Category Archives: Community Participation

Lead with Love

If you have a disability or are the parent or guardian of someone with a disability, then you are very familiar with assessments for eligibility of services. These assessments are designed to identify whether  or not an individual requires support of some kind which would then lead to the kinds of intervention or available services. Assessments can be just a few minutes long or take hours and hours and require you to answer hundreds of questions.

As the parent of a young adult with severe autism, I have sat through my fair share of assessments and can assure you that they usually are not fun. This is mainly because the whole reason for the questions is to determine what my child can not do, what her weaknesses are, and why she needs support for daily living, etc.

No one wants to have to spend time focusing solely on their child’s weaknesses, because, despite the truth off all the information, this does not define our child, it is just a part of who they are. Unfortunately, it is the only part that is usually relevant during an assessment.

Recently, this idea of assessments came to mind when consulting with a local small church. I met with a very kind group of people who wanted to discuss how best to support a young person with severe autism. This is the kind of situation I get calls and emails about most frequently as Director of FIN. Due to the challenging behaviors, people leading religious education programs, Sunday schools and other children-focused ministries in churches and synagogues are often at a loss as to how best to include children with autism.

Discussing the situation of inclusion for a young child with autism always brings me back to when my daughter was nine years old. We had just started attending a new church and I was working with the director of the religious education program on how to understand and include Samantha. Even though this was over 10 years ago, I remember it like it was yesterday. Do you know what sticks out most in my mind? The initial response from the director of RE. She didn’t ask about all the challenges and how we were going to accomplish including Samantha into Sunday school classses, she just said, “We will figure it out” and asssured me that the church would help. She asked me what Samantha liked to do and what she was like at home. I felt that Samantha was going to be loved and appreciated because of those questions, and I was right.  

The small group I was asked to join was assembled to address and develop strategies to include the child with autism. I have no doubt that they too want what is best for this child and family, as well as the congregation as a whole. I arrived with a small stack of books, resources from some of my favorite authors like Barb Newman, Jolene Philo and Shelly Christensen who have detailed suggestions as to how best to develop support and develop a positive inclusive environment. I brought along some Joni and Friends resources too and I threw in David Morstad’s latest book, “Whole Community” for a big picture look at the importance of developing inclusion.

It was an informal meeting and the group leader jumped right in with some ideas they had been thinking about and the conversation they wanted to have with the parents. As I listened to all their suggestions, it occurred to me that this well-intentioned meeting felt like a group that was assessing and solving a problem, much like the assessments I go through with my daughter to receive services.

Eventually, I chimed in with the suggestion that we back up to the initial talk with the child’s parents. How would I feel if members of my church started a conversation about my daughter with questions about her weaknesses, about the challenges and how to address them in the Sunday school class? I am pretty sure it would feel like an assessment. What is wrong? What are the weaknesses? How do we fix it or what do we provide to make this work?

I made the suggestion that perhaps they could start by asking the parents what their child’s strengths were? What does he do well? What does he like? Yes, the challenging behaviors do exist and need to be discussed to find a way to best support and include the child, but this young person is first and foremost a child of God, with their own set of gifts to offer the community.

The suggestion was noted and appreciated, I think. The group was a well-educated, smart and loving group of people who are all interested in what is best for this individual child, family and the rest of their children in the congregation too. I was glad to be a part of the conversation and hopefully had some good suggestions and helpful resources.

But what I came away with personally was an important reminder of what I believe we all must remember as we go about the work of developing supports and inclusion in our faith communities for people with disabilities or special needs. In addition to learning and utilizing best practice strategies to help our children be included in congregational activities, which very often means religious education classes, we must always start by seeing the person as a precious child of God, a person that brings their own gifts, talents, and special qualities to the table…and we must keep in mind how loved that individual is by their family and by God. We must lead with love.

 

“Julia” and Autism Awareness and Acceptance Month

When you are part of a family who has a member with Autism, the month of April is going to mean something to you. You may be the person who embraces Autism Awareness and Acceptance month, sharing everything on Facebook that you see or maybe you have an opposite reaction and can’t help but feel a bit weary of the need to constantly promote awareness. 

