I am sitting in a hotel room in Peoria, Arizona, experiencing my first Monsoon and watching an amazing lightning/wind/dust storm while Madison is soundly asleep next to me after a week of intense therapy. I will always marvel at the situations I wind up in because of this little wonder.
Before I explain this week of therapy, I have to reflect back and figure out what brought us here....
It’s been a tough couple of years. My Facebook posts might not reflect that, as I do tend to paint with a very positive brush!
The last intensive therapy I did with Madison was in Texas
two years ago. It was an AMAZING
experience. Madison did such incredible
things, and we still felt so much hope, excitement, and potential. Madison was walking entire city blocks unassisted. If she fell down, she got right back up again
and continued walking. We have the most
amazing videos of this time… http://madisongustafson.blogspot.com/2014/07/madison-is-super-star.html
Then we got home.
It was a tough year.
Madison was frustrated and unmotivated.
We couldn’t reinforce anything we learned in Texas. She got sick. We could never figure out why, but she threw
up all the time and our focus transferred to that. We could no longer fret about her walking,
talking, and standing when we were dealing with daily vomiting. The doctors had no idea what was happening
and could only say it must be related to her so-called “Cerebral Palsy”.
We saw a nutritionist who said Madison’s diet was fine. Lol. I
knew it was not, but was eager to accept that particular opinion. We sought after an “alternative” nutritionist. She was (is) amazing, but I will never feel like
we can live up to her expectations. (6-8
supplements a day, no sugar, all vegetable/lean protein diet.) The only way we can get supplements in
Madison’s body is through chocolate pudding.
For some reason, the nutritionist doesn’t like that… ;-) Though
we will never do what this amazing nutritionist expects, we try VERY hard and Madison
is no longer throwing up every day. That
is a good thing.
And then Madison grew.
A LOT. And then she grew some more. She grew so much she could no longer
walk or stand. She just can't figure
out how to balance this new, very long body.
She has finally realized that the falls hurt. She gave up on walking, just like those
stupid doctors said she would.
And then there were the "seizures"... That's just a whole other story...
So through severe behavior
issues, HORMONES, incredible growth, medical issues, poor nutrition, sketchy educational experiences, and a plethora of other
things, we have meddled through the last few years.
We didn’t think we had the funds to afford anymore “intensive”
therapy, and had become skeptical of the long term benefits of all the therapy
we had been providing Madison over the last ten years.
However… Some dear
friends of ours had been researching alternative therapies, and discovered an
incredibly affordable “movement specialist” in Arizona. We had exposed Madison to a similar type of
therapy many years ago, and it was amazing. (http://kerigustafson.tripod.com/id28.html) But it was SOOO expensive.
$150/hour expensive. We drove to the Bay Area for over a year and paid SO much money. Madison experienced a few vague, though significant results, but not enough to warrant the continued travel and expense. With all of this experience behind us, it was very motivating to think about this therapist in Arizona who made it her life’s work to make this type therapy affordable. Affordable, as in $500 for an entire week of therapy. How could we not try it?
http://www.movementlesson.com/home.html
To go back to Madison's original website, click here: kerigustafson.tripod.com
http://www.movementlesson.com/home.html
It was a great week. This therapy is different. But it’s amazing. It is something that begins with no goals. (Which is CRAZY, because everything in Madison’s life is goal-oriented.) This amazing movement specialist, Michelle, did not want all of the history; she just wanted to begin to “work” on Madison. It is a very gentle therapy. Basically, it looked like Madison was getting a fantastic light message twice a day every day this week. It looks like it is passive, but once you understand it, you realize it is actually a lot of work.
So I watched. I watched Michelle's talented hands, and I watched Madison’s body with new eyes.
The first day, I watched Madison’s feet contort into crazy positions, as they always do. I saw her crash down from the therapy table to the floor in a way I am SO used to. I watched her play with Duplex legos in her very typical, disorganized way. (Slamming a few pieces together, ten more pieces dropping on the floor, and her not paying much attention to any of it…) I heard her tell me “hi” and “I love you” over 100 times within the first 15 minutes. (So sweet, I know, but….)
