we had to make a few choices.

Elena was in the Honor Choir last year and loved it. This year, she auditioned again for the elite choir (Honor Choir is a different group)--and she made the cut. They practice 3x/week before school, as well as performances out of school. It's a huge commitment, and has other difficulties (standing for long periods, dress uniform), but the director and I are in good communication and we're making it work. She has to keep up her grades and conduct in order to stay in the elite choir.

She also wanted to join two other groups--a gaming group (Tuesdays before school) and the radio/announcement (audio/visual) group. We asked her to pick one, and she chose the gaming group.

After school she has PT 1x/week, and she has Psych services about once every two weeks. We are looking to phase out psych, but honestly, I'm not sure if we are ready for that. We are still expected to do stretches every night, and the best way to help with her crouch is her TherEx regimen (takes about 20min/day), and we are failing miserably at fitting these in, and she's also supposed to be working on being more helpful around the house (but honestly there is no time for her to help with dinner, or learn to do her own laundry, etc.).

So. How to fit all this in with homework--that's the question, right?

She typically has a math worksheet daily (she was placed in an Advanced Math class this year, and it's tough for her), and two long-term projects (one for Language Arts and one for Science) that require planning and daily reading or writing. It's crucial that Elena not wait until the last minute; she cannot "hurry up" and she reaches an hour of the evening (earlier than her peers, I imagine) where she is no longer productive. She also has up to 9 online math modules to finish per week. She *has* to shower in the evenings, as her morning extracurriculars require her to rise early.

It sounds like a lot. It can be, but honestly, I think it's manageable if you work at a typical speed--which Elena does not. I help by having Elena report everything due for the week (typically assigned on a Monday) and put it on two calendars--one for the month, and one for the week. Her math is hard for her, so she gets a lot of supervision/instruction from us. She does well with her LA and Science homework. She does not triage homework well (executive function alert!) and I can't help her unless she tells me all of her expected assignments--and several slip through the cracks. She has a homework notebook to write down assignments, and only uses it part of the time. Not every teacher posts assignments online, so I must rely on Elena to tell me what is due.

Personal responsibility is key here. Her teachers know of Elena's work pace, and understand that we are doing what we can 1) without trying to make her miserable and 2) giving her some fun time (not much in the evenings, I confess) and I have no problem asking for extra time. Elena occasionally self-sabotages evenings (meltdowns concerning homework, wasting time--executive function again), resulting in a miserable night for everyone here (hence the psych services, which is also helping with executive function).

Assistive Technology/School Help
In order to try to help E increase her efficiency, I've asked her AT team to give us some tools and teach both Elena and myself how to use them. Her online math modules were extremely frustrating for her, in part b/c the type is hard to read (especially with a visual processing issue) so they taught her a shortcut for a magnifier that doesn't impede the use of the program. I think that really helps (when she uses it). The other one that we are using right now is Snap and Read, which creates an outline and references while doing online work. E is starting to use it (she needs to be in the right browser, and of course her digital material uses different ones) and I think it will serve her well.

Elena uses homeroom time to work on homework or to finish classwork that required extra time. (All kids use homeroom time for stuff like this, or reading). I have her pulled 2x/week to work with her math teacher, and 1x/week to work with her LA teacher (E approves this). There is also available math tutoring on most Thursdays before school--Elena has taken advantage of this already.

Independence/Carrying/Peers
Elena is very small for a middle schooler. She can carry her backpack, but in the morning, the pack is at its heaviest; water bottle (for chorus; only part-full), lunch, notebooks; her school computer is only carried in the beginning of the day (it's left at school; we have one for home use, one for school use). She wants to carry her things, b/c that's what other students do. She wants to be independent. BUT when the pack is heavy (and since she's only ~60 lbs, it's heavy for her) it saps her energy as the day continues (as does spasticity). Maintaining energy is a constant struggle--I can tell after a long day, with a heavy backpack, and a strenuous gym class--she looks terrible when I pick her up at the end of the day. (I drive her to and from school to save us about an hour a day of travel time). To save her energy, I ask her aide to carry her backpack--or sometimes, a student (getting to early morning chorus). I know E would rather do it on her own; she knows when she is out of energy, and sometimes it's a bad scene (bad crouch, falls). I don't know how to give her the independence she craves without making everything "ultralite" in her backpack--which will lose ruggedness, cost more, and be unsupported technologically by the school district. And that's just the backpack; carrying other future things (cell phone, keys, money, sunglasses, etc.) that should be accessible is another story. We've been working on Pockets for a while. That's for another post.
Elena and I have talked a lot about independence and school, and in general, she is ultimately in charge with the expectation of being safe and as capable as possible. This translates as help carrying in the morning/when backpack is heavy, and Elena carrying when it is light/end of the day. If she insists on doing it herself, everyone is to let her; the school team understands that ultimately it is E's decision.

