Ally Restemayer, Entreprenuer

by Rachel Hafner

Ally Restemayer

Allison Restemayer is a typical 18-year old who is smart, funny, creative, likes to go shopping, and loves spending time with family and friends.  She graduated from Sheyenne High School in West Fargo this past spring, and like her classmates is preparing for her adult life and career. 

To prepare for her future, Allison will be attending West Fargo Transition Academy starting this fall. 

This is a program for students with disabilities, ages 18-21, who have completed their high school requirements and are ready to transition to community-based programs. Placement and individualized programming is determined by the student’s Individual Education Program (IEP) and IEP team.  West Fargo Transition Academy will collaborate with Allison, her family, her school team, and adult service agencies to create a future-plan for community living, employment, recreation, and general community participation.

Ally with her handmade jewelry line.

The reason that Allison requires specialized support and training as she prepares for adulthood is because she has Mucopolysaccharidosis 1 (MPS 1), a progressive, debilitating, and often life-threatening diseased caused by a deficiency of the lysosomal enzyme a-L-iduronidase.  Deficit a-L-iduronidase activity prevents lysosomes from fully degrading certain glycosaminoglycans (GAGs) that are important constituents of the extracellular matrix, joint fluid, and connective tissue throughout the body.   While Allison requires significant medical interventions and mobility support, she continues to have a positive outlook on life and aspires to do great things with her future.

Most recently, Allison was inspired to start her own business, after visiting The Gifted Bean Coffee House in Bismarck.  The Gifted Bean is owned and operated by a family who wanted future employment for their son with Down syndrome.  Allison’s takeaway from seeing The Gifted Bean, was that she too could be an entrepreneur.  So, she stared her own business, “Ally.” 

With the support of her job coach and her mom, who she calls her biggest supporter and the person who helps her follow her dreams, Allison makes jewelry utilizing a Cricut Machine.  She has been selling her jewelry at private events and through social media.  And starting in September, she will be selling her earring line at True Colors, a high-end women’s consignment boutique, in Grand Forks. 

Allison says that having her own business is important to her because she has a job that she loves where she can make her own money.  She hopes that as her business grows, she will be able to help other people find work as well.  Allison strives every day to be nice to everyone she meets and to live her best life. 

My Story

by Hope Fuglesten

Hope volunteers at The Arc, Upper Valley office two days a week,
doing clerical work and answering phones.

My name is Hope Fuglesten. I am 22 years old. I graduated in 2016. I was born with Spina Bifida. I have probably had 20-30 surgeries. The reason I have gotten through all my surgeries is because of my family and friends support and encouragement. If I didn’t have them I don’t know where I would be today.

In my spare time I like to hang out with my niece and nephew, and family. I also love to go to UND Hockey and basketball games. I also enjoy volunteering at The Arc, Upper Valley. The employees at The Arc are really nice.

I want to thank Rachel Hafner, and The Arc, Upper Valley for letting me volunteer.

If you are looking for a place to volunteer, I would recommend looking in your community.

For the Love of Mary Jo

by Virginia Esslinger

Virginia and Mary Jo at The Inter-Agency Picnic.

Back in 1970, I was teaching pediatric nursing at the nursing school at St. Michael’s Hospital in Grand Forks and I took my students on a field trip to the institution in Grafton.  None of us was prepared for the devastating experience we had there.  After what I saw at the institution, I welcomed the 1980 lawsuit The Arc filed against the state of North Dakota for the appalling way the residents of that institution were treated. Little did I know that in a few years I would have a child with an intellectual disability.

I had a career I loved as a nurse, I had a husband and four great kids, ages 18, 16, 13 and 11.  And then it happened!  We were surprised to learn that I was pregnant with number 5.  It was a shock to our whole family.  My 16 year old’s comment was, “Well Mom, better you than me,” to which I replied, “You got that right”. 

Because of my age, we knew that the risk of the baby having Down syndrome was higher.  I wanted to know if the baby had it so we could get prepared.  The kids wanted to know, but my husband said it didn’t matter to him; we would care for and love the child regardless of what he/she had, if anything.  But the kids and I prevailed and testing was done.

