We All Fall Down

Years ago, individuals with intellectual disabilities were often institutionalized.  They were confined because of their disabilities.

Slowly schools began to open their doors, unprepared, but open to the possibility.  Individuals became defined by their academic inabilities.

In the process of setting up more programs and creating more resources, we have become more aware of their abilities.  But we still have a long way to go before more realize their endless capabilities.

Be careful of the a bubble.   In the process of protecting, don’t forget the importance of exposure, of stepping outside the bubble.

Aim far beyond the ceiling.  In the process of teaching these special individuals, don’t stop because you have succeeded, celebrate and push to the next level.

If we set up all programs for individuals with intellectual disabilities so they never fail, never fall down…

Are we really teaching them how to succeed?  How to discover their own capabilities?

Increasing confidence in an individual with intellectual disability is learning the perfect combination of when to accept an ability and when to push and uncover more and more capabilities.  It is setting one up for success and teaching one that occasionally we all fall down.

C is for Confidence.  Buddies In ACTION

“Those Kind of People” vs. “the R Word”

As many know, last week I attended IHRSA.  I will write more about the conference later but for now I want to focus on a comment that made me think again about the terms used in referring to individuals with intellectual disabilities, a constant focus for many in the special needs community.

I will not set the scene or exactly explain the context of the conversation, but the comment was made that “we don’t have ‘those kind of people'” (referring to individuals with intellectual disabilities).  Initially my heart sank as my first thought was to cover Jeremy and his parent’s ears as if I was the protective parent.  I looked over to see their reaction and saw nothing but big smiles and reassuring nodding.  It was a reassuring nod that was saying “this is exactly why we are here.”

The big campaign these days is to end the use of the R word. To be completely honest I have mixed feelings about it.  I 100% support the efforts of the campaign but the reality is that there are tons of words and phrases we probably need to put an end to and, to some extent, the more we focus on those words alone, the more ammunition we give to people to use them in a derogatory way:  tell us we can’t do something or not to say something and we want to say and/or do it more.  We are given confirmation as to what will make another mad and have now confirmed a weak spot.

Kelle Hampton gives a great description from a parents perspective on the use of the R word.  I think it’s important to note, as she mentions, the definition of retardation: the act or result of delaying.  For a long time, mental retardation was a medical term used to describe intellectual disabilities.  Now it has been destroyed and now yes, we need to re-educate as many simply are not aware of the proper terms to use.  But will intellectual disabilities eventually be used and abused or autistic?  Will we start a campaign to end the A-word?  What if we start hearing that is so autistic or you are acting so autistic?

I think everyone will have slightly different opinions on all the above.  I cringed when I heard  “those kind of people”  and I  don’t really like the word “disabilities” (but I use it all the time).  Others can’t stand the use of the R word.  Jeremy’s family does not like to use the word Down because of the direction of the word alone.  So what is PC?  How do we refer to individuals who are special?

1) We ID them.  We are all INDIVIDUALS first.  Then use a word to DESCRIBE or DEFINE (ie. individual with Autism).  I think this is most important for parents, caregivers and professionals who work with individuals with special needs.  We are the only ones who really  need to know their exact “label” for treatment purposes.  Many would argue this but I think most important for the general population is #2…

2) Learn their name.  Expose yourself.  Get to know the individual.  I am often asked what is the right thing to say or how to act.  Many are very cautious, uneasy and almost scared to be around individuals or their parents for fear of saying the wrong thing.  You can’t go wrong with “Hi, my name is ______, what is yours? ”

Those kind of people can refer to all of us in some way; almost all of us have used the term retarded mostly without a thought about how offensive it is to others; and we all use the word disability, but as we strive to focus on ABILITY this term may disappear as well.  I think, in general, we spend too much time focusing on what the right term or label is and not enough time getting to know them.

