Before Christmastime last year, we went to a local celebration where, amongst other things, there were some lovely ballerinas performing some Nutcracker dances. I received a flyer for upcoming performances. I anxiously awaited their Fairy Tale Gathering, an interactive show just for kids.
Before buying tickets, I asked what "interactive" meant; if it was going to be kids swarming the stage trying to do pirouettes all at the same time, that was not going to be a great situation for E. Lucky for us, it meant getting a little out of your seat, clapping, shouting, dancing by your seat, that sort of thing. We were PSYCHED. I invited Grandma down to make it a super special engagement.
We LOVED the show--everything about it! There were gorgeous dancers, pretty costumes, fun activities, and even a tea party afterwards where we could meet the dancers. Sure, there were some kids who didn't understand that it was rude to try to squeeze by Elena, or jostle her too hard--but that was fine, and E didn't fall. We saw some familiar faces, and some of the dancers even remembered E from Christmastime!
There is a program called Just For Kicks, founded (?) by Tom Moran. "Coach Tom" is a very exceptional individual--he has an amazing passion for helping children, ALL children, regardless of disability, to enjoy movement, play, and sports. The sessions are free. We had the pleasure of attending a Just For Kicks session when E was 3, before her SDR operation. E was by far the youngest person at that session, and the one with the largest deficit in gross motor function. Over a year later, E still is (probably) the youngest, definitely the smallest, and still is the only child who cannot walk independently (very well, anyway). She was also the only person there with an obvious physical disability. Aside from Coach Tom, that is.
There were children of all different ages, most having some sort of behavioral issue. There were many facilitators at this meeting, most were UVA college students. It didn't matter how old you were, how well you could move, if you could talk, etc.--Coach Tom knew how to get all the kids motivated, for them to feel confident, and for them to feel comfortable, and for them to enjoy themselves. He also knew how to get them to listen. It's like he's MAGICAL, the kids just LOVE him!
Here are some of the activities the kids did (in case it gives others exercise ideas): --circle time, introduction --walking around, giving high-fives and telling everyone "You Are Awesome!" --obstacle courses with sit-scooters, cones, jump ropes, color pads --tic-tac-toe with beanbags --beanbag games/concentration/balancing --walk to a shape on the ground, uncover a card; bounce a ball as many times as there were pips on the card --a variation of Twister involving the floor and the wall --parachute games (cat and mouse: mouse hides under the parachute, everyone makes "waves" and a child walks on top of the parachute trying to find the mouse; sitting inside an "igloo"; playing "shark", where if your foot is tagged you have to go under the chute while everyone standing makes waves; "popcorn", where beanbags are placed on top of the parachute, and everyone has to make waves to "pop" them; color chase, where if Coach Tom says the color you're holding, you have to run under the parachute to the opposite side, etc. etc.) --cup stacking
Here are some highlights with E: Tom leading the Train before sending everyone To Stations (E can stop and use her hands while keeping her crutch on)
Twister Wall with Ms. Kara (not the best video, but you get the idea)
Cup Stacking with Ms. Kara (all activities are done in groups or in parallel, to encourage interaction). I liked the way E didn't stack cups like everyone else, she really explored different ways to do it.
Beanbag tossing with Ms. Julie
A Parachute Game
Coach Tom at the closing
You know how I know how important a program like this is? Because of what these 4-12 year old kids learned at the end of this 2-hour session. Everyone sat in a circle and said something they learned. Here are some of their lessons, from the kids' own mouths.
"I learned that being autistic means you can still make friends." "I learned how to have fun with others that are not like me." "I learned that it's okay to ask for help." "I learned not to yell when it's not my turn." "I learned there is a time to be patient, and a time to yell for fun." "I learned to share."
And many more--I almost cried. Oh, and did I mention that this was also a kick-off for the Helping Hands program, where the facilitators make themselves available so that these kids can be in any community program, despite their disability, so they can enjoy that activity in a peer setting? YEAH. Amazing!
Happy Valentine's Day! For us, it was just a normal day--trying to get E exercised, me going to work, trying to clean the house up. Honestly, to plan something super duper special was just more work than Jason and I could handle!
E and I did make a cake, though. I let her decorate it. With A LOT of icing. And a candle. Hmm....yum?
