Thursday, June 30, 2011


I've been thinking how I can get E on a bike around our neighborhood. As I mentioned before, we live in a very hilly area, and taking E on a bike ride is not trivial--it either involves a car ride to a remote (flat) site, or a lot of pushing/awkward bending over on my part.

I saw a trail-a-bike/tag-along bike in an advertisement. My first thought was, "that's perfect! E could practice pedaling, and learn to bike with me until she's strong enough to do it on her own!" and my second thought was "does that seat have enough support? Does she need a seat belt? How will I work that into the seat? What if she gets tired and forgets to hang on?" I don't want to realize she needs help until I'm dragging her on the ground behind me (b/c her feet will have to be strapped to the pedals).

Well, I called a couple of bike shops and asked if we could test-ride one. I insisted we needed to go outside, with turns (not just sitting on it), and a few bumps. I brought our helmets and some velcro cable ties to keep E's feet in the pedals (they didn't work that well...I have a few ideas for the next run).

Here's our first try-sorry for the shakiness, our sales guy was a little jerky in the camera movements:

What you can't hear is me asking Elena "Are you okay? Do you feel safe? Are you secure?" and Elena is humming, and then answers me "THIS IS AWESOME!"


It's Happening

I took off work early to take Elena to test out a new bike (more on that later). I insisted that we needed to be able to try it out in the store, or behind the store--b/c we had concerns (related to E's CP) that the bike might not be a good fit.

On the way to the store--in the f'ing car--E asks me, sincerely,

"Will I always have cerebral palsy?"

My eyes get REAL BIG.

"Is this something you want to talk about right now?"


"I'd rather talk about this next to you, not in the front seat."

I'm thinking, please please please NOT NOW. Let me look at you and give you that look that I love you and things will be fine. But she kept on pressuring me. Look--I don't lie to Elena. When she asks if shots/surgery hurts, I say yes. Better to be honest so she believes me when the time is truly important.

I sighed. "Well Elena...the answer is yes. But you are learning more every day--"


She is WAILING, Sobbing! I can barely drive the car. I'm thinking, I need to PULL OVER RIGHT NOW and help her get it together. But I don't know what to say. She is carrying on, I can't even understand her words, but she is seriously upset about this-and I'm pretty sure she doesn't quite understand the whole situation. I'm holding back tears, feeling like I'm unraveling, and thinking I have GOT TO PULL IT TOGETHER.

I get to a parking spot by the bike shop. E has calmed down some. It's super hot outside. I get her out of the seat, and hold her in the driver's seat with me.

"Elena, are you alright?"

"Yeah. It's hard sometimes."

My heart hurts. How do I do this???

"I will help you do whatever it is you want to do. This is just one little part of you, and I love the whole you--everyone does. I'm sorry if I upset you."

"It is upsetting--" she is talking so low and weak now, talking into my shirt.

"I'm sorry I upset you. I never want to make you sad," as I hug her tightly and hold her hair, "But I can't change this." GULP. BREATHE. "I can help you, and you learn new things every day. I love you always, in all ways. You do know that, right?"

"I know," as she buries her face in my chest. We stay there for a few seconds.

"How about that bike?" I ask.

"Well, I better wipe off this wet face then."

We both laugh. And pick up the pieces of ourselves, while shedding off a little of that everything-will-be-okay facade, that I think both of us harbor a little bit each day. Even though the weight is excruciating, and the reality of her disability "awakening" very raw--and real--now, I'd rather chip at her veil of normalcy than have it slapped in her face later. This year is going to be difficult sometimes. I just hope I say the right things.

Wednesday, June 29, 2011

Water Safety (Mom Panic)

I think it's a well-known fact in my family that I plan for the worst-case scenario...and sometimes, I do get fixated on it. Overall I think I do an okay job at balancing risk and Real Life, regarding Elena. But water has me spooked.

Fall hazards (and head/other bodily injury) aside, the pool can be a dangerous place for us. All of Elena's peers (that we know) can swim. I believe E will be able to swim one day--she does love the water. She is proud that she can swim in her swim vest. She swims doggie-paddle style, with me reminder her about "fish hands" (closed fingers) from time to time. She moves her legs as if she's crawling, more or less. Mostly I just let her swim the way she wants.

