Catching up during COVID-19

I hope you all are staying safe and healthy. It's an unprecedented time. We have a stay-at-home order, issued by the governor a few weeks ago. So far it's going pretty well.

Before the break, kids were keeping busy; Elena had straight-As in school, and was getting ready to go on her New York Field trip (which got cancelled). Vivian performed in her school play, and enjoyed jazz dance and violin. I was able to get out a little more--there is some great live music around here!

Now, with things on break, it's very different. School officially started distance learning this week; the kids are very receptive, and enjoy interaction with other students and educators. I'm not sure how well assignments will be completed, but we're doing our best with this new platform. Vivian is definitely lonely--video chats only do so much. I've been keeping them tasked as best I can. We have home projects, and everyone has to go outside, video socialize, and work out every day. 

Elena has been doing a great job with her personal trainer and her trike riding. She's matured a lot, and is really great company most of the time. We miss going to to gym.

Vivian has been seizure-free for almost two years. She's still on epilepsy meds; we had an appointment to see if we could start weaning her off medication, but it had to be postponed due to coronavirus. My hope is her mood swings back off a bit; I think she's more emotional because of the medication. With any luck, she'll be able to get her EEG done by the end of the summer.

As far as things with me, it's much the same. The divorce process is slow. I try to exercise every day, and spend a lot of time cooking. I've been trying to make masks using my sewing machine, with limited success. I have a few home improvement projects going. I've actually found the change of pace nice--slowing down has been a good thing. 

My family is doing okay. Dad had a second brain surgery in January...he hasn't been bouncing back. I think this is normal (?) for a glioblastoma patient. The quarantine has been most difficult regarding family visits--we've been staying home, which has been rough b/c I want to see my parents and help out if I can. No one wants to get sick--especially my Dad and Mom. 

How are you out there?

I'm not sure what else to write, so I'll leave you with our first audio-video project. The kids wanted me to get TikTok. I may have made a huge mistake.

@ousemay ##quarantineroutine
♬ original sound - lauraclery

Help! Wheelchair modifications, anyone?

I know I need to catch up a little--but this first. I've been putting off this request for some time, mostly b/c it "could wait". Now I feel like I'm running out of time.

Elena has a manual wheelchair, an old Quickie. She doesn't use it very often. Typically, we always bring it traveling, or if we know we'll have to walk more than a mile at a time without many breaks.

When we were at the beach last year, I met a very nice couple who I saw going on a ride. A man (Harold) was in a wheelchair, similar to Elena's, putting on an attachment. His wife was on a bike. Then they both took off quickly---I ran them down, begging to ask them about his device. They were so sweet, not only did they tell me about it, we rode back to our beach house so Elena could check it out.

This device is called The Firefly. It attaches to the front of a manual wheelchair, literally in seconds, and the chair operates like a scooter. Harold said it changed his life completely! His weighs 13 pounds, he can pack it as a carry-on on an airplane, he can put it on the chair in 20 seconds, and it can go 25 miles/hr so he can keep up with his wife as she rides her bike!

Firefly (from their website)

I thought about getting one for Elena, but I saw two main issues: she has to operate it independently, and I worry about the top speed being WAY too fast. I am pretty sure in order to get out of the chair, the Firefly has to be removed (untested--definitely true for an adult). I wasn't sure why we would really need one, as Elena doesn't use her chair much, and when she does, she's typically with me.

Elena's in high school. I can appreciate she doesn't want me, or any adult, always pushing her (she doesn't push the chair herself b/c she uses it when she's tired and needs to rest). If E is on a school trip and has the chair, I really don't want another student having to push her--if someone WANTS to, that's fine, but it shouldn't be their JOB. And E is tired of always being "the teen with the grown-up" on a field trip.

I thought maybe we'd try one out next fall. Or sooner, if we knew of a trip that she might go on, where I might possibly not chaperone.

That trip was announced the first month of school. It's in March 2020.

I'm working to see if we can try one out. Has anyone out there used something like this? If so, what did you like? Is there a different model you prefer? Is there one that can "swing out" so getting in and out of the chair is easier? I think this could be the key for Elena to be independent, over long distances, and be able to spend time with peers without a hulking adult presence.  Please comment!

Long Overdue...RECAP!

Hi Doodlers in Blogland,

As usual, I am exhausted before 9pm. But I wanted to put out an update, b/c we are still crushing it here, and I am holding together. It won't be the most beautiful recap, and I'm not putting up pictures b/c it takes too long and I feel the urge to put something up--so here it goes!

Jason moved out in June. He still lives in town. The kids are taking it okay.

We had a busy, fun summer. We went to the beach, a friend's beach, they had summer camp (E had two sleep way camps! she loved them!), sleepovers, went to some cool events. Lots of kayaking (kids kayak free for the summer here-I'm trying to get E to be independent. Didn't make it on her own kayak b/c it didn't rain enough here!). Elena pursued and earned a volunteer job at the local SPCA, which is great!

Kids started school. Elena started high school (!) 9th grade. I have permission to write about her experience, but I'll have to elaborate later (i'm too tired!)--the bottom line is she is doing GREAT. She is keeping up academically (it really hasn't gotten too hard yet, though), her math tutoring over the past year has paid off (she likes algebra!!), and she is involved in a few clubs. The school is HUGE, and for the first time in...what, 5 years? I don't think her "fall crouch" is actually that bad--WHICH IS AWESOME!--and I attribute that to the exercise and stretching we've been doing. I am so proud of her, it's a big change, and she is really flourishing.