The test revealed that our baby girl did, indeed, have Down syndrome.  The first few weeks after the diagnosis were quite devastating for me.  It felt like I was living a nightmare and a black cloud was hanging over me.  My 11 year old was crying one night and when I asked her what was wrong, she said, “What am I going to do when the kids tease me about having a r——-d in the family?”  So we went into action.

The first thing we did was ban the word r——d from our vocabulary.  We forbid it to be used anywhere around us.  This was in 1984!  Long before the R word movement that is now prevalent. 

I knew someone who had been involved in The Arc, Upper Valley, although I didn’t know much about the organization.  So I called the office and asked if they had any information about Down syndrome.  They sent me a book about Down syndrome which was pretty positive, thank goodness, because back in the 80s there was a lot of negative information about people with intellectual disabilities.  Most evenings our family had dinner together and the conversation around the table often was about Down syndrome.  We looked at pictures of children with Down syndrome and we developed the one-minute response that the kids could use to explain Down syndrome to their friends.

By the time Mary Jo was born, everybody was ready.  My 16 year-old had band practice the morning she was born.  When she announced that her baby sister had been born that morning, the band played “Happy Birthday” for her.  The kids’ friends brought gifts for the baby and clamored to see her.  When Mary Jo was a couple weeks old I brought her to the 11 year-old’s school and let her take her to her classroom to show all of her classmates.  They were thrilled.  And my husband formed a special bond with that little girl that was evident until he passed away.  Now that he is gone and the four older kids are living in other parts of the state and country, she is my partner and pal and keeps me busy.

Although Mary Jo’s Down syndrome brought with it a number of medical and physical challenges (she has had 4 open heart surgeries and 8 other surgeries plus numerous other procedures, hospitalizations, etc.) she is vibrant, busy, active, curious, sometimes lovable, sometimes not as lovable, but always a fierce self advocate and is actually proud of having Down syndrome

When Mary Jo was about 4 months old, I received a call from The Arc asking if I would serve on a committee.  I agreed.  I don’t recall what committee it was, but it was the beginning of a long association with The Arc.

 Over the years I have served on committees, served on the board of directors for many years, and served in just about every office on the board including president.  I also served as president of the Arc of North Dakota for several years.  I have testified at the legislature in Bismarck, once bringing Mary Jo along to attend a dinner with some legislators when we were trying to get the Workers with Disabilities legislation passed. 

I tell everyone that we need to constantly support organizations like the local, state and national chapters of The Arc and other organizations that advocate for people with various intellectual disabilities.  Because of their efforts, life for people with intellectual disabilities is profoundly better than it was before 1980. 

However, as we have seen recently there are always challenges to the benefits and services that are provided to support people with disabilities, usually in the name of state or national budget problems.  They try to solve them by decreasing benefits and supports for the most vulnerable in our population. 

So to The Arc, Upper Valley I say “Keep on keeping on.  We need you.”

Thankful for ‘Wings for All’ Experience

by Beth Sheehan

Thank you so much to The Arc, Upper Valley for sponsoring the Wings for All event last September. This was such an amazing event and came at the best time of our life!

When I saw the ad for the event, we were a couple months away from my son’s Make-A-Wish trip. My son Oliver is 8 years old and has Down syndrome. He has some very serious health complications that hospitalize him often. Oliver has had many life flight trips, but had never flown for fun, so this airport rehearsal event was perfect for his needs.

Oliver and family at Wings for All.

I couldn’t believe Wings for All was happening so close to our trip. I signed up instantly. I knew Oliver would be nervous to fly because he would think he was going to a hospital. The event itself was so fun. It was so organized and as close to a real flight as it could be.

Oliver did get nervous in the tunnel waiting to board plane. He didn’t want to step foot through the door of the plane. Because this was a practice event, no one got nervous about him holding up the line, or worrying about dealing with impatient people who just don’t get how hard stuff like this can be for many people.

We explained calmly to Oliver that it is just chairs in there, he watched his sister go in and come back out. He slowly peeked through the door and was so excited to see rows of chairs! He marched right in and found a seat! He was so proud of himself.