Last week she saw a friend's dad throwing her friend in the water--sort of a little toss-up, and the little girl was laughing. Elena wanted to try it. I tossed her a little--seriously, maybe a foot away from me, lifting her waist out of the water--enough of her body was out so that when I let go, she went completely under the water. Elena LOVES putting her face in the water, that isn't an issue.

But when her whole body went underwater, she froze (toothpick-style), and waited (while breathing in water) for the swim vest to bring her to the surface. When she was up, she gasped and choked, was very scared, and finally started moving her limbs as I grabbed her. It never occurred to her to swim or make motions with her limbs to get out from underwater, despite knowing she wasn't breathing air.

It didn't take long, probably not even a few seconds. But the fact that she was barely underwater, and had this problem, makes me extremely scared. What if someone throws her, like a normal kid, and she goes under FURTHER? What if she falls in the pool? Don't typically developing kids have the instinct to wrangle their arms underwater if they're in trouble (even if they can't swim)?

Elena is a smart cookie, so I think we can teach her this. Maybe this was a rookie mistake? Do all kids do this? Needless to say I had nightmares about E going underwater (all dreams ended okay, or else I'd still be a wreck). We're supposed to go on a boat this weekend. NOW--E's swim vest in NOT a life vest (which E WILL be wearing on the boat)--still, I will have an iron grip on my kids.

Anyone care to weigh in on this??

Wednesday, June 22, 2011

PT Recap: Same stuff, with progress

Here's some new vids of E at PT:

Obstacle Course: E needs to take small, controlled steps and then go uphill.

Obstacle Course: Down steps (going for step-through), and slalom.

Moving Backwards: Real progress here!

Walking on Mats/Stop: Controlled stepping over uneven surfaces and co-contraction to stop.

Even Hips: We're trying to get Elena to equalize her hip stance when standing or walking. Here she needs to lift up the hip/leg that isn't on the platform.

Stepping Backwards: Using a ball helps stabilize E, but also helps her realize to stand up tall while moving backwards (otherwise the ball is left behind).

Ambitious Summer: Here we go

Our "Ambitious Summer" plan involves a lot of things--therapy, more independence, activity, social interaction, and one huge one--FREE WEEKENDS, to do family time, or travel, or NOTHING. This is a big deal, b/c up until now, Elena's only free day was Sunday, and that was mainly spent getting ready for the school week.

E still has therapy 4x/week (2x Feldenkrais, 1x PT, 1x Hippotherapy). We try to make it to the neighborhood pool 1x week (typically with friends), and E has library time and community time (local happenings, like the Whole Foods Kids Club or library concerts/shows) and park playtime. We have our Fantastic Nanny Annette, as well as our facilitator S, and another helping hand or two (more on that later) to get the kids out and about and crazy fun.

Last weekend was Father's Day: Elena's present was to make dinner. I was going to do a separate post about it, but I forgot, so I'm just going to post a few pics here.

Taking the Order at "Elena's Cafe" (menu was included)

Chef at Work (she did the most of the cutting, spreading, and all the assembly)

We tried to let her carry the tray, but E's not quite up to that task yet, so she got some delivery help from Viv and I.

Dinner Smooches for the Best Dad!

Thursday we went to the pool (Dinner at the Pool night). Both girls were so excited about the pool! I tried to see if Elena could get in the pool by herself. I strategically placed two deck chairs as hand holds, and with me close by, she walked from our table to the rail, and holding on with both hands, she went down the steps into the pool BY HERSELF! She swam a ton (she looked tired!) in her swim vest. When it was time to get out, she was unsuccessful getting out by herself. She needed assistance due to fatigue, weight of the water, shivering from being cold, or any combination of those and she exited holding my hand to a chair (and warm towel) right by the pool. A+!

This weekend we had friends over for dinner and movie (Finding Nemo), and Saturday we went to the Splayground with another friend--and saw TONS of other people there! The Splayground had lots of kids--but with the Beach Walker, E had a great time. The other kids were curious, the other parents loved it and asked questions, and everyone had a great time.

(I will have to raise (raze?) the Beach Walker, as it needs to be a little taller. I'm working a new version in my head--one that comes apart in two pieces, to both better fit in the car and to be easier to "size up". Hopefully that will be done by the end of the summer.)

