School, Summer, and Operation possibilities

School

So, right now Elena is having her Standard of Learning tests in school. For anyone not familiar with these test, this is a nationwide standardized test administered in public schools for grades 3 and up. the testing is controversial; the scores do not enter into the (elementary) student's record (they do in higher grades), but rather are used to assess how well the teachers/school are conveying material to students. In other words, it is a measure of the school, not the student. I have taken  few of these; the questions can be quite difficult, and some require more than one degree of inference. The tests are not mandatory, per se; parents can opt out their children--but what they may not know is when they do, the score for that student becomes a zero and lowers the school performance record.

These tests bring out the worst of anxieties in students, and Elena is a perfect example. I wrote about this during her third grade year; she was awash in nervousness and extremely disruptive. Tackling anxiety, quite simply, is going to be a problem for us (with Elena). While I don't look forward to testing, I do think it can be a way to measure if Elena is making progress dealing with her emotions.

Which…is debatable this year. Last night was the eve of her first (out of four) days of testing. She has accommodations in her IEP for extra testing time, but since the test is divided into two days (thursday and Friday) she cannot go over the weekend (or start early) if she needs even more extra time. Granted, she has the entire school day if she needs it (most kids are done in 3-4 hours, with breaks). She is, without a doubt, very articulate in her fears (once she calms down enough to discuss them) but she can be incredibly disruptive when given a lot of attention (our normal reaction is to disengage and let her calm down on her own--she doesn't like that b/c she feels we are ignoring her). After a huge meltdown the eve and morning of the test, I had low expectations for the day.

But, Elena surprised me. I received only positive feedback from her teachers regarding her test-taking. I'll call that a win.


Summer

I am trying to get plans in order for the summer. Currently I have spots reserved for both elena and Vivian and Camp Holiday Trails, but I haven't finished all the paperwork yet. I also applied for funding for Elena though the IFSP program (more on that later) an dI'm trying to wait to pay for certain summer things until I hear back regarding the funding. Dealing with heat, mobility, and size (vs. peers) are going to be issues for Elena this year I think. Heck, the heat is an issue for me right now--and I LOVE hot weather. I haven't been able to acclimate to the warm weather b/c I still have a difficult time navigating outdoor terrain. I'll get there.

In case anyone cares, here is a current picture of my "winky face" knee (almost 7 weeks post-op).

My left, your right. Still swollen and hates to bend.

New Op?

I'm currently researching epiphyseodesis (bilateral anterior distal femoral tethering) for Elena. Her main ortho recommends it, and E is scheduled for this at the end of September. In layman's terms, this is referred to as growth plate tethering. Basically they put some sort of splint/staple on either side of the distal femur (maybe proximal tibia?), kneecap side. This will temporarily halt Elena's bones from growing in the "front" of her legs (like mine, shown in the picture above), while allowing the back of her legs to continue to grow--essentially "growing out" of her crouch.

It's outpatient, quick recovery (comes home in some bandages only), slow changes, and temporary. The tethers come out in about a year or so and then she would continue growing as normal.

It seems like a perfect solution for a growing kids with CP. I'm sure it's not perfect, but it sure sounds good. I'll be digging up more information and posting what I find out.


SaHM experiment

My first attempt at making crutch covers! I'm not great with a sewing machine, but I am trying. These are a little snug--I'll probably perfect it with the next few attempts. Better than the hard plastic, and much cheaper than buying them (with no color choice).

Moi as hand model

Pink canvas and orange soft interior

First Day of Kindergarten

So, how did we do?

We didn't make a big deal out of starting Kindergarten. She's been in public pre-K for 2 years already; AND, most importantly, I didn't want to trigger some inevitable anxiety meltdown about it being too early, or not liking the bus driver, or being shy, or new teacher, or [insert MD excuse here]. So the Night Before Kindergarten was just like any other night. No real issues.

Kindergarten Morning started off with crying in bed after being woken up. E said she was scared...of the bus driver, of being away from home, blah blah blah. I got out of that one by a little cuddling and then asking her if she wanted a white or purple and pink shirt to wear (purple and pink). Breakfast was a bowl full of tears (and some cheerios). I interrupted her weep session by asking her to smile--and I (sort-of) got one!