Our daughter Piper had never flown at all, so this was so beneficial for her as well. They were both able to explore the plane and meet the crew.  I haven’t flown since before 9/11 so there have been so many changes. It was so helpful to know what to expect, how to pack to make things easier, as well as how much time everything will take.

All of this made a world of difference when Oliver’s trip came along. Our Make-A-Wish trip was scheduled to fly out of the Twin Cities. Oliver was nervous, because the airport was packed, but he knew what to do at security. He knew the tunnel wasn’t scary, and marched right on the plane.

Oliver on his Make-A-Wish trip.

Oliver’s Make-A-Wish trip had some ups and downs due to weather and health issues, and we hope to take the kids on a Disney re-do some day! I hope next time we can fly out of Grand Forks. Such an asset to have that airport so close. The staff was so accommodating and friendly!

I would love to do the Wings for All event again, just to keep him familiar with the process in case we ever do get to go somewhere fun again! Thank you so much to all who made this event possible!


Note: Wings for All is one of The Arc of the United States’ national initiatives, an airport “rehearsal” program specially designed for individuals with autism spectrum disorders and other disabilities; their families and aviation professionals. 

The Grand Forks Event was planned and organized by The Arc, Upper Valley and made possible by a generous award from NDAD’s Faye Gibbens Memorial Grant.  Event partners included Allegiant Air, Grand Forks Regional Airport Authority, Avflight GFK, and the Transportation Security Administration.

Kim Rygg – Defining Personal Style

Kim was featured in an ad for True Colors – a resale and consignment boutique located at 8 S 3rd St in Grand Forks.

Kim Rygg is a busy woman. Her life is filled with work, volunteering, swimming, bowling and performance art, just to name a few.

Born with Down syndrome, Kim is soft-spoken and polite, but does not hesitate to stand up for herself.

In junior high school, when another student called her the ‘R’ word, she immediately reported it to the school principal.

“It was just awful, “ said Kim.

Fortunately, that’s the only incident of bullying Kim can recall from her time in school.

A few years ago, her doctor told her that she should cut down on the amount of soda she was drinking and exercise more. She showed tremendous willpower by giving up soda completely and exercising two hours a day on the treadmill and stationary bike. The result was a loss of 50 pounds over three years, sparking her interest in fashion.

Kim puts her unique sense of style to work by volunteering weekly at True Colors, an upscale women’s resale and consignment store. She enjoys putting together outfits and dressing the mannequins for display.

Kim, volunteering at True Colors.

But fashion is just one small part of Kim’s life. She participates in swimming and cheerleading through Special Olympics and works at Holy Family – St. Mary’s School, a private K-5 elementary school in Grand Forks, where she assists teachers with projects and helps out in the kitchen.

Kim’s mother, Lois Rygg, says that she never gets bored. “Kim can always find something to do, even if it’s just pulling weeds in the yard.”

She and her mother used to spend most of the summer at the family lake cabin, but that has been reduced to just weekends, due to Kim’s busy schedule.

“Kim isn’t willing to give up any of her activities, so that pretty much dictates when we can be at the lake,” laughed Lois.

Kim has done some international traveling, as well. Along with her mother, she has been to England, France, Italy and Germany. Her favorite memory is of being serenaded during a gondola ride in Venice.

One of Kim’s greatest pleasures is acting and singing in L.I.S.T.E.N. Performing Arts productions. She’s appeared as Sandy in Grease, Dorothy in the Wizard of Oz and Sophie in Mamma Mia.

Stage fright is not in her vocabulary. “She never gets nervous,” says Lois.

Kim is usually at True Colors on Friday afternoons, so stop in to say hello. She will be glad to help you find the perfect handbag or accessory for your own personal style.

Hobby Farms, Friendships & Pancakes

Merlin Johnson knows a thing or two about running a hobby farm.  He grew up on one, near Lisbon, ND, along with his parents and two younger siblings.

When he was born, more than seventy years ago, he was very sick and spent quite some time in the hospital.   His parents knew that he was likely to have developmental delays, which become apparent by the time Merlin was old enough to attend school.

Merlin and his sister on the farm, getting photo bombed by a chicken.

