Happy World Down Syndrome Day and Happy Birthday…

To one of the very special and unique individuals who continues to teach, motivate and inspire me on a continuous basis.

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Jeremy is a natural teacher.  After several years of being a participant of our FITBuddies program at FIT, Jeremy became a volunteer and a leader to other participants.  Watching him in action with other participants has probably taught me more than I have taught him.  He is gentle yet firm when needed, fun and goofy at the appropriate times and most importantly respectful of all participants needs and behaviors.  We see and experience a lot at FITBuddies and Jeremy takes everything in stride.  And when things get out of hand or he senses that one of the younger participants is causing me to pull my hair out, he provides a gentle reminder such as, “Jen, they are just kids and at one point I was a kid like them too that needed a little direction.”

I can’t help but smile with each reminder.

A few weeks ago, Jeremy provided me with another gentle reminder that I feel is important to share. We had some 1/1 time as we were going for a short walk at the beginning of the session and I was talking to Jeremy about the possibility of moving on to to another group at FIT, a “typical” group. We discussed the various opportunities and I told him it was 100% his decision and he quickly responded,

“I am a very special person and I would like to stay with very special people.”

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Once again, Jeremy stopped me in my tracks.

My goal has always been to continuously challenge each participant and provide endless opportunities for them to grow.  I deliberately developed group training for teens and adults with intellectual disabilities so that they have access to the exact same health & wellness services as the rest of us in a fun, safe environment that caters to their individual needs:  we do not change WHAT is taught, we simply change HOW we teach.  And while I firmly believe in inclusive services, I also firmly believe in the importance of exclusive services – services that are 100% focused on one population or group.  Jeremy’s comment was a gentle reminder of why such services are so important.

Here is the reality:  At FITBuddies, Jeremy is a leader, a teacher, and a motivator.  If Jeremy moved into another group, he would need constant modifications made on things being taught and most likely have an aide or 1/1 support.  If Jeremy remains in FITBuddies, he can continue to be challenged but can do so independently and at his own pace.  Jeremy is 29 with Down Syndrome and his independence is very important to him.

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On World Down Syndrome Day my message is for parents and instructors of those with special needs providing the same gentle reminder that Jeremy provided me:  special people deserve special programs.

I am not a parent of a child with Down Syndrome or Autism.  I am simply a professional who has been an ABA therapist, an aide, a teacher and an instructor to your children for over 12 years now.  I have had the privilege of working with teens and adults, such as Jeremy, who have molded and shaped our programs as the leaders.

In the past couple years, I have watched parents fight long and hard for inclusive services and I fully support you and your efforts but I also strongly encourage you to continue fighting both fights. Fight for more services and programs that include and challenge your child but fight just as hard for the services that specifically cater to your child’s needs and make your child the challenger (ie. the leader) because both are equally important.

When I teach the ACTION philosophy, I make it very clear to all instructors to never change WHAT they teach but instead change HOW you teach it.  The average special needs services DO need to change WHAT they are teaching as many are not providing your child with access to the same content and curriculum as every other child.  Yes, these services need to be updated but they do not all need to be eliminated.

My goal, as a provider, is not that every child participates in inclusive services; my goal is that your child has the opportunity to CHOOSE between inclusive OR exclusive services.

Jeremy provided us all with the that it is not about inclusion vs. exclusion but about being provided with the opportunity to choose:  the opportunity to choose which services and programs best fit his wants and needs.

Thank you and Happy Birthday to Jeremy!

To learn more about our programs, visit us at http://www.buddiesinaction.com

Participant Spotlight: Eric’s 5k Run/Walk

In December, we highlighted Eric and the progress he has made the past three years (if you missed his story, you can read it here).  One month later, Eric continues to shock, inspire and motivate us.