I think if I were to start a campaign, it would be something along the lines of “lose the label, learn a name.”  Introduce yourself, expose yourself, get to know someone and the use of a correct term or label becomes less and less important…

BuddiesInACTION

3-21

Is Down Syndrome Awareness Day

Is Trisomy 21 (the most common form of Down Syndrome):  3 copies of the 21st chromosome

Is Jeremy’s Birthday (as well as my Dad’s and Ben’s, another FITBuddies’ participant)

Is it a coincidence that Jeremy was born on 3-21, a date that defines his condition, Trisomy 21, and a date that would eventually become Down Syndrome Awareness Day?  If I asked Jeremy this question, he would tell me he doesn’t believe in coincidences or “stuff just happening.”  He would say, “everything happens for a reason and God has a purpose for everything.”  I often walk away from my insightful conversations with Jeremy just smiling.  He can be the number 1 jokester but he is also very faithful, very serious and very confident in what he believes in.  Jeremy is the perfect role model in the Down Syndrome community. He gives new hope and confidence to parents of young children with Down Syndrome who have the same thoughts as Jeremy’s parents years ago “what will happen when he/she grows up?”

Here’s what happened…

-Jeremy became the first employee with special needs hired at Starbucks and started what is called “the Jeremy Project.”

-Jeremy attends the College of Adaptive Arts where he puts his acting skills to the test.  Jeremy would love to star in a movie some day!

-Jeremy is a very healthy individual.  He makes himself breakfast every morning (eggs and often bacon or sausage) and helps with lunches and dinners.  Snacking is not of interest to him and he could eat the same thing everyday and be perfectly content (which is why once you teach them the right things to eat, it’s super easy!!).  And of course, Jeremy loves his workouts and his time at FIT.

-Jeremy is a very social individual and loves all the groups he belongs to such as his church group.

-Jeremy has his own “man cave.”  His parents have converted their garage into a space just for Jeremy complete with a pool table, tv, and many other “man” games.  Jeremy uses his own money to purchase many of his new toys.

-Jeremy has dreams just like everyone else:  he’s always talked about living in his own apartment (although with his new room he may change his mind) and finding that someone special

When Jeremy’s parents received the diagnosis of 3-21 on 3-21 they had many of the same concerns as every other parent but they also remained grounded in what was really important.  I think the best thing that Jeremy’s parents did for him was let him be him.  From day 1, Jeremy’s parents accepted his weaknesses and focused on highlighting his strengths (they did not waste time focusing on areas he was falling behind in school, etc).

My hope for parents is that they are able to focus on the abilities of their child just like Jeremy’s parents, creating endless possibilities.  My hope for the rest of the world is that they wake up to these abilities so that parents no longer feel the need to address the dis-ability.

BuddiesInACTION

IHRSA turns 30 & Jeremy turns 26…

The International Health, Raquet & Sportsclub has now been in the fitness industry for thirty years.  This is the first year they will host a lecture pertaining to individuals with intellectual disabilities.  Do I dare say “what took so long”?  Nah, it’s not IHRSA’s fault.  There are a number of reasons I am excited to be speaking at IHRSA this year.  Many conversations I have had over the course of the last few weeks have also solidified why this is important to me (and some just made me laugh).  I thought I’d share a few…

1.  “When was the last time you did any public speaking?”

Does my sister’s wedding count?  What about the eulogy at both my Grandma and Grandpa’s funeral?  The response I got was “how many drinks did you have before your sister’s toast”?  I did do a lot of public speaking during high school (I sang a speech about my Dad in front of about 1000 people…now most know I love to sing and most also know I do not have a good singing voice:)  But that was 10 years ago.  Then I was told “did you think about starting with some smaller groups?”  I think I responded ‘ go big or go home’ to this one and then also mentioned my topic again because it will be awhile (and i’m hopeful of this) that the crowds come rushing in in the fitness world to hear about intellectual disabilities.  Thom and I joked yesterday we could be giving the lecture to each other today but regardless, it will be a great learning experience and I am excited to “get my feet wet” as I actually like to speak to large crowds (I say that now:)

2.  “An hour!?  You have to talk for an hour!??”