There were no special education classes back then and after an attempt at sending Merlin to public school, where he lasted exactly one day, they chose to keep him at home.  Soon, the authorities began to make periodic visits to the family, pressuring them to send Merlin to live in the state institution at Grafton.

“It was really intimidating,” said his sister, Peggy Johnson.  “I remember sitting on the stairs and listening to the conversations.”

Merlin and Peggy’s parents were adamant, however, that they would not send their son to such a place.

“I didn’t realize the full scope of it until I was an adult,” Peggy said, “And I’m so proud of my parents for standing up to everyone and protecting my brother’s rights, because that just wasn’t done back in the day.”

Their father ran his own road maintenance business and kept pigs, sheep, chickens and cows. So instead of spending his days in an institution, Merlin learned all about raising animals.    He helped feed the animals, milked cows and helped his father fix things around the farm.

Merlin said his favorite memories from his childhood were milking the cows and playing with the family dog, Penny.

“Every dog we ever had was named Penny,” laughed his sister, “Because he could actually pronounce the name.”

Peggy and Merlin enjoying coffee at Perkins.

Merlin always had an active social life.  He went everywhere with his parents and knew everybody in the small town of Lisbon.  And everybody knew him.  He was very blessed to have enjoyed life to the fullest, a far cry from the institutional life he may have led if his parents had not been so strongly opposed to it.

When he was 57 years old, he moved with his mother to Grand Forks, where his sister was a teacher in the public school system.  Not long after, his mother passed away and his sister assumed legal guardianship of Merlin.

For a while, he lived with Peggy, but she realized he needed additional supports to become acclimated to the community in the manner he was accustomed to.  She began looking into a group home setting, but Merlin was completely against it, as he thought it was too much like a nursing home.  He wanted his own place.

Seemingly at a dead end, one day Peggy ran into an acquaintance who happened to work at The Arc, Upper Valley, and was invited to visit the office to learn more about community living options.

“I had no idea what our options were.  The Arc was there for me when I needed help.”

One month later, Merlin was living independently in his own apartment in a 4-plex and soon made friends with the other tenants in the building.  With staff to assist him when needed, he learned to ride the City Bus and began exploring the community.

Now in his seventies, he is officially retired.  He loves to play pool, a pastime he enjoyed with his father; has been involved in league bowling, takes walks with friends at Special Olympics and attends L.I.S.T.E.N. dances every Friday night.  He likes to take a trips to Devils Lake to go fishing.

He says his favorite things about Grand Forks are that it’s a good town and he has his own home.

Merlin and Peggy have a close sibling relationship.  Being seven years older and blessed with an excellent memory, Merlin recalls when Peggy was born and watching her drink from a bottle.”  Consequently, he still sometimes refers to her as “Baby,” in a teasing manner.

They enjoy many outings together.  On the day they were interviewed for this story, they were at Perkins for pie and coffee.  Before too long, Merlin was pointing at his watch and reminding Peggy that he had dinner plans that evening.

Asked about his plans, he simply smiled and said, “Pancakes.” 

“He goes to every pancake feed and benefit in town”, said Peggy, laughing.

And with that, we parted ways.  Because you never want to be late for pancakes……

Roberta Middagh – Woman About Town

As an experienced self advocate who has lived independently in the community for over 47 years, Roberta Middagh brings her unique perspective to The Arc, Upper Valley’s board of directors, which she joined in 2017.

Along with her twin brother, Roberta was placed at the Life Skills & Transition Center in Grafton, ND (formerly called the Grafton State School) when she was just three years old. At the age of 19, she left the institution and moved to Grand Forks. Her twin remained at Grafton for another 13 years until he, too, was moved to Grand Forks.

“I didn’t get to see him much after I left Grafton, but when he moved to Grand Forks, I visited him every day at his group home. I still see him almost every day.”

They remain close and keep in touch with their many siblings and nieces and nephews who live all across the United States.

She enjoys a full social life, dining out regularly with friends and taking vacations to Nashville, TN and Branson, MO, among other places.

“Nashville was okay,” she said, “but I liked Branson better.”