As most of you know, Eric has been a participant in A Healthy Billion’s walking challenge.  He has participated in a number of 5k’s the last year but has always kept to walking.  The only time we would see Eric run is out of class on Tuesday and Thursdays at FITbuddies!  This past Sunday, Eric and his Dad participated in the Super Guadalupe River Run.  Below is a description of the race from Eric’s Dad:

“Eric took part in the Super Guadalupe River Run this morning and Eric did the 5k walk in 54 minutes; which about half the distance Eric ran. Right from the start he took off running and ran almost to the first mile marker. Eric also ran most of the last mile to the finish line, where the crowd cheered him on. Eric walk/ran most of the race by himself (he was a good 100 yards ahead of me most of the time). When we met at the finish line he was so happy and kept saying “I won, I won”.”

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Congratulations Eric and we look forward to many more 5k Run/Walks!!

 

Holiday Challenge 2013/14

 

 

Join us in a holiday challenge for ALL abilities

Participate for a week or for the month (December 15th-January 15th).  We are happy to make modifications and suggestions to fit your ability so please send us a message at hello@buddiesinaction.com or leave a comment below.

We would love for you to share your progress along the way.  Email us or post a picture and be sure to include #BIAholidaychallenge
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Happy Holidays from all of us at BuddiesInACTION!

If you’re happy and you know it…

                                                “Then your face will surely show it……”                                                               

Enough Said.

Join us on Thursday, November 10th for a screening of the movie Happy.

FIT: 600 Fremont Ave. Los Altos, CA  94024     Time: 6:30pm

RSVP:  Jen@focusedtrainers.com

It’s the little things that make us happy…

In light of the upcoming screening of the movie Happy on Thursday, November 10th @ FIT,  I’ll be sharing a weekly “happy post”….observations, definitions and/or happy experiences.

Many are on a lifelong quest to find happiness – I believe instead of searching and hunting, we need to do more creating.

We often try to define what makes us happy – Not everything needs to be defined.  Sometimes a definition can be limiting – it places constrictions and restraints on something that has potential to constantly change.

Instead of searching and hunting, describing and defining – STOP – look in front of you, around you, maybe even behind you because as you are searching, hunting, describing and defining you could be missing out on some of the littlest things that can and would lead to that happy feeling you are on the hunt for.

FITBuddies’ is a group that constantly reminds me that it’s the little things that can make you happy.  They remind me that we all can have our own definition and ideas of what makes us happy but together we can create a entirely different kind of happy.

Kristen completes her warm up and cheers like she has won an olympic gold medal.

Jeremy says his goal is to make people happy every day at starbucks as he greets them at the door.

If you are really in need of a definition of happiness, come meet Spencer!

But it’s the little things, like Bowling on a Tuesday as a group, that make us all happy….

My Story

Everyone has a story.  There is a reason you are doing what you are doing; a reason you are so passionate about some topics and not others.  There are events and people that shape you and sometimes even change you.  There are those who enter your life and leave an imprint for a reason, a season or a lifetime.  All of these things and help create your story.

In the last month or two, I have had the privilege of hearing many stories.  In researching programs for individuals with intellectual disabilities, the story is often similar–more often than not, the owner or founder is often a parent, aunt/uncle, or close relative of an individual with special needs who is trying to build a program, website, product, etc. that may help their child, make things just a little simpler and/or create an opportunity for their child or family.

There are many individuals who have taken the time out of their busy schedules to help advise and instruct me on their area of expertise in relation to starting a business.  Every single one of them has a story. I have walked away from so many conversations overwhelmed–not only from the vast amount of information but from their eagerness and willingness to listen to the ins and outs of my program and provide as much guidance and information as possible.  My favorite part though is hearing their story–how they got started, why they do what they do, who/what inspired them and so on.

I am then asked how I got started and I recently realized how few know my story.  Many people have an idea of what I am trying to do but I am not talking about that story.  I’m talking about my story of how I got interested in this line of work…

I do not have a child, a niece or nephew, a cousin or an aunt or uncle with special needs.  I did not grow up surrounded and exposed to individuals with intellectual disabilities nor go to school with any individuals with Down Syndrome or Autism.  Maybe it started in a volunteer high school project with “Wild Man Willie” who used to whip around corners so fast in his wheel chair that he would topple over and then proceed to laugh his head off until someone came to help.  Or maybe it was the cute couple who would wheel themselves up next to each other and gaze into each other’s eyes as they played thumb wars.

