Category: Member Spotlight
Meet Cynthia. Working to support people with disabilities for over four decades, she has seen many positive changes in the community. She encourages people to make use of the Aging and Disability Resource Centers (ADRCs). We’re so fortune to have her as a member of the Self-Determination Network!
What's your story? Tell us a little bit about yourself.
Cynthia is an Information and Assistance/ADRC Specialist for the Aging and Disability Resource Center of Sheboygan County with a focus on serving adults with intellectual and development disabilities. She has been supporting people with disabilities for over 40 years. She explains that she remembers the days before the repatriation of individuals from ICFs-MR (now called ICFs-IDD) back to their home communities and nearer to family with work opportunities being mostly restricted to “Sheltered Workshops”. She worked at a camp during a summer during college that catered to people with I/DD and after college worked at two different privately owned ICFs-IDD in Milwaukee, a pre-vocational program then known as a Sheltered Workshop in a Milwaukee suburb, then a Case Manger for Sheboygan County Health and Human Services Developmental Disabilities Services (which included two years contracted to an MCO) and finally the ADRC of Sheboygan County for the past almost 12 years. “If someone asked me when I was 20 what my career would be, I NEVER would have thought, let alone answered, “to be a Social Worker focusing on people with I/DD”, she shares. She changed my major after the summer working at the camp.
How are you involved with self-determination? Why did you join the SD Network?
Cynthia joined the Self-Determination Network for a few reasons. She doesn’t work in a major metropolitan area, so our resources are not as extensive as in other areas. She explains that it can also be very insular since many employees from the different local agencies have been collaborating for at least two decades. It is helpful to find out what other communities are doing that is positive or innovative and that maybe we can incorporate on a local level. Her work currently focuses on emerging youth with disabilities and assisting in the transition to adulthood. She shares that it is wonderful to see the generational differences. They have gone from trying to convince people that it is ok to make their own decisions and work towards their own goals to younger folks knowing that it is their right to do so. She also manages their agency’s social media, so she’s always looking for resources to share with others, even if they have to drive to access it.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Cynthia has seen many changes in the past 40 years from the attitude and actions of service providers and family caregivers, language and terminology, types of service provided, Long Term Care Funding and an almost total disregard of self-determination to the embracing of self-direction. It’s not universal, there is still learned dependence amongst some people with I/DD and a tendency for some family caregivers to lean towards trying to block all risk for their loved one which is an obstacle to self-determination.
She explains that she had to evolve as well and she clearly recalls participating in meetings in Milwaukee County where the county staff and residential providers made decisions about who had empty beds, who needed to move to make room for someone else and basically moving people around to make the system work rather than addressing individual preferences. She realized that the people she worked with in the ICF-MR and had referred for residential services had little to no chance to achieve their dream of moving out to a something more independent.
At the request of her then employer, she had also spent a few weeks with a journalist from a national magazine who was doing a series of articles about people in Wisconsin who lived with disabilities and how their wishes/needs/wants were or were not being met. She introduced him to people with I/DD who wanted to tell their stories and helped him make connections in the community with involved agencies. In reading his series, it was eye-opening for me to read things from the perspective of the interviewees. There were things that she thought were positive or showed progress that from the perspective of the person were not.
“These were some of the events that helped me evolve as well as being able to observe the positive changes in lives of people who had been able to express their wants and needs and, in some cases, self-direct their funding,” she says. When she was a case manager, she really enjoyed helping people (and their families) realize and embrace their lives outside of large institutions when ICFs-IDD across the state were closed. “People moved from fear of the unknown and fear of risk to more fully embracing what the world had to offer,” she explains.
What tip or resource would you like to share with people who want to be more self-determined?
Cynthia encourages everyone to use the network of Aging and Disability Resource Centers across the state. She explains that they are underutilized and ADRCs have or can find information about all kinds of resources. ABLE accounts and Special Needs Trusts are also underutilized. She also firmly believes that when working with Long-Term Care funding, it is important to work with staff who have a knowledge base and experience in working with people with I/DD; although some skills are universal, it is a specialty and people should request a case manager or ICA who has this kind of experience.
