A "Whole" New Therapy

       

       Way over my head & a little bit out there would best explain one therapy approach we have chosen to use with Andy even before birth.   Touch Energy (a version of Reiki) uses the approach that our body is constantly building new cells to repair damaged ones (similarly to how a cut on our hand heals itself).   Through the skilled hands (actually, no touch is even used) of his therapist, Andy receives routine treatments to encourage nerve development in his lower extremities, bladder & bowel nourishment, and routine health monitoring.   Amazingly, she ends diarrhea & constipation after a simple phone call.  

          While many may view this all natural, new approach as “out there”, I simply view it as if it helps Andy, I’m all about it!   Touch Energy / Light Energy often cause me to question scientific generalizations and what is “right” for my child.   In fact, many of the negative comments we received such as Andy having a club foot, being unable to move his legs, needing a shunt, etc, have been proven false.   Touch Energy has demanded me to put my faith in the unknown and in something I don’t totally understand.   Andy’s body is viewed as an ever-changing blueprint; through Touch Energy, our Faith in God, and the scientific world, we have a “whole” new view of life.    

Steps to Remember

       

       Unexpected moments are sometimes the ones we cherish the most.  May 19^th, 2012 will forever be one of those.   On a busy wedding day for his uncle and soon-to-be aunt, Andy gifted his family with six independent steps.  Wow!   What a true blessing to be the receiver of!

          Six steps have grown by leaps and bounds.   The holes in his jeans, shorts, and shoes have been plenty, but he continues to challenge all of his doctors by his refusal to be held back or slowed down.  

          This summer we were the lucky ones.   For a child who was not supposed to even move his legs, he is doing far more than that.   When faced with a bad day, it is moments like this one that we need to look back at and remember.   

Sun, Surf, and Summer

This summer's hot weather has enabled the boys to do what they do best... explore, construct, tackle, swim, ride, and play, play, play.   Here are some of the highlights.   

 

  

     

Ride, Andy, Ride

This summer Andy has had a great opportunity to take Equestrian Therapy, and he loves it!   As one of their youngest riders, Andy rides a pony weekly.   So far he's made friends with Rosey and Barnie.   He also has "Whoa!" and "Back-up Barnie!" down-pat.   

Equest therapy not only provides a "core" workout (because he has to concentrate on balancing the entire time), the movement of the horse mirrors that of a human when walking.   Andy's hips practice fluid walking throughout the lesson.   

Ride, Andy, Ride!

Don't Put Him in a Box - or Prescribed Preschool for that Matter

My Little Inventor

      It's hard to believe that Robby will be starting preschool this fall.   While a difficult decision for any parent to make, our choice of schools had double weight:  

1.  Robby has an endless quest for new knowledge, an innocent demand to be correct, and a constant need to be doing something.

2.  Andy's fabulous Early On instruction in physical therapy ends once he turns three (next year).  He has to receive instruction through a preschool setting (supposedly in our residential district).   

     Knowing this, we needed to weigh out all options for education to reduce the number of buildings (not to mention districts - potentially three counting mine) that we would have to utilize each day.  

     After much worry, questioning, prayer, and research, the choice was beyond  obvious.   Robby will become a BRONCO in the fall at Coopersville Schools, and Andy will follow the next year!     

      The welcoming tone for Robby's endless energy and acceptance of Andy's needs was beyond anything one can imagine.   So get ready preschool teachers, be sure to eat those Wheaties because we're headed your way!

 ***   As a means of informing other SB parents of our experiences and bringing a wider range of special needs acceptance, here is the longer, unfortunate story I had to endure that hopefully others won't.

It is unfortunate that some teachers/people are not willing to look at the positive potential in a special needs child.   While researching which school / district Andy would receive the best care in (you can choose anywhere b/c preschool is a paid program), our own residential district gave me a harsh reminder of how ignorant we as humans can sometimes be.   (Please note that I purposely didn't announce that I was also an educator in the phone interviews of all the schools.)  

Only as a follow-up to curriculum and class-size questions did I inform the preschool teacher that we had a second child, Andy, who would be attending preschool the following year.  Andy would also be receiving PT in their building.   While I inquired about the preschool teacher's experience with children with gross motor issues, classroom set-up, PT, etc, Andy was instantly labeled as a child who would need a "special service" other than the typical preschool events (true - once a week he would have PT with a therapist, but otherwise, nothing would be different) and would attend a totally separate program in a special needs classroom where the students mainly contain cognitive and speech issues (which infuriated me since Andy's vocab. is more impressive than most five year-olds).   While the preschool teacher's view may be accurate for some children, it definitely did not address Andy's LEGAL need for least restrictive environment, and she had not even met him.   She completely refused to address that 

*  he is above average in verbal / social skills

* has surpassed cognitive levels at this age and beyond

* has average fine motor skills for his age

* is evaluated every six months, etc.   

Her hyper-focus was on his gross motor issues, and how that would impact her classroom design (give me a break!).   Therefore, "he will be placed w/ a teacher and other students "like" him."   Like him?   Excuse me, no one is like him - just as every other student in your classroom is unique as well.   

