School DAZE

We just finished week two of the girls' summer preschool program and I'm still having a hard time with it. My heart squeezes tight each time I drop them off and I'm always eager to pick them back up again 2.5 hours later. It's definitely compounded by pregnancy hormones (almost 32 weeks now!) and being physically uncomfortable as it takes a lot work to get Hannah into and out of the building. And then added on top of that is the magnitude of this new phase we're entering with Hannah being out and about in the world.

From the first time that I managed to get both girls out by myself when they were infants, to the first time I took Hannah somewhere with her walker, each moment was a transition as I had to figure out how to navigate a world bigger than our house, where things are easy for Hannah to access, where no one stares or makes comments, where we feel comfortable. In our house, Hannah gets around like a champ, practically running around in her walker, pulling up everywhere, singing and talking and yelling and being a "typical" preschooler. When we go out, she is often quiet and tentative and slow. She gets distracted easily by sights and sounds around her and tires out quickly. When we're at home it's easy to think that Hannah is only midly impaired by her CP. But when we're out, I realize the true extent of her limits. She has come so far in her development, but there is still so much she can't do.

So now she's in school, and while the special ed teacher has been a great advocate for Hannah and is truly motivated to make it a comfortable and accessible place for her, there are things that are just not working as they should. Getting into and out of the building is a major struggle. Once in the classroom, it's becoming clear that Hannah needs more one-on-one assistance than the teacher originally thought, so that she is not left behind and is able to get where she wants to go. Hannah is also not eating her snack each day because she's so distracted by everything going on around her, so she is totally pooped by the time they go to the playground, or else she sits inside with the teacher trying to finish a snack and then by the time they get out to the playground, it's time for me to pick the girls up. (Not to mention that the walk from the classroom to the playground is very long and that alone takes a great deal of her effort).

I'm trying to set up a meeting with the teacher after this summer session is done, so we can regroup and talk about what can be done differently this Fall, when preschool officially begins. I also need to set up a meeting with the principal to talk about the problems we're having with access to the building, the inaccessibility of the playground, the modifications that should be done in the bathroom, etc. etc. etc.

All of this is adding a layer to the already emotional aspects of sending your kids off to school for the first time and it's been hard. I want to go into these meetings clear-headed and not defensive, but I feel emotionally charged and overwhelmed by all that I think needs to be done. Sigh...

Reading lessons

Isabelle is a real animal lover. Hannah, she's interested in them from afar but Isabelle wants to get right up close and love all animals to pieces. So Maggie, our very old mutt, is often the object of her affections which sadly for Isabelle, are not usually returned. Maggie sort of tolerates the girls and if they get too much in her space she'll show them some teeth and give them a growl. But most of the time they just co-exist. Isabelle is not to be deterred, however. Here she is reading a book about dogs to Maggie. Can't you tell how much Maggie loves it?!

School days

This week, Hannah and Isabelle started school. I know, it's summer and most kids are just starting summer vacation. But the early education program that sponsors the preschool they're going to in the Fall has a summer "mini preschool" so we signed the girls up so that come Fall, they are a little more adjusted to the idea of going. It's only two days a week, 2.5 hours a day, for 4 weeks so it's not that intense but it's their first time doing something like this so it's been pretty exciting around here! It's a program that targets kids who have identified special needs or are at-risk in some way, the "at-risk" part being pretty loose. Isabelle qualifies under that definition as well, just because she was born so premature even though she has no identified needs. So there are 12 kids in the class and some have some pretty obvious needs (although none are physical like Hannah's) where others seem like they are developing typically. We thought long and hard about where to send the girls and this seemed like the right place for ensuring Hannah would get what she needs but that both girls would also be stimulated, challenged and have a good experience.

So anyway...we've been talking about school for awhile, they got new backpacks, and we even visited the classroom last week with Hannah's PT to check out the space and also give the girls a chance to see what it was like before going "for real." Hannah seemed excited by the idea but every time I mentioned it to Isabelle, she said she didn't want to go and wanted to stay home with me. We talked a lot about what she could do if she got sad or scared, and that it's okay to feel sad or scared to start new things but that we were pretty confident she would really like it. Blah blah parent psychobabble blah blah...on and on we went and she was SO not convinced. Although she did really enjoy herself when we went there last week (and so did Hannah).

So Tuesday morning the big day came and both girls were pretty excited about it as we got ready, I packed their backpacks, and we headed out. You can see all the smiles in the pictures before we left: looks like two happy kids, right? Once we got to the classroom it was bedlam: there was one boy who was hysterical after his mom left, lots of other kids and parents milling around trying to get settled, and generally chaos was reigning. The big spacious classroom felt really small all of a sudden. I helped the girls get their snacks into a cubby and wash their hands and then I told them I was going to leave.