She would also like to mention the movie, “Crip Camp.” It’s a great documentary that really shows how a group of people living with disabilities started the self-determination movement in the 1970’s.
What are some of your hobbies?
Right now, Cynthia’s main hobby during the pandemic is contemplating and planning for her life after retirement. She really enjoys being by water. “If you live in a part of the state that is not on a Great Lake, you really need to visit one because it is unlike anything else………except maybe the ocean,” she tells us.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Meet Lynndale. As a dedicated self-advocate, she encourages people to follow the path to look forward. She has been involved in things like People First, and she’s currently the president of her local People First chapter. We’re so fortune to have Lynndale as a member of the Self-Determination Network!
What's your story? Tell us a little bit about yourself.
Lynndale was born and raised in Appleton, Wisconsin. She attended public school and was in Special Education. “I overcame my disability,” she says. She was also involved in Special Olympics, etc. She has been living on her own since she was 18 years old. Her dad, who taught Special Education, found her her first job. She worked at a grocery store for 32 years. Unfortunately, her dad passed away from two brain aneurysms in 1996—she was 25 years old.
Lynndale shares that she had a bad incident at work last year and she has been on medical leave since.
How are you involved with self-determination? Why did you join the SD Network?
Lynndale has been involved with People First for 17 years. She currently serves as President of her local chapter. “It’s been rewarding, challenging, and fun,” she explains. She has attended the Self-Determination Conference in the Dells where she has learned to not only stand up for herself, but also for others who might not be able to.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Lynndale recently turned the big 5-0! Every year, she goes to mass and renews her baptism promises. “God has definitely blessed me,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Lynndale shares the Special Olympics oath with us:
Let me win
If I cannot win
Let me be brave in the attempt
We all can’t win all the time
We all have to be brave and trust
In this oath
She explains that she repeats this to herself. It helps her stay motivated and keeps her faith. She encourages people to go to meetings and conferences to learn how others are being self-determined. “We all have a voice—we need to stand up for ourselves. Let’s follow the path that we need to look forward,” she says.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Anna is originally from a small town in northern Illinois; she moved to the Madison area for grad school nearly 10 years ago. She explains that her ultimate life goal has always been a two-parter—1. to work (preferably) in a job she finds meaningful and she feels she’s uniquely gifted at and 2. to live independently in the community.
“Living in Wisconsin has been an exciting journey, one characterized by many moments of achievement as well as quite a few learning experiences (a.k.a. failures!),” Anna says. She’s proud to say she graduated with she master's degree in rehabilitation counseling and has had the privilege of working in social services. She has worked in a couple different positions over the years, but all having the common thread of assisting people with disabilities in reaching their employment goals.
Anna shares that she’s grateful to have accomplished some of her goals and she has learned a lot. While she has been able to continue living in the community, she’s not currently in a situation she would call "independent." After 10 years, she now has the benefit of a better understanding for how to make strategic progress towards the future she envisions. “It's not always possible to achieve everything all at the same time, but slow and steady wins the race. Anything can be done one step at a time,” she says.
How are you involved with self-determination? Why did you join the SD Network?
Anna was able to attend and present at the Wisconsin SD Conference for her job a couple of years ago. She’s excited to be a part of this Network to learn about all the possibilities for future growth and to assist others with their goals.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?
Anna recently wrote a book! She explains that it's a collection of essays about her experiences, observations about the world, and the people who have influenced her the most. This is something she has been working on for a long time and she’s really excited to share it. You can learn more about it here.
What tip or resource would you like to share with people who want to be more self-determined?
YouTube and Audible are both essential resources for Anna and have really helped her get through quarantine. “There's so much information out there and cool people to learn from,” she says. She likes watching interviews of people on YouTube that she finds motivating like Oprah Winfrey and Taylor Swift. Sometimes, she will have videos of them playing in the background while she’s working on other things. Right now, on Audible, she’s starting to move through a list of books written by and about US Supreme Court Justices.
What are some of your hobbies?
