Happily Ever After

By Beth Fondell, Hammer Advocate, Volunteer & Former Board Member

Everybody likes a good story, right? A “happily ever after” tale has a special appeal.

As a fifth grader, it was the biography of Helen Keller that peaked my interest in the lives of people with disabilities. At the time, I had no idea this particular story would influence the emergence of my own.

In college I had an internship at a group home where six people with disabilities resided. Since I was a theater major, my charge was to support these individuals in developing an “act” they could perform at an upcoming community talent contest. Creating something with the quality that would allow us to be included in the show was a bit daunting, but I needed the credit and they wanted the chance to perform. So, we forged ahead.

Beth FondellFor ten weeks, these budding actors, with limited speech and unsteady gaits, rehearsed the same wordless skit … over and over and over again. I was weary of the repetition, but the enthusiasm of the “Prime Mime Players” kept me going. Adorned in costumes of white pancake make-up and black turtlenecks, we entered the show, performed our pantomime, and won second place. A joyful moment ensued, but success was fleeting.

Between the performance and the awards ceremony, our acting troupe removed their make-up. Without make-up on, the judges saw that these contestants had disabilities. The “Prime Mime Players” were sent on their way without a trophy because the judges assumed they were not actually members of the community. My anger at the injustice of this assumption provoked me to action.

The talent contest was sponsored by the city. Therefore, the “actors,” their direct support staff and I attended the next city council meeting. We explained what had happened, and the council members not only listened but helped fix the problem. They presented us with a trophy at a future meeting, and the local press was there to tell the “happily every after” story.

I later learned that what happened at that meeting was called advocacy. It is a fancy word that simply means telling a story to people who have the power to fix things. Since that night, advocating on behalf of children and adults with disabilities as well as their families has become a way of life for me. There are always stories to be told and things that need to be fixed.

Advocacy at the CapitolThe family story I currently tell to policymakers is about my niece, Eva, who lives with Cerebral Palsy. The decisions they make help our family eliminate obstacles that prevent Eva from having access to all things her non-disabled peers do. By itself, Eva’s story may only have a minor influence. But, when combined with all the stories other individuals and families tell about living with disability, an advocacy movement that policymakers cannot ignore is created.

Every individual with disabilities and his/her family supported by Hammer has a story to tell. Hammer has a growing number of advocacy volunteers, led by Terriann Matejcek, who are eager to support everyone in telling their story. “Happily ever after” outcomes occur for people with disabilities when we are prepared to share our stories. After all, even policymakers like a good story!

Bio Note: Beth Fondell has volunteered at Hammer for the past nine years. She presently serves on Hammer’s Public Affairs committee, following her tenure on the board of directors. Beth works as a training coordinator at the University of Minnesota’s Institute on Community Integration, a center focused on disability policy and services. She can be reached at: fond0030@umn.edu.     

How to Start an 80’s Glam-Rock Tribute Band

By Josh Hollenhorst, Billing Specialist

Music is important. This may seem like an obvious statement, but sometimes we need reminding. Music is one of a few things that has the power to move us, help us, or inspire us. Most importantly, music has the ability to bring people together. Music helps us celebrate good times and it gets us through bad times. Music molds our personalities and helps choose our friends. And, music is best when shared with someone else!

Music

I started working at Hammer’s Plymouth Colony program almost two years ago. I was entering an entirely new field of work and wasn’t quite sure what to expect. But, I found out (yet again) that no matter the situation, music always finds a way to be a part of it.

One of my first shifts had me going to the other side of town. I hadn’t yet met the individual I was driving, and as I pulled the van around to the front of the building, Andrew was ready to go. I introduced myself, as did he. We sat quietly for most of the ride. We had a short, uninvolved conversation, and as soon as we arrived, he hopped out of the van.

At the end of the evening, I went back to pick up Andrew. Unsure of radio station etiquette, I had quietly driven Andrew to his event.  However, on my way to pick him up, I was alone and naturally blasted KOOL108. When I arrived, Andrew jumped in, and before I had the time to turn the radio down, he started singing along. We spent that 25-minute drive back singing oldies and switching stations to find hair band songs we could jam to. Aside from loudly singing along, we talked about bands/songs we liked and concerts we had seen.  The music gave us a connection.