Her choice of destinations is no surprise – she is a big fan of country music, particularly Hank Williams Sr. “I like all country music, but mostly the older songs from the 50’s & 60’s.”

Roberta has always been actively involved in the community as a volunteer and advocate. She helps serve the meal every year at the Inter-Agency Picnic, is part of Development Homes Speakers Bureau and worked on Self Advocacy Solutions’ Spread the Word to End the “R” Word Campaign. She helps prepare newsletter mailings for the L.I.S.T.E.N. Center and helps out with other tasks whenever she can.

She worked as a dishwasher at UND Dining Services in the Memorial Union, retiring in April 2016 after 29 years, and although she once had a roommate long ago, she has lived in her own apartment for most of her life in Grand Forks.

“I like my privacy,” she said.

Since retiring, she keeps busy playing cards with her friends at the L.I.S.T.E.N. Center and league bowling on the Development Homes team at Red Ray Lanes. She likes UND sports, but doesn’t attend the games, as she’d rather watch them on TV from the comfort of her home. She also does plastic canvas crafts.

Roberta had knee replacement surgery in 2015, and it barely slowed her down. However, it did prevent her from bowling in the last part of the league season that year, much to her dismay.

During her recuperation, she learned that her close friend, Beverly, whom she had known since childhood, had passed away.

“I knew her since we were little girls in Grafton. We were like sisters,” she said. “When I found out that she passed away, I was too upset to eat dinner that night.”

Losing her friend was difficult and although she still misses her, she cherishes the memories she has of their lifelong friendship.

Roberta is well-connected and knows her way around the community. She knows the city bus routes and although she doesn’t drive, she knows all the streets and intersections and can give incredibly accurate driving directions.

When asked what advice she would have for someone new moving to Grand Forks, she said, “I’d say welcome to Grand Forks. Here’s my phone number. Call me if you need help or just want to talk.”

My Meeting at The Arc

by Robert J. Johnson

Me and my 2 brothers Sam and Peter Johnson went to The Arc, Upper Valley meeting about the legislature. The meeting was conducted by Rachel Hafner who is The Arc, Upper Valley director.


She showed us the state website to see what bills and things are going on in the legislature. She gave us some tips about speaking at the legislature.
I learned a lot of things.

Why I Vote

By Anthony Arnold

As a person with a disability, why do I vote? Why does it matter?

I would like to credit a couple of teachers in school, who gave the class, as an assignment, to watch the local news and follow current events. This began my interest in what was happening locally and taught me that I was part of the community I had some say to what was happening.

Since World News comes on before local news, I got in the habit of watching that as well. World News expanded my knowledge of what was happening not only nationally and around the world, it exposed me to politics as well. I liked saying it was my eighth period of the school day, being I was learning. At times, I picked up so much information by watching the news, that it helped me to understand more of what I was also learning at school.

Through this exposure to politics, I learned as a person with a disability I should become familiar with the political aspect, and what is involved in creating policy. Let’s face it, my life depends on various policies, such as education, employment, health care, independent living, etc. I must have a say in each.

In addition to this, I learned what different politicians and political parties represented, and how they may help me as a person with a disability.

I have voted in every election since my eighteenth birthday, even if it has been only one measure. In recent years, I have voted early which typically has shorter lines. Being in North Dakota, you can’t count on the weather on election day.

When I get ready to vote, I spend time both on the internet and listening to different formats, trying to get up to speed on candidates and the issues.

At the polls, I use the machine, where it reads to me, I select my choice and then the machine marks the ballot and sends it back out to me. This offers a great feeling of independence. Every time I go, I feel liberated and like I am a part of society.

Thank you,

Anthony

Everly’s Story

by Erin Peterson

Brody and I, along with our families, were blessed with the birth of Miss Everly Anne on September 22, 2015. Everly truly has a heart of gold and brings so much joy to our lives!

She is the perfect mix of sweet and spunky and is the greatest fighter I have ever known. She has taught us more about life than we could have ever imagined.

You see, Everly was born with a very rare genetic syndrome called MMIHS (Megacystis Microcolon Intestinal Hypoperistalsis Syndrome). This is a life threatening syndrome with no present cure (for additional information visit
MMIHS.org). Because of this, she so bravely faces challenges each and everyday.