Anna enjoys drinking coffee and hanging out with her teacup chihuahua, Coco. When she’s not working, those are her two main priorities in life. She’s also hoping to downsize her belongings, so she will probably be spending much of her time cleaning in the early part of 2021. “Wish me luck,” she exclaims!
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What’s your story? Tell us a little bit about yourself
Emily is originally from Darlington, WI. Her family moved to Stevens Point, WI her junior year of high school. She graduated from Mid-State Technical College with an Associate’s Degree in 2010. She shares that around that time, she was diagnosed with Asperger’s Syndrome (a form of autism).She worked in assisted living facilities and then moved to Madison in 2017. She has been recently working in an office doing clerical work.
How are you involved with Self-Determination? Why did you join the SD Network?
Since moving to Madison, Emily has been involved with the Autism Society of South Central WI. She is the Administrative Assistant for the Autism Adult Support Group. She is also on the planning committee for INTEGRAL Autism Conference. “INTEGRAL means Interactive Networking, Talks & Education for Growing Autism Legitimacy. This conference is geared toward young adults on the autism spectrum. However, everyone is welcome to participate,” she explains.
Emily worked at and now volunteers for Prosperity Pathways and Onward and Upward. She shares that Prosperity Pathways is the ultimate work-at-home source with guaranteed employment positions for remote and onsite jobs. They share the tips, tricks, and techniques to be successful in getting hired. We are growing and getting more job-ready training programs underwritten by sponsors leading to immediate employment in different industries. Onward and Upward helps people who do not have a home and do not have access to a computer.
Tell us some good news: What’s the most exciting thing happening for you (or in Wisconsin) in terms of Self-Determination?
Emily is excited that they were able to hold the INTEGRAL conference virtually on October 24th, 2020. She’s also excited that she recently moved into her own apartment.
What tip or resource would you like to share with people who want to be more self-determined?
Emily encourages people to be confident and to stick up for themselves. She says, “use available resources and know who you really are."
What are some of your hobbies?
Emily enjoys doing such things as reading, biking and hiking. She also loves to read, color, do puzzles, and play cards and board games.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Anastasia views herself as an artist first, and she views her disabilities as just side notes. “They are issues that I need to handle so I can follow my passion for art and hopefully become a well-known artist,” she explains. To help us to have a deeper appreciation for her art, she shares some information about her disabilities. When she was born, she had her umbilical cord wrapped around her neck and chest--cutting off the oxygen to my brain. The doctors were afraid that she wouldn’t survive. Luckily, she was a fighter even way back then. The lack of oxygen caused a brain injury resulting in her Cerebral Palsy.
Anastasia uses the latest assistive technology to help her lead an active life. “My mom says I have the coolest toys,” she exclaims! Her communication device tracks her eyes to select the buttons. She explains that when her first physical therapist in grade school noticed that she has the most control over her neck and head, her father started to make her headsticks so she could create 2d arts. “There were many modifications to the headsticks over the years to assist me to pursue my dreams,” she says.
How are you involved with self-determination? Why did you join the SD Network?
Anastasia joined the SD Network because she enjoys being an advocate for children with disabilities, and seeing them shine in the community.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Anastasia has opened a business to sell her works and to enter into art exhibitions. She has a webpage, HeadStrongArt.net, where people can buy her works or ask for a commission. She runs her business at home. She explains that working from home is the perfect situation for her because when she needs something, her aides are right there to help. She has a drafting table that she drives her wheelchair underneath when she’s creating art. Usually, she leaves her art supplies set up so she can just pull up underneath the table when she’s ready to work. After her aide places her headstick on her head and gets some paints, she paints independently. She shares that often when she paints, she enters into a meditative state; she can take a break from the world for a while. Right now, she’s working on a new body of work about her life and disabilities. She shares that when she tells people about this idea, often they express that she should paint about a happier subject matter. However, she doesn't view her life and her assistive technology negatively. In these works, she wants to celebrate the assistive technology that helps her to live a full life. She’s also painting portraits that illustrate the whole person showing their disability because she wants to show the humanity of having a disability. “If young people with disabilities would see some more images of people who are similar to themselves, they will be more likely to grow up believing in their potential. I am hoping by painting portraits of myself and friends who are disabled, I am helping to fill that need in our society,” she says.
