Carrying

Since Elena is mainly a crutch user, her hands are busy most of the time. This makes carrying difficult.

We've been trying to give Elena tools to be as independent as possible, but carrying is always at issue. While she is at home, and inside the house, she does not use her crutches. We expect her to do as much as possible on her own, safely. We have been practicing carrying dishes (mostly empty dishes) for a few years now; E clears her place after eating, which means bringing any dishes/cups/cutlery to the sink. She will typically try to carry things in one hand (which can mean a few trips) and steadies herself along the wall, table, or other surface as she walks (which is fine, if her hands are clean. Ahem.). In general, E hates making more than one trip to do this, but we're pretty firm about being safe with dishes and cutlery. She puts away her own clothes (can not carry the laundry basket), and carries toys and books (typically one-handed, but can use two if the distance is short).

At school, she carries her own backpack most of the day. This is touchy because her backpack is heavy (much to my dismay; we've tried lightening her load, but it is largely a losing battle with the school district. They refuse to support ultralight material since she has an aide that can carry for her if needed. I understand this, but they miss the negative social impact of E having to have a grown-up at her side as a middle schooler). If she works too hard on carrying a heavy load, she crouches more, slows down, and tires quickly. Her aide does a good job trying to balance Elena's desire to be self-sufficient with her expectation to function for the school day.

She has a standard sized backpack; we she does not generally carry her school computer to/from school as she has one for school and one for home. She does carry it from room to room, during the school day, as needed. We keep her 3-ring binder thin and regularly empty papers to keep it light. She typically has 2 copies of required books (normally for language arts; one for school and one for home). She carries a water bottle also, but only fills it halfway to keep it light. No matter what we do, it's big for her.

BACKPACK PICTURE, before school day (max weight)

Out of school, and especially on trips, we are trying out carrying options. The end goal is for Elena to be out with friends, and able to 1) answer a phonecall, 2) pay for something, 3) carry something she buys with her (in a bag, or backpack, or on a tray to a seat) and keep up with her group.

She, like many middle schoolers, wants a phone (she does not have one; this is another subject all together) but even if she DID, she has to prove she can carry it and use it. Her clothes are largely knits (they are easy to get on, and are not stiff) and almost *never* have pockets. I did find these, which are pretty awesome.

She has several sized backpacks, but if the phone rings, she can't get it out fast enough to answer it. It is also difficult for her to get into her backpack (if it's on her back) in a standing position (she prefers a place to set her crutch, possibly sit, take off her backpack and rummage through it). Purses, for the most part, are unusable b/c they end up swinging into her crutches or falling off her shoulders.

A hip pack is a great option; we have several sizes (small, large) and a few colors. Elena doesn't love the look. But it works.

 

Small pack. Doesn't hold much.

Large pack. Easily holds phone, easy to get in/out. Of course she doesn't like it

I've also considered a holster-type bag, where it would attach to belt loops (most of her clothes do not have these) and be secured by a strap around the thigh. But it would be potentially problematic in the bathroom (in general, belts are for E) so that idea was nixed.

I have considered adding pockets to all of her clothes (kangaroo zip pockets) but I have never sewn a pocket in my life, nor have a ever sewn in a zipper. I bought these shirts for the girls in the past. I've considered making a vest, with pockets all over, but my sketches don't look good enough so I haven't done much with it.

We have a few magnetic pockets that can are secured over the waistband of pants. Overall, it's pretty useful--but some are too thick and heavy, and others too small to hold much. My favorite is this one; lightweight, with a zipper. Again, possible issues of losing the pocket during a bathroom trip (in the past, the instruction is to take off the pocket and stick it to a metal surface in the stall before toileting). And, unfortunately, the pockets have erased hotel cards in the past (magnets!).

Large magnetic pocket. A little bulky, and uncomfortable when sitting.

I looked at bags that attached to crutches, but they are very small and don't seem to be built for quick accessibility. I also worry if she puts the crutches to the side, that money/keys could be easily stolen.

We had an OT group work with us this summer on a carrying option. It had to be accessible from the front, not get in the way of using the bathroom, be secure so things wouldn't fall out, and cute. They came up with the "Pocket Sash", which works very well. We brought it out with us (it was awesome in New York!), had her carry a few things (including money, something like a phone, and her clip-on sunglasses).

Pocket Sash!

