Sunday, March 23, 2008

It's a wide, wide world

Hannah has never walked outside by herself. She has been carried, pushed in a stroller or wagon or sled, or walked holding our hands. But today for the first time, she walked all by herself with her walker. She was so excited and kept saying, "I'm walking in the road!" I know, I know, we need to get her schooled on the part about not walking in the road. The point is, she's experiencing another layer of independence and it's just in time for playground season!


video

Saturday, March 22, 2008

Glamour girl

The girls got new sunglasses-even though we still have close to a foot of snow on the ground in some spots and it's barely cracked freezing all week, the sun can get pretty bright reflecting off the snow and they've been complaining that it's TOO bright (curse them: I say MORE SUN! MORE SUN!)

Here's Hannah all bundled up to go outside sporting her new shades. Look out world, here comes my glamour girl! (Isabelle looked very glamorous too I might add, but she refused to let me take her picture)

Political pause

This is a station break from our usual programming. In light of the latest fervor over the Obama/Rev. Wright relationship and the never-ending media blather about the November election, I had to give a nod to Wyclef and this powerful song.

Peace.


Thursday, March 20, 2008

Much needed getaway

Last weekend, B and I got to live it up like we used to in our pre-kid days. Our very close friend got married in a town not far from here so my parents came up to watch the girls for us. Friday night we went to the rehearsal dinner and out for drinks after. Saturday we were at the wedding which was a blast: I got to reconnect with so many friends, boogie, eat good food and laugh a lot. Saturday night we stayed at an inn near the reception and Sunday, after sleeping in a little and having a yummy breakfast, B and I went snowboarding for half the day, something we haven't done together since last winter.

I forget some times how much I love to be out and social. How much I love to eat, drink and be merry. And how much fun my husband is: He's a great date! See how relaxed and happy we look?:)
Of course, re-entry was a b*tch: the girls both have a cold, aren't sleeping great and are pretty crabby. But it was SO worth it!!!

Wednesday, March 19, 2008

It's hard to be cool

I took the girls to music class again and this time, I decided to bring Hannah's walker. I told the instructor at the last class that I might bring it and she was very supportive. I didn't go into details about Hannah's diagnosis, I just said that she used one and I thought it might make it easier for her to fully participate in the class. She was all for it.

So far, we've only brought the walker out with us on a few other occasions: twice to the mall and once to an environmental education center. All three times, I was pleasantly surprised by the lack of "weirdness" I experienced from people who saw her using it. We got a lot of smiles and curious looks, but that was about it. Given that we've been to music class a half-dozen times and have seen most of the same moms there, I didn't think twice about bringing the walker because I figured if there were any place where I would feel supported and safe, that would be it. So I was a little blindsided when that was where I had my first real encounter with someone's obvious discomfort around disability.

During class, when the instructor had the kids get up and dance around I put Hannah in her walker. When the instructor had them sit, I sat her down and put the walker behind me. When Hannah wasn't using it, some of the kids came over to check it out. One little girl was really into pushing the walker around and her mom kept whispering to her that it was Hannah's and that she needed to leave it alone. I told her mom that it was okay and I explained that I think it's important to normalize adaptive equipment by letting other kids explore it.

As I was talking, this mom kept her eyes averted and sort of mumbles, "As long as you're okay with it." I repeated myself, in an effort to get her to look at me, saying something like "Yeah, I just think it's good to let Hannah see other kids with her walker and for other kids to learn what it's all about." But still she wouldn't meet my eyes.

This is a mom that I've chatted with lots of times, who is always warm and friendly to the girls and I. She knows us all by name and makes a point to greet us when we see her at class or in town. It surprised me that she was so uncomfortable; I wouldn't have expected that from her but then again I really don't know her that well.

It wasn't that she was cruel or purposely offensive in any way. The whole thing really wasn't even that big of a deal in the grand scheme of things. But it still hurt that she couldn't look me in the eye while I tried to share with her how we are working through all of this. Her discomfort was another reminder that while to us, Hannah is Hannah (and oh, yeah, she can't move so well), out in the community she is a kid with an obvious disability. And not everyone knows how to handle that.

I realized that when I go out with Hannah I have to don my "thick skin" armor. I try to smile and act oh-so-cool about the fact that I'm carting around a walker for my daughter with CP. I hope that this attitude will make other people relax and then I won't have to deal with discomfort or, worse, cruelty.

But I can't control every situation and everyone else's reactions. I also can't control my own all of the time. Some days it's hard to be cool and some days I'll meet people who aren't that cool either. Even though I'm getting more and more used to and comfortable with Hannah's special needs, some days are still hard.

Monday, March 10, 2008

Yoga Therapy

I had a great conversation yesterday with a woman who is trained in "Yoga for the Special Needs Child." Our OT gave us the brochure about a month ago and I finally got around to calling her. She practices at a studio where she teaches both group classes and then works individually with kids with special needs. Her own daughter has CP and is 8; she's been doing yoga with her since she was 11 months old and feels it is one of the main reasons why her daughter has been able to avoid having botox injections to reduce spasticity.