Vivian is doing okay. She is in 5th grade, she loves school. She is very sensitive to personal relationships, so this is a fragile time for her. She loves her therapist (we all have one) and she is coping okay, I think she just wants an ear that isn't me. I started her in jazz dance and SHE LOVES IT. She keeps busy with friends, girl scouts, dance, and baseball. She is looking forward to the holidays and her birthday. She will get her epilepsy meds increased this week, b/c she's having a big growth spurt. I anticipate a lot of fatigue and moodiness with this increase; it's better than having seizures (she hasn't had one in over a year!).

We all ran the Women's Four Miler at at the end of August. It was a big deal for Elena; she can walk 5 miles per day, but 4 miles at once was A LOT. I'll write more about that experience b/c she was awesome. Viv ran the whole thing--yay!

As for me...I am okay. I've been doing this. I can do this. I'll keep doing this. I could use a break. I don't get many. I feel like my head and heart are in the right place; I'll find a good balance, even though I don't have it right now.

And Dad is doing okay too. He was one year post-op in September. That's a big deal for a glioblastoma patient. He finishes his chemo in a few months, and then it's wait and see. He's been a great patient, my mom has been the best rock for all of us.

Thanks for reading. More when I have energy!

Begin Again

When I wrote that 2019 hadn't started well for me, I wasn't kidding.

Jason and I are separating.

The kids were told yesterday.

There is obviously a lot of change, which is very, very hard.

2019 in a nutshell

Hi blogland,

Well, there's a lot going on. 2019 has not started off well for me. The kids are okay; Vivian is starting to wean off one of her epilepsy meds, and E has been doing well as the year comes to an end.

I have some to report about E's last field trip (huge success! YAY FOR HANDICAP ACCESSIBLE SHOWERS!) and our plan to transition to high school.

I have lots to tell, I'm just too drained to do it right now. Love to you out there, for you all still reading.

Winter Coat Project

If you're a crutch user, you know how cumbersome it can be trying to use them with a warm thick winter coat.

Elena has tried the half-cuff option for loftstrand crutches; she needs the full cuff to move her best. It's difficult for her to stuff a winter coat sleeve into the cuffs--most of the time, she just shoves her forearm into the cuff, so the coat stays scrunched up right around her elbow, leaving her arms cold and uncomfortable.

I've tried working around this for years. Typically, a grown-up would help E get her coat inside the cuffs. We are trying very hard to enable Elena to be as independent as possible, and this includes dressing with coats or other bulky pieces. I have a dozen or so sketches, some involving a spring loaded cuff (which I don't have the equipment to make) and others involving creative adaptations for clothing.

One thing I didn't have was a spare coat lying around in order to test out my model. I tried with some extra fabric, but it's just not the same as using an actual thick garment. I couldn't find one that would fit Elena at a thrift store, and I didn't want to buy a brand new coat, because I was going to cut it. I was looking for an inexpensive test option in case my idea failed. I couldn't find one.

I decided to write to one of our favorite retailers to ask for help. (Please keep in mind, I am not paid to advertise for a retailer. Occasionally I have been asked to write pieces and have received compensation, but this is rare and always disclosed.) I wrote to Boden, telling them about my plan, and wondering if they had any damaged/factory seconds that I could obtain at a discounted price. They asked to see my sketches, which I sent, and had some questions regarding Elena's color preferences and size.

Much to my surprise, a new coat was mailed to us a few weeks later, completely free of charge! It is BEAUTIFUL. They paid attention to the material--a bulky coat (like a puffer jacket) would be too much material for me to handle once cut; the coat is waterproof, versatile, warm and relatively thin. Elena even loves the color. She loved it so much, and didn't want me to "ruin it" by trying my adaptations.

But we did it.

The Coat:

"Cosy Waterproof Coat"

We had Elena wear it for a week. Here she is, wearing it (fits beautifully!) to swim practice on a rainy morning. She just stuffed her arm in the cuff, the sleeve is mushed up around her elbow.

Sleeve mushed up above cuff

We decided to try to leave enough sleeve so that it would bump up against the cuff just a little, with the idea of creating a detachable bottom portion of the sleeve to accommodate her crutch cuff. I wasn't exactly sure if I should try to make a long "crutch pocket" out of the rest of the sleeve, or have it attach to the cuff, or have it attach to the jacket. First I had to make the actual cut.

I went to a friend of mine, JW, who enjoys sewing and knows a LOT about some tricky stitches. I didn't have confidence in my sewing abilities--but after talking with her about the plan, she knew she could make it work!

HERE WE GO

Two "coat cuffs"

       
JW made a "hidden seam". She folded back both edges of the cut coat towards the inside, and then expertly sewed them together by expertly guiding the needle through the seam by touch so as not to puncture the outside of the coat. It sounds complicated--but the hardest part was getting the folds right among the inside padding of the coat (in my opinion).

Folding towards the inside

Pinned and ready to sew!

