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“Wait Gain” story of the Year

At first glance, this may appear to be your typical weight loss story.  Yes, Eric has lost sixty plus pounds, is stronger, faster and all around healthier but this is not about the weight, it is about the wait.  Yes, you read it correctly, this is the “wait gain story for the year.”photo-82

As Eric’s trainer, I would love to be able to take credit for his weight loss but he had actually lost the majority of his weight prior to starting at FITBuddies in 2011.  His parents get the credit for his weight loss and it happened where every trainer (or almost every trainer) will tell you that it is going to happen…in the kitchen.

If you have tried to make dietary changes, you know it can be tough; and if you have ever tried to change a habit or routine of an adult with Down Syndrome, you know that tough is an understatement  The resistance to change and the process it takes to implement something new (or take something away) leaves many parents straying far away from improving the health & wellness of their child with an intellectual disabilities.

Eric’s parents began in a very simple yet highly effective way.  They did not change a routine (ie. time at which Eric ate) and or the habit (how many servings he got – Eric loves his 2 servings) but instead they cut the portion sizes he was getting in half.  Eric still ate his two servings but they now equated one serving.

I have helped numerous families over the years start the process of implementing positive changes that will fit with both the child’s (or adult’s) needs and the parents.  I always stress that although this may take a long time, once the change sticks, you are done.

I have now been training teens and adults with developmental disabilities for almost ten years now.  I started FITBuddies’ at FIT in Los Altos in 2006 and at the time, I honestly had no idea how little research there was to support my efforts.  From day one of starting my program, I have led with and I guess you can say been “testing” 3 rules or assumptions that have formed from my health & wellness background as well as my work as a behavioral therapist for autism:

  1. Individuals with intellectual disabilities can and should learn the same exact things as everyone else
  2. Therefore, do not change what you teach, change how you teach it
  3. Do not teach individuals to exercise, teach them how to take ACTION

After six years of more or less ‘experimenting’ with my ACTION philosophy, I established BuddiesInACTION in an effort to teach other instructors my philosophy and to grow and expand our programs into other facilities creating greater access to professional health and wellness programs for a population often overlooked.

Two years ago, when I established BuddiesInACTION, I was confident that my ACTION philosophy would work on just about any individual with an intellectual disability and then Eric walked through the doors of FIT.

I will never forget meeting Eric for the first time.  I am not sure if I ever saw his face that day but all I know is that when I touched his cold, clammy hands, my heart sank.  His hands were lifeless, he had absolutely no muscle tone and walked head down with an incredibly slow shuffle.  He rarely spoke and when he did, it was barely audible.  Yes, he had already lost a significant amount of weight but he was far from really “living” a healthy life.

He then came to his first session and I placed one of my amazing volunteers with him so he would have 1/1 attention.  She grabbed my arm after touching him and whispered into my ear, “I don’t know about this one Jen, do you think we can help him??”

I responded, “I honestly don’t know but we sure are going to try.”

And I honestly didn’t know.  Eric was 25 years old with Down Syndrome and, for the most part, fit the same criteria as almost all the participants that I have worked with but was weaker and for lack of better terms, more life-less.  While I was unsure if we would be able to make significant progress, Eric began coming regularly and I began the same process as I do with all of my participants.

The beginning is the hardest.  It is difficult as an instructor, scary as a new client and often discouraging for the parents.  In the beginning, I am very strict in my intake process and by strict, I mean I remain adamant that absolutely no demands are placed on the participant until they are ready.

Now think about this for a minute.  As a parent, paying for a class, would you continue sending your child to a class where the instructor told you absolutely no demands were going to be placed on your child for an indefinite amount of time?  I have to educate (and sometimes beg and plead) to be flexible, extremely patient, and to trust in the “waiting phase…”

What are we waiting for?

We are waiting for a bit of Awareness, a surge of Confidence, and a sense of Independence.   During this process, I am learning everything I can about the individual and patiently waiting to build trust and a mutual respect.  I am looking for all Opportunities to make a connection with them and enter into their world.  As this begins to happen, I can then begin implementing what I want, Training and Nutrition components, into their program.  Although I run group programs, this is a very individualized process and as I begin implementing demands it is done in an individualized way.

The first 6 months of working with Eric, we rarely ever say his face.  His dad brought him week after week and slowly (and I mean slowly) Eric would walk from the car into FIT.  More often than not, his Dad would walk into FIT and Eric would keep walking right past the door.  He would occasionally give someone a hug but otherwise he rarely said a word and simply moaned and groaned throughout the hour.

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Our initial goal with participants is just to start moving.  They do not have to do what the rest of the group is doing, we just try to get some movement throughout the hour.  Slowly, over time, Eric began moving.  I now had a few tricks up my sleeve and knew some of the things Eric responded to:  this involved me singing Barney songs, doing the hula dance and lots of talk about ‘purple cake.’  He also loved being partnered with another FITBuddies participant.

For the next year, very little of Eric’s movement was independent.  It was hand over hand and always initiated by myself, a volunteer or his Dad but we were getting closer and closer to Eric participating for the entire hour.