The way it works is that we would have an initial evaluation/get-to-know-you meeting which is free, and then we'd have weekly sessions of about 45 minutes. These cost $45. She would allow Isabelle to be present and participate for no extra charge which is great.

I was very impressed with how structured her work is (she devises weekly treatment plans and regularly reviews goals and sets new ones), I like that she has been formally trained both as a yoga instructor as well as an instructor for therapeutic yoga for kids with special needs, and I think it's a bonus that she herself has a daughter with CP (not a bonus for her, but for me in that she has very personal experience with the work she does).

For all of these reasons, I think we're going to take the plunge and sign the girls up to start taking yoga starting at the end of the month. I'm really excited, as I have been looking for something movement-oriented for both of them and I myself am ready to start practicing yoga again, so this will be a good motivator!

I'm really eager to see how it works out and will be sure to let you know.

Sunday, March 9, 2008

Joining us at the table

It was definitely getting to be time for the girls to join us at the table when we eat, and the booster seats we were using, while they supported Hannah pretty well, were not great at putting her in the correct 90/90 seating position we want to encourage. So we ordered her a Special Tomato chair (I am so not a fan of that name!) and got the same one for Isabelle, minus the seat and back cushions for added support.

Although Hannah has to work a little bit while she's sitting in it, she really sits up straight and tall and that's so good for her. And the other great thing about these chairs (which are very similar to the Stokke chairs) is that they are fully adjustable so as your child grows, the chair grows with them so they can be used for a really long time.

Both girls love their chairs and the new placements we got them and the whole idea of sitting right with us at the table. We're also using bowls/plates/silverware all the time now instead of some times just putting food right on the booster seat tray. Seeing them sitting there with their bowls and silverware, we can't believe what big girls they've become!

Just a side note: the girls are wearing their hats inside because Hannah insisted on it, and since she has this nasty stomach bug (second one this winter!) I decided I couldn't say no. It was just about the only thing that made her smile all day. And then of course Isabelle had to wear hers, too. So here they are, hats and new chairs and all.

Thursday, March 6, 2008

Patience

There is really no way to survive raising small children without developing a reserve of patience. In my natural habitat, I'm the kind of person who isn't great at lounging around or sitting still. I talk and move fast, and that's not just because I love coffee. I might have some admirable qualities but great reserves of patience is not one of them.

When we first brought the girls home the bulk of my time was spent nursing them on the couch or in the rocking chair, living in this time-melding zone where morning ran into day ran into night ran into the deep dark middle of the night ran into very early morning and so on...
Having the patience to sit for long stretches of time was an acquired skill, but lounging around was my only real option.

Now that the girls are toddlers, I don't sit at all, but I definitely don't move quickly from point A to point B either. Instead, I'm on toddler time: slow, then very fast, then slow again, zigzagging all over the place and stopping abruptly to look at a crack in the floor. My back will be breaking from holding Hannah on one hip while bending down to grab Isabelle's hand and help her climb the stairs as she pauses every other second to pick up a piece of lint, say hi to the dog, or look up to ask me a question. I'll be fantasizing about the shower I want to take after I finally get them down for a nap. And then Isabelle will drop her stuffed puppy on the bottom stair and we (Hannah, Isabelle and I) all have to go all the way back down the stairs to get it. And I will just sigh and be patient.

Most days, I move through time without thinking too much about how I have altered my inborn "impatience" DNA . I just do it. There's really no other way. But yesterday, I was struggling to get the girls ready for music class. Isabelle insisted on putting on her boots but whined when she couldn't get them on the right way. Hannah pulled off her hat every time I put it on her head. The dog was circling around and getting in the way because she thought she might be going for a walk. I pulled Isabelle onto my lap to help her, and at that same time she decided to throw the ball she had in her hands. Instead of throwing it out in front of her, she threw it up. Into my face. And it really hurt.

At that moment, I realized how tenuous a hold on patience I really have.

Monday, March 3, 2008

Wall standing and lateral moves

Hannah is big into standing up against a wall lately and usually demands that Isabelle stands there with her. Then she laughs hysterically. This is one example of the ways in which she seems to intuitively know what she needs to do to get stronger, as this is actually an exercise that is sometimes recommended for kids with CP to help them develop balance and coordination before they stand independently, without support. Bonus that she wants to do it herself, and that Isabelle is all to happy to oblige!



The other great thing that Hannah has started to do is move out from behind the walker to something that she's interested in exploring or checking out. This forces her to step laterally, which is really hard for her to do. It also means that she's comfortable and secure enough to use the walker to get where she wants to go, but then leave it behind to move in closer to something if she wants. Our hope is that this will keep reinforcing the huge value and reward she gets for using the walker to be independent.


I'm excited to see where this all goes once her new walker arrives and she gets her orthotics. Hopefully that will all happen in the next few weeks. Then we'll really be ready for the melting snow and warmer, playground weather!