Friday, January 14, 2011

Run Across America

Jeff Grabosky is about to head off on his run across American. He will be wearing a Baby Alex Foundation t-shirt for part of his run, and saying prayers for people in need. We have asked Jeff to say prayers for all premature babies and their families.

Although Erik and I are not religious people, we believe in the power of faith and collective human strength. When Alex was in the hospital, thanks to the efforts of our friends and friends of friends, hundreds of people we never met said prayers for Alex. We can never thank all of those people, and we will never even know their names. We can only pass on the strength they gave us to others who are suffering. If you know someone in need of prayers, please contact Jeff. He will be running with a rosary, and will have many, many hours over hundreds and hundreds of miles to say prayers.

And if you can help Jeff along his run, please contact him as well. He will be staying in his tent on nights when he doesn't have a friend to stay with along the route. And if you are a runner, join him for a few miles.

His website:

www.jeffrunsamerica.com

Thank you.

Monday, December 20, 2010

Values and Rules

Through Success Magazine, Erik and I have been introduced to two incredible parents. They are not new to the parenting scene, but we have only just discovered them. Linda and Richard Eyre are best selling authors, have an incredible website, give lectures around the world on parenting and are just the people we were looking for when we decided it was time to gain some order around teaching our children values. You hope as a parent you model what you want your kids to learn, but there is so much more that can be done to actually teach them about values and healthy living. I am currently reading Three Steps to a Strong Family and Teaching Your Children Values. You have to be ready to do some work, prepared to accept teeny tiny baby steps forward as progress, and then just have fun with it.

Taking the Eyre's advice, we have involved the kids in coming up with "family rules". When I have one of them alone, I do this work, because usually when they are together, the exercise quickly deteriorates. They have come up with so many great rules for our family and I have written them all down. At some point, I am going to stick them into 5 categories, and then post them on the wall. Things like, "when you are speaking no one else should speak and then they should say excuse me when they want to speak" from Izzy (say scuse me to speak and Ales no speak when Izzy speak) and "no spilling coffee or juice on purpose, only by accident" from Alex. Great rules.

We are also slowly working through the values section. After explaining what the value means, you give the kids examples and let them come up with some of their own so that they really get the concept. You can then role play. Izzy doesn't quite follow it all, but she tunes in every once in a while and it will surely sink in as she approaches her third birthday. A 3 year old is totally ready for these exercises! We have so far worked through honesty, courage and peacefulness. Alex loves hearing scenarios of what it means to be each of those, and how one can act to reinforce these values. We role play and he loves it.

The punishment for breaking the rules (or the peace of the house) are as follows, thank you Eyres: If you hurt someone else, you sit on the repenting bench (we aren't religious, but we kept the name) until you can explain exactly what it is you did wrong, apologize and then hug. We force the hug. Izzy only hugs on her own terms, so she ends up on the repenting bench at times when she won't let Alex hug her. Once she repents, they hug nicely. Forced hugs, like forcing a smile-feelings often follow actions, and it seems to be working so we will keep at it. If you are loud, you sit in the quiet chair until you quiet down. Unlike time out, which wasn't working very well for us, these two places for punishment really seem to be working.

We have also been sticking with the weekly family meetings where we discuss our week, our goals for the week, our activities and any problems, concerns, etc. The kids love these meetings. They also get their salary at these meetings from Daddy's piggy bank into theirs--one quarter for every star on their weekly start chart. You get a star for cleaning up your toys, your room, for being polite and nice, and using your left hand (even Izzy!).

Sounds like a lot of work, and it is, sort of. Once you get the hang of it, you can often do much of the work while doing something else. We tend to travel a lot with our kids, so we hold family discussions in the car, which is usually a very quiet place to talk. We run scenarios and explain values. My weekly star chart is usually the back of an envelop or other stationary which I quickly scribble the days of the week on, and I usually only remember to write a star onto the chart 2 or 3 times a week--you do the best you can. Taking the time in the beginning to get yourself organized will save lots of time later on.

