Monday, February 28, 2011

The Ski Doodle

This past weekend we all went to Massanutten in Harrisonburg, VA. Elena went adaptive skiing--this was a new experience for all of us, as none of us were really sure what to expect.

E had been super excited all week--to the point of exhausting herself. She'd also been sick all last week, so her energy/patience/stamina were down...I was a little worried about our trip. But--everyone had a GREAT time!

Snow girls

Waiting for Skis/boots

We were referred to this resort b/c the ski instructor was the husband of one of our "subsitute" PTs. Mr. Mark was AWESOME! He was very encouraging to Elena, and she immediately took to him.

E and Mr. Mark on the way to the lift

Mr. Mark helped Elena ski, having her be as independent (and successful) as possible. She would stand up as best she could--Mark having her bear weight as long as she was in control of her body. E is a "four-track" skier; she has "outriggers", which are like lofstrand crutches with runners on the bottom--and a pick on the back (as a brake) in addition to her skis. She also had something called a "trombone" on her skis--a bracket attachment to allow her skis to slide, but preventing them from coming too far apart or crossing over one another. Note she can stand up on skis when stationary. She also skied independently (under close supervision) for a few feet (less than 10 feet, I think) which was really fantastic (I didn't get to see it; it was on the flat part at the top of the hill).

E made it to the bottom of the bunny hill!

On the lift to the bigger hill! I thought she would be scared of the is kind of monstrous. She loved it. She said she wasn't scared at all!

E goes down the bigger hill. This is a long video--taken about halfway through the hill, where she nearly fell over. It's a pretty long ride!

E went down 3-4 times on Saturday. Mr. Mark said that was pretty age-appropriate, regardless of ability. We all went to the condo, ate lunch, and napped. E was worn out.

The next day was the Independence Cup--a Race Day for anyone who had completed an adaptive skiing program. We just happened to be lucky with our choice of weekend; Elena was very excited to race! It was wonderful to see the other skiers--some in wheelchairs, some were blind skiers; we even saw some familiar faces from our therapy center. Elena was the youngest skier at The Cup; she was also the smallest. Undaunted, she was psyched and loved the encouraging crowd!

As a bonus--Mr. Mark brought little skis for Vivian, whose only desire was to go on the ski lift with the big kids. While that was a no-go, she did get to wear her skis and was VERY proud of herself!

Just Like Sissy

Getting ready for the race!

Here is one of E's timed runs--they are moving pretty darn fast! Check out E's grin at the end--she is LOVING IT!

At the end of E's races, Viv was out of patience--so we headed home before the awards ceremony. We were sad to miss it. Mr. Mark said he had a medal for Elena--E is so proud of herself! I'll get a picture and post it.

Overall, a great weekend--a wonderful resort, a great occasion, and amazing instruction and staff. We'll definitely be back!

Wednesday, February 16, 2011

Week(s) in Review

I am running out of energy these days...not sure why, but I am just tapped out at night. Things are going well--better than well, they're great! I'm just without much text, here's what's been going on lately (in no particular order).

Uncle Andy around for the weekend--and he brought his music set up. The kids had loads of fun singing and being musicians.

PT updates! E goes up a step BY HERSELF!

Bicycle "Sit Ups"--her first time quickly "physically problem solving"

Kindergarten Winter Concert: E stood up most of the time! She did GREAT!

E at mommy's work--better than ever, with cones

And she even helped me pick them up!

And Vivian looks up to E more than ever. PICS HERE

Thursday, February 10, 2011

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.

Monday, February 7, 2011

Kindergarten, in a perfect package

I used to have serious anxiety regarding Elena's public schooling. I was a wreck before she started Bright Stars, a public pre-K program; at the time E was only 3 years old, and I felt like that was too much for such a young child. The teacher was well-recommended, but they had never had a physically challenged child like E. It was PHENOMENAL.

The following year, a pre-K program popped up in our home district. I felt like it was important for E to be around peers that might possibly be in her future classes; but, the teacher was new, the school terrain was more challenging. E did GREAT.

I worried about kindergarten, with the ever-widening gross motor gap and the budding self-awareness of E's differences--and things are literally about as perfect as they can get. Despite what amounted to a head-on collision with the Special Needs Coordinator at E's kindergarten IEP, E's public school experience has literally been a dream-come-true.

Elena's impairment is strictly physical. Since the IEP is based on educational need, technically her disability does not mean she has an issue with learning or mastering the current curriculum. In the beginning (first year of pre-K) E had a pretty significant speech impediment/delay, she automatically qualified for special ed services (placement in pre-K, Speech Therapy and Physical Therapy during every school week). The speech delay was the qualifier for her placement. That speech delay resolved itself in nearly 5 months after she started school.

So, our key words for the following year(s) were 1: ACCESS to the curriculum, and 2: SAFE inclusion with her peers, all while fostering independence and social engagement. I was worried about E's ability to socialize with her peer group--prior to school, interaction with other children was minimal due to her physical limitations. She spent most of her time with her family, her doctors, and her therapists. Turns out E's a little social butterfly--her teachers have told me point-blank "do NOT worry about Elena's social skills", with a smile.

Elena has qualified for physical therapy services in school based on the goal of safe access/inclusion to her educational environment. Realistic goals, which she needs or needed help/training, such as: taking off her jacket and hanging up her bookbag; getting in and out of a seated position; PE class; getting to and from the bathroom; carrying school supplies; getting to classes in different rooms in a timely manner; navigating the playground; navigating the lunchroom. In kindergarten, there is one (part-time?) aide, the teacher, and 20 kids. If Elena falls, or is late, or has issues with a given activity, she'd be a major disruption to the normal class. And she used to fall often (post-PERCS, she's moves much better). E's IEP team decided in the beginning of the kindergarten year that it would be the best solution if E were to have her own full-time aide.

I was floored. Seriously? I was worried that the aide might prevent E from typical interaction with her peers--but that was actually just the opposite. Angela used to be a special needs teacher and practices "non-attachment"--which basically means even though she's there for E, she's just about invisible. She is AMAZING. E's access and inclusion is more than I ever hoped for, and that's due to her aide, her PT for pushing the idea of her aide, and her teacher(s) and her STUDENT PEERS.

The other kids are really great. I've been told teasing comes any day now; kindergarten, maybe a little sooner or later. E hasn't come home (yet) crying about what someone said or did to her. As a parent of a special needs kid, I guess that reality is more of a "when" than an "if". But her classmates are extremely wonderful. This whole mix has been incredible.

I know E's physical disability doesn't impair her ability to learn. So, technically, I guess that they could yank all her services at any time. I'm so grateful and thankful for what we've received. Apparently, once you have an IEP, your child qualifies for services for the next two years. Not sure what those services will be--in an ideal world, E would be eventually weaned off all special services as she grows more independent.

Here's what I do know: our public school experience has been amazingly positive. Elena's teachers have welcomed her with open arms, and her peers treat her like everyone else. We have been granted services every year E's been in school so far (3 years), including the Adaptive Physical Education (APE) program. All her educators want to include her as much as possible, and we are all working together to have Elena be as included and independent as possible.

It really takes a village...and mine is seriously awesome.