Tuesday, July 27, 2010

Taming Tantrums: Professional #1 says...

Earlier this week I met with someone about E and her (for lack of a better word) separation anxiety. The day before this meeting, E had screamed for FOUR HOURS--from 9 pm until after midnight. Yeah, rough night.

WELL. I know a lot of you out there have tantrum issues, or sleep issues...and while there are differences between our children, if we have any similarities PLEASE TRY THIS.

Here are the highlights:
Me: E keeps us from sleeping. I think she's mainly a normal kid with motor issues. She realizes these motor delays, and is becoming more aware of her differences. I think this has something, probably not everything, to do with her acting out.
B: E doesn't have much in her home life (with Mom and Dad there) that sets her apart from her baby sister. She needs Big Girl time/activities that make her feel special. She especially needs this as her sister eclipses her in motor function. She's a smart girl. Talk to her like one.
Me: I tried--during an episode, she just screams, there's no reasoning with her. The next day, if I bring it up, she's like "yeah, my bad."
B: This is a family issue. Make it a family discussion. Problem-solve as a family--E included, but not Vivian, b/c she's the baby.
Me: OH.

B suggested structuring the discussion like so:
When I get home, tell E after Viv goes to bed, we need to have a family discussion. Don't say anything else about it; let her "stew".
When the Family Discussion starts, begin with:
"We have a Family Problem."
"No one is getting a good night's sleep."
"This is because Elena is screaming too much".
"Let's work as a team to fix this."
Then open up the discussion, asking questions to everyone (especially E) related to why she screams, what she's thinking, what SHE thinks we should do to fix it (being reasonable, of course). Make guidelines ("E needs to stay in her room") and consequences for improper actions, letting E think of the consequences.

So we did, and put it on paper. I DID give her one child Benadryl chewable to try to tire her out, to try to ensure success (FULL DISCLOSURE). We read it over several times. Everyone agreed and signed their name.

We had Big Girl Time, including staying up 30 minutes later (B said that couldn't hurt--especially if she was crying for hours at her normal bedtime, anyway) to further accentuate the fact that she was older than Vivian. (THIS WAS A HUGE WIN--E's eyes just fired up when we mentioned Big Girl Time and Big Girl Activities that Vivian wasn't allowed to do.)

Everyone slept ALL NIGHT.

For the FIRST TIME in I have NO IDEA.

I feel like this is how most normal families must feel in the morning--reborn. I'm serious--it was a rainy muggy day, a bad hair day, a frumpy clothing day, a still-in-pain-from-wasp-sting/back crampy day, a rush-around I have work/E's PT/home life day--and I felt like I was all sunshine and rainbows, smiling like I just won the lottery on my sweltering mile walk to work.


Now, I don't have super-high hopes that all nights will be like this. And that's okay. But to know that it can happen, and that we can be successful, if we have the right strategy (and luck?)--priceless.

2nd night in a row, everyone sleeps.
3rd night in a row, everyone sleeps--E woke up a little grumpy once, but our AC just broke. She still didn't scream, so that's in the 'win' column.
4th: some screaming. E came out of her room--but that's b/c she needed help in the bathroom. Overall, didn't last long. It's not a win, but it's still a far cry from the meltdown. (is my good fortune waning? uh oh...)
5th: good night.
6th: good night.
7th: bad night.
8th: EXTREMELY bad night.
9th: Started off badly; after 7 minutes of crying and discussion, E asked for a "do-over". Rest of the night was good!
10th-14th: fantastic.
15th--no longer updating.

The Sprayground: The Beach Walker Strikes Again!

Last year, we went to one of our local spraygrounds (sprinkler + playground) for a birthday party. It was heartbreaking. All the kids were running around like crazy, having a fantastic time, and I'm unhappily wet, holding my girl's hands, trying to have her enjoy the fun while the other moms chat and eat cake. It was a rough day.

Well, one year and one Beach Walker later, how about THIS!!

Plowing through the sprinkler

Wet Face

E and mom in "mushroom fountain"

E runs through the sprinkler

Viv is soaked

E on the fountain before it erupts

E sprayground run

V sprayground

Without the Beach Walker, E would need one or two hands held at all times. She's so stimulated, and on her toes, that I'm sure she couldn't balance upright for more than two seconds. She wouldn't be safe with her wrist crutches either, for the same reason. I don't want her to wear her AFOs, b/c she can't stand in them without shoes, and we only have one pair of shoes. Before the Beach Walker, I hesitated to use her DME (walkers, loftstrands) in wet conditions b/c I was afraid they would rust (and most were loaners), and/or they would get slippery and dangerous when wet. And NOW--I can play with both kids at once! It's a miracle!

So far, my only complaint using the Beach Walker is that if she's going down a steep-ish hill, she can't stop herself--especially in bare feet. FYI--she also used it in the mulch playground, next to the spray area (picture not shown). She has not rolled it up curbs--I think a stronger, older child might be able to.