Any advice out there, blogland? I'd love time management tips, carrying ideas (that's the next post!), ideas for streamlining homework, etc. If I could keep time in a bottle I'd be a bajillionaire!

Wednesday, October 4, 2017

End of Summer Wrap-Up

Time has flown by again. So here's the recap (I have a lot to write about since school started!).

Solar Eclipse
We all enjoyed the solar eclipse from our front porch. The kids had friends over, and they kept darting in and out, watching through our shields/solar glasses. My family loves astronomy, so this was a special treat!

Eclipsin'

First day of school! 

Vivian: 3rd Grade
Elena: 7th Grade

The beginning of school is always a rough transition...the girls felt like they were ready for school (they were) but not ready for the summer to end (we were pretty busy, in the best way--but maybe not enough lazy time?). More on that later.


Kayaking
We were lucky to spend a spur-of-the-moment kayaking day with our friends the N family! I snagged a spot for myself and the girls (Jason was out of town) on tandem kayaks (Viv went with TN). It was PERFECT. The weather was great, the kayak outfitters were so kind and helpful, there was transportation to/from the boat launch, and everyone had their fair share of paddling, swimming, wildlife watching, ropeswinging, getting stuck on rocks, and riding "rapids". Seriously it was perfect. We cannot wait to go again (the kids are begging to kayak again)--but there hasn't been enough rain.


Viv swam to our boat for a picture

Sherando Lake
The following day we joined our friends the S-R family during their annual camping weekend. It rained most of that weekend, so we declined camping (hence the kayaking) but managed to spend the nicest day of the weekend out there. The girls were excited to play with friends, especially in the (COLD) lake.

Makeshift rowboat is much harder than paddling a kayak

We also met a very nice gentleman, Bill, volunteering at the campgrounds, who helped our girls fish.
After everyone caught a fish, we finally headed home.

Clyde
As we were getting in the van on our way to school, I found this little guy in the grass right before the lawn mowers came through! We named him (her?) Clyde.

Box Turtle hatchling!

We've never seen a box turtle so tiny! We released him close to where we found him--but without the threat of giant cutting machines. Good luck buddy!

Thursday, August 31, 2017

Girls in the City: New York, AGAIN

I'll try to get back on schedule (end of summer, back to school) but this deserves its own post.

We headed back to NY for an end-of-the-summer trip. E and Viv refer these types of trips as "Girls in the City", as Jason works during most days of a trip like this. Our (first) trip (last year) was so successful, we decided to go again, only this time, armed with City Knowledge. You might notice E is wearing her "pocket sash", our current attempt at practical pockets. More on that in another post--she typically carried her clip on sunglasses, her metro card, and anything else little (lego person, map, money, etc.)

We traveled by train to NYC. We all love the train. The girls were busy with games, coloring, and walks up and down the carriages; parents read and planned our trip, while we all studied maps. Naturally, we brought Elena's wheelchair. Our goal this year was less on shows, more on seeing different parts of Manhattan. We were not necessarily going to shy away from the subway; we have became more confident with Elena and our ability to carry or use her wheelchair on public transit.

The weather was beautiful, even though it was a bit hot. It rained one day out of our week. The first day, we arrived in our lodgings near Chinatown and had an easy dinner. The following day, we headed out to brunch in Harlem (by Uber; the subway was going to take a long time!) and then headed to Central Park.


Elena received a song in her honor at Red Rooster!

