Our New Nightmare

Okay, nightmare might be a little extreme...but that's kind of what I am anticipating.

Elena had a checkup with her orthotist today.  She's still tight from decreased movement from being sick; but there is no denying that her legs are very tight--her hamstrings and gastrocs especially.  This is not a big surprise...she has grown quite a bit, and her spasticity has increased (marginally, I think, but compounded with growth it is easily noticeable).

Surgery isn't really a consideration right now.  Her contractures are small enough not to warrant intervention.  But, if we want to try to help Elena move better, she needs prolonged stretching.

She is doing well in school, and is an active child.  The only logical time for a prolonged stretch is at night, while she sleeps.

The good news is we can have night splints made for this.  We had some options to start this a few years ago, but Elena's nighttime difficulties and terrible "sleeping" habits made this near impossible.  Thanks to our wonderful family psychologist, E now goes to sleep very well, and I was (am) hesitant to interfere with our new bedtime routine.

So, I'm stuck between a rock and a hard place.  No one wants to make E sleep with cages on her legs.  I feel like she thinks it's some kind of punishment...and we're only trying to help.  And I cannot imagine that stretching for 8 hours nightly won't make a difference.

Elena was present while we all talked about options.  She was upset--I was too.  She also understands on some level, that her tightness is a problem, and there is a non-surgical option that we want her to try. It's unfair for someone so young to have to process this, no doubt.  It's also never going to change--unless, maybe, prolonged stretching makes a difference.  I think it is worth a try.

I want Elena to weigh in as much as possible in the sleep stretching plan.  My idea is to slowly transition (hours per night, type of brace) from zero to (hopefully) 8+ hours of wearing her splints nightly, for a test period of 3-4 months.  I want to take pictures every morning and see if, and when, any changes are observed.  And then share them here.

If you've already tried this, I'd love any information you have to share.

Psych Graduation

The Handy Family has Left the (Psych) building!

We graduated! We've been seeing a (student) psychologist since about August 2010, specifically about Elena's nighttime issues (which aren't a problem now, by the way). We have come a long, long way.

Here's the recap.

Sometime between Elena starting to talk (2.5 years) and 4 years of age, she started freaking out at bedtime. I don't know what caused it--but it didn't take long before it was hours of straight-up screaming before bedtime, and an average of 2 hours screaming during the night. IT. WAS. AWFUL. Jason and I fought about what was going on--he thought it was due to brain damage, and may need medication; he wanted a sleep specialist. I thought it was a parenting problem--but we didn't know what we were doing wrong, and didn't know how to fix it. E's pediatrician (and other main docs) agreed with me. I didn't want to medicate Elena. After one last very very bad night, where just about all of us were crying, losing our minds, I called professionals the next day. Eight of them, hoping just one would call me back.

Two did. I chose the UVA school of education, where we'd be seeing a student psychologist and be observed by an invisible team via camera. I chose them for two reasons--one, they were cheap; two, they were close to work. We saw them weekly, or once every two weeks. Sometimes it was all of us; sometimes it was just a parent+Elena, and then sometimes just me.

We saw results, literally, after one month. I couldn't believe it. We had spent close to two years dreading every nightfall.

What took me so long? I mean, I accept--and seek--a LOT of help raising my kids. I guess a lot of that help revolved around things I wasn't trained for--like physical therapy, modern medicine, sign language, nursing, orthoses, assistive devices, etc. But for some reason, getting help with "the basics of parenting"--putting your child to bed--took forever. I felt like I was admitting I was a failure.

Well, in case my experience can help any of you, here's what I've learned. Keep in mind that during this nighttime troublefest/rehabilitation, Elena had 2 rounds of Botox, three surgeries (eyes, SDR, and PERCS), countless hours of therapy, public school, and birth of a sibling. In no particular order, here is what helped us:

1. If you have a family problem, try to make a family solution. Have a Family Meeting, where you all address the problem, and everyone has input to create a Family Plan. You stick to the plan, and refer to it often.

2. Elena's a smart girl; I need to ask her opinion on family matters.

3. Elena is a big sister and I should treat her like one. I was trying to include her in family activities, but in doing so, I wasn't making special "Elena time". We have "Big Girl Time" after Vivian goes to bed; it makes E feel special, and differentiates the two kids.

4. Having a third party (psychologist) really took the pressure off us parents. It made us all listen to someone else; if E had a problem with the plan, it was with the plan or the psychologist, NOT ME.

5. We used the Ferber Method. We tried this before, and failed miserably. Here's what we did--starting this regimen during the middle of the night wake-ups (this was all part of our family plan):
--if E wakes up, we walk in and ask what's going on. If she's not sick/needing to use the bathroom/(insert good reason for being up here), we tell her our comfort phrase "I love you. I know you can do this, I know you can go back to sleep." LEAVE. Don't tell them you'll be back.
--wait 3 minutes. If she's crying, repeat.
--wait 5 minutes. If she's crying, repeat.
--wait 10 minutes. If she's crying, repeat.
--repeat every 10 minutes until she's asleep.

Some nights, E would crawl out of bed repeatedly (she can't get back in). I'd calmly carry her back to bed, and say the phrase, and keep going.

Literally, this never took more than 40 minutes. After dealing with screaming/tantrums literally for hours EVERY NIGHT for two years, 40 minutes was NOTHING. It didn't take long until the night wakings stopped; then we tackled the actual going to bed part in the same way.

Today, I put her in bed, tuck her in, say goodnight and leave. I get ready for bed myself, and by the time I come back to read her a book, she's asleep.

I am really proud of us. Elena is proud of herself, and of me. Karen and UVA Curry School--I can't thank you enough.

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.