Thursday, July 22, 2010


E loves the pool. We'd spend more time at our local pool, but it's really difficult to coordinate getting home from work, cooking and serving dinner, eating, and then bathtime, stretches, and bedtime ritual without the swimming stuffed in there somewhere.

Well, today we did it! And it was fantastic, b/c we got to see a lot of our neighbors. What a great time!

I also brought a new thing to the pool tonight; Elena's swim vest. I confess, I'm not a big fan. I figure that it would be better for kids to learn to swim without one, as to have a healthy respect for the water and realize the danger and then conquer it without having a swim vest or arm floaties. And, more importantly, I tried a swim vest before on Elena--and was surprised, when wearing the vest, that she could not right herself in the water. I didn't want her to get a false sense of security while wearing the swim vest--and that goes for any adult working with her, too.

WELL. While I still feel residual anti-swim vest sentiments, I admit I am a changed woman.

ELENA SWAM BY HERSELF. While wearing the vest, of course. I was shocked!! We started out by just having her try to stay upright with me letting go: 4 seconds before her face was in the water and she was as stiff as a board. Later, after being at the pool for an hour, we worked on her doggie paddle. We do this every time in the pool--I remind her of her 'fish hands' (closed fingers) and to 'kick her legs', which she does reciprocally, as if she were crawling (we have not mastered a "straight-leg kick", from the hip). I pinched the back of the vest to keep her from tipping.

Then I let go--and she kept on going! Not fast, but as long as she moved her arms and legs, she didn't tip. The message started to sink in--that when she straightens her legs like immobile toothpicks (and her arms fold into her torso), she loses her balance and her ability to swim. Wow. Just WOW. Her muscle recruitment to balance herself in the water was really remarkable tonight--I need to get her in the pool more often!!

She made it 5 feet or so, swimming by herself, from the middle of the pool to the edge and then got her hands on the lip of the pool. Several times, too. Lots of times she tipped over, but we just started again--E laughing the whole time. Both of us were SO PROUD!

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.

Wednesday, July 14, 2010

Barefoot and Standing--Standing UP, that is!

We do "frog poses" every night as our last stretch before bedtime; the intention is that E feel her weight shift to her feet, and try to get her feet flat on the ground. She can probably get her feet as flat as mine in a Frog Pose.

Then we try to stand up. Ideally without her knees coming together. We've never been successful.

Until today.

Disclaimer: we tried this 17 times. But that was E's choice! This clip is #11--she was pretty determined. I plan on mashing up those videos and putting it on The Doodle.

In a perfect world, she'll keep her knees apart, and stay standing once she's up (instead of immediately moving). But tonight? THIS IS AWESOME SAUCE.

Great job, E!

Shout Out: Bounce n' Play Rocks

I was going to write this up before the previous Reality Check post. Well, here it is.

The Bounce n' Play in town is FANTASTIC! I went there with E, her little sister Vivian, and our fantastic nanny Annette. There are climbing structures, both permanent (structural) and inflatable; an art room, as well as a painting room (you can paint the walls!); a toddler room; a fish pond; and a pretty good cafe. All this makes for a great day, provided your child can maneuver around the area. Which, as long as it's not too crowded, Elena can.

After speaking with the staff--E had permission to wear her shoes. I decided to leave them off...sneakers just stick when she should be sliding. The structured climb/slide arrangement is too big for Elena--and not because she has CP. I went in there with her (tight squeeze, let me tell you) and I ended up helping a slew of kids get up and down. Both girls liked the big slides.

Bounce houses are still one of those lump-in-the-throat situations...lots of kids, standing up, giggling, while my kid is trying and failing miserably do to do the same, while hoping that she doesn't get kicked in the head or worse. I find it's better to be in a Bounce House Situation if it's not too crowded AND if it's with friends that we know well. Here it was neither. And you know what? It was still okay.

It helps that E can climb up structures in a Bounce House (with some assistance). I wasn't the only adult helping their kid around the big structures, which was comforting. And it's also nice to see our motto "everybody falls" in action, b/c all the kids fall when on the inflatables. When it was really crowded (we got there when it opened; after 90 minutes, lots of people were there) the kids were actually very nice, and very patient. What a nice surprise (and their parents weren't even there to tell them to be nice). We ended up leaving the bounce area after that time, b/c the kids were getting tired and the place was filling up. We fed the fish, and then Viv went to the toddler room and I took E to art. She even met a new friend while coloring!

The BnP is a great place to take E and Viv, provided we're there at opening time. The staff and the clientele were very accepting of our situation. That's not exactly rare in this town, but it's always reassuring to witness.

Tuesday, July 13, 2010

And so It begins...

We went to the Bounce n' Play today. More about that later.

It was the exchange after dinner that really got me.

Elena was talking to Jason about our time there--she tends to really give detailed descriptions these days--and she recounted the event where she was climbing the slide ladder, with 5 (older) kids behind her.

"I heard Mommy tell them I had Cerebral Palsy. I know that's why I'm so slow."

And she kept on talking about the rest of our stay while I cringed. I didn't think she had heard me.