80s-hair-bands-numerous

Most, if not all, of our time spent together during my first year supporting Andrew was in the van. Aside from our other shared love of talking sports, we spent almost every drive talking about music or singing along to our favorite hair bands, oldies and TV theme songs.

As time went on, I had yet to think about other ways music could influence my work at Hammer. The first two years out of college I was a music teacher, and I have been teaching lesson for years. Somehow, it never occurred to me that I could bring music to my role as a Direct Support Professional. Luckily, Andrew heard that I was in a band and played some instruments. Thus, we began what we now call: “What Could Have Been the Greatest ‘80s Hair/Rock Tribute Band Ever.” When Andrew came to me asking if I could teach him guitar, a light went off in my head…What a perfect way to use my skills to make this shared connection we have more meaningful!

We had one minor problem. I had switched to a position at our central office and only worked at Plymouth Colony a few shifts each month. We talked about expectations – the hard work and practice that come with learning a new instrument and the personal responsibility he would need between lessons. He agreed and we set off on the magical voyage of making music!

Andrew on Guitar

Andrew and I had twelve lessons over six months (which is not very many). Sometimes we had lessons in back to back weeks. Other times there were multiple weeks between meetings. It was a tough schedule to work through, but Andrew had the desire for and love of music to make it work (not to mention the giant inspirational Winger poster). He was diligent with his practicing. He asked question upon question. He was genuinely excited every second of each lesson we had.  We worked hard in those dozen lessons. Andrew had never played an instrument in his life, and learning to play any instrument, especially your first, is not easy. Then again, when you are doing something you love, like music, it doesn’t seem so hard. It may have been challenging, but in a good way. Besides, Andrew and I had a whole lot of fun!

Saturday Morning Pancakes with Truman

By Elijah Berg, Direct Support Professional

One of my favorite memories from childhood was spending the weekend at my grandparents’ house. On Saturday mornings, I would awaken to the smell of my grandfather’s pancakes. My grandfather worked at Pillsbury for years, and he had a “secret” recipe for making his pancakes. They were so delicious! I couldn’t wait to get downstairs to eat them. When he made his pancakes, it made me feel special.

Pancakes 2Some things, like this memory, never go away, no matter how old you get. When I started working at Knollway a few years ago, I introduced two things to the four young men who call Knollway home. One was my dog, Truman, a 5-year-old Cocker Spaniel. He and the guys had an instant bond; they love hanging out each week. The other thing I introduced was the ritual of Saturday morning pancakes.

Now, every Saturday morning, the men can’t wait to get up and have me make pancakes with them. Like my grandfather did for me, we make them from scratch. I introduced a healthier version of the “secret” recipe for the men at Knollway, but they love the pancakes nonetheless. The guys all like them a little differently – with butter, peanut butter, or peanut butter and jelly. However, they always like them with syrup.

Here is the coveted recipe for the Saturday morning pancakes:

4 cups of Pillsbury Best whole wheat flour                                               

3 eggs

1 cup of sugar                                                                       

2 tablespoons melted butter

1 teaspoon salt

1 heaping tablespoon Baking Powder

2 cups milk + 2 tablespoons vinegar or 2 cups of buttermilk

Pancakes 4Mix all ingredients together except milk. Add milk slowly and add more or less if batter is too thick or thin (will depend on humidity). Mix into a batter that is easy to pour and mostly lump free. Pour onto hot (275 degrees) non-stick griddle or pan. Flip pancakes when bubbles form on top. Cook until golden brown. Serve with butter and syrup. Batter makes 12-15 good-sized pancakes.

I share this story because I feel it’s also a story of Hammer. Everyone at Hammer has always worked hard to celebrate the uniqueness of its people, both residents and staff members alike. At Hammer, anything we can bring to the people we serve that enhances them as individuals is welcomed and celebrated. I have always marveled at how everyone at Hammer – the residents, the staff members and the leadership – inspires each other to be the best we can be for those we serve.  For me, even though I have another full-time job during the week, I feel fortunate to be able to stay a part of this organization. The exceptional standards of service that I see here are truly remarkable. Watching how those standards translate into fun and joy for the men I work with keeps me coming back every week.