Part of our reason for establishing these rules and values are obvious, to create a system of order and punishment that is fair, consistent and effective. But the second part of our effort has to do with how the rules and values engender self-esteem. Alex and Izzy feel part of the process, as integral people in the family, with responsibilities to uphold and jobs to do. They see the fruits of their labors, whether it is a happy parent or a quarter, and in the process they learn very adult concepts. Through this process, they are building self-esteem.

Ski Bums

This weekend, we got Alex and Izzy on skis for the first time. We had no idea how we were going to approach teaching them how to ski, something our parents never did for us but which we figured out how to do later in life. We just happened to be going by a ski store on our way to the farm this weekend, and we stopped in to see about buying skis, which are very expensive to rent. You hate to actually buy skis, kind of like buying ice skates, which you know your kids are going to use a few times and grow out of by the next season. Alex and Izzy are the same size now, so no chance of passing anything down to Iz next season.

We happened to be served by a very experienced snow instructor who explained the process of teaching 2-3 year olds how to ski. He recommended these skis called "Lucky Bums", which look like skis but attach gently to the child's snow boot. The most frustrating thing about skiing for most people is the ski boot, its awkwardness, the difficulty one finds when standing up in them, etc. Kids hate them. I witnessed my nephew have countless meltdowns within minutes of putting them during his first two seasons learning to ski. This instructor said that once the kids get used to wearing the Lucky Bums, and become comfortable walking and gliding around on almost flat surfaces, we could move on to the ski boot, next season. He said we should then let the kids use the actual ski boot like a snow boot and walk around in it all winter in the snow to get used to it. Once they like it, you can then finally get them on real skis.

I was worried about how the kids would react to being on skis, or maybe just worried about how I was going to feel if they had full blown temper tantrums and refused to try skiing. Erik and I recently started listening to Darren Hardy's Compound Effect (awesome book!). He explains how every goal you want to reach in life, whether to become a multi-millionaire or an elite athlete, takes baby steps, done consistently over time. And so, Erik and I reminded ourselves that our 2 and 3 year olds were not going to zip down the slopes this season, and we needed to do nothing but praise even their small efforts.

Izzy got on her skis first, and took off down the steep driveway with me holding onto her ski jacket. She loved it. She, like her mom, is an adrenaline junkie. We did that a few times and then I tried to interest her in a flat surface and she kicked off both skis and announced she was finished. She lasted about 5 minutes. So, when Alex got into his skis, I expected the same. His first ski session lasted about 15 minutes, and he seemed just fine with the fact that he was unstable on his feet and that we held both of his hands and gripped his waste and kind of pushed him on the flats. We then went sledding. After some indoor playtime, I tried to get Izzy to try again, but she wanted nothing to do with the skis. Alex said he would try. After an hour, without holding my hand or being held, but just walking and gliding around on the driveway, I had to switch off with Grandma because I needed lunch. We simply could not get him to come in. Eventually we bribed him with dessert. But, as soon as he had eaten, he was back out there, shuffling along like an old man, talking and singing and having a grand time. We seem to have found another sport he loves, which makes me very, very happy.

Wednesday, November 24, 2010

Botox Treatment

Yesterday, Alex received his first botox injection into the two most problematic muscles in his arm. The injections were painful, although he held his breath and only whimpered a little, and then the pain went away and he recovered. He was incredibly brave. We talked all morning about the process and when we arrived at the hospital, he was nervous but trying very hard to accept his fate. Alex's pediatric orthopedic surgeon is amazing and he is madly in love with her. She takes her time and explains everything she is doing to Alex so that there are no surprises. Alex's physical therapist was also there to examine the arm and agree with the surgeon on which muscles should be targeted.

They did a physical assessment of the arm before the treatments and then again about an hour later as he had a new cast made for his right arm. To our complete amazement, the botox had an almost immediate effect. By the time his new cast was made (which will restrict his right arm while the muscles in the left arm work and get stronger), his left arm demonstrated measurable changes. Alex has never been able to do a karate chop with lefty. But after the botox, which deadens the nerve endings of the muscles that were causing problems, he was able to do repeated karate chops. He was also able to cover his face with his hand and reach for things with less rigidity. I am excited to see what today brings, as it takes about 3 days for the nerves to completely die. Over the next three months, they will regenerate, and hopefully do so in a manner that will allow the hand and arm to function more properly. Even Alex noticed a difference last night when we were doing demos for Daddy.

