Another Journey Has Begun: Go Maddie Go!

I find myself sitting here in a random Starbucks in Plano, Texas, marveling about the journey that brought me here.

It all started 7 years ago when our family made the decision to make Madison’s therapy our number one priority.  We discovered a unique form of “alternative” therapy called “Conductive Education (CE)” which originated from Hungary and is designed for people with Cerebral Palsy and other motor disorders.  It seemed like the answer to our prayers.  It is a type of therapy that combines everything – physical therapy, speech therapy, and occupational therapy all into one program.  Up to this point, we had been taking Madison to each of these different therapies separately, with separate therapists at separate places and separate times, and it all seemed so disjointed.  

However, CE programs are hard to find and they are not cheap.  The hub for Conductive Education in the U.S. is at the Conductive Learning Center in Grand Rapids, Michigan.  So with the help of our incredibly generous family, friends, (and complete strangers!) we raised more than enough money to spend a month in Michigan as Madison participated in her first Conductive Education Summer Camp (Maddie's Fundraisers).  It was an INCREDIBLE experience, and we were very inspired as we realized Madison had so much potential to achieve many, many things.  It was in Michigan that she “cruised” for the first time.  She walked ten steps holding on to chairs.  I will never forget it.  We were at the Children’s Museum in Grand Rapids after about two weeks of therapy, and she just got up and did it like it was no big deal.  In Madison’s world, this was miraculous.  (Michigan Journal)

Though we loved Michigan, we realized it just wouldn’t be feasible to get ourselves to Michigan every summer.  We knew there were other places for CE in California, but we had made the decision to go to Michigan because that is the biggest school and the most well-known.  We knew Michigan would give us a true CE experience.  Because we had that experience and knew what to look for in a solid CE program, I felt comfortable pursuing other options in California.  So that fall, Madison and I packed our bags again and headed to San Jose, living there for a month as she did a program with “Beginning Steps to Independence.”  It was a much smaller program, Madison being only one of four students.   It is there we met an amazing conductor name Judit Soptei.  We actually lived in the same house as Judit, making this experience completely well-rounded, as Judit gently guided us through some of the challenges of Madison’s daily living needs.  It was through the generosity of the Roberts Family that we were able to live rent free.  God makes such good people.   (San Jose Journal)

We continued being inspired by Madison’s progress, so we did a summer camp again the next summer in San Jose.  (San Jose Journal #2)

Beginning Steps ended up closing their doors, so we had to pursue other options.  In the summer of 2011, Madison participated in “Boost Camp” a 4 week CE program in Santa Rosa, CA.  The progress she made that summer was the most incredible; it is where she really began to walk (at 7 years old!).  It was here that we met Marika Kalanges, a beautiful conductor who had an amazing connection with Madison.  (Boost Camp Journal)

We did Boost Camp one more time in 2012, and Madison did make some solid progress.  However, as Boost Camp was 100% parent participation, we encountered new challenges.  Madison’s behavior was incredibly challenging, and motivating her to participate was exhausting.  (Maddie and I have a solid, loving mom-daughter relationship, but a not-so-good therapist-student relationship!)   Marika wasn’t there that summer, as she had ended up moving to Texas and starting up her own CE Therapy center called Creating Footprints with Conductive Education (you will see my testimonial on her website!).  However, we did have a chance to visit her in 2013 when we were visiting our family in Texas; it turns out Marika lived just about 45 minutes away from Derek’s sister. 

Which brings us to this summer…  Derek’s sister ended up needing a house sitter (well, I asked her if we could do some housesitting!) and I asked Marika if she had any availability to work with Madison.  God put his hand in the pot, and now Madison is doing one-on-one therapy with Marika for three hours a day for the next 2 ½ weeks!

Which is WHY I am sitting in a random Starbucks in Plano, Texas.  I'm pretty fascinated that I'm sitting here; can you tell?!?   Michigan led us to San Jose.  San Jose to Santa Rosa.  Santa Rosa to Texas.  God has such an amazing plan for my little family!

We started using the term “Maddie’s Journey” when we started in Michigan, and I can’t help but marvel at her journey and the journey it has afforded me.  Not only has she received the most excellent therapy possible, I have been able to live in so many different places; giving me such random and awesome experiences, and allowing me to meet some of the most incredible people you can imagine.

This experience is extra special because Derek and Savannah are able to join us.  While I tote Madison back and forth to therapy every day, they are going to have their own adventures.  Today they were talking about going to the George Bush library in Dallas.  They are also planning to travel to West Monroe Louisiana and stalk the Duck Dynasty people. ;-)  While there, they plan to find a swamp to look for alligators. The whole family will have an adventure altogether next weekend and travel down to San Antonio to visit the country’s only Special-Needs Amusement park, spend a day at Sea World, and visit The Alamo (Derek’s request, of course!)

Meanwhile, we get to “house sit” in a pretty plush estate in a fancy suburb of Dallas, and I’m thinking “life is good”.   It’s fun to live fancy for a short time!

Throughout all of these experiences, I maintained very detailed journals marking every possible accomplishment that Madison achieved.  While those detailed-journaling days might be over, I do plan on writing a few updates while we are here in Texas.

We have learned to not always expect miracles from therapy, but we do have some solid goals for Madison this summer that I think are attainable.  First and foremost, Marika is going to see what she can do to help Madison decrease her falls.  As I’ve mentioned in several places before, she falls at least 100 times a day (I’m not exaggerating).  Incredibly, she always gets right back up and keeps trying.  It’s fascinating and inspiring, but it is really NOT good for her little body.  And as she continues to grow, the falls are harder, and have much more potential to cause injury/damage.  I recently had a neurologist tell me (when I inquired about what to do about all of the falling) to just not worry about it; she will eventually give up and just use her wheelchair.  He said that he is certain that she WILL give up some day, probably in the next few years.  Well, I don’t think he’s actually ever seen a kid just like Madison and I choose not to believe him.

We are also hoping Marika can help Madison use her walker efficiently and safely.  While independent walking is always our goal, there is a pretty huge stamina issue with Madison (it takes A LOT of energy for her to walk a short distance).  So for longer distances, a walker is quite appropriate.  However, she drives that thing like a bat out of he**, and it is very dangerous.  Plus, she just doesn’t like it.  She’d rather walk/fall or crawl.  So we are hoping that Marika can improve Madison’s “relationship” with her walker.  J 

There are a plethora of other issues – overall control, potty training, neatness while eating, etc. – that Marika is working on.  But, it IS only 2 ½ weeks, and as I said we do not expect miracles.  We are actually mostly looking to get knowledge – Marika is a very keen observer when it comes to Madison – and we hope to go home with new ideas, mindsets, and probably a whole lot of inspiration from this experience.

Madison has developed quite a fan-club, and all of your thoughts, prayers, and well-wishes are much appreciated!  Any comments shared here or on Facebook will be read directly to her!  We would like to extend a big-huge thank you to the Risenhoover Family for letting us "house-sit" (AKA staying-in-their-beautiful-home-for-free.)  We would not be here without their generosity...

Maddie's Journey began 7 years ago when we flew to Michigan.

And it continues today...  On our way to Dallas for her next adventure!

If you are wondering where Maddie's original website went, click here:  

Maddie's Journey, Part One
The change in technology since I've started "blogging" about Madison is fascinating.  I still love her old site, but this new way of blogging is MUCH easier!!!