Wednesday, May 18, 2016

Spring Break Recap!

Well, here it is, only a month late!

We decided to go on a "Southern Tour" Road trip for Spring Break. It was Jason's idea; he has always wanted to visit Chattanooga, TN. So we did a tour through there, Atlanta, and back through Charlotte, NC. Our plan was to leisurely travel through our loop, stopping every 2 hours or so in the car (so Elena and I could stretch), with overnight stays in Johnson City, Chattanooga, Atlanta, and Charlotte. This was our first road trip with the wheelchair; I am so thankful we have one.

Krutch Park in Knoxville!


This city was so CUTE and fun! Our big plan was to hang around the city and go to the aquarium. There are a lot of unique tourist spots, but we weren't sure if Elena (or I) could handle the terrain; we tried to do two main things per day.

Choo Choo!

Friends recommended Rock City; we decided to try it--there is a wheelchair path (limited access), but we figured Elena would be fine on crutches.

Exploring Rock City
Bravery across the swinging bridge to Lookout Mountain
Seeing 7 States from Lookout Mountain

It was so fun! There is so much to see--the terrain though is very challenging. Elena did beautifully with her crutches (one or two) and/or a handhold.

We considered exploring Ruby Falls; we had heard it was an underground trek, and weren't sure if it was too much to do Rock City AND Ruby Falls in one day. Elena insisted she was fine, so we decided to go for it.

Ruby Falls
The girls and I have been to Luray Caverns and loved it; Ruby Falls is a much more crowded, closed-space version of underground exploration. The path wasn't even all the time, and sometimes there was only room for two small people to pass at one time. The hike was long, and we were in the back so it was hard to hear our guide. When we finally made it to the Falls, it was pretty cool--but we didn't have much time to enjoy the scene before having to head back. We were all pretty worn out afterwards.

The next day we headed to the Aquarium. We loved it--it wasn't too crowded, and we really got to explore both buildings (fresh and salt water, respectively). Elena was in and out of the chair as often as she liked, so she was able to conserve energy for a long, fun day. We enjoyed a river cruise on a fancy boat--that went REALLY fast and could stop very quickly, the girls loved that part. Sporadic grass sliding on the park hill was another high point.


Grass Slide


Our next stop was Atlanta. We hung out at the Coca-Cola Museum, went to a baseball game, visited the gorgeous Botanical Garden and went to the Georgia Aquarium. We stayed close to Olympic Park so that these destinations were close; by close, I mean across the park. "Close" by no means translates as walking distance for Elena--she could walk there with her crutches, but then wouldn't have enough energy to enjoy the museum. The wheelchair was indispensable here...there when we needed it, and Elena could explore as much as she wanted to on foot.

Go Nationals!



After Atlanta, we headed home through Charlotte. We took a detour to Clemson for a geological museum--they had a questionnaire scavenger hunt that the girls absolutely loved. It took longer than expected because they were having so much the ride home was long.


On the long way home, we also stopped by Latta Plantation and the North Carolina Raptor center. The girls enjoyed the historical tour, and even though it was getting cold, managed to see most of the birds at the sanctuary.

Latta Plantation

With lots of stretching, good rest, and use of the chair, Elena was able to move well and didn't seem to have much discomfort. Vivian used the chair too when she was tired (and when Elena didn't need it). We made sure to bring her dynasplints (for night use as often as we could manage) and have her feet supported in the car. Elena and Vivian were really really well behaved in the car...this bodes well for future road trips! We had a great time!

Thursday, April 14, 2016

IEP and Assessment Overload (recap)

I'm happy to report that I'm past the "assessment fog" that persisted for the past, what, two months?

Assessments are good. I mean, it's important to know 1) where one (Elena) is regarding her physical/academic/social progression, 2) what are the next logical areas for improvement, and 3) realistic preparations for the future. Better to know than get, in Elena's words, "the bad surprise".

But they can really be a downer. Assessments can show you how far behind the curve your child is, if/when they will need intervention, and shove it in your face how hard it is to integrate them into normal life.