What tip or resource would you like to share with people who want to be more self-determined?
Anastasia’s tip for people who want to be self-determined is to stay calm and speak your mind even when people might disagree. Additionally, she suggests to use humor to lift the mood and to put people at ease. She also suggests that a great resource for people with disabilities who want to become a leader is the LEND program at the Waisman Center. The class teaches how to be a self-advocate and an advocate for children with disabilities. The main requirement is college experience.
What are some of your hobbies?
Anastasia enjoys listening to books or music while she paints. She also plays around with writing. She likes to write short stories and poems. Her other hobbies are being in nature and playing with my dogs.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Meet Dean. This fun-loving grandpa loves to volunteer and help people in any way he can. He’s been involved in disability advocacy for many years and doesn’t let his health conditions stop him from living life the way he wants to. We are so fortune to have him as part of the Network.
What's your story? Tell us a little bit about yourself.
Dean has had disabilities most of his life, but he doesn’t let them stop him from living life the way he wants to. He shares that he was diagnosed with orthopedic problems and fibromyalgia when he was young. He also has type 2 diabetes, asthma, and heart disease. He has survived three strokes, two heart attacks and several other medical problems as he got older. He’s losing his hearing and uses a TTY phone. He explains that he is learning to read lips and is planning on learning sign language. Some of his conditions are chronic and may never get better, but he knows giving up isn’t an option. “I am very motivated to do things I’m told I can’t do or may not be able to do. I love to prove people wrong when I can,” he says.
In 1985, Dean started business college hoping to study electronics, but ended up taking a slight detour into small business management and then supervisory management. “A very good example of where my life took several detours along the way on my journey in life. I never considered the detours I have taken any type of problem, but a great opportunity to grow and learn so much more,” he says. He thinks he learns so more from living his crazy life everyday than any classroom lesson could ever teach him. He considers himself a lifelong learner.
Dean is a very creative, spontaneous and adventurous person. He has a married daughter and two wonderful grandchildren. He also has several other people’s children who call him dad and grandchildren who have adopted him as grandpa.
How are you involved with self-determination? Why did you join the SD Network?
Dean has been involved in disability advocacy for many years. He got involved with the advocacy with his involvement with People First in the 80s, then with Systems Change Network in Iowa, and then with several other organizations. He’s currently a participant representative on the IRIS advisory committee for the last seven years.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Dean is excited that he was recently reappointed to the IRIS Advisory Committee for another year until December 2021 by the Wisconsin Department of Health and Human Services.
What are some of your hobbies?
Dean has many hobbies that he loves to do. He believes in volunteering and giving back to my community and other organizations. Currently, he helps manage and operate a church and several non-profit organizations. He enjoys doing photography and videography which are things that he learned in high school. He’s also an amateur radio operator for KC9TMG.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Jane is the Vice-President of Knapp’s Development, which is the management arm of Lori Knapp companies. They provide a variety of supports to self-directed individuals throughout Wisconsin that include fiscal agent supports and the purchasing of authorized products.
Jane resides in beautiful Prairie du Chien with her husband of 42 years. She has three children and eight grandchildren. She’s on the Governor’s Taskforce for Caregiving, serves on the Wisconsin Workforce Alliance Board, and is a member of the Wisconsin Personal Care Services Association. She also serves as the President for the Futures of Prairie du Chien which is a scholarship program for graduating High School Seniors.
How are you involved with self-determination? Why did you join the SD Network?
Jane explains that 13 years ago their company began fiscal agent services for those who self-direct. “We quickly saw how self-determination brings autonomy and choice to people’s lives in so many different ways. Their lives are richer, fuller, and more enjoyable. I strive to bring self-determination initiatives forward for the greater good,” she says. About five years ago, she and another co-worker brought forth the work comp insurance initiative for those who self-direct which resulted in lower cost premiums and an avenue to ensure that caregivers were covered in case of injury.
