Big Al went to a lego camp through the girl scouts about a week ago. They had a great week (even though she missed a day because of fever) and the last day they had a competition. Now Big Al is VERY competitive and likes things to be done right, and wants all spotlights on her (and her team). When she was sick she missed out on how to program, and when she went back she found that another girl had quit the camp. Her team was quite behind everyone else, but Big Al jumped in and they all worked to get a little bit done. They used one of the competition mats from the national competition, and their goal was to get a few of the challenges completed, but these mats offer about 10-15 different things that can be programmed to be completed, so there was NO WAY a kid could do them all in 4 work days.
Thursday (of camp week) she gets in the car and says, "I am NOT going to be an engineer!" It surprised me because Math and Science are actually her favorite classes, although she wants to be a newscaster or some sort of job where she is famous.
me: Why not?
Big Al: Ohmygaw mom, you have to remember all of these little details, and put them in the right order, and THEN it might not work. It is so frustrating.
me: Ummm... that's what scientists do Big Al.
Big Al: But it is SO boring, and then you tell the computer what to do and it won't do it right.
me: Look, scientists all over the world walk into their labs and want to solve problems like great-grandma's alzheimers, or granddad Charlie's cancer and they mess up millions of times before they might make a tiny discovery. That biomedical engineer that came in to talk to you goes in everyday trying to put together strands of genetic stuff in the right order to cure Alzheimers. She hasn't been successful yet, but she keeps working. Engineers try to solve problems that don't have answers yet.
Big Al: But it's hard.
(That's what every parent who is a math/science teacher wants to hear - ARGH)
On Friday they "competed" against other teams to see how many challenges they could complete. Unfortunately I was a BAD MOM and missed videotaping the practice run where Big Al got her teams' robot to complete two challenges. In the competition for points they couldn't get the second challenge. The first video shows the challenge where they had to pick up the black thing and bring it back to shallow water or the beach. This was considered a successful run because the ref said they did actually get it back to the lighter blue water. The second video they were supposed to just move the gray shark off it's square without touching the green fish, which they did in the practice run, but not in the final run.
Our 3 younger girls enjoyed watching the competition, and T-Rex is desperately looking forward to the time she can do that sort of thing. Unfortunately her school doesn't have a team yet.
Overall I think Big Al enjoyed the competition, although she still doesn't know if she wants to be an engineer.
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.
When you have four daughters, you frequently hear jokes about "Oh my gosh that means 4 teenagers" or "Your poor husband, all those girls." etc. Well, last night my "poor" husband was working in Florida, and missed the sudden vision I had of the future,
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.
I was approached today at the pool, and heard once again, "I don't know how you do it." 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.
... but want to play a two -handed Wii game..... find a sister!!!
I got called in to help with Big Al's lego robotics camp yesterday, and came home to find the little girls playing Wii. They had discovered a "new" game and figured out how to play it. The game..... boxing. They loved punching the bag, but Blondie couldn't make both controllers work (her sleepy hand can hold things, but can't push buttons). Her solution was to get Cheesie all excited about the game, and then let herself hold the right hand controller, and Cheesie hold the left.
Please excuse the crud in the background, I was gone all day, and Brian is working on the computer in a whole other part of the house, so I came home to "fun day without much supervision" mess.
Check out our "harvest" from the weekend. Enough beans for the entire family of 6, 4 green peppers, 3 jalapeno peppers, and about 8 tomatoes. We've been pulling off smaller amounts of single items for awhile now, but our garden is suddenly producing a lot everyday. We ate all of the beans, made an attempt at salsa/pico d'gallo sort of thing with the tomatoes, and jalapenos, and put the peppers on pork chops last night. We're far from self-sustaining, but our kids know the work involved in a tiny bit of food.