In our case, it was just…a lot of information. I guess I've been doing this long enough that the setbacks/differences aren't upsetting as much as this whole process (preparing for middle school from elementary school) is overwhelming. So. Much. Information.

I'm going to break down this recap into private assessments vs. school (public) IEP notes.

Private Assessment.

This isn't necessarily to prepare Elena for middle school, but our PT stressed to me on multiple occasions that Elena should be evaluated for Occupational Therapy. I did this through the school earlier this year; E didn't qualify for services. Basically, she was in the lower to normal range of fine motor skills (finish the picture, trace a certain line, identify shapes in an array, pick up small items, etc.). It took her longer to do the tasks, but she still scored within "normal" range. There was a definite deficiency in visual (FIND SPECIFIC WORD) processing--where the question involved moving a shape in your mind to find the answer. Basically, if Elena had to involve a motor process--pen to paper, for instance--she was going to perform better than if she had to do it in her head. In itself, this is not highly unusual; lots of people perform better when using hand-eye-mind coordination than just one at a time.

I chewed on that for a while. Our PT strongly suggested I do a private evaluation--where they would look at things that would impact her life in general, not just her academic performance. Jason and I were definitely looking for some help in this area, mostly related to time management and self-care. We had an OT assessment performed last month. Elena qualified for services. Her greatest deficiency is called "executive function", which as far as I can tell, means "figure out what you need to do in a space efficiently, in order, so you can leave that space and do the next thing". As in, get dressed in your room,  and do other things in your room (deodorant, brush hair, put hair up) before coming downstairs (instead of going up the stairs because you didn't put on socks, or shoes, or leave the only hairbrush you'll use up there etc.) . Use the bathroom before sitting down to eat, etc. Our OT gave us this homework (which she has never done before, for various reasons): When Elena wakes up (not on a school day), tell her to make her own breakfast. (I told her there was a smaller container of milk in the fridge; there is plasticware in a lower cabinet). She had to figure out what to do, what to move, how she would carry, etc., and problem-solve through the task. (It took a long time--but she did it, very well. No disasters yet, but when they happen, it'll be a learning situation).

Other things to work on involve her arms not at her sides (washing her hair in the shower, for instance--she's doing well, but it's a work in progress), ordering, organizing (regarding homework, diligence in cleaning up (otherwise she'll lose work, or trip over her things, or forget them, etc.).

The OT assessment and IEP were basically done around the same time; I didn't talk to E about them because I didn't want her to feel like there were all these things "to fix". Really, these are things that a lot of kids work on--but for Elena, they pile up and up and up--I don't want her to be overwhelmed with therapy or improvement tasks. It's a new idea for me. AND all this was going on during the school play production--so, a lot was already going on, so I figured any OT work was going to have to wait until after Spring Break.

School IEP.

This was a huge one. We met FOR THREE HOURS. I wasn't apprehensive of this meeting--Elena's educational team is truly fantastic, and want the best for her. There was one rep from the middle school (Special Ed; the PT was not available), and some of her current educators. Overall, the meeting was positive--very eye-opening for me.

My only experience with middle school was mine. The short version is it was fine, mostly positive; technologically lacking and no one had ever heard of an IEP. Times have changed, and I feel like new parents of middle-schoolers feel like they must be going to some alien nation where the only familiar thing is their child.