Pancakes 1Pancakes 3

The Danger of Routine

By Dan Pysno, Program Manager

We all have a routine. It makes life more predictable and less scary. It helps us feel organized. Generally, routine plays an important role for individuals at Hammer. It is also an integral part of the day to day work of our staff teams. Routine serves a purpose and we rely on it to instill a sense of comfort and stability. However, routine can also make us blind. It can make us less attentive and more complacent. As comforting as it feels, there is danger in routine.

A week ago I was browsing some favorite websites – I guess it’s my routine – I came across a story in the New York Times. It was about several dozen men with intellectual disabilities who worked for decades in a turkey processing plant in Iowa. The Times also produced a short documentary about their story called The Men of Atalissa. A resident of Atalissa who was interviewed in the documentary shared her thoughts that help set the tone for this blog:

Atalissa 2“Routine can be a dangerous thing for all of us — because we stop looking outside of our to-do list for the day. So things that are happening around us — sometimes we miss them because we just weren’t looking.”

These men had a routine that involved eviscerating turkeys for ten hours each day. The men lived in an old schoolhouse that was converted into a communal residence. To some extent, the men were members of their small community. They frequented the local convenience store and occasionally attended church. The citizens of Atalissa came to know them and even shared a dance with one or two at the saloon on Saturday nights. But, they did not know the men entirely. In 2009, a social worker responded to a concern from the sister of one of the men after learning he had just $80 in savings after decades of “turkey-plant toil.” Over the next few days this social worker would reveal what routine had kept hidden.

Atalissa 1

The men with disabilities had been working for over 30 years for no more than $65 in monthly pay. In addition to being exploited for their labor, the men were abused at their job-site, working so hard that many developed severe arthritis from the long, grueling hours at the turkey plant. Their home was infested with mice and cockroaches, and they slept on beds stained with mold. Those tasked with “caring” for these men had no formal training and were heavy-handed in their approach. The medical needs of the men had been neglected. One man, who was believed to have been deaf for years, learned he actually could hear. His only problem was wax build-up in his ears. The men had no connections whatsoever to Iowa’s social service system. They were deprived of choice and control over their lives.

The story of these men is an extreme example, but it is a powerful reminder that routine can be dangerous. Routine contributed to these men being abused, ignored and exploited for three decades. The owners of the turkey plant established a routine of using the men for cheap labor. The citizens of Atalissa had a routine of seeing the men at church and at the convenience store, a routine that prevented them from seeing what was really going on behind those schoolhouse doors. The men, blameless of course, were coerced into this horrible routine that became normal. If responsible members of the community or the so-called caregivers had challenged the routine they wound up perpetuating, perhaps these men would not have suffered for so long.

Dan and JanetAs a Program Manager at Hammer I know routine is helpful. However, after reading this story, I find myself challenging routine, both professionally and personally. This story has motivated me to pause and assess whether the way we do things at our apartment program is driven by routine and if that routine provides the best support to those we serve.

March is Developmental Disabilities Awareness Month. Perhaps the troubling story of the men of Atalissa will inspire you to be more aware of your own routine and what you see each day. You may find that someone needs your help, your advocacy or simply your friendship.

Living with Tourette Syndrome

By Brian Kelly, In-Home Program Manager

Tourette Syndrome (TS) is a neurological movement disorder that causes a person to have both motor and vocal tics. To me, it is what I got made fun of for when I was a kid (my head twitches, incessant blinking, the compulsion to count things until they were even numbers). Everyone around me wondered why I did such “weird” things. Fortunately, I was able to tell kids, “I have Tourette Syndrome.” But, that didn’t stop them from making fun of me.

Young BKMy parents made me talk to my elementary school classes at the beginning of each year to educate my classmates. I’m sure this was a carefully thought out strategy by them to avoid having their son get bullied. My mom hated it, but oh man, I can still see that look in my dad’s eyes when I would tell him what some kids would say. While talking to my classes helped with the teasing a little, it more importantly empowered me, as a kid, to own it and explain my Tourette Syndrome. Now, did that stop me from getting made fun of, getting into fights with said kids, having some really bad stretches of time as a child and adult? No, absolutely not. The thing it did do was show me how much the people around me cared for me and how much they were willing to support me.

