Conductive Education Journal, 2011
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Maddie's Journey Continues...
It's been several years since we attempted a session of Conductive Education, but we felt that this would be a perfect time for Madison.  She seems to be at a very pivotal point in her growth and development and I just can't wait to see how she progresses!  We are trying a new camp in Santa Rosa, CA.  We will be here for the month of July.  We will both attend camp from 8:30-2:00 everyday.   This camp is called "Boost Camp": 

http://boostcamp.org/

Click here to view video of Maddie at Boost Camp - "I can do anything I set my mind to..."

July 5, 2011
We've arrived! We are staying in an adorable little home in Santa Rosa - which is being rented to us by someone who is out of the country for the month.  A little odd living in someone else's home, but I really think it is going to work out well.
Maddie is in good spirits and seems to be excited about starting camp tomorrow.  I'm probably more anxious and nervous than she... 
We arrived this afternoon, got settled, went grocery shopping, and now Madison is sleeping quite peacefully in a sweet little room.  :-)  I think she is already missing her sister and daddy, but we will get to see them Friday.
I feel that God has truly blessed us by giving us this opportunity, and I am very grateful.
 
July 6, 2011 - Day One!
We survived Day One!!!  The day went incredibly well, and I'm so pleased with the program.  I'm not sure who is more tired - Maddie or me.  ;-)  Probably her - it only took her about 3 minutes to fall asleep for her nap! 
There are 9 kids in the program - all with a vast range of ability.  Madison was at the "head of the class" in many areas, and I think that made her very proud!
The thing I was surprised at the most was the amazing amount of volunteers that were there to help.  This made the room a bit hectic and noisy, but also very fun and motivating.  This first day was kind of disjointed and confusing, but Maddie could care less!  She did really great and was quite the charmer. 
The highlight of the day was when the conductor was helping Madison at the end of the day walk out the door to leave.  All of the volunteers ended up watching her in sweet silence, and Madison was so pleased with herself.  She kept looking around at her audience, saying "watch me please". 
I'm SO not sure what it going to come out of this adventure, but I am just so happy that the first day went so well.  On a selfish note...  Madison is so exhausted, I'm enjoying a lot of time by myself.  Either on this silly computer or....  believe it or not...  reading a book!!!  I'm a bit more homesick than I imagined.  Maddie and I are SO looking forward to seeing Derek and Savannah on Friday!
 

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Day 1:  Maddie flanked by some wonderful volunteers, Akemi and Taylor.  She is actually NOT following directions right here by putting her foot up on the ladder, she's just trying to charm these gals with her cuteness. 

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Day 1:  This picture doesn't look that significant, but this was IMPRESSIVE!  The conductor has the children taking these rods and putting them above their heads and behind their backs.  She tried to make it a bit more challenging for Madison and a few others by telling them to hold the rod with just their pointer finger and thumb.  I SO didn't think Madison could do this!!!  But she DID do it, quite well, for probably about 3 minutes.  I LOVE it when she proves me wrong.  :-)

July 7, 2011:  Day Two!
Today was a really great day.  Madison was so excited to go back to camp and was very happy to see her new friends.  She is definitely the social butterfly of the group!  The kids start their day on yoga mats, but it takes everyone quite some time to get settled, because the conductors walk each individual child from the door to their mats.  While Maddie waited today, she made her way around the room, sat down next to each child and said hello. 
Today was not without challenges, though.  Madison had her first major meltdown towards the end of the day when she was given a very challenging task.  She cried consistently for about 45 minutes, but worked through it and completed the task.  Knowing I usually just make things worse, I was able to leave the room while a volunteer worked with her. 
The conductors and I talked about goals for Madison today.  I told them I would like her to learn how to go from standing to the floor without crashing down (if you know Madison at all, you know what I am talking about!), and also I would like her to learn how to get from the floor to standing without grabbing on to anything.  And, of course, I'd also like them to work on independent walking with her.  These are very challenging goals for her, but I really feel like she is on the cusp of being able to do these things, and this might just be the boost she needs!
The interesting thing about Conductive Education, though, is that though there are always goals, the kids sometimes come out of it doing something else totally amazing that you didn't even think of!  So, I'm just excited to see what Madison's body ends up achieving through all of this hard work!
 