The Cliff Notes: Elena will have a full-time aide. This will probably feel like a setback for her, b/c for the first time she doesn't have one this year--and she's doing well. The school is just so much bigger, the classes much further apart, the necessity to carry and be on time--she'll need one. She will get her homework in advance (apparently most kids get the week's work on Monday anyway), and will have extra time to complete tests and large projects. She will have two sets of books (one at school, one at home) so she does not need to carry them at school. The kids get laptops--I asked how heavy they were. They said "pretty light"--that doesn't mean she can carry them, though. We'll have to test whether or not she can manipulate it and put/carry it in her backpack and plan accordingly. They have stairs and an elevator (only on one side of the school), they'll need to figure how what's fast/safe/appropriate. She'll have adaptive PE (pull-out), on a schedule she wants; they will also let her work on skills that they don't necessarily work on at school (her choice! she could bring in her bike, for instance, or do trampoline work, or try to work on tennis). We're not sure about lunchroom yet. She will have a special chair for each class (they made one last year, looks just like everyone else's chair but has a clear footrest so she has her best posture). Since there are multiple classrooms, she will have to have multiple chairs (that will have to be moved when the classes exchange). The logistics are complicated. They have a science lab, where kids sit, or typically stand. They use flames, for instance (what will E do? She can't use her hands without leaning on a surface, not great for heating elements or knives, and she can't sit down or be in a stander--what if she spills something caustic or catches fire? Things to think about!).

If that wasn't enough, the biggest issue I see for Elena is time. Things take her longer--walking, writing (they want us to use talk-to-text, I have mixed thoughts), self-care, moving things, eating. I tried to find something that could be done to save her some time…she needs more rest than her peers, so staying up late isn't a source of more time. Here middle school starts later than elementary--which means they get home later, and have more homework, making the after school-before bedtime squeeze even worse. After school they have cool activities (non-sport) that I think E would love; I don't want her to feel like she can't participate, or has to spend all her time with tutors. My best quick fix is to drive her to/from school. I figure that saves 20-30 minutes on each side of the day. I've been trying that lately, and it makes a huge difference (more on that in another post) in terms of fitting in fun, homework, and good rest.

There's more, but it's a jumble in my brain and I've put all the paperwork to rest for a while because I don't want to look at it right now.

Overall--I think we are in good hands. Her team want what is best for her, they want to work with me, and more importantly--they want Elena to have control over what she thinks is important. Elena is nervous about middle school; a lot of kids are. Jason thinks it'll be great (eternal optimist!). Elena tends to pleasantly surprise me in situations like this, so I'm crossing my fingers.

Sunday, February 21, 2016


I don't have a lot of time and I've been putting this off for a while...

We're going on quite a few adventures this year. My knee isn't 100% yet, but I can move around and carry pretty well. Elena's knees are in a "holding pattern" of sorts, so it seems like we can put off surgery for this year (keeping fingers crossed!).

I could really use your help, Doodlers in blogland!

In no particular order, we will be visiting Atlanta, GA; , Berlin and Munich, Germany; New York, possibly Chicago, IL and maybe one other trip this year in addition to typical family occasions.

The domestic trips will most likely be by car or train; Elena has never navigated a big city (like NYC) so I'm not sure what to expect in terms of how many blocks is too many vs. cab rides. I feel like the kids would love the NYC subway experience but I'm worried about navigating the crowd and steps with so many people. How do you get around so many curbs/bad sidewalks with a wheelchair/stroller/crutches? Do I bother bringing her wheelchair (not to much of an issue if we drive) or do we just use taxis? Are there certain events that are great for kids--and should I be concerned about crowds?

The overseas trip is a huge deal; we've never traveled as a family overseas, and the last time we went anywhere as a family on a plane Elena could still fit into a stroller. We are not planning on bringing her wheelchair or stroller (I figure we can rent one?) and I'm not sure how much walking is involved, or what sort of transport we will need. If you have any advice for plane/train travel, or Berlin/Munich attractions/mobility advice I would *really* appreciate your comments! Feel free to comment below or email me at cpmom2009 AT yahoo DOT com.

Thursday, February 18, 2016

The Dark Cloud

Well, it's been a while.

Elena knows (and approves) everything I write here, so I've thought long and hard about what I should post.

The reality is, I'm having a rough time.

Rather than go into detail about every mundane thing, I'll wrap it up like this. We spend a lot of time trying to teach Elena concepts, skills, self-care, etc. We give her opportunities, and try to help her make some of her own. But...they don't stick. She's like...a sieve.