My first real exposure to Autism was probably my sister’s boyfriend (now husband) who has a nephew with Autism and my sister entered into the world of behavioral therapy after he was diagnosed.  Growing up, I always worked but never had a “normal” job such as a hostess, waitress or barista.  My thought process was always to get jobs that would expose me to different areas I thought I might be interested in “when I grew up.”  And like many, this changed several times…

Age 11: I started babysitting…I’m pretty sure the life plan then was to be a stay at home mom and watch Oprah all day (now I haven’t entirely thrown this one out the door:).

Age 15-17: I was an assistant for oral surgeons (for the doctor I babysat for and a good family friend).  I passed instruments, cleaned and prepared trays for surgery and held chins when we put people to sleep (yes, if you lived in St. Louis and had your wisdom teeth out, I probably got a good laugh trying to get you to the recovery room)….at this point I wanted to either be a doctor or physician assistant.

I then went to Wisconsin for their physician assistant program.  I remember my advisor at orientation telling me it was next to impossible to get into their program with anything less than 10 years of work experience.  Okay fine, I’ll get back to work…

I was fortunate to be financially supported through school so it was not necessary for me to be concerned about how much I was paid but more about whether the job fit into my career path and what would give me more experience.  Shortly into my freshmen year, I became a personal care attendant for a woman, Karen, with a form of muscular dystrophy.  I was still interested in pursuing the PA program but now started to look into Nursing and Physical Therapy as well.

I then started to shadow PT’s and nurses in a few specialty areas at the UW hospital so see if this was another passing phase.  The PT I shadowed suggested I explore the world of personal training because I could still focus on those with injuries or special conditions and then decide if PT was the route for me.

Degree change number 2 = Kinesiology.  Now I had the option of going on to get a Masters in PT but in the meantime would focus on personal training.

I then started studying for my first personal training certificate and began Job #2 at Wisconsin.  I taught spinning classes and began personal training shortly after.  I then spent a summer in San Diego working at a fitness and weight loss camp.

My junior year I decided I needed 3 jobs.  I was able to schedule all my classes on two days so I would have more available hours to work.  I started my first behavioral therapy position working with two kids with autism.  Although I had some very challenging experiences, I loved it all!!  Working with Karen, training at the gym and working with my kids all taught me a little something different.

Degree switch #3 = Psychology.  I was one class away from a Kinesiology degree and was unable to minor in it but felt as though this would combine it all:  I took every science class I could and ended with all the basics in psychology that would help me explore the world of autism and special needs (a psychology major has come in handy more than I expected in the personal training world as well).

Each job I had helped me see the disconnect between the average individual joining a gym and the vast amount of individuals with chronic conditions who had such little access to professional resources.  All these experiences helped me lead me to where I am today but my job with Karen sticks out the most to me, taught me many invaluable lessons and inspired me to combine all my passions into one…

I still remember going for the interview with Karen.  I’m pretty sure the first question was “what is the key to life?”

Um, pretty sure I was 18 and clueless as to what the key to life was but luckily I think she answered before I had a chance to even stumble on anything–communication.  She explained that if you don’t have communication in a relationship (regardless of whether it’s work, play or personal), you’ve got nothing.

Next I was drilled on my body and health:  do you workout? Are you strong? Do you think you can lift 110-115 pound?  I was always active, played sports, went to the gym, but could I lift 115 pounds?  I weighed 115 and all I could think was there was no way I could lift my body weight.  Karen says I lied and said I could; I like to say I extended the truth!

And then Karen described a typical day.  An attendant arrives to her house at 4:30am to start the morning routine which consists of lifting her out of bed, getting her dressed and taking her swimming.  There is then a 1 hour noon and 5pm shift which consists of a bathroom break and meal (which later became my typical shift).  The next slot was the bedtime routine at 11pm.  The shifts ranged from about 1 hour to 4 hours.  Karen was only allotted so many hours of assistance per week by the county so she had to keep the shifts short (the pay and hours were low which is why she relied on college students for help).

You can’t work for Karen unless you can lift her and walk with her.  I’m pretty sure it was 500 degrees as I was instructed through my first lift but I was also so nervous I was shaking from head to toe.  I believe I was later labeled her sweatiest interviewee ever.