We decided to try to ride bikes through the park. We rented three; a bike for Jason, a bike for Viv, and a bike for me with an attached trail-a-bike. I am the only parent who has successfully used a trail-a-bike, and my knee is much stronger than it used to be--but the last time E was on one, she was much smaller and lighter. I considered a tandem, and I am very glad I decided not to get one. Elena and I had a rough start; I felt very uneasy, had trouble starting once stopped (a significant issue, as bikes have to stop for foot/horse/vehicle traffic in the park), and Elena kept leaning from side to side so much I had a very difficult time maintaining balance for the two of us. Her feet kept falling off pedals (which would have been a HUGE problem on a tandem). We stopped by my request..I was ready to give up. I asked Jason to take the kids on the carousel, while I tried to collect myself and figured out what to do. I ended up talking with E about my concerns, and my plan to try again and what to do if our attempts ended in failure. We were a team. And we figured it out. We rode all over the park! Biking in Central Park was one of the top two things we all did in NY!


Jason daringly snapped this mid-ride

Strawberry Fields

Walking the bike was just about as difficult as riding it. For me.

Our only rainy day, we headed to the Museum of Modern Art. Elena loved it, Vivian not so much. Then we headed to the NY Public Library. Vivian loved the children's room, but E wanted more, so she and I explored the building.

Warhol Cows at MoMA

Trying to keep dry in the City

We were joined by our good friends the Gs; we spent a lot of time exploring parks and museums. We decided to head to Brooklyn from our Chinatown spot. Elena decided she wanted to walk the whole bridge; so she did!


Girls on the Bridge

Enjoying the Park
 We really enjoyed Brooklyn. Lots of walking, for all of us. We hopped on the Ferry to the Financial District.

Fearless Girls

The Bull


We enjoyed walking back through Chinatown. We ate in Little Italy. Viv and M and M and Z loved running around the parks, chasing pigeons and playing in fountains (Elena was tired). And, very important--if you are wondering if your kid can catch a pigeon, the answer is yes, so you better figure out how to convince your child to release it. 

Fountains 


We went back to the Metropolitan Museum of Art. We loved it. There is so much to explore, and with the wheelchair, there is enough energy for everyone to see as much as they can.

The kids at the top of Belvedere Castle on the way to the Met

Bamboo Display at the Met

Lots of playing in playgrounds and parks, stopping along the way for cool shops and food. Loved walking the Esplanade along the Hudson. Enjoyed the shops and bars in East Village. Only messed up once on the Subway--and everyone in Queens was very nice. Vivian and M ended up joining in a square dance/dance/exercise group in Chinatown. J and I got to go out to dinner, big thanks to the Gs for watching all the kids! So much to see...the only repeat we did this year was the Met and Rockefeller Center (kids always want to visit Lego and see what new displays they have!). Everything else was new.

Pickle Shop!

Heart Balloon

Hailing Taxi

Japanese Crepes? Yes please!

Union Square

We ended our trip with an easy evening at a Cat Cafe, called Meow. It was a very weird but pleasant way to recharge after being in such a busy city.

Refuge for Cat Lovers

Our only issue, besides me being tired from walking, was that we forgot E's crutch hand grips and she mentioned she probably wouldn't be as tired if she had them. We'll remember next time--b/c we'll definitely be back!

Wednesday, August 2, 2017

Beach 2017

We had an awesome vacation this year at the Beach! We drove down a day early, to try to beat the weekend traffic. This means we had time to kill before we could get into the beach house, so we went mini-golfing.

In the past, this has been disastrous. Elena typically has a lot of trouble tripping over low obstacles, has had difficulty using a putter, and she wilts in the sweltering heat. This year, she rocked it! The only way we helped her was to carry/hand her a crutch as needed, or give her a hand for stability. She was patient and focused. All of us got a hole in one somewhere on the course!



We stayed in two different beach houses this year. One, on the beach, and the other two blocks away. The house with direct access is great for Elena, as she can get to the beach by herself. She has to be careful with her beach crutches going down stairs (typically I hold them, just to be safe, but she can do it without me) and needs to wear her water shoes so she doesn't burn her feet on the hot deep sand. She can go down to the beach without her crutches if the tide is high (or if she has a lot of energy to make it down to low tide). When we stayed in the house off the beach, we rented a golf cart. SO MUCH EASIER than trying to take the car, piggybacking, walking, or trying to use a wagon. If you are wondering if it's worth renting a golf cart, the answer is YES. I know it was only 1-2 blocks for us, but having the golf cart was the difference between a great vacation and one where transporting tired/wet/spastic/heavy kids (and equipment) would have made it much less enjoyable. Honestly, it made staying off the beach and on the beach basically equivalent.

