Friday, December 9, 2016

Middle School: Welcome to 6th grade

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

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

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

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

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

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

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

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

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

Thursday, December 8, 2016

Girls in the City: New York! (Recap)

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

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

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

Rock Center

Sister LOVE

Mom, Pack Mule NY Edition.

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

Girls on the Subway

Lady Liberty in the distance

Doing their best Marilyn impression

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

The Met

The Met


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

Alice in Wonderland


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

Pack Mule: Vivian is tired this time

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

Girls in the City

Insomnia Cookies at night

Girls in an Elevator

Art Park

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

Popsicle on the go
Chilling Out

Pack Mule, thirst quenching edition

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

Times Square

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

Pack Mule; heading back home by train

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