Alex knows that he needs to work that left hand. He told me yesterday that it was so much work to make lefty do things. We have been talking a lot about work, and how important work is for getting where you want to go in life. The physical therapist touched on this as well. We'll see how working with the cast strengthens that left arm.

Tuesday, November 23, 2010

Building Self-Esteem

We had a pretty large setback with Alex when he attended school this fall. Whatever had been going on there, and then happened on that one day he didn't get his snack, it did some serious emotional damage. For weeks now we have been dealing with the repercussions. He repeated what he says his teacher told him, that he is a "bad boy", and still acts out every time he says it. He still talks about not getting his snack that day, and he often asks me if I will feed him even if he is "bad". Grrrrr. Apart from being furious at the school, not to mention the director's insensitive and extremely unprofessional response to our withdrawing the kids, I am really saddened. We have done everything we know how to build Alex's self-esteem, to tell him that even if he can't do something right now by himself, like putting on his shoes when his younger sister zips through putting on hers, that he will get it. We talk in very adult terms about the weakness in his left hand, how proud we are of him for working so hard to make it stronger, and how one day, it will be just as strong as righty.

After listening to an excellent CD from Success Magazine's November 2010 issue, I have been inspired to add to my repertoire of exercises in self-esteem building. Part of the discussion centered around having families and children write down goals, for the family, for the year, academically, in extra curricular events, and in character building. It goes on to discuss how introducing children to the idea of earning money for things they want helps build their sense of self-worth. I listened to some of the ideas on how to implement both parts and came up with our version for children age 2-3. This morning, in Mommy School, we practiced what will become our evening ritual: picking up our toys and straightening up our rooms to earn one quarter which the kids get to put into their piggy banks. I let the kids help me come up with the chores, and which toys they would like to pick up. Then we practiced. Izzy picks up blocks. Alex takes care of little toys and trucks. Even on the first try, they did it and were thrilled to plop their quarters into their piggy banks.

Recently, Alex has been writing to Santa because he really wants some Thomas the Train toys, specifically two he saw in a magazine that came in the mail. I told him that Santa usually bring one big toy, but rarely two. He just can't fit it all on the sleigh. After our exercise in cleaning up toys, Alex said to me, "Mom, I think Santa won't bring my toys this year." I asked him why, FEARFUL he was going to relive his school experience and say that he is a "bad boy", and to my astonishment, he said, "Because Santa wants me to earn the money to buy them myself." Wow. Mommy School was pretty much over after that. There was no better lesson I could teach today.

But Mommy School really never ends...so then I made Alex and Izzy police officers to police the problems we have in our house. Small children, small problems, I know, and this is a good lesson in healthy habit-building for when we have larger children and larger problems, I hope. Alex uses bad words on occasion when he is angry. So, Alex is now the Word Police. His job is to be sure no one says bad words in the house, and to also encourage good words. I help him think of good words we can substitute for bad words, and for compliments we can make to one another in the family to make the other members feel good. Izzy is the Potty Police. She is responsible for helping everyone go pee-pee in the potty. The kids take their jobs very seriously. Erik is actually the one who gave me this idea. He had a problem kid when he volunteered during business school with at-risk kids. This kid would eat and steal the snacks that the whole group was supposed to share. So, he made this teenager the Snack Police (maybe he called it something else, Snack Manager? I don't know.), and this kid took his job very seriously. He made sure no one, not even himself, took the snacks.