Down the (public) beach access (when we stayed off the beach)

E and Viv playing in the surf. Most of the time she left her crutches just out of the surf or just walked from our chairs.


 
Vivian showing how small she is: "I can fit in a bucket"

We were joined by our friends the S family, who also have a 12-yr old girl. Elena and A had a lot to talk about, including "how mean our moms are". The winner of the "Meanest Mom in the World" award was me. Hmm.


Surfin' J!



Every day we spent a long time on the beach (except maybe one, for a sun break). We played with friends as we relaxed in the shade, or played in the sand, or swam in the water. Elena had a few firsts this year; she was able to walk past the surf, towing a boogie board, and ride in on a wave! Some days she had help, some days she did it on her own. Vivian has been pretty independent on the beach for a few years now--the only thing she has issues with are getting pinched by crabs and doesn't tolerate sea lice, which were around quite a bit this year.




 
Meanest Mom in the World towing kids upcurrent

Towing so they can "ride a wave at the same time". #tiredmom

Bocce!




Both kids love the "whoosh waves", where you just play in the deeper waves. If the mix of water depth (deep enough for Elena to be bouyant to stand), wave height (not too big), and current (not too strong) was just right, Elena could get out and play without help (with an adult close by in the water). Towing and throwing kids around in the waves is easier this year as my knee is almost recovered, but both Elena and Vivian are so much larger and heavier now, I'm not sure how much longer I can do it.


Jumpin' and whooshin'

Supervising (more hands-off this year!)

Strong Waves. Hands on.

Wave riding with Mom. This is my "hope we don't get rolled" face.

Beach Cousins! HOW CUTE!

Elena rode waves best on a raft, rather than a boogie board. She could carry a boogie board if the wind wasn't so hard, but she didn't like it when her legs would drag in shallow sand (and it took a long time to stand up as the waves hit). She couldn't carry the raft into the waves, but had a better time controlling it once she started riding.


Rafting

Rafting, Grandpa edition

Viv loved the inner tube. E, not so much.


What a great time with family and friends! It's so great to see how much progress the kids have made at the beach--especially Elena. Activities on sand, in water, were much more independent this year. The kids tolerated sun, heat, and the occasional sting very well. Aunt Kate won the Sorry! tournament AGAIN, with 12-yr old A coming in as the runner-up. The Best Beach find was a pufferfish, and best Beach Beverage was probably Jason's Mai Tais. Most Successful Surfer was Jason, and Vivian caught the most fish. Both Vivian, Elena, and cousin G made friends on the beach.

Huge thanks to the S family for joining us, and to Grandma and Grandpa for bringing the beach gear!


Family playing "surprise wave"

Recap: Swim Team

The Swim Team Season just wrapped up, but it officially begun at the tail end of May.

Our swim team is fantastic (this is our second year). The Head Coach Eric stresses improvement and sportsmanship/team spirit over anything else. He has Assistant Coaches (five of them, either high school or college age) who are wonderful, and a few Junior Coaches who are middle school age (more like helpers; this is a little odd, b/c E is the same age, but it's fine.) Practices while school is in session are in the evenings (we typically don't start practicing until school is over, it's too hard to fit in for us) and once summer starts, it's 8 am every weekday except Thursdays.

Elena and Vivian practice at the same time (for now). Viv practices with her age/skill group (mid/fast 8 year olds), and Elena practices with the inexperienced 8-and-unders. E would like to practice with her own age group, but she would absolutely clog up the lane (and could possibly get hurt) because every other swimmer in the crowded pool (all lanes) is 4x faster than she swims, and has more endurance. Elena knows this, and has a pretty good attitude about it. She acknowledges that she is well-challenged practicing with the youngest swimmers, and she has the opportunity to get more individual instruction time. It's hard on me sometimes b/c E isn't as independent without her shoes and braces, but honestly, she's really improved on her poolside mobility. For practice, she wears her water shoes (I like this type) and she can walk well with crutches and can take steps (while wet or dry) without. She enters the pool by the steps (with rail) and takes off her water shoes (leaves them there) and gets in to swim. Reverse on the way out. If she's cold, she needs assistance--but that's typically only at the beginning of the swim season. And, while she doesn't do it at practice, she can now jump in the pool safely from the side edge (one hand on a rail or ladder)!