Are you people trying to make me nervous!??  But really, have you met me?  I love to talk.  Timing was actually the hardest part for me in preparing.  I just had no concept of how long an hour of talking really was and how much info. I needed.  The first thing I learned is that when you are talking about something you love and are so passionate about, you can talk all day!  I wasn’t worried about talking for an hour, I was worried about talking too long.  We are the last lecture of the day, so we’re aiming for a strong 40-45 minutes followed by Q & A and then off to happy hour!

3.  2 years ago after applying to IHRSA, “we’re sorry but your topic does not fit into our conference this year.”

This year IHRSA approached me to see if I was still interested in presenting.  I am excited and thankful for the opportunity and glad they changed their minds!  The inclusive fitness coalition has been trying to bridge the gap between the fitness and special needs communities and this is just one step in creating more awareness around those with intellectual disabilities.  We still have a long way to go but this is a step in the right direction.

4.  “IHRSA is a global trade association that attracts many gym owners of larger corporations and higher end facilities.  Don’t you think you should start smaller and focus on “community” gyms and facilities such as the Y?”

Nope.  I’m pretty sure if you asked Thom and Tracey five or six years ago if they thought a program like this would be a good fit for their gym they would have said no.  Part of what makes FITBuddies at FIT so special is the fact that you wouldn’t normally expect to see this population in a setting such as FIT that serves higher end clientele.  It’s now a part of the norm around there and this can and should be the case in other places.  IHRSA promotes community involvement and the importance of reaching out and expanding your community regardless of whether you are a high end facility or a large corporation- we fit in perfectly.  Convincing gym owners to consider this program may take awhile so why not start today.

5.  “What a great opportunity, but don’t you think you would be better off  and have more interest speaking at a special needs conference?”

Yes and No.  Of course I would have more interest and yes, I would like to speak at more special needs conferences as many parents still need to be taught the importance of promoting health and wellness programs for this population (and cut back on some of the after school educational tutors/programs, etc).  But the majority of parents and caregivers are and will be on board in a second.  They already know more programs like this are needed.  They fight this fight everyday.  I want to talk to people who may not otherwise be aware of such programs and those who may have an interest in the special needs field but don’t know where to start with their certifications and how to structure a program like this.  It is the professionals I need to start convincing, not the parents.  IHRSA is a great place to start if you ask me.

Thank you to IHRSA and thanks to everyone who helped prepare, listen and provide feedback for today.  And thanks for all those who asked the questions above!  Happy 30th to IHRSA, happy 26th to Jeremy and now it’s time to take a little ACTION

You Say It Best When You Say Nothing At All…

You have probably dealt with a stubborn or aggressive friend, co-worker or family member.  A person that, in the midst of a fight or heated debate, always has to have the last word.  The person that it is best to step down or walk away from:  Words will get you nowhere, SILENCE will.

Watch an individual with strong parenting skills.  They are not screaming and yelling at their child in the grocery store.  Instead, there is usually a moment of intense silence combined with “a look” (and often a few calm words) resulting in a now obedient child (usually).  The only thing you will get by joining your child in their screaming fest is many entertained onlookers.

Girls love to talk!  We are known for it.  We want to talk through and analyze every little thing (yes, i’m generalizing), but it is a huge difference between most females and males that often leads to further misunderstanding and arguments because “he doesn’t listen” or  “just doesn’t seem to care.”  Where do those endless conversations round and round in circles get you?  How about a quick, to the point conversation?

Talking too much is probably the number one mistake people make when working with individuals with Autism.  Too many words will result in an over-stimulated individual (if that wasn’t already the problem) paired with a very frustrated caregiver.  “Why aren’t they listening or responding to me!??”  Stop talking and see what happens.

A few comparisons (and a different perspective) that may help with those special people and special situations:  Examples when less words may equate to a better response:

An aggressive friend or co-worker = a child with autism who is over-stimulated

Your words will often only escalate their behaviors.  If they feel threatened by others or their surroundings (often the unknown), their negatives behaviors will increase.