But whether you have strong feelings one way or the other or are ambivalent about the whole idea, the world (yes, the entire world) has embraced April as Autism Awareness and Acceptance Month and I believe it is here to stay.

With that in mind, I began a very intentional Facebook campaign in April on our Faith Inclusion Network Facebook page. My goal was to take 30 separate photos of individuals, families, businesses, faith communities and other organization representatives that are involved with FIN and somehow, either directly or indirectly, support individuals affected by autism. My ambitious goal was to post every day throughout April.  What I needed, however, was something fun to add in the mix.

“Julia” at taping of interview with Eggleston Services on WNIS 790

That is where “Julia” came in. Julia is the fairly new Muppet on Sesame Street that has Autism. The introduction of this character was highly praised by most of the Autism community a few years ago. I was thrilled when I learned about her, not only because I appreciated that Sesame Street was including a friend that has Autism,  but because Julia is a girl, and there are not as many girls on the Spectrum as boys.

So, I began my quest, emailing and seeking out FIN friends willing to pose

Karen Jackson and daughter Samantha

with Julia. She lived in the car with me and for weeks we traveled around the area to synagogues, churches, homes and businesses, posing inside, outside or wherever it worked. I joked with friends that I really didn’t realize how time-intensive this project would be but I  enjoyed the whole experience immensely.

There were several surprises that made my quest with Julia so joyful and positive. The first was that everyone, and I mean everyone, adored this little toy character. Julia somehow brought a huge smile to everyone’s face immediately, adult or child, big or little, even if people didn’t know who she was at first, they seemed to love her right away.

The second surprise was the encouragement I received from everyone who I was able to photograph. A hug, a few kind words, it all energized me and made me feel very grateful to be a part of this community. In fact today, I took the photo of Rabbi Panitz at Temple Israel, which was a particularly adorable picture with him posing with Julia and a toy Torah. We didn’t have much time as we both had to get to other places, but his words right before I left; “I’m so glad that we’re friends”, are still

Rabbi Michael Panitz of Temple Israel, Norfolk

reverberating in my mind, a reminder that I have made some long-lasting and important relationships in my work with FIN.

As I look back over all of the photos of FIN friends and supporters, I am struck by another and maybe the most important aspect of this little Facebook project. Inclusion is not only relevant in our society today; inclusion is absolutely vital to making our communities the best they can be. Julia strikes a happy chord with so many, I believe, because she serves as a reminder of simple childhood joy and the acceptance of all people, regardless of disability, diagnosis or any other “difference” that makes them stand out. We want the “Julias” of our community to be well-known and well-loved, and I believe there is a lot of love and support out there. But I am not naive. I also realize that not everyone has positive inclusive experiences, whether in faith communities or any other places they venture to go. That is the work that FIN and other organizations in our community undertake every day.  Until everyone in our communities feels loved and included, we will keep working.  

Many thanks to Julia, Sesame Street and all those who took a few moments out of their day to smile with me. Keep up the good work!

Blessings,

Karen Jackson

 

 

 

 

TAMW-2019 Conference-A Lesson About Community

The FIN Conference that just took place on March 7-8 marks my 6th opportunity to be the lead in organizing a faith and disability conference. That All May Worship (TAMW)-2019, The Art of Inclusion was going to be the best event ever. I was thrilled with the theme related to another passion of my life, art and music, and started working on developing this event back in the early summer months.

I don’t want to give you the idea that it wasn’t a great training event. We had our biggest group of national faith and disability leaders yet be involved and our biggest number of conference attendees, not to mention our first ever Welcome Dinner to kick it all off. These talented disability ministry leaders, authors, researchers and speakers, many traveling by plane to attend, gathered for a retreat at Sandbridge, VA during the day on March 7 and most stayed to play a role at the conference sessions on Friday, March 8.

Group participating in FIN National Faith and Disability Retreat

We also reached a lot of people who are new to faith inclusion; vendors that represented arts organizations, people who traveled not just from the next town over, but from other states, to be with us to learn and engage in the conversation.