Elena used to swim only two events; freestyle and backstroke. Her backstroke is seriously slow, and she doesn't love it. Her freestyle has really improved! She is stronger now, and can kick (it's inefficient for propulsion, but can keep her from sinking) and can take breaths on either side during her stroke. She used to curl her head around while pulling hard and fast--imagine her making a ) or ( with her body at every stroke--which ended up wasting a lot of energy, but now she is much straighter in the water. Her goal was to get her 50 free under 2 minutes (her home pool is a yard pool, so that's our reference measurement). She also wanted to get a legal breaststroke, which I thought might be hard if her feet "flip in" (she doesn't have great ankle strength/awareness to remedy this) but her feet/spasticity happen to work with breaststroke--so this goal was in reach.



Meets are on Wednesday nights, and the kids swim 2-4 events (Vivian usually swims more events b/c she swims on a relay team). I am allowed by her lane with the timers, as Elena can't get out on the side of the pool without a ladder (it's hard, but I pull her up under her arms so she is sitting on the edge of the pool. She then swings her legs out, and I help her stand and walk away). Everyone is supportive, and cheering, and congratulating each other on their swims. It's wonderful.

We were gone for 2 weeks on summer vacation, but this year we were in town for Champs. It's where all the teams in the league (all 3 divisions, so there are 18 teams) compete. Vivian dove for the first time (off the block, which is pretty scary for her) and Elena reached both of her goals, with her 50-yd conversion time of 1:58 and the best 50m breaststroke of her life!! Vivian's freestyle relay won a fancy ribbon! Elena also won a special award for Perseverance, which is new this year. Amid all the 18 teams, she won for outstanding achievement. It was awesome!

Recap: End of 6th grade and other stuff

Pretend it's April/May/June.

Right after Elena's Honor Choir field trip, she had a field trip to Shenandoah National Park (literally the next day). The weather was horrible (pouring rain), Elena got left behind on the hike (I was seriously pissed off, but things happen). She was with her aide and myself. Long story, lessons learned, etc. but in essence, just about everyone on that trip was pretty miserable. At any rate, it was *memorable*.

Just...horrible. (This was a short break in the pouring rain.)


We went to a friend's beach house (so lovely!). We played games, played in the ocean, E and Viv even got to kayak and paddleboard! We had such a GREAT TIME. Super fun, and the kids were pretty independent. As a matter of fact, their first move on the beach was to paddleboard out of sight (quickly followed by parents).


Paddleboarding!

How I like to kayak.


Elena had her 12th birthday. TWELVE. Honestly, there's so much to say, but as I'm still playing catch-up, I'll leave it at this: Elena is rocking it right now. She has a good sense of her disability, is very real about it, but tries very hard to not let it get in her way. She is growing more responsible and mature (but not too quickly!) and makes us proud every day. We love you E!


E at the school Track Meet. Her relay team was AWESOME. She is carrying her baton in her "pocket shirt".

May consisted of school SOLs (Standard of Learning) and Elena had goals to pass all of them, with an Advanced Pass in Language Arts (she has never had an advanced pass, and in the past these tests have been incredibly anxiety provoking and she has failed several). She only had two; she passed her Math SOL (solidly!) and was one point away from an Advanced Pass in LA. Wow!

June was the end of school wrap-up; concerts (Elena), performance (Vivian), sports (baseball for Viv), and a flurry of academic presentations to showcase the kids' achievements. Honestly, it felt like something was happening every evening for the first two weeks of June. I loved seeing what the kids (and their friends) had accomplished this year--impressive!

Vivian ended the school year with great grades (numbers, not letter grades or tests yet, much to her dismay) and Elena ended up with all As (including MATH!!!) with one high B (Language Arts). She worked HARD for those grades, I tell you. What a year. I can't believe I'm writing this, but 6th grade was a smash hit!!