A screaming child in the grocery store = a screaming child w/ autism in a grocery store

There are many similarities in parenting a child with Autism and a “typical” child (when it comes to breakdowns and tantrums).  You may have to use a little more force for a child with Autism (if they are a runner, etc) but in general, do not mimic their behaviors:  do not scream if they are screaming.  Restrain if you have to from dangerous situations but refrain from using too many words to re-direct.

The attention span of a guy dealing with a girl who wants to talk = the attention span of individual with Autism (yes, I just compared your boyfriend or spouse to an individual with Autism:)

You have 30 seconds to give your pitch.  Whether you are instructing, disciplining or just trying to carry on a conversation or activity, on average you have 30 seconds to a minute before all they hear is “blah, blah, blah.”  When working with individuals with Autism, be concise and move on or don’t be surprised when they have moved on to something else (usually a negative behavior).

In summary, it is important to know when to confront a situation with a conversation and when silence is your best option or tool.  Often times, you say it best when you say nothing at all, and it is extremely important when working with individuals with Autism to limit words spoken.

Buddies In ACTION is about creating AWARENESS.  Are you AWARE of the importance of silence in working with individuals with Autism?

 

Pick Your Battle…

-A breakdown or an unhealthy snack

-A full-blown tantrum in a restaurant or french fries, milkshakes, etc. etc.

-A quiet family dinner turned upside down or enough food consumed in one sitting to last for a week.

The food battle is a battle almost every parent has to tackle at some point along the line but for a parent of individuals with intellectual disabilities it can be a HUGE battle; a battle much bigger than just “you’re not leaving the table until you finish your green beans!”  Or for some parents of both special and ‘typical’ children, it’s not a battle at all because the parents choose not to pick that battle.

Working in the homes of individuals with Autism, I’ve seen a lot.  I’ve seen some very messy situations: houses torn upside down, sibling fights that no one would want to witness and parents breaking down after a feeling of complete helplessness. Would you really care who ate what at that point?  I doubt it.

It’s a vicious cycle.  It’s a cycle we can all relate to to some extent.  You get used to eating cookies, pastries, ice cream and donuts and you’re body begins to tell you that you NEED those items.  You begin to have craving after craving that you can’t seem to control.  The foods that cause us to feel the worst are usually the foods we crave the most…that is, until we stop eating them for a prolonged period of time.  Now try to communicate that concept to a child, a child who does not verbally communicate.

The battles then become vicious cycles.  You don’t get to pick anymore.  You WILL have a tantrum until the snickers is handed over.  The snickers (or whatever the food of choice may be) becomes a daily battle.

It’s not easy.  In fact, it’s very difficult.  Over the course of the next few weeks when I talk about NUTRITION, I’ll explain how a few of our Buddies have made changes.  It was a process.  It took time (a LONG time) but it’s possible.

I hope to help others tackle the NUTRITION battle because it is one well worth fighting and one that may change some of your other other battles and child’s behaviors permanently.

Buddies In ACTION wants to help improve the NUTRITION battle.

Mr. Independent

I would say there are two things that every parent hopes for their child:  good health and independence.  Of course, many parents have many other “plans” and hopes as well but I think it is safe to say these two are fairly consistent across the parenting board.  For a parent of an individual with special needs, it can be overwhelming and daunting to know what this may mean for not only your child but your own future.

Sometimes as a parent or caregiver, you have to take a step back.  Instead of always looking at the BIG picture or for BIG opportunities, look at how the small stuff can make BIG changes or a BIG impact.  That is exactly what the Teter family has done for Jeremy and the changes he has made are anything but SMALL.

Jeremy is 25 years old and is now working at Starbucks, cooking his own breakfast and other meals, working out with FITBuddies 2X/week (he has lost 25 pounds since he started due to both diet and exercise), going to the College of Adaptive Arts, and in the last year, learned how to ride a bike.  You can tell by the way Jeremy walks that his confidence is soaring and he truly has a feeling of independence. As he says, “I’m a grown man, doing man things!”

