Wednesday, August 26, 2009

The lingering trauma of the NICU

Today's NY Times has this article about the post-traumatic stress many parents face after having a child in the NICU. A good and validating piece.

Tuesday, August 25, 2009

Waiting for the babe

I'm now 38.5 weeks pregnant and still amazed that I made it this far, over 11 weeks farther than I did with the girls. I'm starting to wonder if I'll EVER go into labor, actually, which is a pretty crazy feeling. I feel like I'm in pregnancy purgatory. I'm very ready and excited to meet this new little one, although I'm definitely anxious about it as well. I'm wondering how I'll manage the girls and a newborn, especially with Hannah's various therapies and appointments to deal with. But maybe it will be a little bit easier when I have my body back. For the past few months or so, I feel like I've been a sub-par mom because I haven't had the energy to keep up with the girls the way I usually do. B has taken over the bulk of the stretching with Hannah but all of the little things I used to do during the day to ensure she was getting enough of her exercises in have fallen to the wayside. At least it's summer, so she's getting outside a ton and is building up some amazing endurance with her walker. And the day-to-day way that we do things around here also help ensure good posture and positioning. But the big stretching/exercise chart I made is a painful reminder of how much more there is to do, and how little I've been able to accomplish.

I realize too that while I'll have more physical capabilities once the baby is here, I'll also be exhausted and probably overwhelmed in different ways. Ah, it's going to be crazy around here for awhile! I guess I'll just have to cut myself some slack, do the best I can do and realize that it won't be this crazy forever. I just don't want Hannah to backslide or regress in the process, because she's really come so far in the past year.

Sunday, August 9, 2009

Crawling on all fours

Hannah is doing it, finally! It's so much work for her and you can see in this clip that some of it is "W sit scooting" as opposed to true four legged crawling, but she definitely gets herself up there and around and it's wonderful! You can hear her saying to herself, "One hand, two hands. One hand, two hands" as she reminds herself to get up on her arms AND her legs. Go, Hannah, go!

At the fair

Agricultural fairs/field days are big around here. B took the girls to one yesterday while I lounged around at home. I would have loved to be with them, but the idea of walking around in the hot sun for hours didn't appeal to my late pregnancy self. He got some great pics though. You can see how Isabelle is the total animal whisperer in these pics. She absolutely LOVES animals of all kinds and has a real knack with them, too. Hannah prefers to just check them out from a distance. Both girls had a great time and were hot, dusty and a bit "farmy-smelling" when they got home. It's summer in the country!

Wednesday, August 5, 2009

accessibility recap

We had our meeting Monday at the elementary school with the vice principal and the director of special ed. We had some immediate concerns to be addressed by the start of the school year:
  • easy parking and access to the building
  • accessibility to the playground and a bucket swing
It seems like our immediate concerns will definitely be met, which is great news. Plans are already in place to install a pathway of mats to the playground structure so Hannah can wheel her walker up to it, a bucket swing has been purchased, and they're going to order a sand table that she can stand at as opposed to sitting in the sandbox which is more difficult. All good stuff. We also figured out a drop-off time in the morning that should give me unimpeded access to the handicapped parking spot in front of the building and a key for the elevator so we don't have to count on someone being there to unlock and operate it for us. Also good.

But...(you knew there would be one, right?)

While these solutions will help in the short term, we are also interested in seeing more long range goals being met as well as the fostering of an "accessibility mindset" in any future projects the school undertakes. Changes that will benefit not just Hannah but other kids that come through the school in the future, or parents/grandparents/teachers, etc. that might also have mobility challenges. And although the two administrators nodded and murmured lots of affirmations that indicated they got that, several of the things they said told us otherwise.

For instance, the vice principal asked how long Hannah would be using a walker and if she would some day be using crutches or be walking independently. Read: "She won't need this kind of help long term, right?" B was quick to say that while we hope she will be able to transition to crutches at some point, we don't know anything for sure and also, this is not just about Hannah. These changes need to be made permanent, for everyone's benefit, not just hers.

Then the special ed director, when talking about the mats that were going to be put down around the playground, said, "What's great about these mats is that when Hannah moves to the bigger playground, the mats can move with her." Um, yeah. But again, what about a more permanent solution that can remain in place for all kids.

It also became clear that, either through cluelessness or gross negligence, the school does not have any kind of significant accessibility plan in place or way to address these issues. The playground was recently upgraded, in the past few years or so, and the special ed director admitted, "I'm not really sure why any of these accessibility issues were not taken into consideration when this was done." Good question, especially seeing as it's THE LAW.

Having not had any kind of experience with these types of issues and how they are typically handled in a school, I can't say whether or not this is an anomoly or if most schools try to just skate by on some of this until someone (usually an already overwhelmed parent) starts to raise concerns. But I can say that I'm really disappointed. I'm the kind of person who believes people want to do the right thing and tries to give people the benefit of the doubt. But it's clear to me that the folks we met with, while eager to address our immediate concerns, are not quite as able to see the bigger picture here, the fact that our community is not well-served when it is not accessible, and that this is about so much more than Hannah's specific and somewhat simple needs.

So we're trying to figure out where to go from here. Right now, we'll see how they do with following up on the items they said they were going to address before school starts. We also discussed getting together again about 6 weeks into the school year, to see how things are going. At that point, if we can shake ourselves out of the newborn phase we'll no doubt be immersed in with #3, we will try to start moving the ball in the direction of a more permanent, long range accessibility plan.

I feel overwhelmed by the thought of taking this on but can't imagine just accepting what is offered to Hannah and leaving it at that. Our community, our kids deserve so much more.

Sunday, August 2, 2009

Summer fun

The girls and I had so much fun last week hanging with some Mommy friends and their little boys. We've known them since the girls and the first born of the boys were just a few months old, and it's such a comfortable and comforting relationship. I'm especially grateful for it because I think it's a really nice thing for them to have known Hannah since they were all so small, and know her as Hannah and not "the girl with CP." Her walker, her orthotics, her inability to do some of the things they do...I don't think the other kids even realize it, they just know she's Hannah of "Hannah and Isabelle." And that's a wonderful thing.