Sunday we went for a bike ride in our neighborhood (HILLS EVERYWHERE) in E's Pink Cruiser trike. I don't have any pictures, b/c downhill it was me running after her (and slowing her down the hills by holding the seat back), and pushing her uphill (ONLY if she was also pedaling--no free rides here!). We went to feed the geese--both kids loved it, and it was a nice short ride before it got too hot. My major observations are that Elena can really engage that trike--even on the hills, although she's not strong enough to do them herself right now. I also taught her how to operate the hand brake. The tension on it is very high, and her little hand can just barely span the handlebar and the brake, nevermind having the strength to actually squeeze it. She did do it once, but at the expense of losing control of the bike (Mom at the ready, so no worries). (I do have to work out a different pedal arrangement (same shown in the link)--this one is cumbersome and she needs more support on the right side.) E was VERY proud of herself--and, more importantly for me, this trip didn't involve packing bikes in a car. We'll be doing this a lot this summer, I think. I'm also contemplating this kind of a arrangement...

Saturday, June 11, 2011

The Summer of No Carrying

I have several Ambitious Summer of them is to stop carrying Elena. In all honesty, we do it often, in certain situations--steps and stairs being the most common ones. We live in a three story house, and the steps outside do not have a handrail.

During the school year, we have been in a rush, and Elena is NOT a morning person. We would have had to wake her up a minimum of 30 minutes early to attempt to have her do all her step/stair transitions herself. Quite simply, that was not a good option.

Well, since we don't have to rush to get to a bus anymore--now's the time. The Summer of No Carrying means when the people involve Jason or myself, Elena will NOT be carried AT ALL (ideally other caregivers will do the same, but I'm not going to insist on that). No matter how tired she is, no matter the weather, no matter the footwear--Elena will move her own feet to get from point A to point B. She can hold hands, use crutches, use rails, etc. but she must move her own feet (or scoot, or crawl, depending on the situation). I typically bank in an extra 30 minutes for "getting out of the house" time, if E is going to do all the transitions herself.

I sort of sprung this on her yesterday. We had talked about it before, but in the rush of kindergarten "graduation", she forgot that being a First Grader meant we instituted the No Carrying Act. Today (day after the last day of school) was our first day.

She went down the steps in the morning herself--scooted down on her bottom (which is fine) to play before the rest of us got downstairs. We went out for a morning activity, and she held one hand and used one crutch to go down the steps outside. When coming home, she opted to go through the basement as the steps have a handrail, and opted for the other hand held. We had a flash thunderstorm before Feldenkrais today, and again she opted to go through the basement, one hand held and then got to the car herself (flat concrete). One hand held and one crutch used as we crossed the street. Same thing on the way home. Going to bed, there was some whining about how she didn't like the No Carrying Situation (I have always carried her up the stairs to bed) but she didn't complain long, and we just went up for bedtime.

I noticed immediately that after just one day, her weight transfer going up the stairs has improved--she leans forward more and pushes more with her legs (rather than pulling herself up with her arms). Practice makes perfect, no?

It'll be a challenge for Elena, both mentally and physically to adjust to this. I LOVE IT. It is MUCH easier on me to hold her hand than to carry her--she's not necessarily heavy, but she is long and her tone makes it awkward to comfortably hold her weight when doing stairs.

Saturday, June 4, 2011

Wee Walk 2011

We try to make the annual UVA Walk for Kids (Children's Hospital Fundraiser) every year. There are always tons of great volunteers for this great cause, and they are really encouraging. Last year, E did the 1/4 mile Wee Walk for the first time EVER. It took her a long time (45 minutes), from start to finish; she was not at all proficient with her crutches, and it was really hot. This year Elena was excited to "run her "marathon" to help babies", as she called it.

We got there a little early, so we played some games--I carried E so she wouldn't get too tired before her big walk.

Beach Ball


Then we went back to the shade for some water, and a Team Doodle cheer!

Mommy, Viv and E from Team Doodle

We started off strong. Our goal was to "keep moving", trying not to stop. We did have a few very brief stops along the way, mainly for sips of water.

Viv took off a few times

Almost halfway

Finishing Strong!

Awesome job E!! Not only did she finish her Wee Walk with a personal best time OF 13 MINUTES(!!), but she also had energy for a bounce house afterwards--and managed to run a few steps, several times--and jump afterwards (once) in just her socks!

If you're in C'ville, check for E on the news tonight!
-by popular demand, here is the TV spot--she's just in it at the end.