Of course there are still other things on his list, but overall, Jeremy feels as though he is “living the life.” HUGE opportunities did not come pounding on the Teter family’s door and these changes did not happen over night.  It was a process,  a process of small steps that led to a few more doors opening followed by huge progress and change.

This is part of what the monthly happy hours I am currently organizing are all about.  Sure, it’s a fundraiser but it’s much more than that.  There’s not a person who meets any of my FITBuddies’ participants who doesn’t enjoy getting to know them or love hanging out with them (or at least they all tell me that:); yet, there are far and few between (if any) who are calling these special individuals to hang out on a weekend (or weekday) night.  Yes, there are more and more ‘social’ programs for individuals with special needs but trust me, they can tell the difference between being treated as ‘special’ individuals and being treated just like everyone else.

It is simply a happy hour.  It is not a huge opportunity, but it is something small that can create a big feeling: a feeling of increased independence and inclusion.  Thank you to all who came to the first one and we hope many of you will join us in the future!

A few words from Jeremy, Mr. Independent, the Monday after he came up to the city for Happy Hour:

“Jen, that was the best city night ever.  I really think I could get use to nights out like that.  Do you think we could do that again?”

A few words from Jeremy’s parents (Bill and Mary Lynn Teter) regarding Jeremy’s night out:

Jen, the ‘attitude’ that ‘the’ Jeremy came home with that evening was priceless!
“I’m accepted”, “I have friends”, “They like me”, “I’m just a regular guy.”
Jeremy showed enough self-esteem for any six guys.  We can’t thank you
enough!  You provide a lot of ‘somethings’ for these young people that the
parents just can’t give.

Buddies In ACTION is not just about exercise and health; it’s about creating OPPORTUNITIES that increase INDEPENDENCE and INCLUSION.

Can You Do A Pull-Up?

Any Buddy can do a pull-up!!

I am constantly asked the question “what do you do with your kids?”  I do all the exercises that are efficient and effective but also the ones that everyone wants to do; the ones that increase confidence and cause those uncontrolled reactions of excitement as if you’ve just won a gold medal.  One such exercise is the pull-up.  There is just something about pulling yourself up over the bar for the first time, smiling on the other side, and then doing it over and over again.  It’s contagious. It’s motivating.  I’ve had numerous clients who have said “oh that’s not for me” or “I’ll never be able to do that” but after they witness client after client (and clients of all shapes, sizes and ages) do a pull up, they’re sold.  I want in!

FITBuddies are the same way.  The look around the gym and want to do everything everyone else is doing.  I want them to do everything everyone else is and I also know if taught properly, in stages, they CAN do it.  I do not change what I teach them versus what I teach my other clients to do.  I change HOW I teach them.  There’s a difference.  A very big difference.

You may be thinking yourself, “I can’t do a pull-up.”  As my FITBuddies would say, “if we can do it, so can you.”  There are TONS of ways to progress to a pull-up.  Whether you are doing pull ups from rings, a bar, jumping from a box, using bands, or an assisted machine, the feeling of accomplishment is the same:  get your chin over the bar and smile, you’ve reached the other side and trust me, someone in the gym just noticed you and was inspired by you.

At FITBuddies we are Training the Athlete in EveryBuddy.  We are inspiring others to achieve their athletic goals…because if we can do it, so can you!

 

Where Everybody Knows Your Name…

Making your way in the world today takes everything you’ve got.
Taking a break from all your worries, sure would help a lot.

Wouldn’t you like to get away?

Sometimes you want to go

Where everybody knows your name,
and they’re always glad you came.
You wanna be where you can see,
our troubles are all the same
You wanna be where everybody knows
Your name.

~Cheers Theme Song

For those who know me, you know I’m a walking juke box.  I have a song for everything.  For me, the theme song from cheers doesn’t describe a bar, it describes a gym, specifically FIT in Los Altos.  It’s a gym where at 6am you may have a handful of Silicon Valley entrepreneurs, VC partners and associates, working Moms and Crossfitters.  At 9am, you’ll see a wide variety of carpool moms, grandmas and grandpas.  At 12, look for a handful of trainers working out and a few of our favorite senior citizens in for their afternoon appointment.  At 3:30 the kids start flowing in along with FITBuddies and followed by the afterwork crowd and Barbell Club.