       
JW did this to each end of the coat cuffs and the coat sleeves. Here is a close-up of the seam, once sewn. I think I can do this type of seam, but it would take me MUCH longer than JW!

Look at that pretty seam!

All Seamed Up!

At present, I've been trying different methods of using the coat cuffs with E's jacket. In the end, they all look largely the same as she's moving around, so here is a current picture of the coat and separated cuffs. Elena is testing out what I'm calling "coat cuff tethers". She has acknowledged that if she has to snap on/off the coat cuffs to either the rest of the coat or the crutches, she'll probably just stuff them in a pocket instead and end up eventually losing one/more cuff/s. I'm trying to find a way to keep them attached to the coat, but easy to maneuver with the crutches.

Coat shown with tethers

Coat on with tethers (a bit too long)

       
The idea is E can put her coat on, then while sitting or standing, put on her crutch cuffs and (again, sitting or standing) then use one hand to help the other put on the coat cuff.

Side view. Coat cuff dangling

Putting on second coat cuff

       
Once the coat cuffs are on, the coat itself fits well, there are no bunchy elbows, and most (if not all) of Elena's arms are warm and cosy.

Completed look

Front view, coat cuffs on

       
The procedure of putting these on and off is still a work in progress. The tethers are a bit too long (I attached them with a thin double cord to each of the shoulders, not one long cord from one coat cuff to the other--like you've probably seen in a lot of toddler mittens) and sometimes they spin around the crutches. Elena complains that her hands get caught in them a little, so I can fix that by braiding or knotting the two-ply cord. She hasn't mastered the art of putting her coat on with dangling sleeves with a backpack (I recommend she hold the coat cuffs in her hands while putting on her backpack). It'll take some practice, no matter the final iteration of separated sleeves. I strongly believe that the coat cuffs have to be physically attached to the coat in some way, as to not lose them. This alteration also leaves Elena's hands cold, so she'll have to wear gloves or crutch pockets.
         
Thoughts? Suggestions?

HUGE thanks to Boden, for giving me the opportunity to try this with a coat that fits Elena exceptionally well, and that is perfect for the weather and the challenges associated with this project. Thank you to JW for her sewing expertise and her time to help make this coat a success!

Quick Recap: Breakthrough (sort of), End of 2018

Hi everyone,

First of all, thank you all for your comments--truly, you are extraordinarily helpful at times when I feel like no one understands our situation. I feel like the biggest issue I have is trying to combat/learn our way out of issues at home when I do not have permission to write about them in detail, or at all. (For any new readers, Elena and Vivian have to approve anything I write on this blog about them).

So I'll do my best.

First, the breakthrough.

We have been working on a lot of self-sufficiency/executive function tasks/sequencing/attitude things for YEARS with our educational and psychology team. The reality is, we really haven't made much progress. We are considering a psychiatrist; not immediately, but the possibility is looming of getting help that way. (I understand that there isn't a lot of detail behind this).

Essentially a lot of this boils down to Elena being able to do things, but just doesn't. (Basic things. That she can do. I swear, taking all your comments into account, I am not asking too much with my demands.)

So, we are trying to find ways for her to practice skills without increasing her isolation (ideally, if she isn't ready, we don't just leave her at home, for instance). This has been a near constant struggle.

What ended up working was using her upcoming Chorus competition field trip (to Nashville) as bait.

I simply told her I wasn't going (as chaperone, or as her helper).

Her mouth dropped.

And then I told her if she wanted to go, I would not let her delay the group; she would have to find a way to prepare herself, using methods we have been trying to teach her, and she would have to demonstrate she was capable of this by a certain date or she would not be able to go.

So, this worked for a few weeks (a record!) and then sunk back, but as she realizes I am dead serious, I think things are getting better.

End of 2018

December was a whirlwind of end-of-school performances, medical appointments, and lots of time dealing with health insurance. My in-laws came down for Christmas; we always love having them, and they were especially helpful this year! My family joined us the day after Christmas and it was wonderful having everyone here. Dad is doing okay, Jason was our chef and dinner was lovely, and we even managed to get a family picture!

I don't know about you all, but my 2018 was a few amazing highs peppered among a lot of lows. Among the high points was my trip to Africa, spending time with friends and family in a few select cities (DC, NY), and our trip to the beach. The lows are more of the struggles vaguely described above, of course, my Dad's diagnosis, Jason's traveling for work, and navigating Vivian's epilepsy--which took about 3/4 of this year. I've been trying to take care of myself and our family during this time by stressing healthy eating, regular exercise, and a regular sleep regimen.

I know that the New Year is just another day, but the idea of starting fresh is appealing. Here are a few lessons I've learned this year, in no particular order:

1. Keep the best notes possible regarding health expenses. You never know when someone will be hurt or sick, and it can save a ton of time and stress if this is organized. I thought I was good before, when I blew out my knee in 2015--but Viv's condition is pretty complex. My plan needs some tweaks, including better digital organization, but I'll get there.

2. Everyone says it, but it's true: take time for yourself. I enrolled myself in an adult beginner tap dance class; I'm not good at it, and I can't make it every week, but I try, even if it's been a terrible night at home. I'll even get a sitter. The physical and mental challenge of tap really gets me out of my negative headspace, I can't possibly focus on problem solving home challenges AND getting the dance combo right.