It wasn’t pretty but I got the job.

Can you imagine not being able to get out of bed on your own and relying on a college student to show up at 4:30am every morning?  Can you imagine what it would be like if the only times of day you were allowed to use the restroom were 5, 12, 5 and 11?  What if you couldn’t prepare your own food, couldn’t dress yourself or complete any of the activities of daily living many of us take for granted?  Would you have the strength and courage to live by yourself, hire your own help, train them yourself and rely entirely on a team of college students to get you through your day?

Needless to say, not only was I inspired on a daily basis by Karen and her constant strength to make all the above possible but I learned many lessons from her which led me to the basics of my ACTION programs:

A  = Awareness.  Karen taught me the definition of awareness.  I learned when to be aware of your surroundings and when to say “f-it” and fake blind to society, judgment and other discriminating life circumstances.  Being aware is knowing when to include and when seclusion is the more comfortable or preferred option.  While we had the best intentions inviting Karen to some of our college parties, we didn’t realize how uncomfortable she might feel as everyone is standing the whole time and she is sitting (it’s like being the really, really short one at the bar struggling to be included in conversations).  We became aware that dinner parties were much more comfortable for Karen.  It is knowing when it is important to slow down and worry about what others think of you and when you just have to keep running in full sprint and never look back. My friends would often see me sprinting down the streets of Madison after Karen as she traveled at what felt like lighting speed in her wheel chair.

C = Confidence.  Karen may be losing muscle in her body but the strength of her attitude could take anyone down.  She is fighting a constant battle to live independently and her confidence keeps her going every day.  It’s mind over matter.  If you don’t believe it yourself, it’s not going to happen.  You had to have the confidence and strength to lift Karen everyday in a variety of circumstances (public places, home, inaccessible buildings, etc).  Failure is NOT an option!!!  Karen believes in the impossible and is very honest and straight forward about the reality as well.  She helped me understand the everyday challenges she faces in her home, in society and so on. 

T = Training.  Karen did all her training on her own (she would instruct and have a fellow attendant show us the lift and routine).  I eventually began training other people to lift Karen as well.  I remember towards my senior year she kept telling me each incoming class was getting lazier and fatter and how scared she was she wouldn’t find enough attendants who could lift her.  Karen had a love and passion for the one thing she doesn’t have much of:  muscle.  “If you have it, use it, dammit!”  Karen inspired me to help others reach their full physical potential.  She made me realize how individuals with intellectual disabilities are perfectly capable of building muscle and therefore fall into the category of people who should be instructed to use it!  Every year Karen sits on the sidelines of the Wisconsin Ironman course and cheers athlete after athlete along.  She stays out until the course closes at midnight and screams for every last person to cross that finish line.  Everyday she inspires and reminds others to use what they were given.

I = Independence.  Although Karen’s life is far from independent, she is the definition of independent.  Karen taught me while many may focus on what you are incapable of; knock their socks off with what you are capable of.  Sometimes you have to stand out on a limb by yourself in order to make a change, highlight a need and/or create an opportunity.  By watching what Karen was capable of and listening to her honest explanations of life experiences, I learned more and more about the differences and similarities between those with physical limitation and those with intellectual limitations and what independence means for both.  At the end of the day, we’re all in the same boat, striving for the same basic goal:  to be as healthy and as independent as we possibly can.

O = Opportunity.  Karen taught me to create opportunities, not to sit around and wait for them to come knocking on my door.  Her favorite quote from Ghandi fills her home, email and voicemail “be the change you want to see in the world.”  Create opportunities and create change.  Because of Karen, I became more aware of the opportunity and need for professional exercise and nutrition programs for individuals with special needs.  Karen also helped me understand the importance of creating opportunities for both giving and receiving.  Karen was forced to constantly receive help from others; she needed opportunities to give back in order to feel like a part of the community.  We shouldn’t always be looking for ways to help but instead looking for ways and creating opportunities for people like Karen to help us.  The selfish are the not the ones who give for personal satisfaction; they are the ones who never allow others the personal satisfaction of giving to them.  This is one of the reasons we create opportunities for the buddies in our program to volunteer and give back at different community events.  We all deserve the opportunity to know what it feels like to both give and receive.