When you walk through the doors, you will be greeted with a smile (okay sometimes at 6am, the smile is forced:) but the trainers are always glad you came.

We may or may not know your job/status.  You can leave that and all your stresses and problems at the door if you choose.  It’s a place where you can come when you’d like to get away.

Tennis shoes.  Gym Shorts.  T-shirts.  Lulu’s.  You don’t have to dress to impress but we do ask that you do at least come dressed!  Gym attire has a way of making us all feel similar and that all our troubles are the same.

It’s a high-end facility, a large family, a community, a place where everybody knows your name and if they don’t, they’ll learn it soon.

It’s a place where confidence is fostered in everybody, especially FITBuddies members who are constantly looked at for their differences.  It’s a place where individuals with intellectual disabilities can leave all their disabilities at the door and simply focus on their abilities.  It’s a place where they feel accepted, equal and a part of something that’s not an isolated “special needs” program but a program that’s “just like everyone else.”

WE do pull ups just like everyone else…

WE workout with our parents…

WE do BURPEES too!!  And we are probably the only members of FIT who absolutely LOVE them:)

WE are part of a team…

WE are part of a Family…

WE are confident members of FIT and FITBuddies.

We all deserve to belong to a place where we can get away, where all our troubles are the same, where everyone knows our name.

FIT is exactly that for many people.  It’s a community that has done nothing but accept the FITBuddies’ program and participants.  It’s a large, inclusive family that I can confidently say I am proud to be a part of.

Take ACTION and CONFIDENTLY accept those of all abilities around you.

Are we too private?

Are you AWARE of how private the services offered to individuals with special needs are?  If the programs are run by the state, involved with the school system, etc. they are required by law to follow strict privacy rules.  In some ways, the laws are great and at the end of the day, everyone deserves to keep their personal information private if they so choose but are you AWARE of how this hinders the services provided to individuals with special needs or really any chronic condition?  Are you AWARE of the constant loopholes that service providers are constantly battling in order to get the “full story” and offer the best care for the individual?

A school keeps records.  A doctor has records.  I have records.  PT’s/OT’s, etc all have records on one child.  The school can’t see the doctor’s, the doctor can’t see the OT’s, etc.  We can all make calls to each service, send emails, etc and try to get the general story or update on each individual but if you’re working with 20 plus kids in a day, week or even a month, it just doesn’t happen.  It’s a constant game of phone tag, missed opportunities and so on.  We all have one goal:  improve the life of the child/adult and improve their condition, yet instead of truly working as a team, we’re separate and mostly because we have to be private.  What we’ve done is left it up to parents with special needs to tell their story over and over again and try to remember and record keep all services provided, updates, medications, etc. on their child.  All because “for privacy reasons, we can’t share that.”

Trust me, I get it and I understand that we needed to implement such privacy rules, but as a service provider, I also know how difficult this makes my job.  The inefficiency of it is what frustrates me the most.  We, as service providers, can spend months trying to get the full story/background on a child (and that’s just one child) and then trying to keep up-to-date with all the changes/progress or trouble areas is next to impossible to keep up with amongst each service being provided.  If you ask me, we spend way too much time battling privacy hurdles and then waste even more time trying to connect with the other providers when this is precious time lost on programming and working with the children/adults.

To parents of individuals with special needs or chronic illnesses/conditions, tell your story and allow your story to be told.  Help the team of individuals working with your child provide more efficient and effective care by not only allowing but encouraging communication across the board.  We need your permission to move forward and offer more efficient care.  I am glad that you have the option of remaining private, keeping your story your story if you so choose; but you should also be aware of how sometimes remaining private can hinder your story, your team, your plan of ACTION…

Take ACTION and create AWARENESS concerning privacy issues.