July 8, 2011:  Day Three!
I'll let the video below summarize our day.  :-)  I'm so proud!  This actually happened in the morning as they were getting Maddie to walk in for the day.  And to think...  we are only on Day Three!
Derek and Savannah came to visit for the weekend and met us at camp this afternoon.  SO nice to have them here, we miss this SOOOO much!
Oh, a quick cute thing that happened...  To stand up from sitting, the conductor is teaching the class to clasp their hands, put them between their legs and stand up from there.  The conductor, Mareeka, said (in her beautiful Hungarian accent!), "children, what is the first thing we do when we want to stand up?"  Maddie spoke up loudly and said, "PRAY!"  Mareeka laughed and told Madison that would be a great idea!  I then explained that Madison was referring to clasping her hands together, as that is what she does with her hands when she prays.  :-)
Another wonderful thing that happened today...  a 9 year old boy, Creighton, who can already walk independently, had a goal to be able to jump on his own by the end of camp.  Today, he jumped, all by himself!  He exclaimed, "I did it!  Did you see that dad?  I did it!!!"  His eyes were glistening with tears.  I felt so blessed to be a part of that moment.

Click here to watch Madison working her hardest to walk!

July 11-13, 2011:  Days 4-6!
Well...  these last three days have been pretty tough.  Madison is quite exhausted and has been doing a lot of crying.  However, she continues to work incredibly hard, and her will and strength are admirable.  I am very proud of her, and I pray that God continues to bless her with the strength she needs to achieve whatever she is able.
Basically, she has realized that camp is mostly just a lot of work.  And, really, that's mostly all it is.  I was expecting a few more fun and exciting activities incorporated throughout the day.  But even without the fun and games, she continues trying her very hardest.  Everybody at camp is absolutely wonderful, and the volunteers are making it very enjoyable for her.  There is a little downtime throughout the day, and she can usually get someone to do something fun with her at some point.  It was interesting today, though...  She finished her lunch and had some extra time to play.  She approached one of her favorite helpers and instead of asking the helper to play, she asked her to help her practice walking! 
The conductors are amazing.  They have really seemed to figured out Madison and are working so hard to help her.  Their absolute biggest concern is about how much Madison falls down.  You know, I think I got so used to it, I just stopped thinking and worrying about it.  But, really, the kid completely collapses to the ground at LEAST 50 times a day.  I'm realizing this not just because of camp, but because the house we are staying at has wooden floors.  WOW!  And now that it is on the forefront of my mind, I'm just shocked.  They strongly believe that Madison can change this.  They believe it is mostly habitual and that we need to break the habit immediately.  They explain to her very clearly everday, "Madison, you will not fall to the ground today.  You will do whatever you can to make sure you hold on to something if you feel like you are going to fall."  When she listens to them talk to her, it is almost like she is in a trance.  She takes them VERY seriously.  Since we started focusing on this, I've already seen a HUGE improvement.  I think we both just needed to be made aware of it.  She is very proud of herself now if she gets from point A to point B without falling.  Because of the falling, they have backed off on having her try walking completely independently.  They are mostly walking her  holding on to a hoola hoop, with someone else holding it on the outside.  This is still very close to independent walking, but she has something to grab on to if she is about to collapse, and is a bit safer...
The other theme of Madison's camp experience is "SLOW DOWN".  No matter how she is walking - holding on to a ring, holding someone's hand, holding on to a ladderback chair, in her walker - she takes two steps at a time and stops.  So our mantra has become "one, two, stop... one, two, stop..."  I go to bed with this reeling around in my head, and I think Madison does, too!  (She actually wakes up saying this, as she is trying to make her way to me first thing in the morning!) 
As for me, I'm just tired and lacking in patience.  It's hard being with this beautiful twitchy little girl 24/7 and I miss the rest of my family and home.  The conductor has me leave throughout the day for certain tasks, as Madison tends to work better on some things when I'm not around.  I take these dismissals with great joy.  :-) 
Well this twitchy little girl just woke up from her nap (YAY for naps!!!)  so I should get off this silly computer.    (I'm hearing at this very moment: "I'm walking, I'm walking, careful, 1, 2, stop, 1, 2, stop" - bless her sweet heart!)
 