N = Nutrition.  Yes, Karen went to the pool every morning but her nutrition was really her only means to maintain a healthy weight.  If Karen gains weight, it not only affects her but those who lift her.  Karen’s diet consisted primarily of protein and vegetables with some fruit.  I still think of Karen every time I boil eggs–everything had to be timed perfectly and switched over to ice water promptly after boiling.  I was instructed how to hold my knife while cutting the vegetables, how to pull the herbs off the stems correctly, how presentation was the key to a good meal and so on.  I have to admit I had my days when the demands over something being cut wrong tested my patience, but I respected and admired Karen’s can control and discipline regarding her nutrition (although we did have a great time dining out when Karen decided to “splurge”…I especially loved sushi nights!)

So many lessons, so many memories and so many experiences I’ll never forget.  But Karen’s most important lesson still lies in the answer to her first interview question:  communication really was and is the key to life and especially the key to more people understanding individuals with both intellectual and physical disabilities.  The problem is that so many people in our society think communication is defined by talking (but that will have to be an entirely separate post)…

For now, thanks for reading!  While it’s a long one, I felt it was important to share my story of the person who definitely came into my life for a reason; and, while I only got to work with her for a four year season, she forever motivates and inspires me to take ACTION.

top photo = wine party at our apartment; above left = Karen picked out the colors and had my mom make her a warm wrap that was easy to wear during the Wisconsin winters; above right = who doesn’t love to dress up?  I think we tried on a couple different party dresses that night…just for fun 🙂

Day 3…

And back to FIT!  We started Day 3 with some nutrition work.  On Monday the buddies were asked to log a typical day of eating (breakfast, lunch and dinner).  On Day 3, we then identified the different foods at each meal and specifically focused on protein and vegetables and whether they were present in each of their meals.  They were challenged to add a vegetable to every meal and try to incorporate protein into their breakfast.  We then made our way to Andronico’s where they had to locate where all of the food on their list was in the grocery store.  We had a blast and I was very impressed with each participant.

I am constantly reminded that these young individuals are sponges!. They are, for the most part, excited and easily engaged and want to learn and hear what you have to say.  The problem is not enough people are saying it.  Not enough people are taking the time to provide these individuals with the tools and information they need to make healthy choices.  The parents do the best they can but lets be honest–who wants to hear it from your parents!!  It’s not the same.  We need more professionals taking ACTION. While they may be slower to learn, but they are more eager than the average person.  Trust me, as you can see, we have a blast learning each and every day….

Time to locate all the fruits and vegetables on our charts!

Our volunteers, once again, we’re a great help!

Joshua and his aide joined us today as well.

Back to FIT!!  Time for our “Travel Workout”:  Step 1 = Carry your backpack full of hiking gear (walk w/ 20lb weight vest)

Step 2 = Lift your suitcase off the ground and place it in the overhead compartment (dynamax med ball touch and reach)

Step 3 = Carry all of Mom’s bags after she goes shopping!! (Farmer’s Walk)

BuddiesInACTION is about taking the time to teach in a fun, practical and effective way.  There is not 1 lesson plan.  We figure out what is fun or interesting for each individual; we then translate it into something practical that they can understand (ie. lifting a suitcase over head) and after much repetition, it sticks.  Once it sticks, we know we have found an effective strategy for that individual.

Day 2…A Modified Lesson Plan

The plan for Day 2 was to hike to Deer Hollow Farm but because of the 95+ degree afternoon sun we cut the walk in half and instead incorporated some obstacles in the shade into the mix.  Sean led us to a small creek for a water break and to show the kids how to rub rocks together to make face paint.  The creek was probably 2 feet in diameter and was one of those creeks you just wanted to leap over–and that is exactly what my volunteers instinctively began to do.

My volunteers leaped from one side to the next.

My buddies all froze as if they had just encountered a fire bath.