3. Make an exercise goal. I joined an instagram challenge (something I've never done before) and while it wasn't super difficult, it made me structure in exercise where I wouldn't have otherwise. Now I make monthly short-term goals, and I've been doing well on them for the past three months. My biggest achievement (I think) is I've biked 50 miles/week (on my decade-old fluid trainer in the cold garage, mostly) for the past three months. I have bigger fitness goals, but it all depends if I can jog again, which I'll be working on in 2019.

4. Get fresh air every day. I know when things are negative, or cold and grey outside, sometimes cave days are good--but getting out, even if for a short while, makes them better (I think).

Neuropsychology Evaluation: Vivian and Elena

In September, Vivian had a neuropsychological evaluation. Basically, Jason and I had seen some unexpected changes in Vivian since her epilepsy diagnosis in January.

The differences were slight, except for the obvious change in energy/tiredness. She stopped reading long novels, and wasn't working on independent projects like she used to--projects that could last over a few days. Sometimes they were construction projects, sometimes painting, sometimes stories. They just seemed to vanish.

We weren't sure if it was a lull, or a real change, or if it was or was not related to epilepsy. I found out her condition qualified her for a visit to the neuropsychologist.

Vivian was evaluated over the course of two days. The eval consisted of a few questionnaires for me on her behalf, and a series of IQ/problem solving tasks. In short, Vivian is very intelligent, a good problem solver, highly motivated and enjoys being challenged. What was surprising was sometimes she misses "the big picture" type of question. While we'll never know whether or not this was always how Vivian was, or was going to be, Jason and I believe our observations of Vivian (types of books, projects, etc.) are different than they used to be. We've also seen her reading comprehension scores slide, even though she's on the higher level of scores related to her peers.

The neuropsych eval strongly hinted that this has been seen in epileptic patients. Normally this is not a side effect of medication, and was my suspicion, but rather a function of seizure effect/brain damage. Vivian's MRI shows no abnormalities. The evaluation gave us strategies to help Vivian as she grows older with things like reading comprehension, should we need them. In essence, this is a "baseline" for us, in case Vivian starts behaving differently or starts having trouble in school.

I'm glad Vivian was evaluated. I was disappointed that this was never recommended for Elena, so I asked the doctor about it. We had a good, long talk; basically, I noticed that when filling out the questionnaires for Vivian, I would have essentially recorded the opposite for Elena (self-sufficiency, social behavior, responsibilities, etc.).

She told me that currently, if a baby is born and determined to have a brain injury (as Elena was), their record is immediately flagged for a neuropsychology evaluation during her elementary school years. This can help a child who struggles with independence, personal responsibility, executive function, and social interaction--basically, all fields Elena (and many other kids) require assistance/help. It can provide strategies for her, and our family, to help achieve goals, manage expectations, and improve self-sufficiency. I wish I had known about this sooner.

I had Elena evaluated in November.

Our main question for the neuropsychologist was regarding our expectations for Elena, and if they were reasonable. They are not outrageous. She is intelligent, even though she struggles with some concepts, and is verbally talented. There is more to her stubbornness and lack of progress (in self-care) than just "being a teenager". It's a mix of "other', teenage angst, learned helplessness, and unwillingness to change (she is happy how things are, doesn't want to do more for herself--other people doing things for her suits her just fine, etc.).

The biggest message we got from the evaluation was that Elena is exhausted. Mentally and physically--the day exhausts her. She feels overwhelmed. By everything. She does not get excited about learning something new, it does not motivate her to do more with it--it just exhausts her. (She is not depressed.)

I thought that was how someone feels if the subject matter isn't interesting to them. I get that; if you don't like what's being taught at school or at home, it's a drag. To me, this would indicate nothing at school interests her--which I know isn't the case. And even though it's exhausting to her, she is doing much less than your average teenager--she has to be able to handle more, if she's ever to be a functional adult. Or functional teenager, for that matter.

The psychologist and I were a bit at odds, mostly b/c she was talking about how to encourage Elena through constant praise, very Kazdin-method type of lifestyle. I am convinced this doesn't work on a smart teenager--she can see right through shallow praise, and it backfires on us.

So, in short, we've been trying to encourage good behavior and try to be more patient. It basically just gave us more responsibilities than ever, and didn't help our home life much.

But, we eventually had a breakthrough. And that's where we are now.

6 month recap: Summer to now, school edition

To put it mildly, Elena has been struggling; with/because of her, the family has been struggling too.

The summer recap, in a few sentences: swim team was good, Elena and Vivian (!) both participated. Elena got a legal breaststroke this year! Vivian went to some fun camps, and Elena went to sleep-away camp at a small community college. (We sent her because she did not want to make progress on being self-sufficient; this came to a disastrous head during a chorus field trip to Toronto April 2017.)  She ended up having a great time--we figured she would, but it was a rough transition. We went to the beach (you can see some cute pictures in the Instagram feed in the sidebar). We went to NYC, and had a lot of fun. We had a lot of Vivian stuff going on--she has had 5 EEGs this year and tons of appointments. She has some "jerks"--not seizures, according to EEG, but situations were she is not conscious and sometimes hurts herself, only when she is *just* asleep or *just* awake. Jerks including falling off beds, resulting in hitting herself, or hitting her head (again--caught on EEG and NOT seizures). I was in protection mode when she was asleep, so I wasn't getting much rest. We bought a SAMi camera for night monitoring (it is a motion activated monitor that you can customize to record video footage because of sound or movement). Best Purchase Ever. She is doing well right now; for whatever reason, the "jerks" have stopped, and we are weaning her off one medicine while preparing to increase her Oxtellar medicine (because she's grown some).

