Sunday, March 25, 2012

Wheelin' Weekend

Here is E's wheelchair. When I took it out of the car to take a picture of it, I thought, you know what? It's pretty cute. I call it Little Red.

Little Red even fits in the car, without taking it apart. I took this and the Convaid up to DC (I have both on "permanent loan"). Jason was flying back into town that day, so we decided to make a run for the Cherry Blossom Festival in DC with the kids and my parents.

I packed the Convaid and the wheelchair b/c I figured the kids would be in each of them. I know that they are both designed for Elena, but I wasn't about to bring a third item for Vivian. I was curious to see if Elena preferred one or the other, and how they operated in a "field trip" situation. I figured Vivian would just ride in what ever E didn't. I didn't even have time to put E in either one before the car was packed, so I assumed both would fit okay. We left for Grandma and Grandpa's house, right after soccer.

Coach West showing E how to kick with her instep

Saturday morning I tried E in both chairs; the Convaid was really too small for Elena, which was a surprise. Little Red was a perfect fit. When I saw her in know, I wasn't even sad. She seemed happy it just fit her. She wanted to wheel it. I thought...well, I guess our new normal will just have to accommodate Little Red. So, we packed everything in the car, DC bound. My father had warned us that walking--for the able bodied-was extremely slow-going due to crowds, and parking during the Cherry Blossom Festival was extremely scarce, even for the handicap spots. So we decided to all ride the Metro, chairs and all.

E is helping to buy FareCards

Waiting for the Train--(Vivian keeps on saying "METRO!!!" in all of these pictures)

Boy did they love the ride!!!

The Metro really wasn't all that crowded; the forecast was for sporadic showers, so maybe that kept the big crowds away--not to mention peak season had just ended (it came much earlier than anticipated). I wanted to try for a picture, even if it was just of a few trees. We arrived at the Smithsonian Metro station when I learned my first lesson: just because some modifications are wheelchair accessible DOES NOT mean they are wheelchair friendly. For instance:

There are elevators in the Metro. If you want to wait 20-30 minutes to go up one floor. One guy didn't, and tried to go up the escalator in his chair--he'd obviously done this before, but this particular time something when wrong (and he wasn't buckled in--which was probably a good idea in this case)--his chair went backwards while he was holding the handrails, and Jason left me with the kids (both strapped in their chairs) to save him AND his chair. Scared the crap out of me. If he had fallen down, strapped to that chair (instead of just falling out and riding the escalator on his back) he could have SERIOUSLY been hurt.

There are paved walks on the National Mall. They are paved cobblestone--which means they are annoyingly bumpy. And there is a small strip of paved stone amid a lot of loose pebbles (which are the same color). Guess where everyone wants to walk? On the paved cobblestone. Some of them move for a wheelchair, but not many.

I saw a tour group on Segways. THAT SEEMS PERFECT. It's fast, upright, maneuverable, and you can park it and walk if that's an option for you. There is a family in the next town over who owns a tour company for all-terrain Segways (or, they used to)--their son has CP (more affected than Elena) and (note to self) I plan on talking to them.

Cherry Blossoms!

It didn't just sporadically rain shower-IT RAINED. Almost constantly. And it GOT COLD. Elena kept trying to wheel (or pretend to, she's not good at it) b/c of the novelty--and ruined her sweatshirt in minutes with the wet mud from the wheels. How does any manual chair user keep their clothes clean?

I had the kids hold umbrellas--which they both liked--but IF you were trying to manually push a chair yourself, and it started raining, that's not an option.

We ducked in a cafe 1) b/c it was lunchtime and 2) to get out of the rain. It was crowded. Very difficult to maneuver two chairs through. We did get a table, and the kids both ate in their chairs. E got out to use the bathroom--which was also crowded, and I could just imagine how difficult it would be to get her chair in there.

We went to a museum--there was a WAY long line, in the rain, to get in the building (as everyone had to get into security). The line happened to go from the front entrance down four rows of steps, and around the building. My dad got in line, and we waited for him to get to us after he made it past the steps.

Not many people gave us nasty looks--but seriously, how else are we supposed to wait in line down steps?

Even though the exhibit we wanted to see was under construction, the girls were still very well behaved. The metro ride home was still fun for both kids, and then we drove home (both kids passed out in the car).

Overall, a pretty successful trial day, I thought. Both Elena and Vivian preferred the wheelchair to the Convaid. Little Red proves a smooth ride, with the possibility of independence.

And then we got home.

All throughout that evening, through today (the next day), Elena expected us to help her. Hold her hand, carry her (!), help her, bring things to her--when up until three days ago, she did all of these things herself without question. I have read about learned helplessness, but I never imagined it to manifest this quickly. It could be that she was tired, or had really tight muscles from all that sitting (Metro, wheelchair, car rides) but frankly, I was SHOCKED at how much help she wanted. That is not okay.

But I'm not trying to read too much into this. We're back home, back to our real life--a life in which Little Red is relegated to Field Trip Status. So, we'll see how things go. Despite the weather, this weekend has been EXTREMELY educational, to say the least.


Just the Tip said...

Hopefully she's back to her normal independent self soon. I've never gone to the cherry blossom festival and I really want too, that and the tulip farm in Madison. But both are going on now and we are busy busy busy. Sigh.

Glad you had a productive weekend!

Joy said...

Glad you had a fun first adventure! The girls look great in cherry blossom pink! Sorry my good weather vibes didn't work.

I complain about the Metro elevators on a regular basis, but I've never waited more than 5 minutes for one, including the one at Smithsonian. Weird. They are out of the way, and can take some time to get to, but it gets faster once you are more familiar with the system.

Re: umbrellas, there are mounts that go on the push handles that you can stick an umbrella in. I keep saying that someone needs to develop a collapsible canopy like the ones in convertible cars, but the ones that exist now are basically like building a tent, which isn't useful when it's raining.

About the mud, I think this is a technique issue. E's hands shouldn't be on the tires themselves; they need to go on the inner rims. And her forearms should be straight enough that they're almost vertical, not rubbing on the muddy tires.

Anonymous said...



Amy said...

Glad that you have no sadness about Little Red. It's just a helper when needed, a good friend, if you will. Fortunately for Elena, she does not need it all the time--just for long outings like this.

Emma is in hers pretty much all the time when we are out. Now with her hip issues, walking is out more or less, at least temporarily, as she does like bearing weight on the quirky right leg.

You managed to hit on every frustration that I have with using a chair. In festivals and other crowded events, people really cram those elevators. God forbid that the able-bodied would consider the stairs an option. That frustrates me because stairs are not an option for Emma AT ALL!

We are looking at a new chair for Emma too. Currently, we use a Convaid.

Please let Elena know that Emma thinks Little Red ROCKS!!

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Anonymous said...

I think her wanting to be helped was due to tight muscles. My friend who has CP drove 6 hours to his sisters' wedding and when he got home he was unbelievably tight, he had a lot of trouble moving for about 3-4 days and in certain positions he was even in pain. But I agree she should not be asking to be held. Even my friend said "I have no excuse" when he was tight like that.

Anonymous said...

I recently heard a 19 year old with CP speak about her life. She raved about her segway. She used it in high school to get to class and she currently uses it while she is away a college. She said it gave her so much independence.