Isabelle grabbed hold of me and started crying pretty hard, which made me well up with tears. I was trying VERY ADMIRABLY not to lose it in front of her (why didn't it occur to me before that moment that this would be an emotional thing for me as well?!) and finally managed to peel her off of me, hand her to a teacher, and race out the room. I barely said goodbye to Hannah.

I was hysterical the whole drive home and sat in my driveway for awhile, sobbing while I called B at work and told him, "They're not ready for school yet! It's too soon!" I then left an equally pathetic message on my parents' phone. Finally after composing myself, I decided I would give it ten minutes and then call to see if Isabelle was still crying. Thankfully, when I called the teacher I spoke with said that she stopped quickly, probably before I even left the building. So I guess she handled it a LOT better than me!

The time flew by while they were gone: I sort of stood around trying to figure out what to do with myself and then it was time to pick them up. They were on the playground when I got there so I got to observe them before they saw me, which was kind of cool but a little hard because Hannah was just kind of standing in her walker, watching everyone, and Isabelle was roaming around on her own.

I spoke with the teacher and it turned out that my girls took so long to eat their snack, as they were too busy chatting with themselves and the teachers, that they didn't get to the playground until it was almost time to leave. Then it took Hannah a long time to navigate the long hallway out to the door, and then make her way across the grass to the play structure. By the time she did all of that, I was there.

Both girls were totally exhausted and cranky when I got them home although neither of them napped well that day and they both fell asleep late that night. I think they must have been overtired/overstimulated. The next day was a little easier; Isabelle still cried but stopped before I even left the classroom, I didn't cry at all, and when I picked them up later that morning they were both on the playground and engaged in different activities. They also seemed in better spirits when we got home although they were still pretty pooped, and they both took mega-naps and slept well that night.

Phew! We made it through our first week of school and I think overall it's going to be a good experience for the girls as well as give me a much-needed break during the hardest part of my pregnancy. It's still really hard, though: I worry mostly about Hannah and how she's making her way around the classroom, if she's getting enough one-on-one assistance to get from point A to point B so that she can participate along with everyone else, if she is comfortable speaking up for what she needs, and how the classroom set up is working out for her. Her main teacher is a woman that has been coming to our house once a week for a year now and knows Hannah and us quite well; I think she's great and has spent a lot of time thinking about ways to make the classroom as user-friendly for Hannah as possible. But still; I'm not there to see it all and be on top of it like I am at home and giving up that control is definitely tough. Although it's a lot easier now than I think it would have been last year, since Hannah has gotten so mobile and independent. And I also think being pregnant has made me obsess a little less than I might, as my mind is in other places as well.

One thing we have realized is that there is quite a bit of work to do to make the school and playground facilities more accessible for Hannah and kids like her. Getting into the building is a real challenge, and the playground itself is not accessible at all. Our next goal is to get more versed on ADA rules/regulations and set up a meeting with the principal to talk about long-range plans/goals and see what can be done. The preschool the girls are going to is housed in a classroom in the elementary school so this is a place where they will be for many years, and I want it to be a welcoming place for all kids and parents with disabilities so we're looking for a big picture plan, not just a few small modifications here and there. I'm anxious about taking on this charge but hopeful that we can accomplish good things without much conflict, even in this time of super-tight budgets and purse strings.

It always adds an extra layer of thinking and planning when you have a child with special needs. You can't just show up at school and assume everything will meet your child's needs. Sigh...

But the good news is that as far as the girls are concerned, their first two days were great and they even asked today if they could go back again soon!

40 weeks

A full term pregnancy should be around 40 weeks. That's a long time. Really long. During that time you go through 3 full seasons and 9 full months. You're pregnant more of the year than you're not. Much more.

Having only made it to 27 weeks last time around, I didn't realize how long 40 weeks can really be. I am so incredibly grateful to be at 30 weeks now and in no way do I want this baby to come any earlier than full term, but I do also feel weary at the thought of being pregnant for another 10 weeks.

Maybe it's just me, but I don't seem to do the pregnancy thing very well. First time around, I figured it was carrying twins that made me so uncomfortable and cranky. This time, I realize it's just that me and being pregnant are a tough combination. The first 17 weeks were riddled with morning sickness, and by the start of the second trimester I was already big as a house so feeling every ache and pain that's supposed to wait until the third trimester to rear its ugly head. Now at 30 weeks I have this mystery pain across my abdomen which is making it next to impossible to be on my feet for any length of time.

I'm cranky about this. I'm okay (relatively speaking) with the hip and back aches, the trouble sleeping, the heartburn. I can push through it and deal with it. But this pain that I'm having now, that's forcing me to sit on my larger than usual backside for long stretches of time, really has me in a funk. It's summer and I want to be out and enjoying it with the girls, especially as this will be our last summer as a family of 4. I also have tons of things I'd like to do around the house to get ready for the baby. And in general, I just don't fare well having to sit around all day.