Obviously, I could have battled her and legally one, but did I really want to place Andy in an environment that has already set his potential so low?   At the same time, did I really want Robby introduced to a program that allows such behavior to be pressed upon him - just because kids are different they are going to be separated from you.   I don't think so.   So, although we are supposed to send him to our own residential district, I refuse.   

As an educator (and human for that matter), I know you don't impose restrictions on students (especially those you have never met), you build them up to break through the restrictions that they have self-imposed so that they see their full potential and succeed.  

Thank-you Broncos for welcoming BOTH of my boys and not placing them in a "boxed" program.   We can't wait for fall and future adventures with you.   

  

Going Against the Grain

One Step at a Time

 If no one questioned another's way of thinking, would sufficient be okay?   

A control freak would probably best define or describe me - somehow challenging authority has always been an integral part of me, and usually it does come with logic and peaceful reassurance in the long run. When challenged with lack of control of Andy's SB, I steered this "need" towards his doctors and specialists (lucky them), and it has been extremely interesting to see how they handle it. After the first "ego blow" that someone might be questioning their all-knowing opinions, most have realized that Tom & I are truly looking out for Andy & Robby's best interests.

Place yourself in a tiny little cubical that the doctors refer to as an examining room.   Although a pediatric specialty, there is little to no color in the room and it lacks any type of toy what-so-ever.   Bored of waiting (even at the first appointment of the day) and done with the bag of toys you armed yourself with, Robby has created a new game of island hopping (jumping on and off of the examining table).  The "specialist" arrives and obviously hasn't reviewed your son's case folder.   Here is one example of dialogue that takes place as they attempt to tell you that Robby now needs a CPAP machine (a machine that blows air into your nose and face causing your lungs and air passage way to open).
 
"You really want to put a mask on him while he is awake? And, you realize our goal is to get him to fall asleep and stay asleep? And if he rips it off his face and flings it across the room, you really think he's going to let me put it back on? Have you ever met my son (even though he was in the same exam room as us)? No, his name is Robby - not Matt. Yes, he is four, but his strength, will-power, vocabulary, and stubbornness would put mine to shame. Yes, I realize that I am the parent, but somehow arguing for hours into the night, repeatedly throughout the night, does not seem like a logical way to support going to bed peacefully and sleeping through the night. Is this machine a necessity or are you just attempting the next thing on your list of ideas?  May I see his sleep study results?  Oh, that's okay, I don't need a paper copy right now, how about looking it up on the computer you have right here in the room.   Could you provide my pediatrician with an annotated version then please; I'll refer to her before we proceed."

 Needless to say after three different conversations, we will no longer be visiting this pulmonary specialist assistant, and Robby isn't wearing the gas mask CPAP device. Luckily his amazing pediatrician has requested a new specialist for him. We'll see where this one goes.

 I've also noticed that the doctors tend to lose all facial expression and tone when you question them. April brought warm weather and infections to our household. My 6th sinus infection since January, ear infections, sinus infections, and two UTI's for Andy found us in the doctor's office more than out of it. Andy's urologist deemed these infections as a sealed fate for cathing. Concerned that future UTI's would damage his bladder or kidney function, he thought cathing him would prevent such events from occurring. The only problem is that each time a catheter is used, it introduces bacteria that could start a UTI. So to get this straight, we are cathing Andy every 4 hours to prevent a UTI, but in doing so we are promoting a UTI every 4 hours in the process. Doesn't this seem idiotic? We thought so, so we aren't. We'll wait until Andy gets another infection if he ever does and reevaluate then.

 Too often I have listened to the doctors use generalizations about my kids: he'll grow out of his ear infections (he didn't), he won't have any lower leg movement (he does), he won't be able to bear weight or walk (no, he runs), he'll need to attend a special needs classroom (don't even get me started on that phone conversation which was completely against the law on their side to say), etc. In each case they have been wrong. Because of this I won't allow my kids to be grouped into a "typical" stereotype. We'll continue to go against the grain as much as necessary. Besides, being like everyone else would just be boring.

We're Playing Catch-up!!

Throughout the last several months my Blog has been completely confused by the Google e-mail changes that took place in my district; the end result is that I have blocked from posting during the transition.   While still not perfect, I'm trying to play Catch-up.   Here's a glimpse of what I need to write about (hopefully sooner than later)!   

*** Going Against the Grain - Questioning the Docs. Once Again
*** Don't Place him in a Box, or a Confined Classroom for that Matter
***Ride, Andy, Ride
*** Steps to Remember
*** Sun, Surf, and Summer

             

Making Strides

The unpredictability of Michigan weather has left the boys climbing the walls and screaming for Spring!   As outdoor lovers at heart, the two have loved the sled rides, filling the bird feeders, shoveling snow, watching for "Penny" - their "pet" wild turkey, and every other aspect of winter.   As for me, I'm ready for sunshine, warmth, and no more snowpants or boots!!!

Inside, though, they have expanded their imaginations to include new tricks including scaling the kitchen counter. 

And Moving Full Steam Ahead!