She joined the SD Network because it is a great way to connect to like-minded people, share ideas and hear the many success stories.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Jane shares that being on the Governor’s Taskforce for Caregiving, they are developing proposals to attract more caregivers to this workforce so they can provide assistance to those in need of supports. Ever possible avenue is being explored. Caregivers play such a vital role to Wisconsin residents and their role in an individual’s daily life is so important. Self-determination and the value it brings to people is widely recognized by the Governor and Department of Health Services. “This is exciting,” she exclaims!
What tip or resource would you like to share with people who want to be more self-determined?
Jane says, “don’t be afraid to ask for help.” She explains that there is so much information out there and so many services being offered. It can be overwhelming so it is helpful to connect with experts in this field or those who have gone through similar experiences. The Aging and Disability Resource Center in your area is a great way to start. She also suggests that people connect with others like himself/herself for support and ideas.
What are some of your hobbies?
Living on the Mississippi, Jane enjoys boating and biking where there is beauty all around. She and her husband spend a lot of fun times with their kids and grandchildren. “They tend to keep us very young and active,” she says. She also enjoys time with her lifelong girlfriends and taking some quiet time to read a good book.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself.
Evelyn has been involved with education for twenty-two years. She worked with the Wisconsin Statewide Parent Educator Initiative as a Family Engagement Coordinator in northern Wisconsin from the time the grant started in January of 2000 to June 30th of 2020. She explains that in the position she worked with families and educators of students with Individual Education Plans (IEPs) to ensure good outcomes for students. In that capacity she had the opportunity to work with other agencies that provided different types of support services for families.
In April of this year, she accepted the position of Business Developer with the Red Apple Center in Phillips, Wisconsin. “Red Apple is a private non-profit organization that has been providing employment opportunities and person-centered planning for adults with disabilities in Price County and the surrounding region since 1971,” she shares. In her new role, she works across private, public and corporate sectors to improve awareness of the Red Apple Center, manage their brand, build networks within the local and statewide community, and most importantly work to increase opportunities for Red Apple Center clients.
How are you involved with self-determination? Why did you join the SD Network?
Whether being part of an IEP team, serving on a committee or facilitating a conversation Evelyn’s focus is always on an outcome that recognizes an individual’s capabilities. She explains that too often we build plans with the intent to minimize deficits. Although that approach is done with good intentions, she believes building from the perspective of strengths allows better outcomes for all. She joined the SD Network to stay informed and involved with current best practices.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Evelyn thinks Wisconsin has been and continues to be a leader in the self-determination arena. “I am excited to be learning more about groups like Wisconsin Employment First and InControl Wisconsin and the projects they are undertaking,” she says. She’s also becoming more informed about the supports offered through our state agencies.
What tip or resource would you like to share with people who want to be more self-determined?
Evelyn shares that she believes the key to becoming more self-determined is to try and change things that might be viewed as obstacles into opportunities to try something new.
What are some of your hobbies?
Evelyn enjoys cooking, spending time with family and friends, and hanging out with two American Water Spaniels.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Meet Duane. When he’s not biking, kayaking, or playing hockey, he strives to assist people with disabilities have choices through the help of technology. He’s a strong advocate of self-determination and believes it’s the best practice for people with disabilities to live the best life possible. We’re so fortunate to have Duane as a member of the Network!
What's your story? Tell us a little bit about yourself.
Duane began working with people with disabilities as a junior in high school. He started as a Direct Support Provider at St. Francis School for Exceptional Children in Freeport, Illinois and eventually became the residential director there. He went on to be a Qualified Mental Retardation Professional for an agency in northern Illinois and while attending graduate school at the UW-Madison, was hired by the Waisman Center to assist in the design, development and implementation of the Sound Response Program. He explains that Sound Response was the first documented Remote Supports service in the United States. The Sound Response program would evolve into Night Owl Support Systems, LLC and he is one of the owners of that organization. He spent the first part of his career helping students/children by teaching skills that would foster their independence and allow them to live in the community when they became adults. “Choice has always been a big part of my value system and it’s integrated into the way I think. The latter part of my career has been involved with providing technology to people with disabilities to empower them to make choices and the technology allows for more self-direction,” he shares.