Blondie finally has a new OT, and she appears to have a lot of good ideas. On the very first day we met her (last week) she showed Blondie how to tie her shoes with one hand. We didn't practice it a whole lot, because honestly I hadn't paid total attention to it. Tuesday was therapy day and Ms. Kathy's new place is by a swimming pool. Blondie grabbed her swimsuit hoping she could showoff her swimming skills, and we went to therapy.
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.
Step 1: Cross the laces...
Step 2: If the lace on the right is on top then pick up the lace and thread it up through the bottom (It its on the bottom then thread it down through the top)...
Step 3: USE SLEEPY HAND to help hold on to the laces (with your regular hand) and pull tight - She is SO amazing. Step 4: Repeat steps 1-3 again.
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.
You would think with all that "free time" teachers have I would be keeping up daily with my blog. HA. I just finished another grad class, so that is one thing checked off my list, and swim lessons end this Friday. After that we just go to the pool to enjoy ourselves and spend time in the water - enjoyment, not obligation- check. I also just finished a Barbara Kingsolver book that I really enjoyed, so that was for my own inner peace - check.
Brian has been working on his big project this summer. I THOUGHT it was going to be installing the hardwood floors in the remaining two bedrooms and finish the hallway. Apparently that is a project for when we are unable to go outside (it's been reasonably nice this summer, so I guess "sort of hot" is outside weather). Instead, he tore out the screened porch, painted all of the studs, rescreened it, painted the ceiling, and installed the fan. THEN he washed and painted the siding in the back of the house, and all of the windows. He was ready to move on to the side of the house when I got grouchy and wanted my windows scraped from all that paint he got on the class, but he is ALMOST finished with the back of the house. It looks great. The before picture isn't so great, but you get the idea. He has definitely been busy, and I guess my flooring can wait until some other time - even though it is in the garage and whispers to me every time I walk by it.
Now we just have to put in the flooring upstairs (and downstairs) gut the kitchen, redo the bathrooms, tile the kitchen, redo the deck and railing....
Over the fourth, the kids were all in the neighborhood parade. All of the kids, pets, and convertibles, and anyone else for that matter, who want to walk in the parade are invited. We are usually at the lake house for the 4th, but the drought this year has killed those plans, so the girls decorated their bikes and all of them rode. Big Al and T-Rex of course didn't need any help, but Blondie was wiped out by the riding (we rode all the way to the tennis courts-in the parade- and then back to the house), and Cheesie showed a LOT of responsibility by riding on the side of the road very carefully.
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.
T- Rex HATES competing. She is very steady and deliberate with everything she does, and doesn't necessarily see the point in trying to be first. I love this backstroke picture that Brian took. Big Al has size going against her. It's pretty easy to beat a 60 pound 11 year old - the other girls were taller than me, but she is the opposite of T-Rex and is very competitive.
On the therapy front: The PT came to our house today because her new space won't be ready until next week. We showed her the Wii (the Wii fit specifically) and she became very excited. All of the girls play it, but it really shows me how Blondie balances her weight between both feet. Here all this time I though she was fairly even when she stood, but NOOOO she is a big fat cheater. So now if she wants to land her ski jump she has to push down hard on her left foot (very good strengthening for her). So we have silly Wii pictures (please ignore the crud in the background - I live a REAL life and no, I don't know why the dollhouse is on the rocking stool except that they can get to both sides, and sometimes they have earthquakes), as well as a video of her riding her bike.
We need to adjust the bike, but the new pedals are absolutely great. I only intended to have one of them put on, but Brian had both done. She is still on training wheels, and we do have her arm strapped on this time (she also rides with just one hand) but I can't take those extra wheels off until the Wii tells me she isn't cheating when she balances. Who knew $10.00 pedals would make all the difference in a child's independence.
lve problems that don't have answers yet.
lve problems that don't have answers yet.
Step 3: USE SLEEPY HAND to help hold on to the laces (with your regular hand) and pull tight - She is SO amazing.
Step 4: Repeat steps 1-3 again. 
Whew!