*sigh* Look. It's not a secret in our house that E has CP. But we don't say it often, either--and we certainly don't use it as an excuse. It's just one of those things *that is*, and we don't really harp on it.

As I was putting her to bed though, I brought it up.

"Elena, you know when I said that you had CP?"

She looked at me. "Yes."

"Well, that's true. But you can do anything."

She buried her face in her pillow. "But those kids said I was so slow...they all wanted to go in front of me." (None of them went in front of her, though.)

"Did you hear what they said after that?"


"They said that you did a great job."

She looked at me like I was lying. "When did they say that?"

I got closer to her.

"When you made it to the top."

E smiled, a big huge smile, as if she were emerging from some deep fog. And she hugged her buddy tight, and went to bed happy.

What do I say next time? What do I do when the scenario doesn't end well? This isn't going away. If anyone has advice, I'd sure like to hear it. I have a feeling this next year is going to be full of situations like this one.

How do you steel a five-year old for the harsh reality of living with a disability in an able-bodied world?

Friday, July 9, 2010

Beach Recap, picture style

Some highlights from our Beach Trip! There were 18 of us (my immediate family, and extended family on my father's side). Thanks so much to the Hawk for organizing this, and to my Dad and sister Kate for taking most of these pictures.

I feel bad for not including pictures of the rest of the family that were there...but there were so many pictures that I loved of my own kiddos that I decided to just put up these. No hard feelings, fam.

And I'd put captions on them, but I am SO TIRED.

Tuesday, July 6, 2010

Mother of Invention: Rain Shoes

Elena has, technically, two pairs of shoes.

E's footwear requirements are pretty strict. Her main pair of shoes are the ones she wears with her AFOs; the shoe fits the AFO, not her foot. It has to be wide to accomodate the brace, and has to be able to be fastened tightly to try to keep her feet from wiggling out of the shoe OR the brace (so, no flimsy straps, elastic slip-ons, or laces). They also need to be light (Hatchback shoes are made to accomodate AFOs-but they are twice as heavy as a normal sneaker). Elena also has a leg length discrepancy; her right leg is longer than her left. We put a lift in-sole on her left shoe (we can't put it inside the shoe, b/c there is not enough room with her AFO) to equalize her leg lengths. In order to do this, the tread must be thick enough to accomodate the lift.

All this makes for a VERY expensive pair of shoes--and that doesn't even include her AFOs. Luckily for us, Elena gets a new pair of shoes about every 5-8 months, depending on how much she's grown.

Her sneakers (the shoes she wears without her AFOs in many of the PT videos) also have a lift in-sole, as well as customized arch supports. The arch supports were designed to try to keep E from excessively pronating her feet, especially on the right; our orthotist did not believe they would help much, but said they wouldn't hurt. Since Elena is typically not flat in her shoes, at least when she is moving (dynamic tone + contractures), the arch supports cannot do their job. Still, I think it was worth trying. In any case, these second pair of shoes are also quite expensive due to the LLD and the arch supports. A better sneaker for Elena would also include some ankle support (like a stiff high-top shoe, with the same thick, hard sole).

That doesn't leave us many options for dressing up.

But, on a less superficial tangent--what about the weather?

Rain, snow, and excessive heat are a real problem when it comes to E's footwear. For snow, one of the moms on a newsgroup I belong to mentioned A SHOE BY Circo (Target Brand) and they were fantastic, at least for putting on over her AFOs (E has a hard time moving in snow, for obvious reasons as well as the weight of the boots).

Rain, water, and mud have been a real pain. So, I had to become an inventor.

I needed some kind of rain boot that was 1) cheap, 2) would fit over E's AFOs AND shoes (as she'd be going to school), 3) had traction, 4) weren't too big or heavy, 5) and that would protect her shoes from getting wet and/or disgusting. I liked the idea of an overshoe, but all overshoes either wouldn't squeeze over her AFO + shoe or required E to "point" her toe to get into the boot (impossible while wearing her AFOs). So I got the idea of having the overshoe being an "overtread"--and VOILA!

Using this ingenious product called Cleatskins (marketed to put over sports cleats to prevent them from dirtying up a car), and a little "gaiter" type of "collar", here's E's rainshoe!

Cleatskins alone

cleatskins on shoes

I thought this idea of using a plastic bag would be great--and super cheap, too. Turns out it doesn't work. When E wears the bag (with a velcro strap around the calf to keep it from falling down), the silicone slips off the bag and falls off. So, I need to glue/sew/strap on a waterproof fabric upper to the cleatskins. That's okay...I"ll attach this picture to this post once I do it.

Thursday, July 1, 2010

Let's Go Fly A Kite

One of our Beach Objectives was to fly a kite! I had scouted out a kite shop before we arrived, and asked them if they had a kite that E might be able to fly.

I got it started--E could do that herself, it's so easy--maybe we'll try that today. E loved flying the kite. She would let out the line, and loved to watch it from her beach walker or her beach chair. Her sister Vivian liked it too.

Annette (our fantastic nanny): This one's for you. The girls love their beach chairs!