Elena's biggest complaints about the Pocket Sash were 1) it was hot (really?) and that 2) she was upset that you couldn't see her outfit b/c the sash blocked everything on some of her favorite shirts. So while the Pocket Sash was incredibly useful, it isn't working with Elena's fashion sense on some days. I still think this is our best go-to-carrying option. I could alter it a bit, but I really think the pockets are in a great position for her.

Still working on this. Suggestions, anyone?

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!

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!

C-MoR weekend

This weekend, our Fantastic Nanny Annette and I took the girls to the Children's Museum of Richmond. I knew it would get crazy crowded, so we got there right when it opened. Here are some highlights.

Viv on the Dinosaur


Elena working the Apple Tree (note; she has to start walking with her right and left, respectively, in the videos below)





Going down steps in the Treehouse. She wants one hand on the railing, and one hand held; I refused to hold her hand, as the steps were relatively small. I love the way her foot is mostly straight when she goes down--that was a LONG TIME COMING!



In this vid, her hand is too high when going down the second step. She still isn't confident to move her hand to the right place each time when doing steps, up or down. She'll get there!



We broke for lunch, and came back to play for a while. The place was PACKED by that time. There were a lot of kids asking Elena questions about her crutches/braces, and staring. None were mean; actually, some were quite nice. But E got tired of the questions. She stopped answering them. At one point, we were waiting for a Magic Show to start. We were sitting on the ground, waiting patiently (unlike some other kids). One very nice boy asked Elena "what happened to your legs?", in a very nice, curious tone.

"NOTHING."

WHOAH. I mean, my eyes got huge and I sat up straighter--E's tone was FINAL. That kid has a serious tone of voice!! The boy snapped right back around, almost scared to look at us. E's response was unexpected. But, in a way, I'm really proud of her, for letting people know that sometimes, it's not okay to ask questions. I was just a little shocked, that's all.

Overall, a great day, lots of great movement, and TONS of fun!!

The Summer of No Carrying

I have several Ambitious Summer plans...one of them is to stop carrying Elena. In all honesty, we do it often, in certain situations--steps and stairs being the most common ones. We live in a three story house, and the steps outside do not have a handrail.

During the school year, we have been in a rush, and Elena is NOT a morning person. We would have had to wake her up a minimum of 30 minutes early to attempt to have her do all her step/stair transitions herself. Quite simply, that was not a good option.

Well, since we don't have to rush to get to a bus anymore--now's the time. The Summer of No Carrying means when the people involve Jason or myself, Elena will NOT be carried AT ALL (ideally other caregivers will do the same, but I'm not going to insist on that). No matter how tired she is, no matter the weather, no matter the footwear--Elena will move her own feet to get from point A to point B. She can hold hands, use crutches, use rails, etc. but she must move her own feet (or scoot, or crawl, depending on the situation). I typically bank in an extra 30 minutes for "getting out of the house" time, if E is going to do all the transitions herself.

I sort of sprung this on her yesterday. We had talked about it before, but in the rush of kindergarten "graduation", she forgot that being a First Grader meant we instituted the No Carrying Act. Today (day after the last day of school) was our first day.

She went down the steps in the morning herself--scooted down on her bottom (which is fine) to play before the rest of us got downstairs. We went out for a morning activity, and she held one hand and used one crutch to go down the steps outside. When coming home, she opted to go through the basement as the steps have a handrail, and opted for the other hand held. We had a flash thunderstorm before Feldenkrais today, and again she opted to go through the basement, one hand held and then got to the car herself (flat concrete). One hand held and one crutch used as we crossed the street. Same thing on the way home. Going to bed, there was some whining about how she didn't like the No Carrying Situation (I have always carried her up the stairs to bed) but she didn't complain long, and we just went up for bedtime.

I noticed immediately that after just one day, her weight transfer going up the stairs has improved--she leans forward more and pushes more with her legs (rather than pulling herself up with her arms). Practice makes perfect, no?

It'll be a challenge for Elena, both mentally and physically to adjust to this. I LOVE IT. It is MUCH easier on me to hold her hand than to carry her--she's not necessarily heavy, but she is long and her tone makes it awkward to comfortably hold her weight when doing stairs.

Strawberry Picking

I was nervous about trying this...b/c I couldn't find a stool that was a good height for E to sit while she picked berries, and I though that bending over would be too hard, or she'd fall.

Shame on me.