But what I elude to is the unexpected experiences related to this year’s event. As I continue to understand my role as an advocate, the leader of Faith Inclusion Network and a member of my community at large, my expectation for the conference and my appreciation for what I learned really affected me in a profound way.

If you were present at the very opening of the conference, you might have sensed a touch of chaos. That is primarily because of what transpired the evening before. As a group of four national guests were driving back from the Welcome Dinner at The Founder’s Inn and Spa to the Sandbridge house, they were in a car accident. An electric pole, hit by a drunk driver in front of them, landed on the top of the van. Luckily, no one was injured in either car but all of our guests were pretty shaken up.

The next morning, two of those passengers were not able to participate in the conference, including one of our breakout session presenters. We spent the precious prep time in the morning working out how to handle this and other conference staffing issues, not to mention my worry over how they were feeling.  Everyone was a bit out of sorts and the impact of “what could have happened” weighed heavily on many of our retreat guests and presenters, including myself.

The result of bringing together amazing, compassionate and caring people coupled with the kind of trauma several of them experienced with the car accident and you have a recipe for something remarkable. In the throes of taking care of all the people involved in the accident, I observed something that is really at the core of what FIN seeks to develop: community in action.

As soon as we all got word that our friends were in trouble, many of the group jumped up to help immediately. I was not feeling emotionally strong enough to drive by myself back to the scene of the accident to pick up our guests, so another guest stepped in without hesitation to drive us both back, while another person went ahead to check on them.

I immediately got word to the rest of the group who were praying and preparing for whatever needed to be done to care for our friends. Thoughts of any of them needing to be hospitalized filled my mind. Luckily, not only did everyone check out okay physically, but the rented van was drive-able and they all headed back to the retreat house.

As one person helped nurse a guest who was experiencing shock, several of us came around the driver of the van that was hit, to offer comfort, support and just a listening ear. It was a late night for many of us as we turned in, anticipating an early morning start to the Friday sessions for the conference.

All Conference participants engaging in discussion at the afternoon Community Conversation

The next day, our professionals got to work. Lisa Jamieson stepped in to give a presentation with no preparation and several community conversation host facilitators had to be changed around. What was amazing to me was that everyone did this without hesitation, only wanting to help make  sure all went as smoothly as possible.

For a hyper-planner like myself, the changes were a challenge but I learned that flexibility and creativity are key. Talk about ironic, huh? The whole focus of our conference, the theme of creativity and resolving tensions in community and in disability ministry was the very lesson I learned in dealing with the unexpected during this conference.

Why did this experience make such an impact and why tell this story? I believe that not only did we experience God’s protection (the results of this accident could have been so much worse) but we also experienced the true essence of community; a diverse group of people coming together, sharing their gifts and supporting one another through life’s joys and challenges. This is a big part of what FIN’s mission means. To develop awareness and support families affected by disability in our faith congregations is to intentionally develop a community, a community where everyone takes care of everyone else and a community where everyone belongs.

We are all safely back to our regular lives now, working in schools, offices, businesses. If you attended the conference, I pray that you felt that community and learned something you can take back with you to your lives and congregations.

Praise be to God!

Karen j.  

 

 

Acceptance

“I’m a bit nervous”, I confessed to my husband as I prepared for my speaking engagement at Temple Israel in Norfolk, VA.  Despite the friendship, support and encouragement I have received from Rabbi Michael Panitz over the past 10 years as I worked to start and develop Faith Inclusion Network, I had actually never been asked to speak there or for any other local Jewish congregations.  Would they really be interested in hearing some of my story? Would they accept and welcome me, a Catholic Christian, to be a part of their service?

I prepped my daughter’s caretaker and headed over in plenty of time to hear some of the beginning of Temple Israel’s Disabilities Awareness Shabbat. February is designated as Jewish Disability, Awareness, Acceptance and Inclusion Month in our country and I had been asked to share a few words about inclusion as both a parent of child with a disability and the leader of Faith Inclusion Network.

When I arrived at Temple Israel, I was immediately greeted by a friend I already knew from the disability community; a mom who shares a similar parenting journey. Others I didn’t know smiled warmly, offering words of welcome and I immediately relaxed.