Math concepts we worked on, and scored well on, vanish. She repeats everyday tasks four times because she didn't pay attention to get it done the first time--or second, or third, even when she's in a good mood and has no outside distractions. She doesn't seem to care that her actions (or lack thereof) hurt other people. Her idea of problem solving is nearly nonexistent.

She's had at least two new assessments (OT, which I should probably elaborate on in another post) and they have been helpful. Right now we don't have time for any new appointments (extra therapy, tutoring, sports, or other enrichment) b/c she has Drama club 3x/week (not all rosy there, either, as her involvement with the play and her castmates is lacking) and fitting homework and home life is time-consuming enough.

I wouldn't say these observations are new. I would say I am extremely discouraged that they have persisted so long, with very little improvement.

Friday, January 8, 2016

Late December Post

Somehow December came and went.

I had a goal of finishing (the majority of) Christmas shopping and decorating the house by the first weekend of December, so we could spend family time enjoying our time and celebrating the holiday season. And I did it! But...I didn't feel like I had a break until three days before the New Year. For those three days, I did almost nothing. And it was pretty great.

We ran into Santa while picking a Christmas Tree!

We went to tree lightings, Christmas caroling, and (free!) carriage rides!


We spent the day in Richmond with some family friends. There was a Christmas festival going on at Maymont, so we stopped by for live music, period costumes, ponies, beautiful scenery (and great company!) and a tour of the mansion.

Lots of great trees to climb!

E and her little helper

We hit the Botanical Garden at night, finally! I've been wanting to go for a long time. It made for a pretty late evening, and it was COLD. Still fun, though.

Viv loved the Rainbow Tunnel

We made ornaments and cookies. We played games and decorated the tree (again, with Elena doing all her own walking and hanging!). We watched The Nutcracker and played with friends. We played our favorite holiday tunes (A Christmas Together (John Denver and the Muppets) is our favorite next to Tchaikovsky's Nutcracker). We saw lots of Christmas lights. The weather was unusually warm...we joked about sunbathing for Christmas.

And the Tooth Fairy was pretty busy during December too.


We had a wonderful time celebrating with family. Jason and I spent a lot of time cooking, so most of my pictures have an apron. Here's me trying a jelly bean in our Jelly Belly Flavor Challenge game. 

"Baby Wipe" flavor. Not good.

And since I spent all Christmas Day making it, here's my Bûche de Noël. How does it look, mes amis?

Recipe from Bon Appétit. Yum! 

Wednesday, November 25, 2015

Rainy Family Day

The University presented a Family Day during the Film Festival. There were lots of events in which to participate, but the day was very rainy and it was crowded inside the building.

I wanted to take the kids especially for the instrument Petting Zoo--where kids could get up close and personal with different instruments and students that play them. Vivian tried almost every one, and got a sound out of everything she attempted except the trumpet. Elena didn't have as much luck; her mouth muscles and breath support are not as strong. She still enjoyed trying, and especially liked the cello.

Testing the Cello

Playing the Trombone!

Playing in the rain

A blog reader recently commented on what we do in rain, given Elena only has one pair of shoes, really. I found a pair of "overshoes" on and they work beautifully in rain! There are several styles available, but the sizing is questionable. Elena wears a size 2.5 New Balance shoe, and the size overshoe we bought is a size "S/M". The overshoes are not high quality, and they are hard to get on/off but they do work well for our purposes. This has been the first time E could really stomp/splash in a puddle!

Her umbrella hat continues to be of good use also. The attachments on the head band are a little uncomfortable, so I think I"ll be making some changes by sewing on a sweatband of sorts.

Rain Ensemble

Another change of note: look at her crutch tips. These are called Flexy Foot crutch tips, and they are awesome! For some reason, Elena has been wearing through her regular crutch tips--about 3 pair per month. She's been growing, and I hadn't realized this wear and tear with her last pair of crutches, but it is what it is. These Flexy Foot crutch tips have lasted over a month, are still in great shape, and have helped ease her fatigue while getting around on crutches. They are expensive; I bought them for $35.00 per tip (they do have replaceable end caps, which I haven't had to buy yet) but right now, I think it's worth the cost.