Monday, November 22, 2010

Food and Music Therapy

For children with physical disabilities, incorporating food and music into their therapy makes therapy a lot more fun, even something for them to look forward to. Alex does not like most therapy that we use to strengthen his arm and hand. But when we add food or music, or both, he forgets that he's in therapy. Creating hand turkeys last week was a lot of fun and good exercise for lefty. I mixed up the sugar cookie dough and allowed him to first knead it, then help me pat and roll it (all activities that use both hands) and of course, he got to eat some. We then placed lefty on the dough, which was tough. When he is excited or nervous, Alex makes a fist of lefty and it is hard to get him to relax to open it up. We were not able to trace over lefty, because he couldn't open it all the way and got frustrated when I encouraged him, so we just let lefty play feel and play with the dough. Any new texture on that left hand stimulates the hand. We traced righty. The next day, we used frosting and candy to decorate the turkeys while we sang a turkey song and continued to discuss Thanksgiving. Izzy had a blast and was very focused when I traced both of her hands.

This weekend, we discovered another therapeutic musical exercise. Alex has been working at the piano, guitar and drums for months, two activities that he naturally will use his left hand to perform. I don't know why lefty follows what righty is doing when it comes to music. Maybe that is something that could be studied more seriously--is it just because music is fun to do with both hands, because new areas of the brain are activated when it hears music, because the music relaxed the brain and muscles and allows the functioning muscles to overpower the tense muscles? I have no idea. When Alex is doing almost anything else, he can find a way not to use his left hand, but when it comes to music, his left hand is immediately involved. He could easily play the piano with one hand, because he is not yet reading music, but he never does, he always puts lefty up there and pounds away with lefty too. The same is true of the drums and the guitar (mostly air guitar which he sings along with, imitating his uncle who is an exceptional banjo player). Alex has asked Santa for a drum set, which Santa will surely bring (Costco, $19).

So, the exercise we discovered this weekend is the harmonica. His grandparents pulled an old one out of a drawer and Daddy showed Alex how to use it, and he immediately started playing it. He loves it. The unique point about the harmonica is that when you hold it to your mouth, both hands are turned toward your face. This is the exact movement that Alex has so much trouble with. His CP causes his hand to turn outward which makes it almost impossible to feed himself, draw, put on shoes, etc. Gripping the harmonica, with support from the strength of the right hand, helped the necessary muscles in the left hand take over so that he could turn his hand toward his face. It was amazing. Because he didn't realize he was doing "therapy", he was relaxed, enjoying his music, and therefore, his left hand was relaxed. His misbehaved left arm muscles relaxed and stopped fighting the muscles that make his hand turn inward.

Incidentally, cookie sales on Friday were excellent. Alex and Izzy had a blast selling their cookies, and soon a handful of the neighborhood kids were helping us too. We took the red wagon down the street with our sign and cookies on top and sold them to the road crew working on our road. In an hour we had sold out. We raised enough money to buy 3 large turkeys. We talked about the activity all weekend, further reinforcing the point of the exercise to the kids. An awesome activity!

Thursday, November 18, 2010

Cookies for Charity

Every year, Erik and I donate turkey dinners through Human Services and other avenues to families who can't afford them for Thanksgiving. This year, we have enlisted the help of our children. Alex is just at the age where he understands the idea of giving, and through this process we hope to begin instilling a life-long sense of charity. A recent Success Magazine article discussed the fact that it is never to early to teach children about money, saving and charity. I agree. Both children have piggy banks, which periodically will be converted into cash in their saving accounts. They understand it takes money to buy things, and that not everyone has the money they need to buy the things they want.

As part of the educational process, Alex, Izzy and I have been baking cookies to sell this weekend to raise money for our turkey dinners. Today at Grandma school we will bake more cookies, in the shape of our hands which we will then decorate like turkeys, all part of their schooling experience. As with every exercise, Alex will have to open his left hand completely while his right hand (with my guidance) helps him trace his left hand on the sugar cookie dough. This is a good lesson for anyone who has a child with CP that affects the hand. It's fun, not too taxing, and rewarding to watch the hand turn into a turkey.

I read a lesson plan online which we used this week to reinforce our idea of thankfulness and giving. We cut out shapes of leaves we found during our outdoor hikes, and then wrote on them what we are thankful for. We put up a thankful tree on our kitchen wall and as we think of thinks we are thankful for, we add them to the leaves on our tree. The children love this exercise and it has sparked many positive discussions. I think they will be prepared at Thanksgiving this year as our family goes around and talks about what each of us is thankful for.