School started--Vivian in 4th grade, Elena in 8th. Vivian still struggles with staying awake some days, but in general she is doing well. Elena had a rough start to 8th grade, to put it mildly.

Elena does not have an aide this year. This is a huge change, and she's very happy about it. I was adamant about the weight of her backpack this year, since she won't have anyone to help carry. That took some convincing (no aide, no extra weight, end of discussion) but it's going well. I am happy that E can handle herself on her own now--she is still very small, but can advocate for herself (needs to leave early/late to avoid a packed hallway, change for gym class, etc.). What I didn't realize, but suspected, were other things the aide did in terms of Elena's supposed-to-be-personal responsibilities. As in, keeping track of Elena's assignments, making sure her homework was organized and turned in, planning assignments for the week, reminding her to clean up, finding her a place to sit (be included) at lunch/assemblies/etc., reporting to me her feelings regarding school work, inclusion, relationships with peers and teachers. I get nearly no feedback from Elena or her teachers regarding her school day--maybe that's normal, but this year it is an abrupt change. She seemed happy without the constant presence of an adult, but has zero experience with being an independently responsible middle-schooler, and it shows.

Another issue was her math class. Elena took a "bridge" course over the summer to see if she was ready for Algebra; her 7th grade teacher (who we love) acknowledged that she thought Elena would have difficulty but she was capable. The bridge teacher thought the same and E was placed in Algebra this year. Because of scheduling restraints with her other advanced classes, Algebra was her last class of the day. I knew this would be a problem, b/c E frequently needs extra time to finish tests and quizzes (per her IEP) and she is worn out, mentally and physically, by the end of the day. Her education team insisted we try the schedule and see if we could make it work.

Elena tanked Algebra. It didn't help that her teacher was new to the school, new to teaching the subject, frequently unavailable for discussion with me, and very rigid regarding how she wanted information on a page and how she wanted tests and quizzes completed--regardless of what was in Elena's IEP. Elena would tell me horrible things that would happen every day, b/c she couldn't finish, or couldn't see the board (even though she asked to move her seat), or the teacher wrote fast and erased everything, etc. I decided to take all these stories with a grain of salt, just in case Elena took liberties with what happened on a given day.

Elena was failing. Her anxiety related to math completely consumed her; she literally spent all her free time doing math, made it very difficult for us to help her, spent so much time melting down over homework--there was no time for anything else, nor a refuge for the rest of us. I tried going through her case manager, but nothing really changed; I tried talking to the teacher, which went nowhere. The school psychologist didn't answer my emails. We found a tutor, who was wonderful, but Elena couldn't keep up with the pace, her math grades stayed low, while her other subjects dropped. She was begging to get out of the course. I went to the principal to find options, and he gave one; switch Algebra teachers, and lose the rest of he classes she loves (go to standard other classes instead of honors classes, and with all different teachers). I was angry and disappointed and unsatisfied with this one choice.

Elena agreed to ANY change, as long as it would get her out of her current situation. She was MISERABLE. She hated school, kept calling herself stupid, sobbed every day at pickup. I kept trying to get appointments with people who might be able to help us, but could never get a meeting to make actual change. I have NEVER had an issue like this with Elena and school, EVER--it was a new, horrible experience for me in the public school system. I finally got a meeting with the principal and demanded that she get out of the class, for her psychological well-being; I requested a lower math class, which was something no one else considered. She ended up changing her long standing F to a C with a major project, and then we switched her to the 8th grade pre-Algebra class.

I have never seen her so happy this year.

Her confidence is up. She is able to spend more time on her other subjects, and those grades have recovered. Sure, I think she needs more of a math challenge right now; we are keeping her tutor, who will "slow-roll" algebra concepts so they will be familiar to her next year, while addressing other issues she has (transcription errors, word problems, organizing work, and fractions). She is working on organizing her schoolwork daily, weekly, on her own; before she was essentially paralyzed by Algebra anxiety/workload. She has time to play, exercise, and stretch, which she didn't before.

It was absolutely the right choice--and one that Elena helped make a reality. I had her make the final decision, so she could own it. We finally had some literal and figurative breathing room.

And here we are

Hi blogland.

It's been a really, really terrible 6 months.

No joke. I wasn't sure if I could write about


Vivian's epilepsy, horrible complications peaking in August

Elena starting school, first time ever having issues with coping with grade level academics

desperately needing more psych services,

continuing issues at home.

For months.



Then my Dad was acting strangely

diagnosed suddenly with cancer.





I'm ready.



Recaps starting tomorrow.

For any of you still reading,

thank you for your support.

Well, it's August.

Hi blogland. It's been pretty busy.

Instead of doing a massive recap from April, I'm going to update the April Chorus post. There's just too much to cover, so I'm going to start from now.