I had an answer at the age of nine, but my idol didn’t have an answer until he was in his mid-20s. “Jim Eisenreich had a normal childhood and a loving family, but at age 6 he began to exhibit some strange symptoms. He had tics and jerks, and couldn’t quit blinking his eyes. His family accepted this behavior.”  Sounds like a carbon copy me before I was diagnosed. The problem for Jim was that when he was 6 years old, it was 1965. People did not know much about Tourette Syndrome. Jim wasn’t able to receive the type of support I got. That didn’t stop him from going on to play college baseball at St. Cloud State then entering the draft to play in the big leagues.

BK with JimAs a Little Leaguer with TS, I had an instant role model in Jim. Seeing that someone with TS could play the game I loved so much, at that high of a level, was exactly what I needed. I was glued to the television any time he was playing. When he hit a homerun in the 1993 World Series I may or may not have run around the house waving my shirt around like a helicopter! Then, when he hit another homer in the 1997 World Series and went on to win a ring, I was more mature. So, I celebrated more like a teenager with a hearty fist pump. Throughout the years, I’ve been able to connect with Jim through a few letters and video chats. I even got to introduce him at his annual golf tournament when I was in college. Jim is the man!

Jim’s influence led me straight to working with people with disabilities. I got a glimpse, albeit tiny, into what people we support go through. I sat on the other end of the table at my own IEP meetings. I had special accommodations throughout high school and college. I continue to made adaptations for myself as a 31 year old man. Working at Hammer means the world to me. If I can have a fraction of the influence on the people I support that Jim had on me, then I go home a happy man. It’s all about keeping it positive!!

BK with RobbieBK Fam

The Only Constant Is Change

By John Estrem, CEO

Change is a normal part of everyday life; however, 2014 is shaping up to be a year of particularly big change in our field. This is being driven by two large revisions that have been a long time coming – a new rate setting system and the new 245D waiver regulations.

Bruce Welcomes John Estrem

John Estrem (left) with Bruce Duffney, an individual we support

The rate setting system (called “Disability Waiver Rate System”) sets monetary rates for a waiver. This waiver rate is one way that a person with a disability pays for services and programming. In the past, these rates were essentially negotiated with the county. Starting January 1st, a statewide system was put in place to set all rates. Like any new large system, there will be a number of problems with it in these early days. Rates for individuals already receiving a waiver cannot change much in the next few years of this new system (this is called banding). It allows us time to work with the county and state to iron out the problems. The issue is more critical for someone getting their first waiver. We are working hard with ARRM to address any problems with the system.

The other big change deals with how we are licensed as a provider. It covers all regulations and procedures that go with a license. 245D is the title of the new law that structures our services (it was preceded by 245B). These new regulations change how we license our programs. There are a number of programming aspects that we must update or add in order to be in compliance with the law. You will see some changes in forms, procedures and training because of this.

John and Lisbeth

John Estrem and Lisbeth Vest Armstrong at the “ARRM Day at the Capitol”

Again, our work with ARRM and other providers is critical to helping us navigate these changes. The goal is to understand as much as possible upfront and get proactive with the compromises and solutions we present. As we work through this year of big changes in our field, we know there may be a few bumps in the road. We ask for your patience and teamwork. Our commitment at Hammer, as always, is to provide the highest quality services possible. I thank you all for your continued commitment to help the individuals we serve live life to the fullest.

Our Little Corner of France

by Fatma Sheekh, Direct Support Professional

Hidden away on the quiet corner of 12th and Nicollet Mall in Downtown Minneapolis is French Corner Bistro and Bakery. Most of us pass by without ever noticing the white poodle and the words “consider yourself Frenched” written on a red bubble. I was fortunate enough to come across this place while waiting for the 17D bus to arrive.

French Corner 2I had the pleasure of going to French Corner Bistro and Bakery, or as we like to call it, “the French Corner,” with some amazing folks from our Avana program. Since French food was new to them, they asked that I keep it “simple” and “edible.” I knew immediately that the French Corner would be the perfect place! The bistro has a captivating ability to teleport its customers to classical Paris, allowing them to take in the beauty and mystery that is France.

We parked and made our way to the French Corner. Since we had printed a menu and chosen our food already, we spent time talking about and admiring the original French décor. Our waitress was impressed with our ability to plan ahead. I’m proud to say that my Avana friends were quite the adventurous bunch.