This is her story.

When I was 26 weeks pregnant, an ultrasound revealed our baby had an enlarged bladder. Weekly ultrasounds and meetings with specialists took place in order to monitor the prognosis. At 39 weeks I was induced in Fargo, North Dakota and Everly graced us with her beautiful presence.

To look at her you would never know that her insides were not working properly. We got to spend the first day like most parents, in complete awe of this little human that we brought into the world. However, the next day challenges presented themselves and we were forced to face some pretty hard truths in the days to come.

Everly began spitting up large amounts of bile. She was quickly admitted into the NICU and had surgery the very next day to fix a meconium
backup in her small intestine. We prayed this would fix our baby and we would be headed home soon.  Unfortunately Everly continued to spit up bile and further complications were identified.

Everly spent the next month having various tests administered around the clock to try and uncover why her bladder and intestines were not working properly. After one month in Fargo, Everly was airlifted to the Children’s Hospital in Milwaukee, Wisconsin where they specialize in gastrointestinal care.

It was there that Everly was diagnosed with MMIHS. MMIHS affects the motility of the bladder and intestines and because of this Everly is unable to digest food or drink by mouth. Instead, a tube delivers a nutritional supplement (TPN) directly into her bloodstream through her central line. Her stomach also houses a g-tube for medication administration. We also use this to drain her bile when it exceeds the capacity of her intestines.
An ileostomy was her most recent surgery in order to minimize abdominal bloating, help rid her body of waste, and hopefully improve intestinal motility.

Everly is also catheterized every four hours as her bladder is unable to consistently empty on its own. In addition to her inability to eat and drink, many other challenges exist due to this syndrome. For example, it is not feasible for Everly’s chest area to get wet due to a possible infection in her
central line. Everly’s life depends on existing in an environment that limits her exposure to much that could be detrimental to her health.

Extreme outdoor temperatures are of further concern. Hot weather could result in Everly’s dressings losing adherence to her skin. A total seal is absolutely necessary as the area needs to be kept completely sterile. Cold weather may affect Everly’s tubes in a negative way as well.

A simple cold or virus could result in ER visits and possible hospitals stays. The consequence of a fever/temperature is always a trip there and the outcome has been an admittance more than once. Infections could prove fatal for Everly, being she has a central line running directly to her heart.

Everly has spent 150 plus days in hospitals and has been airlifted three times. Clinic appointments and pharmacy runs occur on a weekly basis, with trips to the children’s hospital taking place every couple months. We have also completed a week long transplant evaluation in Omaha, Nebraska. The medical community is also in contact with us on an almost-daily basis.

At home, Everly requires around-the-clock care and monitoring. Her medical care includes feeding tubes, ostomy bags (empty and change), administering meds, venting her tummy, charting input vs. output, changing fluid amounts, TPN hook up and disconnects, answering and
making calls to set up appointments and get weekly lab results, various medical appointments, central line dressing changes, g-tube replacements, catheterizations, learning new procedures, tummy measurements to check for distention, temperature taking, sponge baths in order to keep
her central line dry, flushing tubes, checking the pump batteries, picking up supplies, researching and analyzing EVERYTHING!

Everly is also hooked up to two pumps throughout the day. Her TPN (nutrition) pump runs for 16 hours a day and fluids for 16-24 hours. Therefore, her cares also include following very closely behind her with sometimes two backpacks weighing up to 13 pounds.

Everly certainly faces many medical challenges on a daily basis but this does not define her. She is a two year old who is so curious about the world! When she is feeling well, you will most likely find her out playing at the park, walking her babies in her toy stroller, going for bike or
stroller rides, attending library, gym bin, dance and music classes, or enjoying preschool (withmom in tow). She also loves to lick foods simply for taste (pickles, peppers, apples, etc.)!

Everly continues to teach us important life lessons with a huge smile on her face! One of the most important lessons she continually reinforces is to live each day to its fullest. She has an amazing love for life, which is something I greatly admire about my daughter.

Live each day to its fullest!