Elena

Things are going okay. School starts next week, and there's been issues related to her mobility. Mostly issues related to Elena doing work to preserve and protect her mobility. As in, extreme reluctance to do her exercises, work with me, stretch, etc. This has been true for most of this past year. And the results are what you'd expect; she's less mobile, has less endurance, and her crouch is worse.

Given the fact she does NOT want a school aide (too late, she absolutely needs one), and she desires to be more independent, we're trying again with a strict(er) workout/stretching/TherEx program. But we are starting from now, which is definitely different from last year.

There is still the chance of surgery. Her crouch is pretty bad. We will see if we can make improvements with the strengthening regimen.

She has some goals this year, besides being a good student and continuing her singing; one is making a workout app. I'll spend more time writing about this later, if it comes to fruition. Another one is to make a commitment to swimming throughout the year.


Vivian

Oh boy, where do I start here? In general, her condition changes approximately every 3 weeks. It sounds impossible, but it's true! Her major seizures have been controlled with medicine since approximately the end of May/beginning of June. We switched from generic Trileptal to Oxtellar (same dosage, same drug, but Oxtellar has a slow-release formula which greatly reduced her side effects) and she takes Onfi nightly. We are now down to less than 2 seizures per month.

As the seizures went down, her "activity" went up; she slowly started, than erupted, in jerks/convulsions at the beginning of sleep (rather than the previous style of seizures, which were in deep sleep) every single time she fell asleep. Sometimes they are only 2 minutes, sometimes these bursts last for 3 hours. Sometimes she hypersalivates, sometimes she hits herself (with her hands/arms, or whacks them against things, including floors) resulting in bruising. Sometimes she wakes up, sometimes I easily wake her, and other times I spend 2 minutes trying to wake her up.

She has had five EEGs this year.

This "activity", at the last EEG (which was at the end of July) did not indicate seizures (!). They have become MUCH worse since then (peaked in Early August) and now, with the idea of practicing what I call "quiet mind" before sleeping ("pretend you're in a field of flowers, and there's a herd of beautiful unicorns, and if you're very quiet one might come up to you and you can pet it") these intense jerks have nearly disappeared.

FOR NOW. Like I mentioned, things with her have been "on the move", and everything 2-3 weeks something is new. With school starting up next week, I expect another eruption of sorts. So we're managing, I guess. My next project involves starting a food diary and making notes related to hydration/weather/activity to see if I can find any significant relationships for triggers. I am keeping my expectations low; I don't think I'm going to find any.

Me

I am trying hard to keep things together. Jason works hard at his job, and he travels sometimes, and he's a deep sleeper. I am a light sleeper, and since Vivian is unpredictable, I've basically been on Vivian night watch. You can imagine how much uninterrupted sleep I get. We finally bought a Sami3 infrared monitor/alarm for Vivian; I'll report on that in about 2 months.

I'm trying to keep our family active and have the kids be kids; they were on the swim team, both went to camps, we went to the beach,  played in the lake/river (check out the instagram feed in the sidebar!) and we just got back from New York. I'm just a little too tired to blog right now.

School starts next week; I have a few other meetings with E's team+teachers before it starts. Vivian has her neuropsychology exam next week (basically, it's an IQ test as a baseline; we've seen some decline since starting her meds. It's not much, but Jason and I both see it, even if her new teacher will probably think she's great). Right now it's a juggle between family, appointments, school prep, and the odd treat for Jason and myself (date night, bike/jog for me).

Today is The Day!

I'll have to do a recap later on things in the "next up" sidebar; today is the day we have been working towards ALL YEAR.

Elena is in the elite women's chorus; they put on an amazing end-of-year concert, one day only. It's called The Rock Show, and they have professional lighting, a warm-up band, one costume change, and a end of year ceremony. We went last year as spectators, to see what prep Elena would have to do if she made it this year.

Besides an intensive rehearsal schedule, Elena has other things she's been working on: how to physically prepare herself for the 45+ minute performance, posture, stability on stage (close call in during the Toronto performance, I'll write about it later), dress, navigation, etc.

TONIGHT IS THE SHOW.

Here's a youtube link to the show! (if you follow this, the rest of the songs are in the sidebar.) FYI, sometimes it's hard to see Elena b/c there is a chair near her in case she fatigues and needs to sit. She didn't during this show, but she has in the past.) Enjoy!

First Song of the Rock Show (I think)

Award-winning song, "Fly to Paradise"


One of my favorites! "Can't Help Falling In Love With You"

End of 2017/Beginning of 2018 recap

It's the Avalanche of a wrap-up recap. I'll do my best.

December 2017

I spent a lot of time trying to "winterize" Elena's trike. I made a clip-in shoe by putting the screw plate in an old sneaker, and attaching a SPD cleat (this typically wouldn't work for kids b/c pedaling with this on a soft shoe, like a sneaker, would bruise the foot; b/c E wears SMOs, it's fine). I also found a trike trainer, which was gifted to us by SportCrafters--it's a roller designed for single drive cycles (like E's trike, which has a single-rear drive). We try to practice 2x/week, but with her schedule it can be tough. Elena likes to try different positions on her trike, which is great--but these don't work as well off the trainer (she can tip). My goal with the clip-ins is to try to work on her endurance (we are at 20+ minutes on the trainer) and try to have her realize where her foot should be on the pedal when she rides (often she puts her heel on the pedal instead of the ball of the foot).