Sam, who is familiar with some French words, was more than willing to translate for us. He read the menu, explained desserts and even told us of his favorite French singers, Daft Punk. This talk of French culture inspired Mark, who considers himself part French, to share with us his family history and love for French swords, mainly the Estoc.

Our food arrived and we carried on our conversation while savoring every bite of our delicious meals. Tonya and Janet, who sat next to each other, were absorbed in the new world they had just entered. They talked about coming back with family members and even asked our server if the bistro caters. Tonya later revealed she would like the French Corner to cater her wedding someday.

Inside French Corner

As I took photos of these moments, I realized I was exactly where I wanted to be. I was surrounded by individuals who mean the world to me. They see me as someone they can trust, as well as someone with whom they can just “hang out” and call their friend. It was such an honor to share this great experience with great people.

Once we finished dinner, we immediately went over to the dessert bar, which was filled with incredible treats. We each bought a different kind of dessert and enjoyed them with French, decaf coffee…which we later decided was not good. (As someone who has taken several vacations to France, I can absolutely confirm that French coffee is the worst.) This, in a way, was the perfect ending to our “trip” to Paris.

French DessertsAs we said farewell to the French Corner, Sam and Alex had the brilliant idea of writing about our experiences at the restaurants we visit. We are currently making plans to go back to our favorite French place, as well as to other ethnic restaurants around the Twin Cities. We look forward to finding new adventures, as we eat our way around the world. It’s about forming unforgettable moments and building our connections as “friends who enjoy awesome food together.”

The Blessing of Joy

by Levi Martinka, Hammer Volunteer

My sister Joy has Down syndrome. Some may consider having a sibling with a disability to be a burden. In my mind, it is, and always has been, a blessing. Despite being my younger sister, she has greatly shaped my life (whether she knows it or not). Because she is only three years younger, I in fact, don’t know life any other way. I like to think that my life is completely normal. I treat her like a normal “little sister.” I get under her nerves and she gets under mine.

Joy and Levi typical teensHowever, I know there are extra “challenges” that come with having a sibling with Down syndrome, or any disability for that matter. But, these “challenges” might actually be blessing in disguise. When I look at my life and try to imagine it without Joy, it is radically different. Currently, I am involved in many ways with individuals with disabilities. At Eden Prairie High School, I am a student advisor for a club that provides integrative support for students with special needs, and I am on the dance committee that organizes the “Prom” for those with disabilities. Outside of school, I volunteer with Hammer Residences as an exercise partner. Without Joy in my life, I’m not sure I would be part of any of these organizations. I also don’t know if I would have the friends that I have today. Worst of all, I likely wouldn’t have the values that are important to me and make me who I am.

Next year, I am off to college to start a whole new chapter of my life. As difficult as it will be to live away from my family and the things that I have come to know best, I know I am fully capable of being on my own. I have learned to be compassionate, diligent, understanding and, most importantly, patient. Because of Joy and the numerous experiences I have been a part of, I have met many different people, both disabled and not. There is a common denominator I have noticed in all people – we all want to be understood. Wherever I end up for the next few years, I want to stay involved with those less understood in the community.

Joy and Levi

It will be hard to be away from my family. However, I think my sister might have a harder time with the transition. I can guarantee that every night she will ask: “How many ‘sleeps’ until Levi comes back?” I know it is her dream to be independent and live by herself (along with being a rock-star). It will be hard for me and my younger brother to go off to college knowing Joy wants to so badly. Although I do not know what is in store for her future, my biggest hope is that she feels important and needed. Joy may not know it, but she has made a lasting impact on our community, especially on me. I want her to know this and feel loved.

The Not So Scary Future

By Ann Martinka, Business Development Associate for Hammer Travel

As a parent of a child with a disability, the future is an unknown, intimidating and down-right scary place. During the early years, the focus of life is on the here and now. Taking life day by day is not an exaggeration, and the future isn’t even in the picture. As life becomes more “normal and routine,” the future begins to loom and it isn’t at all what we had pictured it to be. That is where we are in our life. My husband and I are the proud parents of 3 wonderful children, Levi (18), Joy (15) and Aaron (13). Our daughter Joy has Down syndrome.