The last day (today), I watched Madison’s feet flat on the floor as she calmly built a 20 piece tower with the legos. I heard her tell me “hi” only once and “I love you” only two times. I saw a calmness in her body I haven’t ever really seen. When I helped her get ready for bed this evening, I felt her stand up for me like she hasn’t done in over a year. Something has definitely changed in this girl!
I met a beautiful mom from Washington DC who ended up moving to Arizona so she could study under Michelle because it is the only thing that is helping her daughter. I met a blind girl with CP whose family moved here from Hong Kong so she could receive this therapy. The fact that I drove all the way from California was like no big deal in this world.
Will it “stick”? Only time will tell. Madison's body was introduced to new ways of moving that her brain really liked. (Or perhaps I should say Madison's BRAIN was introduced to new ways of moving that her BODY really liked; I'm still trying to figure out how it all works!) I do believe her body will remember many of the things it learned this week. Have I seen all that has been accomplished this week? Probably not. I can’t wait to get back home into our regular environment and see how Madison’s body reacts and what she might be capable of now…
Are we done? Of course not. Can we afford to spend a week in Arizona every 6 months? Probably not. (But Michelle travels, and I might try to concoct a way to get her local a few times a year with other students!)
But one of the most valuable things this week has given us… Refreshed hope. It gave me beautiful time with Madison to remember how incredible she is. And it made me realize that we can NOT give up. She still has so much to learn and she is so incredibly capable. We still have time to prove those doctors wrong!
While Madison struggles with things most of us take for granted such as walking and talking, she has gifts many of us could only dream of. She lights up a room. She makes the most unlikely people smile with her charm. She makes friends WHEREVER she goes. (I do believe that Rosanne, the hotel manager, will now be a lifelong friend!) I am so grateful for this opportunity to look at Madison with fresh eyes and for being able to step back and remember HOW hard she has to work to do just about everything. I needed that. It has been so incredibly challenging living with and being mom to this frustrated little gal these last few years.
As we journey back home, I am excited. Sometimes it is hard to understand the path and plan that God has for us. I have been working on trusting that path even without always understanding it. We are in His good hands! We will begin this new school year (middle school for this girl!) with calmness and hope. I am so thankful.
While Madison struggles with things most of us take for granted such as walking and talking, she has gifts many of us could only dream of. She lights up a room. She makes the most unlikely people smile with her charm. She makes friends WHEREVER she goes. (I do believe that Rosanne, the hotel manager, will now be a lifelong friend!) I am so grateful for this opportunity to look at Madison with fresh eyes and for being able to step back and remember HOW hard she has to work to do just about everything. I needed that. It has been so incredibly challenging living with and being mom to this frustrated little gal these last few years.
As we journey back home, I am excited. Sometimes it is hard to understand the path and plan that God has for us. I have been working on trusting that path even without always understanding it. We are in His good hands! We will begin this new school year (middle school for this girl!) with calmness and hope. I am so thankful.
A good video explaining more about this therapy: http://www.movementlesson.com/exceptional-family-tv.html
Here are some pictures of Madison working with Michelle. They clicked. Michelle definitely "got" Madison. It was so fun to watch.
And between therapy, we had to entertain ourselves somehow...
Something Madison has never been able to tolerate before - a WHOLE movie. We had so much fun watching Finding Dory!
Maddie's new BFF Rosanne. <3
We found the trick to beating the Arizona heat. Malls! We walked around a lot of malls. This sweet gal gave Maddie a little makeover.
Maddie wiped out after her first day of Movement Lessons.
Day Two - We went to the zoo. In the middle of the desert. It was only 112 degrees. Not a great idea, but Maddie had SO much fun!
Visiting the aquarium.
Eating dinner with the sharks!