Jeremy responded “oh that is for kids to do (in reference to them leaping back and forth).”  I then asked him if he had ever jumped over a creek and he said no.  Twenty six years old and here is a boy, I mean man, who can do box jumps, jump lunges, etc at the gym but has never jumped over a creek (and I’m talking about a very small one).

One by one they all admitted that they had never crossed a creek.  Change of plans!  Eric and I sat and watched as one by one the volunteers got creative and instructed each buddy how to safely jump to the other side (they could all pretty much step over it but didn’t understand the slight jump and weight shift needed to avoid the water).  Because it was so hot, we figured if we missed, it would be a relief to get a little wet!!

Jeremy flew over with no problem (of course, this is now something a “man” does).

Kristen stepped right into the water but was cheering and high fiving everyone on the other side as if she had cleared it by inches.

Spencer was very hesitant to take the leap but made it over the first time…although the second time, he enjoyed a little bit of the cold water on his shoes and shorts:)

Overall, we had another good day but we are definitely looking forward to spending some time in the grocery store and FIT tomorrow where we can enjoy the benefits of the AC!

I don’t think we made it 10 feet until I found a spot for them to do push ups.  I wish you could see Jeremy in the background who refused to do push ups saying “Jen, I came here to hike not do push ups!”  Fair enough, I guess!

Soooooo hot!!!  We were covered in sun screen, hats, sunglasses, etc.  Sean did a great job taking care of Eric today.

Water break!!  And then we headed to the creek for a little face painting and jumping.

We had a contest at the end to see who could balance the most bean bags and make it successfully around a circle of trees (in the shade of course:)

I think she only made it a few steps until she started laughing too hard but still impressive…

BuddiesInACTION is about learning to be independent; it’s about teaching these young adults the importance of exercise and making them aware of their food choices; but, it’s also about keeping the kid in all of us alive and jumping over creeks, playing in the dirt and balancing five bean bags on your head…

Day 1…

It has been awhile!  Some would say I have been slacking.  Many co-workers currently like to give me trouble for cutting my hours back at FIT to 3 days…”you have the life Jen.”  I could try to defend myself and tell you about my time at city hall, meetings throughout the peninsula and other boring logistics that have to with the “business” side of things, but the honest truth is I currently do feel like “I have the life.”  I took a leap, have given myself three months to do what I have been saying I wanted to do for a couple years and am focusing most of my attention on expanding FITBuddies and establishing BuddiesInACTION.

One of the fun parts (and hard parts) about FITBuddies and establishing different programs is that there is not a template for me to follow.  I try to compare a lot of other kids and teen fitness programs and then try to look at other special needs programs and mold the two together.  Today (and this week) was one of those DAY 1 kind of days where I really don’t know what to expect. This summer I decided to do “mini camps” instead of our regular sessions.  We are meeting 4 days in a row with a combination of nutrition and exercise/movement activities.  At the end of the day today, as I walked back in to FIT and many commented on how busy I was, all I could think about was that it flew by and that my volunteers are amazing…

While my co-workers may give me trouble for my schedule change, they are my number one supporters.  It’s the staff at FIT that constantly supports the progress and “new attempts” of my programs.  It’s the trainers and clients who train at the same time as us that support the chaos of my programs:)  But it is my volunteers (whose parents are all clients at FIT) who make a day like today successful…

Making our activity and food diaries.  First worksheet = “health profile” (height, weight, meal choices, water intake and number of hours of sleep (which by the way, they all win awards for getting a full 8 hours of sleep every single night)!

95 degrees and I don’t think I heard one person complain about our mile loop.  Each buddy had a volunteer paired up with them.

New best friends!  I’m not sure my volunteers will every be able to leave!  Mahayla even walked the mile with Sean and mom was able to take a back seat.

A quick 10 minute circuit.  Again the 1/1 attention fired everyone up and led to some good competition (especially from Kristen). We finished the day off with smiles and ready to bare the heat at Rancho tomorrow as we do a little hiking….

BuddiesInACTION is taking ACTION and this week we’ll be posting pics and updates on week 1 of summer camp.

PS.  Join the buddies on Thursday at the Los Altos Farmers Market at 4:30pm