Then the morning started turning around. We talked about seeing friends again, wearing her new princess backpack. Wearing matching earrings for her outfit. I took E to wait outside for the bus, and look at this cutie!



We had a lot of gear to load on the bus: school supplies, packpack, lunch, crutches, sneakers (for the ride home). That's okay. I introduced myself to the new bus driver (the fact that it wasn't last year's driver was Meltdown-Inducible) and he was friendly. Elena was greeted with chimes of her name when she got on the bus; we have some friends on the same route and they were happy to see her--and I emphatically waved to them, and I swear their smiles were going to burst off their faces. I exited the bus, and kept waving until they drove out of view.

And then wondered about her all day...was she tired? Did she fall? Did she need help in the bathroom? Did anyone tease her? Did she make any new friends? How was navigating the playground? Could she manage the cafeteria?

The school PT called me after noon and told me E was doing GREAT. That was a relief.

I got home from work at about 530p. Everyone was sitting down to dinner. Without prompting, Elena says:

"I CANNOT WAIT TO GO BACK TO KINDERGARTEN!"

*fist pump* yessssssssssss!

Separation Anxiety (?) or Here We Go Again

E had Kindergarten Camp this week.

It's basically a 3-day, 2 hour/day stint to introduce rising kindergartners to their teacher, school, classroom, and potential classmates. Normally it's for kids that are new to the experience. Elena has been in public pre-K for the last two years. Last year, she was in this same school, across the hall from her new classroom. She even knew the teacher, and some of her classmates.

The first morning, it was A NIGHTMARE. It started the night before...

"Mommy, I'm going to miss you!!" and then crying/screaming/MELTDOWN ensues.

We've been through this before...each year when pre-K started, some unexplained times during the school year...for a while there, we had this at bedtime. *sigh* It doesn't get easier. I am so confused...WHY NOT?!

She even did it WORSE the second morning--that was after she admitted she had a great time the previous day at camp.

Now...you can tell me that she's nervous, or acting normal, or just isn't sure what to expect. I believe that...some if it, anyway. But E is a smart girl. SHE KNOWS. Part of her behavior is a power play. I'm not kidding.

Another part, a potentially large part, is related to her growing awareness (and vocalization regarding) being different around her able-bodied peers. And her able-bodied sister, who can now physically do everything she wants to (run, jump, snatch toys, carry large objects, climb up stairs, stand in the bathtub, etc.). This is bound to embody itself into some sort of (negative) behavior.

So I called a psychologist. Eight of them, actually, b/c I wasn't sure if anyone would get back to me (especially since no human being would answer a telephone!! ARGH!!) and I would like some advice/coping mechanism ideally before school starts at the end of August.

I think Elena is essentially a pretty normal kid in a disabled body. And that's okay. But I have a hard time believing her physical condition has zero to do with this kind of behavior. And if we end up seeing a psychologist, and they label her with some disorder--I will probably lose it. Mostly b/c I don't believe it, but also because I do NOT want another label on my kid. I mean...it's hard enough as it is. Typically, I wouldn't say that. But these past few days have been pretty tough. And honestly, today (the third and last day) it was MUCH easier. But it'll happen again...and again, probably.

Nighttime Admission Results

I mentioned our issues with E's sleeping a few posts back. Thank you all for your comments--and, as I'm finding out on the newsgroups I belong to, there are LOTS of parents of CP kids that have issues with sleeping or nighttime in general.

Here was what happened during my last post: E was really acting up at night. I had/have no idea why. My opinion is we are/were reinforcing some bad behavior, but didn't/don't know what it was/is. Right before this trial, she got a bout of strep throat (that might explain SOME of the nighttime screaming/tantrums, but not weeks of it!). She was coddled, cuddled, and loved and cared for for about 5 days. Then we tried a week of giving her Benadryl.

We gave her one children's dissolvable tablet at 7pm. We continued with our normal nighttime regimen--bath, stretches, books, bed. She always fell asleep during book time. One night she slept through the night without interruption. 1 night she woke up once, I pressed the blanket to her, and that was all she needed. 4 nights she woke up and needed to be soothed--but it was relatively quick. Another night she had a tantrum (it was near the end of the Benadryl week). Jason was convinced that it was a magic pill. I wasn't--I thought maybe the prior week of coddling made going to bed/sleeping an easier task.