On February 4th, it was a relatively normal evening--we were scrambling to get dinner on the table. E and Vivian were proving a little more high maintenance than usual. After what seemed to be forever, we were all finally sitting down and ready to begin our meal. And, just like clockwork, just as the forks are coming to our lips, E confesses: "I have to go to the bathroom".
SIGH. I'm so exhausted. "You know what? You have your shoes and braces on. Just go."
Jason's eyes go REAL WIDE. E gets down from her chair and heads to the bathroom. She's never tried this before--normally we have been right by the door, ready to spring into action to avoid a head injury. Jason and I were frozen in worried anticipation. if E fell, this could be a horrible setback. We didn't end up having to wait for thud, though...E kept giving us the play-by-play.
"I'm on the potty!" "I'm not falling in Mommy, don't worry!" "I'm WIPIN!" *singing now* "I AM PULLIN' UP MY PANTS!" "MOOOOOOOM! I decided I'm NOT GOING TO HANG UP THE TOWEL 'CAUSE I CAN'T REACH THE HOLDER." "I'm DONE! MOOOOOOM! I'm comin' out!" "HERE I COME!!!!"
She is practically DANCING her way back to the table! For us to NOT have to drop everything to help her to the bathroom is a HUMONGOUS change in our lives. Not to mention the confidence boost this has given E--she wants to do everything she can--get her own drink (we now put a cup so she can get water from the fridge--she can even walk to the table with it!), help bring dishes to the sink (relatively clean, light, ideally unbreakable tableware), swiff (she can even do it without holding on to the wall!), and has started putting some of her toys away (only when she feels like it). She can do these things when she is wearing her shoes and braces.
I have a feeling this will be the way things are for a while--when she is wearing her shoes and braces, she can do a certain tier of things; when she is wearing her sneakers sans AFOs, a different set of things, and when barefoot, much fewer things. That's okay--we're determined to turn those few things into many.
E has really looked great lately at PT. Her hips looks so square! In the past, she's really had her right knee cave in, followed by her right hip. Her knee still caves in, but not as much as in the past. Her right hip does drop--but she has started to fix it herself, even without a voice cue.
Here is E doing CME with Molly--hips looking good here, even though she fell.
Crate Steps--again, hips look square, and nice lifting of each foot out of the crate.
In case you're not sure what rockering means, here's a pretty good example.
We've been working on strengthening E's ankle muscles with the hope she can dorsiflex better, with the hope she'll be able to walk without her AFOs on someday. Here's what it looks like now--note that she still drags her toes (it used to be her entire top of her foot last year), and that as long as she walks slowly, she can get her entire foot flat on the ground sometime during her stride. This flat portion of the stride is very new (hadn't happened before her SDR operation). You can also see how badly broken down her arch is--"rockering"--in the rear view video (do I even call this an arch? I don't know).
Keep in mind one of her hands is along the wall, and I am holding the other.
Truth: our family hardly ever watches television. We certainly don't follow football--but we LOVE the Super Bowl! Especially when we have a reason to root for the underdog. My Favorite Aunt Stacy lives in New Orleans...GO SAINTS!
She was very excited when I told her she could wear "makeup" like the football players.
E practiced her football moves all weekend. Here is her take on "how you play football": -When you are the quarterback, you throw the ball. -Then a player catches it. You tuck the ball under your arm so no one can take it. -Then you run and make a touchdown.
No Problem.
After watching the game for a few minutes, I had to explain the "tackle". I told E "when you are trying to make a touchdown, the other team wants to stop you, so they try to knock you down".
"Wow Mommy...they REALLY don't want him to make a touchdown." LOL
Another big snow, another adventure! They're calling it "Snowmageddon" around here. We are loving it.
We started off creating a snow castle--I used a bread pan to make snow bricks. It was working very well, until E leaned on it too much and sent a wall crashing down (before I could reinforce it). Turns out that didn't really matter...with the weather as it was, and some pretty destructive boys, the Breadpan Castle wasn't going to make it through the night. Sad, b/c I didn't get a picture of the partially made, but still very impressive fortress.
So I started a new project--something E could lean on and help build. We made a snowboat! I give you Captain Elena, of the S.S. Doodle!
Lots of snow, lots of shoveling, lots of days out of school. Mom and Dad are tired.
Next up: School recaps. Holiday prep, maybe. Recaps on some events.
Overall things are going well here.
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Mission Statement
No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.
I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.