How are you involved with self-determination? Why did you join the SD Network?
Duane was a part of the self-determination movement in Dane County when most people receiving waiver services shifted from the legacy waiver to self-direction. That being said, he explains that as people shifted to self-direction, they were offered more choices and could utilize Remote Supports as one of their options. His involvement was from the perspective of a Remote Supports provider. This would allow people more independence by not having staff 24-hours a day.
He joined the Self-Determination Network to stay connected with the self-determination movement. He’s a strong advocate for self-determination and recognizes that not all places offer self-determination as an option for people. He wants to be able to continue to advocate that self-determination is best practice for people with disabilities to live their best life. Joining the SD Network allows him to keep updated on the latest activities and advocacy.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Duane says that there are a lot of exciting things going on right now. He explains that the last couple of years have shown an explosion in the awareness and use of enabling technologies. There are new technologies offering more sophisticated Remote Supports, there are many new devices people use day-to-day and new apps for making life much easier. From residential supports to vocational supports and transportation, the technologies are more readily available than ever. Wisconsin, like some other states, is promoting the use of enabling technologies through technology conferences and technology fests. “I believe the push for technology will only enhance self-determination” he tells us.
What tip or resource would you like to share with people who want to be more self-determined?
"Technology,” Duane exclaims! Having been a part of the technology evolution regarding enabling technologies and Remote Supports, he has been able to see the benefits that technology has provided to people with disabilities allowing more self-determination. “Many people do not have a choice of where and with whom they can live. Technology offers that opportunity,” he says.
What are some of your hobbies?
Duane enjoys bicycling, swimming, kayaking and playing his guitar. He also can often be found playing hockey in Sun Prairie, WI.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
What's your story? Tell us a little bit about yourself. How are you involved with self-determination? Why did you join the SD Network?
Julie is the mother and legal guardian of Emily who has different abilities. She joined the Self-Determination Network to see if she could get ideas for Emily to be more self-determined. “Given that she is quite challenged in terms of using her mind and body, I wanted to learn whatever I could to work around limitations,” she explains. When she obtained guardianship, she felt a strong obligation to help Emily have control of her life. This weighed heavily on her, and she tried to find more ways to help Emily make her own choices. One way that she does this is considering Emily’s response to an activity. If she doesn’t want to do something, Julie will give her five minutes and then try again. She says, “many times, she just doesn’t like change and is comfortable where she is.” Julie explains they don’t always have a way to communicate the new activity to Emily, so she doesn’t know that it will be fun (or necessary). Julie shares that Emily is deaf and blind. They use some hand-under-hand signing with her. “If she doesn’t want to “hear” what we are telling her, she puts her hands behind her back and emphatically shakes her head no” Julie adds.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Julie is excited that the weather is finally warming up. This allows Emily the opportunity to do what she loves best—go for walks in her wheelchair and sit in the screened porch and enjoy the outside.
What tip or resource would you like to share with people who want to be more self-determined?
To help other parents help young adult children with self-determination, Julie suggests to offer options and wait times when possible. She encourages parents not to just “do things for them” without explaining what you’re going to do and why. “When Emily doesn’t want to put her coat on, I sign “It’s cold outside. Coat on.” Instead of just pushing her arms through the sleeves. Sometimes, that’s all she needs to decide that she will wear her coat,” she explains.
What are some of your hobbies?
When we are not quarantined, Julie shares that Emily goes to an adult day program. There, they offer opportunities to socialize, practice skills and be in the community. Emily joins activities like a trampoline park, swimming, shopping, and outdoor walks. She is well-loved there, and we have found awesome caregivers who can provide respite for parents. They take her to restaurants, clay class, and other activities. Julie adds that Emily loves to be outdoors, when it is nice out. She enjoys the sun and breeze on her body. She has a hot-tub (from MakeAWish) that she really loves. “She has special water wings that help her float independently and I can tell that makes her happy,” Julie says.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.