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Above:  Each morning, the children are wrapped in sage.  Sage does an incredible job at relaxing the muscles.  However, Madison is the only child here with LOW muscle tone, and her muscles definitely DON'T need to be relaxed!   But, she has some significant tightness in her ankles, so we are just wrapping her ankles in sage...  I keep thinking how'd I'd like to wrap my whole body in sage right about now.  Oh, and the room smells so good...
BUT, as the children are wrapped, they are supposed to "relax" and listen to classical music.  OMG...  Madison?  Relaxed?  Classical music?  Today she got the giggles and I almost peed my pants!!!
In this picture, Madison is laying with Akemi, a most wonderful volunteer, who is doing an incredible job working with Madison.

July 14-18

It has been a whirlwind of Boost Camp and Kamp Keller!  Maddie's Conductive Education week ended quite well.  She hardly fussed at all towards the end of the week, and was so proud of herself and all of her new accomplishments.  And on Friday, we hit the road, and went to Gramma and Grampa's house for our annual "Kamp Keller". We were met in the driveway of their house with a "balloon parade" - big sister and cousins in toe, all celebrating Madison...   Oh, how good it feels to be loved...

The weekend was a happy whirlwind of four beautiful cousins loving each other and learning how to get along, a gramma and grampa who love deeply, park time with second cousins, fast food, slow food, carousels, and LOTS of messes.  It was beautiful craziness!

Maddie and I reluctantly left on Sunday afternoon, but were surprisingly happy to be back “home” at our little house in Santa Rosa.  We have found an interesting peacefulness in being here together.

Monday at Boost Camp went quite well.  After getting many breaks towards the end of last week, I was happy to be more involved again in Maddie’s therapy.  Of course, it helped that she was incredibly cooperative and happy.  It also helped that I found it in me to monitor her very every movement:  feet flat, arms straight, one-step-two-step-stop, pee the pants, change the pants, arms up, arms down, elbows straight, clasp the hands, stand tall, sit straight, but DON’T HELP TOO MUCH!!!  Oh, dear – the dreams I’m going to have tonight…  (And can you imagine what she must be dreaming about?!?)

 

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Above:  Enjoying sister and cousins at "Kamp Keller". 
From left, 2nd Cousin Cassidy, Savannah, Madison, and Sammy

July 19

Today went well.  However, I think Madison is a bit overwhelmed and exhausted at this point.  Her little body is going through SO much, and sometimes I think it is just too much too process.  She did pretty well today, but just lost it when we got “home”.  She needed a good cry and got a lot of her frustration out.  Then she fell fast asleep.  She has been VERY sassy with me lately, and while I understand her acting out, I need to remain consistent and focused with her discipline. 

As with every Conductive Education session that we have attended, the conductors eventually examine and think about her “equipment”.  The great brace-debate has already occurred, and I remain unconvinced on either side.  More on that later….   Today’s focus was on her walker.  She does not use her walker during camp.  She walks a variety of ways, with the least support possible.  But once she walks to the door to go home, she can get back into her walker.  Marika, Maddie’s main conductor, watched her intently today as she walked to the car in her walker.  She seemed shocked by the way she was walking.  She asked me if that was how Madison walks in her walker all the time.  I said, unfortunately yes, we have just been happy that she is upright and moving!  She explained to me (and I think I already knew this but didn’t want to admit it…) that Madison is not actually doing any walking, she is just dragging herself along.  She basically “walks” using the strength of her arms to keep her body upright, and the beautiful walking we saw earlier in the day with almost no support had completely vanished.  Marika was in NO way criticizing Madison, and said all of this in the most endearing way possible.  She is just trying to continue to figure Madison out and is frantically trying to understand what she can do to help this little girl with the eight very short days we have left here…  Eight days.  Wow.  Can’t wait to go home, but so sad that this help and support is going to come to an end.