Shoe, cleat with pedal attached (note angle of the cleat position)

The Mule with roller trainer

Shoes on pedals. Note that the toe is angled outward to accommodate E's anteversion.

I added pedal extenders so E's knees won't hit each each other as she pedals. I am holding a smaller size, while the larger extender is mounted on the bike (my finger is touching it).

Our big event was we went to New York for Christmas! We have been to The City several times, and feel pretty comfortable getting around--but this was the first time in cold weather. And it was cold. This means lots of layers, and navigating transportation and layers with crutches/wheelchair.

Jason managed to snag a hotel close to Central Park. This would have been perfect in the summer, as we did a lot of walking; it was so cold, we didn't go far on foot. It was icy and slick in places, and when Elena is bundled up, walking is pretty cumbersome (winter coats with the loftstrand cuffs, especially!). The issue with hailing a ride so close to Central Park, once you get in the car, you literally don't go anywhere for at least 10 minutes--which makes walking, for most folks, a lot quicker than riding. In general, we took the chair with us; there were plenty of times we didn't need it (but still, better to have it just in case!).

Central Park carriage ride

Baroque Christmas tree

We enjoyed seeing lot of decorations, lights, and shows (including The Nutcracker and our favorite, the Brandenburg Concerto). 

Macarons in Bryant Park

Modern Pinball

Overall, the trip was a success, but navigating the city is much easier when the weather is warmer.

January 2018

Normally I put together yearly goals each New Year. The short list: (Amy) visit Antelope Canyon, work on jogging and biking; (Jason) rehab to be able to run his races/marathon; (Elena) complete the neighborhood bike loop (very hilly), visit Paris (?!); (Vivian) see Spanish dancing, go snowboarding, run a business (she wants to make her own shop).

E was inducted into the Astronomy Society here, in the first group of the Future Astronomer's Club. She can find stars using her telescope, use a sun scope, and identify a few constellations. It's a great group!

January was kind of a mess, given that's when we received Vivian's epilepsy diagnosis. We still managed to go skiing (E did a great job on her 4-track skiing, and Vivian learned to snowboard!), but the weather didn't cooperate so we only had one opportunity (short winter).

4-track

We also decided late 2017 that Elena would do less physical therapy and more personal training--the idea here is she would be doing more exercise in an age-appropriate setting (our therapy center is more focused on younger kids). We set out to find a personal trainer who would be fine-tuned to Elena's needs, as well as any other appropriate group exercise settings. She was a part of a short-lived group of disabled women, which she loved (unfortunately the group fizzled...we're working on other options).

Pumpin' it up with J at The Gym

February 2018

I went on a Tanzanian Adventure. It was incredible! (That's the short version).

Lion. NBD

At the Serengeti airport waiting on a bush plane. I'm nervous.

We switched Viv's meds from Keppra (it left her practically comatose, and that was below the working dose for her age/weight) to Trileptal. Short story here is, we're still trying to find a med that works.

Viv preparing for her sleep-deprived EEG, watching movies/playing games/doing crafts. Temple (our cat) trying to comfort Viv.

March 2018

Just trying to keep up. Elena is doing relatively well keeping up her schedule: before school 3x/week, Bearettes (elite chorus), DnD club (gaming) 1x/week; after school she has PT (every other week, Mondays), Personal Training (Tuesdays), Psych (most Wednesdays), workout group (Thursdays), and Personal Training (Fridays). Weekend is bike or swim. (sounds like a lot b/c it is; E is done weekdays by 530 at the latest). For Vivian, she has baseball 2x/week (games and/or practice), goes to the climbing gym with me a few times a month, and plays with friends regularly.

Almost caught up!!

Seizures

Seizures have become an almost nightly occurrence. Hypersalivation, face frozen, choking sounds, gurgling, waking from sleep, scared. Lasting anywhere from ten seconds to almost three minutes, sometimes more than once a night. It's scary, and complicated, and I'll write more about it later. Needless to say we've all been busy around here. I know a little about seizures, given my connection to the CP community. I've even seen a few, but they weren't like these. 

And it's not what you think. It's not Elena. 

It's Vivian.

This week she was diagnosed with focal epilepsy. More tests are coming, and more information. 

Right now, we are managing okay. I've had some tough days here, a lot of sleepless nights, but today at least, I'm feeling like the bring-it-on, tough-as-nails, steeled-Mom that I know I can be. But if you know about seizure medication (she started Keppra, and we were given Diastat as emergency medication), or about seizures that have common elements to Vivian's (she is 9; no current known triggers after her first EEG; not expected to happen during the daytime) I'd love to know more about your experience if you'd like to share.

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?

The Mule

On October 21st, we traveled to JMU for the official trike hand-off. If you're new to this story, I recommend checking out these two posts.

It was a beautiful, warm October day. Engineering student Kristin had spent the summer tweaking, painting, building, and finishing Elena's new trike with the features we had picked from the spring. We were all so excited! Students, professors, and administrators came (some with their families) for Elena's inaugural ride.

You can imagine how emotional I was--Elena walked up to it, all smiles.

Love at first sight

She climbed right on, it fit her, and she literally just took off!

