(That's what every parent who is a math/science teacher wants to hear - ARGH)
Sunday, July 27, 2008
(That's what every parent who is a math/science teacher wants to hear - ARGH)
Saturday, July 26, 2008
Blondie had her tennis lesson today. She is really enjoying it, and most importantly, feels successful in doing it. It definitely works her right arm, and helps her compensate for the vision issue. Cheesie is VERY jealous, and wants to do it too, but she isn't quite old enough yet.
One more thing someone with one hand can enjoy.
Wednesday, July 23, 2008
Our swimteam is housed at a country club, and we enjoy the pool and the people. Last night was the awards night for the swimteam, and then a dance followed for the kids and families. Apparently ALL of my girls thought it was a HUGE date night, and the effort that went into getting dressed and doing hair was tremendous. "Where's my bow?" "Mom, Hair up or down." "Can I wear blush? I'm almost 12." All of the girls had long since picked out their clothes, but were concerned they couldn't wear their strappy sandals in the club (they could). All of the girls on swimteam were dressed up, and all of the high school girls were VERY dressed up. What cracked me up was that pretty much EVERY SINGLE BOY in the place was in khaki shorts with a polo (I guess having boys WOULD be easier to dress).
Each girl got a trophy for participating in swimteam, with the little girls also getting blue ribbons, and the older girls getting participation ribbons and swimcaps. Then the bigger awards came up. BLONDIE got MOST IMPROVED SWIMMER for girls in her age group (about 15)! I was stunned. This is a big deal in the club and a lot of kids work toward it, as well as the Best Attitude award. Did her arm have something to do with it? Maybe, but she didn't win it last year. We were all very proud of her, and she was excited to get a special trophy that pulls off to be a medal. We took pictures of her with coach Jessie, and then the girls (and some friends) with coach Dan (EVERYONE's Favorite). Coach Jessie will be a teacher next year, and a GREAT one at that, but coach Dan is that rare young man who is simply perfect. He makes all of the kids laugh, he spends tons of time with them just playing and hanging out. He corrects the younger boys' behavior, teaches all of them to play cool games, and most of all he and Blondie have the same sense of humor. Cheesie preferred Miss Jessie, but Blondie would wait her turn until coach Dan could watch her go down the lane.
After the awards was THE DANCE. They played a lot of old classics (fun to dance to) as well as the group dances like ChaCha Slide. The kids had a ball, but I could only get a few good pictures because they were all moving so fast. We left when the swimteam starting thinking it was great to run out to the golf course and run through the sprinklers. All in all, a great night.
Monday, July 21, 2008
This person was responding to Blondie slipping on the pavement and crying. Now when she gets tense and cries, her hand looks kind of funky because all of the muscle tense up, so I did a quick wrist check to make sure nothing was broken, and sent her back to get in line for the diving board.
me: "How I do what?"
"Have the strength to be calm every time she gets hurt?"
me: "Do you get upset every time your 6 yo falls?"
"Well no, but mine isn't disabled."
me: "Neither is Blondie really, her arms is weak and she limps, no biggie."
Then I got THE LOOK. The look that says either "Wow, you're so strong," or "You are in serious denial about your child."
I am obviously focused on kids like Blondie who have had this rare brain disease, but I am always looking for other kids who can light up the world and show that everyone has a lot to offer. I use the word "disabled" in conversations to set others at ease that YES, I know something is different about Blondie, but Big Al, Cheesie and T-Rex are different then others too - don't all kids have "special needs?" Everyone has strengths and weaknesses.
When Blondie became sick I was devasted about the loss of muscle use, and the obstacles I thought she might face. I CRIED HUGE TEARS right at the counter of the DMV the day I got a handicapped parking thingie for the car because she could either walk to the store, or walk through the store, but it was exhausting to do both (now I can't find that thingie - we never use it). At the time, I thought of all these things she wouldn't be able to do. (Now keep in mind this is an old list) I thought she wouldn't be able to do a handstand, or swing on the monkey bars, or drive a car, or swim well (HA), or have only a few friends, what about boyfriends and getting married? Who would tie her shoes (again HAHAHA- see below) and cut her meat, could she keep flip-flops on (not yet)? At some point I realized I can't do a handstand either, so I started to think about the things she COULD do, and I actually made a list that I keep in my purse.
Take a look at these amazing people (and all of the things I can't do) -
Wheelchair skating -
This young man scares the crud out of me (I bet his mom can't watch either), but he is INSPIRING!!!