During this time, I had to remind myself of the things that I so adamantly promote and enforce:

  • Celebrate every little success…and I mean, every little success
  • Keep pushing – they can and will learn the same things as every “typical” client but you must continue to teach in a way they can understand and absolutely MUST give it time.  You must be patient and WAIT

Even though I developed the program, rules, philosophies, etc, I still have to remind myself to practice what I preach as it if often difficult to not see major progress for over a year.  Eric was the ultimate test.  I celebrated, I pushed but I couldn’t help but feel frustrated and I couldn’t help but wonder if we really would progress as far as I have with my other participants.

Eric’s Dad then approached me at the end of one of our sessions and told me how excited he and his wife were to see the progress Eric was making at home.  He was starting to walk up and down the stairs comfortably; he no longer took the alternate route to walk around the dog but instead stepped over the dog with a new sense of balance; and his slow, steady shuffle began to turn into a stride with a bit of a bounce.  Now this is how we define success, it is not by the numbers on the scale.

I always joke that personal trainers are the best teachers for individuals with special needs as by nature, we have somewhat ‘tough’ personalities.  Our job is to push and challenge people and in general, when you cross one milestone, we celebrate and move on to the next, continuously pushing and challenging.  This is exactly how our program is run.   We had hit some big milestones with Eric after a year or so and now it was time to continue pushing and time to wait a little more as the goals got bigger.

As we entered into year two, I began to feel like we hit a plateau and then I saw a video of Eric participating in his dance class at the College of Adaptive Arts.  He was all over the place and let’s just say he had hidden dance moves I never could have imagined. I showed the video to Eric and told him it was all over, I now knew for sure he could be challenged further and that he was just giving me a run for his money.

I pushed and Eric pushed back.  I challenged and Eric challenged me in every way possible.  We hugged, laughed, sang together, danced together and slowly but surely we connected in a way that made Eric comfortable.  His classes at CAA showed a passion in Eric that no one, including his parents had seem and we all watched in awe as Eric began to truly come to life.

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C = Confidence.  To me, and I think most of the parents, this is the most important component of our program.  Sure the exercise is great but nothing can compare to learning to do a push up and then looking next to you and seeing a “typical” client doing the same thing (or possibly something ‘less advanced’).  Watching the confidence and self-esteem build in my participants is by far the most rewarding aspect of the program for me.  It was great to see Eric begin to build a sense of confidence, a sense of being and a passion to move (this came at dance class…I still don’t think he has a passion for push ups!).

As soon as a participant ‘masters’ something, they become a leader.  They help instruct their peers and eventually become volunteers for our younger participants.  It is at this point that I have watched a complete transformation and a huge increase in confidence in many of our participants.  If you ask Spencer what his favorite part about FITBuddies is, he will tell you it is volunteering with the “younger kids.”  Jeremy loves to talk about his part time job as a personal trainer.

While we had seen significant progress in Eric, I wasn’t sure if he would get to the independent part or if we would be able to provide him with the opportunity to lead others.

Eric then added a day at Red Dot Fitness, a new BuddiesInACTION Affiliate and we watched Eric enter into the next level as everyone in the class, the level that we all waited and wondered if he would reach.  He was now the leader.  He showed up to FIT one day and next thing I knew he was counting and doing his movements independently.  He then jumped up and down as he tried to demonstrate to another participant how to do pull ups.

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His dad and I were both speechless, mostly because we were afraid that if we said something we would jinx it but two months later we continue to watch in awe at Eric’s progress.

So, what’s the “wait gain” guide to success?  It requires all the components of the ACTION philosophy and goes a little something like this:

Challenge.  Wait.  Celebrate!  Challenge.  Wait.  Celebrate!  Challenge.  Wait.  Celebrate!

But most importantly it involves the opportunity to lead.  This is the component that many special needs and inclusion programs leave out.

Right now we are in celebration mode and I know Eric will continue to progress just as the other participants in our program have continued to progress and Eric will have more and more opportunities to lead.

But what’s our next challenge?  What are we waiting for next?

I am waiting for the day when “wait gain” stories like Eric’s become “typical.”

Starting in the spring will we will be hosting workshops for instructors, teachers and families that want to learn how to implement the ACTION philosophy (and no, this is not just for personal training but can be applied in all teaching environments).  We are also working with gyms and facilities to offer BIA programs and services or simply to become ACTION aware.

How can YOU help today?

Share Eric’s story.  Spread the word and help create more awareness surrounding the capabilities of individuals with intellectual disabilities.

Teacher Isabella said it best after one of her dance sessions with Eric.  I went up to her afterwards and congratulated her on her success with Eric and she simply said,

“Jen, he has taught me so much more than I have taught him.”

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This s not about weight loss, it is about wait gain.

It is not about disabilities, it is about abilities.

And it is not about always leading and challenging individuals with special abilities; it is about understanding how they are capable of leading and challenging you.

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A special thanks to Eric’s parents, Isabella at CAA, all the staff at College of Adaptive Arts, and the staff and clients at FIT who provide so much support and encouragement to our participants.

Eric now participants in 3 BuddiesInACTION classes/week (two at FIT and one at Red Dot Fitness).  He dances 3 days a week in Isabella’s latizmo hip hop class.  Eric is an Ambassador and has walked over 800,000 steps in our Healthy Billion Challenge.  He is a part of BuddiesInACTION, Vidapost and the College of Adaptive Arts, the three programs that are a part of what Jen calls her “startup ironman.”