My short talk was titled, “Acceptance”, a word that was recently added to the national Jewish inclusion effort for their 10-year anniversary. Jewish Disability Awareness, Acceptance and Inclusion month is celebrated and experienced around the country, due to the efforts of people like Shelly Christensen, one of the founders of this effort and also one of Faith Inclusion Network’s national board advisers.

Karen Jackson and Claudia Mazur

It didn’t take long for me to recognize that the Temple Israel congregation is a very accepting community. People with various types of disabilities dotted the congregation and several individuals affected by disability participated by leading prayers during this Disability Awareness Shabbat. It did not escape my notice that the congregation was also very accepting of me, a guest to their worship time.

After the service I joined members of the congregation for lunch, sharing stories with a few other parents who have children with disabilities. The word “acceptance” floated in and out of our conversations. The feeling of community was strong and encouraging.

Rabbi Michael Panitz and K. Jackson

More than ten years ago, I reached out to many people in the Hampton Roads community, including Rabbi Panitz, to ask the question, “What can be done to make our faith communities more inclusive?” The answer is reinforced again and again in the opportunities I have had to visit and speak with congregations, sharing and listening to stories of welcoming and acceptance. We can all make a difference with inclusion efforts when we begin by being open and accepting of people who may be different in some way. Acceptance is the first step towards inclusion.

Thank you to Temple Israel for your kind invitation and welcome, your understanding and demonstration of inclusion and for choosing to accept individuals and families affected by disability.

Shalom.

Karen j.

A Christmas Extravaganza

As most people are aware who know me through FIN and the disability community, my daughter Samantha is severely affected by autism. The past couple of years especially, have been a struggle as we help her through some challenging anxiety and medically related issues. For Samantha and many other people in our community with severe developmental disabilities, it can be very difficult to participate in community events and gatherings. Instead of risking a meltdown or maybe not even being able to get in the door because of anxiety, we opt to stay home.

Yet the social, community-loving person in me never gives up and I am grateful to the many organizations and faith communities in Hampton Roads that are striving to be welcoming, understanding and inclusive, making it easier to participate in the community.  From organizations like Virginia Stage Company that is offering a sensory-friendly performance this week (Theater for Everyone-Wed. Dec. 12) for people with disabilities and their families, to faith communities who intentionally welcome and celebrate people families affected by disability, I sense a developing tide of awareness in our community. I share the following story to encourage all who are working hard to develop awareness and provide opportunities to support individuals and families affected by disability. Thank you and God bless!

Karen Jackson,

Executive Director, Faith Inclusion Network

A Christmas Extravaganza

The other night, my daughter and I attended a beautiful gathering put on by the youth of Grace Community Church (EY2S Missions) in support of The Chosen Ministry, a social ministry for adults with disabilities that Samantha and I attend regularly. This “Christmas Extravaganza” included dinner, music, fellowship time, preaching and even a modern, adorable Christmas play. It truly was an extravaganza, but so much more in terms of their efforts to make everyone feel loved and welcome.

When Samantha and I arrived at the church, we were greeted by at least a half dozen members of the youth group, all at the door with the sole job of welcoming us to the gathering. Samantha shyly made her way into the well-lit church, her eyes sparkling at the sight of the holiday lights. She loves all things Christmas and I could tell she was excited to be at a party!

Samantha and Samantha posing for a quick picture at the end of the evening.

We made our way in the gathering room and were immediately befriended by a young intern named Samantha. She works with Pastor Jeff Montgomery coordinating the work with their youth and EY2SMissions. After just a few moments, it was clear to me that she has a heart to love and connect with people with disabilities. I enjoyed watching her speak with my daughter, unfazed that Samantha was not speaking back but none-the-less making a connection.

The evening continued with dinner served by the joyful and engaged youth. We also listened to the testimony of a friend of ours, Jenny, who has a disability and also a gift for sharing her faith and her story. “How perfect”, I thought, “that this gathering encourages people affected by disability to not only participate, but to lead!”

