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 🙂