The next week we did sans Benadryl. It was much like the medicated week, only she did wake up every night but we just read her a story and she went back to sleep (or she went potty and then we read a story and she went back to sleep).

So...she goes to bed well, and overall has been doing well when she wakes up, but (she thinks she) needs parental intervention to go back to sleep (she definitely needs help if she has to use the bathroom). We've had one or two tantrums in the past 3 weeks (give or take). Overall I'd say that's pretty good. I am still interested in getting/making a weighted blanket...but right now I'm counting my blessings.

A Nighttime Admission

I wrote an entry a long time ago about kids and their sleeping issues. I have pretty much chalked up E's waking up and crying/screaming issues to bad parenting...we must be reinforcing some bad behavior, but we don't know what it is, and we haven't figured out how to stop it. In short...E rarely has a "good night". By rarely I mean...once every two weeks? Maybe?

We try to "switch it up" when we can, and that's only after some big change of events. Like, if we have to spend the night in a strange place, then when we come home, instead of going into E's room if she screams, we'll approach her door and say "we will come in when you speak to us in a nice voice". Recently, E was sick for a whole week with strep throat. So, screaming only made her condition more painful, which made it even more to cry about. So we held her on the couch. We cuddled with her when we could. I mean, E was miserable, she was sick, she was throwing up, she was feverish...she needed to be coddled and loved, so a parent was with her or on a neighboring couch all night. We started gradually weaning her to her bed, as she got better. And so here we are. Again. Same issues.

What issues? I HAVE NO IDEA. She goes to sleep fine. She just wakes up every night. Sometimes she's not fully awake and crying loudly...I come in and whisper "Elena, what is happening?", you know, in case she says she's being eaten by a dinosaur or something. Last night I got a "I can't stop". (this is a big deal, normally I don't get any words) "You just can't stop what?" "I just can't stop being bad" [SCREAM]! Here we go again.

So...here is my confession. I've been harboring some harsh judgement for some parents who "medicate their kids" to make their lives easier at night. Like, they don't even give their kids a chance to behave before they've already shoved a pill in their mouth. I'm pretty opinionated about that. And to be frank, I know some parents who now medicate their kids, who felt just like I do about it. Well, when E was sick, she had some codeine-laced concoction for pain and to help her sleep. I remember from SDR, she doesn't do well with codeine, it seems to make her nauseous. It did make her sick, but only a little, and after that she slept pretty well. I didn't want to do that again, but I considered using Benedryl, which is what some of the "medicating parents" give their children. I insisted it wasn't for my convenience, but for E's, who has had 5 very sick nights and needed rest to get better.

The night was just about perfect. I admit it. She got up once, I pressed the blanket to her, and she went back to sleep.

The next night I thought maybe the memory of a good night's sleep (she acknowledged she felt great the next morning) and a fun tiring day would be enough for another good night. WRONG. And so here I am writing this post.

So here I am. I feel like a failure when it comes to nighttime parenting with E. Jason and I share this frustration. We tend to tow the "hard line", meaning we show E we are not going to put up with screaming behavior and remove her from her comforts. We don't spank, we don't yell, but we use silence as a reinforcer and explain things in nice voices when she is ready to listen--which she does, and she does acknowledge she has been behaving badly. I think she gets the idea of punishment (in this case, she doesn't get to return to her nice warm bed after a meltdown), but she sees it coming and then gets upset b/c she knows what will happen. She understands choices, and knows the choices are hers. And yet this happens just about every night.

What I am learning is this is a huge stress for my husband and I. That one night when Elena isn't a nighttime problem, was as if the Heavens opened up and music started playing from the parting clouds ("aaaah!"), SERIOUSLY. If we could fix this, our relationship would improve so much. So here I am.

I'm going to try one week of Benedryl. I'll write a post about it and my thoughts once it's over. I feel defeated...but maybe one week is all I need? To get E in a good pattern? It is worth it to me.