Jenny and Pastor Jeff

I enjoyed my conversation with the other people at our table. A sweet couple next to us shared that their son has Aspergers. They live close to the church and participate in many of the activities offered. I was thrilled to observe that their 15-year old son had a part in the youth’s entertaining Christmas play. Even though we just met, I could tell these parents were proud of their son for participating on stage. He really did a great job!

As the evening progressed, I realized that Grace Community and their youth were living out their faith and doing everything so right in the way they strive to love and include everyone.  Regardless of the person’s abilities or behaviors, the feeling of acceptance was palatable.  From the warm welcome to the understanding of inclusion, this place is actively building leaders that will one day be engaged, understanding adults. This gives me tremendous hope and it was a blessing to be a part of the evening.

Members of EY2S Missions Youth Group at Grace Community Church

Samantha didn’t want to leave that night, and who could blame her? She felt welcomed, accepted and understood. (And so did I.) As the youth were busy cleaning up and putting up the tables, Samantha and I reluctantly headed out, feeling the warmth of true acceptance. It was an extravagant night, and we feel blessed to have participated. Thank you, Pastor Jeff and the EY2S Missions team. God bless!

 

“Putting Faith to Work” and why we need YOU in the Community Conversation, “All Play and No Work”

Last year, the National Collaborative on Faith and Disability released a guide called, Putting Faith to Work: A Guide for Congregation and Communities on Connecting Job Seekers with Disabilities to Meaningful Employment.  I was immediately struck with the realization that not only was my own daughter (who has a disability) transitioning soon to life beyond school, but there are hundreds and hundreds of people affected by disability in our community that cannot find any work or volunteer opportunities. The Putting Faith to Work Project ignited in me an excitement to invite our faith communities to go beyond what they offer for inclusion efforts in their congregations on the weekends and envision how faith communities can have an impact on “the other six days” for persons who live with disability.

The opening letter in the guide states this invitation beautifully; “The Putting Faith to Work project empowers faith communities to support people with disabilities as they find and maintain employment aligned with their gifts, passions and skills. This pathway to work is forged by tapping into the person network, creativity, and commitment existing within any congregations. Faith communities have a wonderful opportunity to enhance the lives of many people with disabilities, their families and their communities by helping people find meaningful jobs, assume valued roles, and shared their talents with other.”

On Friday, May 18, 2018, Faith Inclusion Network, in partnership with Eggleston Services, Enoch Baptist Church and NAMI Virginia Beach will be offering an opportunity to discuss the topic of employment and disability at the Community Conversation and Networking Event entitled, “All Play and No Work”.

If you or your faith community are looking for a way to begin or develop your efforts to supports individuals and families affected by disability in a unique and forward-thinking way, I encourage you to join us on May 18 learn not only what our community has to offer right now in terms of employment for those affected by disability, but also how you and your congregation could make a life changing impact on a persons who just wants to have the opportunity to contribute and use their gifts.

Hope to see you there!

Blessings,

Karen Jackson

Executive Director

Faith Inclusion Network

 

Essay Contest: Blog #4 Brittany French

Brittany was one of the first people that befriended me many years ago when my daughter and I started attending The Chosen Ministry. In her shy way, she would ask about Samantha and then about me, always remembering details that many would miss if they weren’t really listening. What a gift!

FIN would like to both thank and congratulate Brittany for sharing her story and being the winner of our very first essay contest.  As you read her essay you will realize that the remarkable thing about this story is how simple it really is…a church doing what many others do; reach out to the community and educate children in the faith.  What made a difference in Brittany’s life is how she felt and the continued acceptance as a person with a disability as she grew up in the church.  Even more wonderful, being a member of the congregation eventually led to finding a job nearby.  Wouldn’t it be wonderful if more adults with disabilities were able to find work through the natural connections we make in our congregations?

So again we thank you, Brittany for not only writing this essay, but presenting it at our Gifts of the Heart Gala on March 11. You did a great job! -K. Jackson

My Faith Journey

Author Brittany French with Karen Fox who leads The Chosen Ministry in Norfolk

by Brittany French

The hospitality of a neighbor inviting me to church and the hospitality of the church folk accepted me even though I have several disabilities and this changed my life forever. I was three years old when a neighbor invited my twin sister and me to attend Sunday School at a church down the street from my house. My twin sister does not have the intellectual and physical disabilities that I live with every day. I began this adventure in the classroom with two wonderful teachers that made me feel loved and wanted.