SOOOOO….  Where does this leave us?  I have no idea.  I will continue to be proud that Madison is upright and moving, even if it is not pretty or proper.  However, this new perspective is an incredible wake up call that I will figure out what to do with at another time!

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Above:  Craft time!  Camp is a lot of work, but occasionally they find a way to squeeze in a little fun.  I love how straight she is sitting here.  :-)  She is working with a dear volunteer, also named Maddie!

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Above:  Matching!  Maddie and her new friend, Dia, showed up with matching sweatshirts.  They were so tickled that they were matching.

July 27

Only two more days of Boost Camp left…  So bittersweet.  As much as I wish we could stay, we are SO ready to go home and I think Maddie is DONE!  This poor kid is exhausted.  She had a rough start to this last week, but today ended up being wonderful.  There are no new crazy developments – just more of the same great stuff…  Maddie trying her hardest to walk, Maddie trying not to fall down, Maddie falling down, etc.  I feel that now she just needs time to process all that she has learned before she can go any further.

We went home last weekend to visit, and that was bittersweet, as well.  It was absolutely wonderful being home, but also somewhat challenging.  It was very eye opening in regard to what it will be like when we are home for good.  I think it is going to be very hard for Madison (and me!) to apply what she has learned here to her everyday life and our normal routine. 

However, the change in her WAS readily apparent.  She surprised Derek on Saturday morning, greeting him with a big hello after she walked down the hall (holding on to things).  It was the first time we have ever said good morning to her standing up!  She usually crawls down the hall and greets us while sitting on the floor.  Random, but so significant in our little life.  She then continued all the way through the living room, and to me in bed, never once with her knees on the ground crawling. 

And the exclamation of our friend’s dad who only sees Madison every couple of months was priceless.  We were having dinner, and Maddie got up and walked several steps completely independently into their kitchen.  “Did you just see that?  She walked!  She walked!  I didn’t know she could walk!  How did that happen?  She walked!”  J

So, we got back on Sunday eve again, and Monday and Tuesday were kind of tough for Madison.  She was a bit sassy, a bit onry, and ended both days with a terrible tantrum while walking to the car.  The conductors have been trying to brainstorm with me ways to motivate Madison, and everyone here has quickly realized it is quite hard to.  If she doesn’t want to do something, or if she is misbehaving, there are not too many things we can use to motivate (i.e. bribe) her with.  We have been dealing with this for many years now!  Judit, one of the conductors had a keen observation.  She feels that Madison is a very creative child.  Sometimes creative children can be very hard to motivate.  And since Madison does not have many ways to express her creativity, that could be compounding her frustration.  Wow!  That was a big “aha” moment for me.  So, besides gaining a new understanding and perspective of my child, it also motivates me to pursue other avenues for her.  What can we do with music/dance/art in her life to make her a happier person?  I know she absolutely LOVES all of those things – it has just been hard to integrate that into her life.  “Typical” creative outlets make her very frustrated because she can’t do them quite right, but what can we do to successfully and happily bring out the creativity in Madison?!?  Please let me know when you come up with the answer!

I’ve created a fun video with highlights of Madison’s time here, but I’m having trouble uploading it anywhere – apparently I am violating some copyright laws because of my background music.  Hmmm…  will work on that tomorrow.  J

 

July 29

Last day of camp - absolutely wonderful!  There was an adorable graduation ceremony, and Madison was just shining.  She is so proud of herself!  To see clips of the ceremony, click below:

Graduation Ceremony Video

This last day was very bittersweet.  We are so ready to go home, but it is hard to see something so wonderful come to an end.  Madison has done such an amazing job and has worked incredibly hard.  I worry about how she is going to apply all of her new skills back home and I know it is going to be a tough transition for her.  I hope we can help guide her through this transition and help her figure out her new body in her old world.

 

The people at Boost Camp are just amazing and I feel so grateful that we have found such a great program that is not too far away.  There are some beautiful children in the program that were incredibly inspirational.  We will for surely participate again next summer, and I think I'm already looking forward to it!

Go, Maddie, Go!