Vivian picked a few--the majority of which went right into her mouth.





The family's haul!



E did a great job--she NEVER fell, and she even held (and walked, a little) the berry box. It went better than I could have imagined--just a fantastic day!

PT recap: Walking...and a Wheelbarrow?

E's been working on walking and stopping at PT for a while now. Of course, there is still a long way to go.

Standing on a wobble board--getting better!



And the highlight (a few weeks ago, I'm late)--walking with a wheelbarrow! She carried and pushed it!

PT Recap: Balance challenges

E has been doing very well in PT. Sometimes she's really ON. Others, well, we know she's not going to really engage. I think that's perfectly typical of a girl E's age.

Here are some highlights:

Theresa had E initiate AND complete weight shifts (shown below). She is holding an egg in an egg spoon; as the session went on, we gave her shallower spoons to see if she could keep them from falling.



I talked to her about "egg races", only we call them an "egg pass" b/c I don't want her thinking she needs to race/hurry.

Here is E trying the egg exchange:




Later on in the week, with Molly; this is just a stretching session, but I loved what E was telling me...



And trying to get E to walk downhill. We tried this later without Molly holding on; Elena can go down most of the way in a controlled manner, but once she thinks she is "at the bottom", she'll lean forward to anything she can reach.

Easter--including an Indoor/Outdoor Egg Hunt!

Happy Easter!

E and Viv had a great time up at Grandma and Grandpa's house. As usual, E got to play "kitchen" and made food for everyone.



We dyed eggs--or as E says it, "dived eggs", late Saturday evening.





After church, we had an Easter Egg hunt! E has done this before--inside the house. She is very good at it now, and loves the hunt. We try to stress that it isn't a race, and that works well. This year she carried her basket for the first time. She didn't have any problems inside the house (relatively flat, lots of handholds). Vivian joined the hunt, too. She liked the eggs when she found one, but didn't know what to do with it besides shake it.

We also had an outdoor egg hunt!



E did pretty well on the pavement and surrounding areas. There were some eggs through the grass, and that proved too difficult. Granted, the grass was long...but I think even if it were freshly mowed, it would have been too difficult this year. The hardest parts were the edging by the mulch (little "dips" prove troublesome) and the fact that she was carrying a large object. Vivian, on the other hand, loved it--she ADORES being outside, and especially loves tumbling in the grass. Elena likes grass, but not the falling part. :)

Great job, girls!

A Whole New World Started February 4th

This post has been a long time coming.

On February 4th, it was a relatively normal evening--we were scrambling to get dinner on the table. E and Vivian were proving a little more high maintenance than usual. After what seemed to be forever, we were all finally sitting down and ready to begin our meal. And, just like clockwork, just as the forks are coming to our lips, E confesses: "I have to go to the bathroom".

SIGH. I'm so exhausted. "You know what? You have your shoes and braces on. Just go."

Jason's eyes go REAL WIDE. E gets down from her chair and heads to the bathroom. She's never tried this before--normally we have been right by the door, ready to spring into action to avoid a head injury. Jason and I were frozen in worried anticipation. if E fell, this could be a horrible setback. We didn't end up having to wait for thud, though...E kept giving us the play-by-play.

"I'm on the potty!"
"I'm not falling in Mommy, don't worry!"
"I'm WIPIN!"
*singing now* "I AM PULLIN' UP MY PANTS!"
"MOOOOOOOM! I decided I'm NOT GOING TO HANG UP THE TOWEL 'CAUSE I CAN'T REACH THE HOLDER."
"I'm DONE! MOOOOOOM! I'm comin' out!"
"HERE I COME!!!!"

She is practically DANCING her way back to the table! For us to NOT have to drop everything to help her to the bathroom is a HUMONGOUS change in our lives. Not to mention the confidence boost this has given E--she wants to do everything she can--get her own drink (we now put a cup so she can get water from the fridge--she can even walk to the table with it!), help bring dishes to the sink (relatively clean, light, ideally unbreakable tableware), swiff (she can even do it without holding on to the wall!), and has started putting some of her toys away (only when she feels like it). She can do these things when she is wearing her shoes and braces.

I have a feeling this will be the way things are for a while--when she is wearing her shoes and braces, she can do a certain tier of things; when she is wearing her sneakers sans AFOs, a different set of things, and when barefoot, much fewer things. That's okay--we're determined to turn those few things into many.