Joy and AnnJoy entered high school this year. Along with that transition come different meetings regarding her future. One of the meetings we had in the beginning of the school year was called McGill Action Planning System (MAPS) or more frequently called Making Action Plans. Set up by Joy’s case manager, the purpose of this meeting was to discuss our hopes and dreams along with our nightmares and fears for Joy. We talked about her gifts and talents as well as the support she will need to be successful. This meeting involved important people in her life – her case manager, teachers, her brothers, my husband and me. Also with us, sitting on the table, was a box of tissues…most parents cry as they discuss the future.

We began by talking about our hopes and dreams for Joy. We want her to live away from home as independently as possible, have friends, and be a productive member of society (the same goes for her brothers). We then discussed our fears for Joy as it related to her future. Safety, vulnerability, loneliness, not being accepted or happy, and the constant struggle to reach her potential remain at the top of the list. As I sat there thinking how hard it was to be a parent, much less a parent of a child with a disability, it felt as if the weight of the world was on my shoulders.

Joy Cheerleading

As we began talking about the support that Joy will need to be as independent and productive as possible, I began to relax. I work at Hammer Travel, a subsidiary of Hammer Residences, Inc. We offer travel services and support for those with developmental disabilities. I have traveled with many individuals and have seen them step outside their comfort zones. They come to realize how wonderful other places can be and how much fun it is to travel. I have talked with individuals that had never been on a plane before. I could hear the pride in their voices as told me all about the flight. I have listened to the joy in their voices as the stories are told and re-told. I have watched their self-confidence grow and their dreams come true.

I know the Hammer programs, the people, the care and the support that are given daily. I know about all the training that is given to the DSPs behind the scenes. I have witnessed the respect, kindness and love that are provided daily to the people Hammer serves.

Joy 2Little by little, the weight began to lift off my shoulders; the future didn’t seem so bad. The fears began to dissipate. I quietly pushed the tissues aside, and we spoke of how we could help Joy live her life to the fullest, knowing that there is a great future ahead. With a renewed sense of confidence, I was able to leave the meeting smiling and happy about what lies ahead for my Joy.

Unexpected Reflections from Dinner

by Tony Baisley, Director of Communication

Modern Cafe

I was enjoying a birthday dinner at The Modern Cafe in Nordeast recently when something caught my eye. A young woman with what I perceived to be a cognitive disability was out for the evening with her family, also celebrating a birthday. Everyone appeared to be enjoying themselves and the delicious meals that have kept the Modern a mainstay in the Minneapolis dining scene for years. The young woman was radiant, obviously feeling safe in the company of her close knit family. She shared fork-fulls of her meal with her mother and possibly a sibling. She looked over at me and smiled … actually, she waved at me, smiling so big that I could barely see her eyes anymore! It was a joyous moment.

MeatloafTruth be told, I wasn’t feeling an abundance of love in my life at that very moment. It had been a difficult few weeks. But seeing this young woman and how simple – yet profoundly instinctive – her interactions with her loved ones were moved me in an inexplicable way. At one point, she rested her head in her brother’s outstretched hands in a gesture that was all trust … complete confidence in the bonds that she was born into and had developed with family. She made sure her mom tried her meatloaf, lovingly held the arm of her brother, and beamed at the rest of the family around the festive table. Nothing was for show; this was a family in their routine, and the young woman clearly loved each of them dearly. I didn’t mean to stare but that’s what I found myself doing.

Crashing-WavesAs we grow older we have to choose what’s important to us. For some that translates into our own family, a rewarding career, and a close circle of friends. Shedding the protection of the family nest, we have to grow up, navigate the world and make decisions for our own good. We understand that these decisions will impact the lives of others. For the most part, we choose who we want to invite into our personal lives as well as those individuals we may need to let go. Busy living, years go by fast sometimes without our even understanding that certain decisions made once upon a time set in motion the very life we now wake up to. This can cause a jolting introspection when waters get rough.

Glancing over at the loving family next to me, I couldn’t help but notice how easy it all seemed for them. At that moment, life didn’t feel easy for me. That is life – seamless one day, heartbreaking the next. Perhaps, like most of us, this particular family had endured some hardships along the way. But that Saturday in dark, freezing January, I was thankful for the easy affection I witnessed at the table next to ours. It inspired me to seek out the joy in life. It will be my own personal journey, but I’m determined to make it a happy one spent with those that I’m lucky enough to meet along the way.