In Sunday School we did arts and crafts related to Bible stories, we memorized verses and sat on a rug to hear the bible story of the day. My favorite event at church was attending Vacation Bible School in the summer. I loved playing outside and being with the other children. The other children did not treat me differently because of my disability. That made me feel good. I was always accepted for who I was. In fact, my church has five people with disabilities in the congregation because this church accepts and welcomes all people who come in.

Throughout the years, I continued to go to Sunday School each week. My faith grew stronger as I grew older and began to understand what the bible stories were saying. As an adult I joined the church I had been going to for so many years. This was a place I was accepted as God’s child, made in his image. I am what God wanted me to be. The church has helped me accept my disabilities and believe in myself.

I now have also joined “Chosen Ministry” which is a group that works with intellectually disabled adults. I love having other disabled friends. They understand some of the challenges I face. Being a part of “Chosen Ministry” has helped me see my disabilities in a different way. I am grateful to be who I am.

After several years of looking for a job, and many hours of prayer, I got a job in the daycare center which is next door to my church. Knowing that I am helping others is an answer to my prayers. My faith continues to grow as I work with little children and see how they love everyone.

Note: Brittany attends Third Presbyterian Church in Norfolk, VA

Brittany with friend Angela West at the Gifts of the Heart Gala-2018

 

Essay Contest: Blog #3 Colleen Stefanowich

I have known Colleen and her parents through Young Life Capernaum and then The Chosen Ministry for many years and have always appreciated her quick smile and willingness to help.  Colleen is a friend to many, including myself and  my daughter Samantha who has autism.  Whenever we visit Church of the Holy Family‘s Chosen Ministry events and run into Colleen, I can be guaranteed a huge hug and that she will go out of her way to say hello to Samantha, understanding that Samantha cannot respond in kind but accepting and so loving all the same.  

It doesn’t surprise me then, that Colleen is so involved at her church and that she has an incredibly positive attitude. Thank you Colleen for submitting this essay and allowing us learn a bit about you. -K. Jackson

MY INVISIBLE DISABILITY

BY COLLEEN STEFONOWICH

“That is why for Christ’s sake, I delight in weaknesses, in insults, in hardships, in   persecutions, in difficulties. For when I am weak I am strong” (2 Cor 12:10)

Growing up with a disability wasn’t easy but having two siblings that I am close to helped even though they couldn’t take it all away. But them listening to me helped me growing up.  I felt bad for them, but I also thought they had it made.  I felt bad for them because they didn’t choose to have a sibling with a disability but they got one anyways. They also had to watch struggle with things that came easy to them. I also had to do things a bit differently than they did growing up. They never treated me any differently because of it.

I thought they had it made because in school, they were able to be in classes with other normal kids. They also got to do some rites of passages in life I never got to do. Things like get their licenses and go to a university.

I have a disability called dyscalculia, which is not a very well known or a very common disability, not very many people have heard of it. Dyscalculia is a math disability, so everything that has to do with math isn’t easy. For example, things like telling time (unless it’s a digital clock), making change, counting money, doing math , reading music. Reading certain numbers will actually overwhelm my brain because it’s way too many numbers, and my brain will   actually shut down because its way too many numbers too look at.

I was recently diagnosed with a vision problem called keratoconus.Basically, that’s just a big fancy word  for cone shaped cornea, which causes major vision problems, and potential blindness. I actually had a procedure done on November 15,2017 to help salvage the vision left in my right eye.

My church family is nothing short of amazing!! I sing in the choir, help with children’s church, and sometimes Sunday school by being a buddy for other students with disabilities. There have been some choir members   who give me rides home from church and practice. I have another choir member who so graciously helps me up and down the stairs from the choir loft for communion. I also have another choir member who has typed up the words to the songs in a bigger font so I am   able to see the words better due to my low vision. They have all done this without anyone asking them to do these things. All of these things have made it possible for me to feel an important part of the choir.

I love my Church of the Holy Family!