Today B took the girls strawberry picking and to a strawberry festival afterward. They came home with berry juice smeared across their faces and in their hair and with stories of their day. It made me sad. I missed them all day (you would have thought I would have enjoyed the peacefulness of the quiet house) and wished I was there with them, but there's no way I could have managed it. It stinks!

OK, I'll stop complaining now and just be grateful that as far as the baby goes, everything is going great. I just needed to be cranky today.

Treetop house

Has anyone read the kid's book The Gruffalo? The girls love it. They set up this fort under their easel and kept asking B and I to "join us in our treetop house," a quote directly from the book. Looks like an inviting spot, doesn't it?

Anniversaries and adaptations

Today I'm 27 weeks, 3 days, exactly how far along I was when Hannah and Isabelle were born. To celebrate, I made an unplanned visit to the OB because I'm feeling some pelvic pressure and have been kind of "off" all weekend. I was reassured to learn that things look fine for the most part; my cervix is starting to soften but not dilate or shorten so they're not concerned. I'll go back in next week for another check up but so far, all seems to be well.

The OB was funny. She said she thinks that whenever people have a history of preterm labor, they should automatically be scheduled to come in every week for the few weeks surrounding the gestational age of their last birth. I think this is a great idea! Every time I experience a twinge or ache or cramp, I immediately get anxious. I didn't think it would affect me this much, but it does. It's making it a little hard to enjoy this pregnancy, coupled with the fact that at just shy of 28 weeks, I'm definitely experiencing some of the discomforts of pregnancy: acid reflux, backaches, hard time sleeping, etc. Poor B has pretty much taken over care of the girls when he's around, and while I don't feel like I have the physical energy to be a big contributor around the house, my mind is still intact enough (for the most part!) to make me feel like a total sloth because of it.

And then there's the girls. They are both getting over a lingering cold that escalated into croup and wheezing, and Hannah is just a week out from her second round of botax. So they have both been super whiny, needy and contrary. I think some of it must also be a reaction to my dwindling involvement in their care, so already that lovely parental guilt is kicking in. I can only imagine how it will be when the babe finally does arrive. I guess at least when that happens, I'll have more energy to deal with it. Wait, no I won't. I will be sleep deprived. Right....

But on the positive side, Hannah is forcing our hand on the "how much do we adapt our house to her needs and limitations?" question. We've sort of been coasting along with this, doing some things to make it easier for her to get around but also helping her with other tasks that are challenging for her. Now in her newfound mobility and independence, Hannah is not as interested in all of that assistance. This is such a gift, but it has us hand-wringing as we look around at our 1900s two story home. So we're trying to figure out which are the most important adaptations to make and the ones that we can afford. Today Hannah's OT said something that helped me put it into perspective a little more. She said that even if Hannah can't do the entire potty routine on her own, for instance, if she can get on and off the potty herself, that might give her the sense of competence she's looking for, at least right now. And then we can keep readjusting as she grows and develops and gains more skills.

This all sounds good, I'm just not quite sure how we'll find the time or money to accomplish some of these things, especially as we're also trying to get ready for the baby. I did have a fun idea the other night before falling asleep, that maybe we could plan a "Team Hannah" day at our house and invite a bunch of folks over to help out with a few projects that would otherwise take B a long time to get to, but that with a few extra sets of hands, could be completed in half a day's work. Maybe we'll do that, or something like it. Either way, it's clear that our girl is ready to have more control of her environment, and for that I am so grateful.

Botax and hips

Today Hannah had her second round of botax injections, just about 4 months from the first one we did in February. She had 6 injections again in pretty much the same places, with a little more focus on her left calf as she has been doing a lot of intoeing with that left foot. B took her this time which was a mixed blessing. On the one hand, I really hated to send her off without being there with her. On the other hand, it was so hard last time to watch them give her the shots and see her have to deal with that pain so I was glad to be removed from that. B's report was that she did great, just like last time: cried hard while she was being injected, but then was totally fine. Thankfully the whole procedure takes less than 5 minutes.

The physiatrist told B that he reviewed the hip xrays Hannah had done a few weeks ago and said that her left hip is starting to slide out of the socket. This is probably a result of her tight hamstrings and he seemed to indicate that while it wasn't extreme, he wanted to keep an eye on it and hopefully could manage it with more focused botax in that area. I'm bummed because I feel like she's doing so phenomenally in her developmental gains and yet despite that, there are these structural issues that are still unavoidable. Kind of like her left foot dragging. These things don't seem to hold her back from making amazing progress but they are there and need to be dealt with.

Lately I have not been as vigilant about this stuff because she is doing so well, and because I'm starting to become more inwardly focused as I get ready for the baby. Then I feel guilty that I'm slacking off on Hannah's treatment and need to be more on top of what we're doing for her. Sometimes I just want to not worry about it and let her be a kid. And then I hear news like this today and think, "we weren't stretching enough, getting her out of the W-sit more often, working those hamstrings enough..."

Argh.