Finishing the first loop!

Kristen dubbed the trike "The Mule", because Viv and I put our stuff in the rear basket--having Elena carry our stuff for a change.  In addition to the basket, The Mule features the following: low step through (for easy mounting), single rear drive train (right rear), custom trike adapter (smaller, lighter than commercially available), dual front and rear brakes (operated by one lever, left hand), slightly large pedals (to help her stay on a little better), forward pedal design (a more comfortable ride/better leg utility for her), 3 gear shift (trigger shifter, operated by right forefinger and thumb), water bottle holder (in rear basket; she can easily get it when stopped), bike bell (left hand). Also included but not shown is a larger front fork; this frame can accommodate 24"wheels (these are 20") in either a bike or trike orientation. The trike fits in the van (this was a requirement) when the front wheel is turned sideways. It weighs approximately 40 lbs (35?) and I can put it in the rear of the van (with some difficulty; without a crossbar (low step through), there isn't much to hold when maneuvering).

So that was October.

We have been riding every week since then (check us out on Instagram--the feed is in the sidebar). We started on a paved path near our house by the river. It's easy and pretty--and now no problem for Elena.

I can't keep up on foot with these two

We've tried the gravel trail; large gravel isn't Elena's favorite. We've also discovered the Virginia Rail Trails system--our favorite so far has been High Bridge!

It was WINDY!

Elena's max distance right now is about 4 flat miles. When she tires, her feet fall off the pedals (she typically puts her heel on the pedal, and when fatigued, they fall off easily). So I've been thinking about ways to help her keep her feet in place.

Gravel

Riding by the beach

I have 2 main ideas, one for outdoor (involves magnets, still waiting on some parts) and for indoor (clip in pedals). I wanted an indoor trike option during the winter. That's almost figured out--wait until the next post!

Surgery Next Year?

I really want to write about something else, but this topic permeates everything we do on a daily basis around here. So, here's the short version.

After a slew of new doctor's appointments, we are struggling with a surgical decision. Elena suffers from crouch--many pictures posted don't show it, and I haven't posted many videos lately (we've been pretty busy with appointments...I feel like that's all I do these days). Anyone familiar with E's type of CP knows what I'm talking about. We've been dancing around the surgery question for three years now, trying to buy time.

Why? I guess to see if it's worth the risk. To see if she can get strong enough to "not need it" (is that a thing? In the long run, I mean?). To wait until she is more emotionally mature to deal with the aftermath (big one here). To see how she develops, to possibly have more choices in terms of procedures. To hope that technology provides a new option. All of these and more.

They want to do a femoral derotation osteotomy on her right leg, and hamstring lengthenings (traditional-style, not subcuteaneous) on both legs. The surgeon said that recovery is 4-6 weeks (for WHAT? That sounds ridiculously short), so I am assuming it would be 2-3 months of pain/rehab/slow recovery until we can get her moving regularly with a walker or crutches.

Has anyone out there done this? Do you know if my timeline assumptions are close?

My biggest issues with this are that our trusted PTs don't want this surgery (typically they stress PT, exercise, not surgery) and the surgeons aren't involved with the rehabilitation process so they can't prepare us. I've heard lots of bad stories about this procedure--my kid never walked right again, rehab took forever, they had complications (infections, etc.)--but I haven't heard any positive stories. They must be out there, or this procedure wouldn't be so commonplace. I did find one, an upbeat teen, but this story was long ago, and I couldn't tell if she had CP or not.

Here is our current plan. (ADD NUMBERS HERE FROM Dr's Report regarding crouch) Elena had a bad crouch/pain/kneecap fractures in the fourth grade. Once her pain subsided, we followed a rigorous Therapy Exercise (TherEx) program to regain strength, in the hope of halting her crouch. Not only did we keep her from getting worse, her posture actually got better--which was WAY beyond my expectations. She always regresses in the fall, and we continue this plan. This year is different, though, and her crouch is worse.

Elena is an almost-teenager and is highly resistant to me as her advisor and coach. This means more appointments, more therapists, more trainers (read: time consuming and expensive) when she already complains of having too much on her schedule. Her main PT has cut back on her sessions, b/c she said if we can't get our exercises done at home, going to PT alone isn't enough (she's absolutely right) so we're going to PT less often, and substituting in any exercise that she will do. It's a change that hopefully will get her fitness up, and add some enjoyment.

Our current schedule is
Monday, PT (every other week); Tuesday free (if nice, bike ride); Wednesday swim (private instruction); Thursday Personal Training (gym); Friday free; weekend includes swimming (family time--we do laps and then free play) and biking (I am also working on an indoor trainer for her trike). I have put out a want-ad for a TherEx facilitator to come to our home (hopefully 1-2x/week).  I've taken out Psych services (now, I'm going to try to bridge the gap. We're not ready to "graduate").

It's six months until our ONLY window for surgery (if she has to have it during the school year, she won't be able to perform well in school or stay in her chorus group; summer is our best option). The plan is to hit TherEx/Exercise/Strength hard, and re-evaluate in 6 months. Maybe we could punt another year; I'm not convinced just putting it off is the best plan, either. But this is where we are.

If you have comments, I'd love to read them. Pass this along to anyone you know that might have some insight. Thank you!

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!