One handed Rubik's Cube -
Is he considered disabled because he only uses one hand, or amazing because he COULD use two hands, but chooses not to?
One armed Drummer- Def Leppard
Hey Colin, can you teach Blondie to do that? Hmmmmm..... maybe not in the house.
One handed Piano playing
Great. Sign all 4 up for piano.
It took me awhile to say the "D" word, and now I can say "Special Needs" and not be offended, but I tend to look at things this way: Blondie was on a path in life, and then this crummy illness knocked her over. Now she is on a path that is slightly to the right of the original. It is still wide open, just ask those kids that got the scholarship for college that Jessie's family sponsored.
One of the kindest things that ever happened to us was a few months after Blondie had her surgery. Big Al played softball that fall, and the other families at the field saw us with a healthy 2 yo. When she returned to play in the spring, we now had a disabled 3 yo. They missed the whole drama. Most didn't ask us anything about it, or just heard about the seizures and surgery in vague terms through the grapevine and left it alone. They got used to me toting both a tiny toddler, and Blondie up the hill to the field. One day, a few weeks into the season, Blondie walked from the car and up the hill to the field. On the way I saw people looking and I was sure they thought I was a terrible mom because I was about 10 feet ahead of Blondie, and determined not to help her. It took a minute for me to realize that several different families that I didn't know were clapping for her. They were cheering her on up the hill. I have to say that moment helped me realize that people were quietly watching what we did, and taking their cues from us. We don't baby her. She must do things to the best of her ABILITY, not avoid things because of a disability.
So for those of you who are tuning in or learning that your own child, or your friend's child, is suddenly disabled, don't look at what can't be done. Don't think in terms of "victim" or use words like catastrophic, don't hand me the "Holland" article. Just celebrate with me when my kid finishes swimming in the pool, or walks up the hill, or learns to read in Kindergarten. Please include all of my kids in daycare, and soccer, and softball, and skiing, and whatever the heck they want to do. Kids like Blondie will figure out how to do it their way - will it test your patience - probably, as well as every ounce of your coaching skill, but don't do it for them. Let us know that you recognize how far they have come, but move on in the conversation. Ask us about our other kids, or work, or our vacation because other things have happened today that had nothing to do with Rasmussen's or whatever the difference is between my family and yours.
It is a hard fence to walk sometimes. When you are in the middle of dealing with it, it is the only thing you can see, but ever so slowly you start to notice other things, and then you can go a whole day without thinking about it. Those are my favorite days.
Tuesday, July 15, 2008
Thursday, July 10, 2008
The new office shows a lot of promise and we are quite excited about all of the possibilities - a kitchen for cooking - a pool, a playground, a big green to play on, VERY quiet streets on which to ride our bike, etc. See, Ms. Kathy started this place so she could help kids learn to do what they needed in an environment that got them out and moving. Previous employers (we are glad we are no longer connected to) told her she had to keep kids inside, couldn't take them outside etc. Well, outside is where Blondie rides her bike, and her roller blades, and climbs on playgrounds - so this new place works for us.
Blondie was in the back room changing into her swimsuit when Ms. Tonya (OT) walked in. She saw Blondie sitting there asking me to tie her shoe, and immediately jumped back in to reteach her how to do it. Now Blondie was NONE TOO PLEASED with this idea because she wanted to go to the pool, but Ms. Tonya was insistant. There was a LOT of sighing, and eye-rolling, but eventually it was done. Unfortunately for Blondie once the first shoe was finished there was ANOTHER WHOLE SHOE to tie. I do have a video of this exchange, but it is too big for this blog.... so we had Blondie do it for the camera (and still pictures). If I can figure out how to edit the video in Movie Maker (and frankly have the time to do it) I'll post it later.
Now you have two knot thingies on top of each other.
Step 5: Poke one of the plastic ends of the lace through the knot thingie until it makes a rabbit ear.
Step 6: Do the same thing with the other lace so you have two rabbit ears.
Step 7: Use both hands to pull both rabbit ears until tight.
Step 8: Take a break because you have ANOTHER shoe to do.
Sunday, July 6, 2008
Tuesday, July 1, 2008
Another swim meet last night. None of my girls are going to the Olympics any time....ever, but they are learning the strokes and are more and more water safe. Cheesie was thrilled because she is finally putting her face in the water, but still needs help. Blondie swam the 25 yards with someone near her, but not touching her. They tried to get her to swim by herself but she freaked out. The girl with her didn't touch her once though - more of a security blanket. Pictures of Cheesie with her ribbon, and Blondie in the pool.