Category Archives: Faith Inclusion Network Activities

“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.  

 

 

“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

 

A Call to Encouragement

Last Thursday evening over sixty people from our community gathered at Second Presbyterian Church, Norfolk to support FIN and learn more about the current work and vision of our growing organization. Beginning our 10th year, this is an important and exciting time in the development of our small non-profit, working towards our dream of making the congregations of Hampton Roads the most inclusive and welcoming in the country-envisioning a world where all people affected by disability are accepted, included and celebrated in our faith communities.  Many, many thanks to members of Second Pres., volunteers and supporters who made the reception a wonderful first time event.

In the wake of this successful gathering however, I began to feel extremely overwhelmed.  There is so much work to be done; challenges of time, finances and the daunting task of helping our community in general understand what FIN is about seem almost insurmountable.  I needed to take a moment or two to understand what God was doing with all of this…and so I turned to my Bible.

Members of FIN Clergy Council: Catherine Monroe, Jack Howell, Michael Panitz, Craig Wansink, Wendy Wilkinson and Michael Daniels

Members of FIN Clergy Council: Assoc. Pastor Catherine Monroe, Pastor Jack Howell, Rabbi Michael Panitz, Pastors Craig Wansink, Wendy Wilkinson and Michael Daniels

I found myself in the book of Nehemiah.  It had been a long time since I had read about Nehemiah’s quest to rebuild the wall around Jerusalem, and I was reminded that it didn’t exactly go so smoothly for him.  Workers got tired and discouraged, and were even threatened by those that opposed building the wall.  Although the challenges of building FIN are obviously very different, Nehemiah’s words jumped out of the page for me: “Don’t be afraid of them, Remember the Lord, who is great and awesome…” Oh yes, my heart agreed, God is both great and He is awesome. Just the other evening, FIN board member Pamela Tanner was talking with a guest at the reception and shared, “What I love about FIN is that it is a God thing…we certainly couldn’t have come this far without God.” I couldn’t agree more.

I also related to Nehemiah’s words in Chapter 4:19-20: “The work is extensive and spread out, and we are widely separated from each other along the wall. Wherever you hear the sound of the trumpet, join us there. Our God will fight for us!”  I immediately related to that idea, and thought that maybe FIN is called to be that trumpet. We go out into our faith communities, many working hard to diligently embrace the work of inclusion of people with disabilities in our congregations, yet we can feel alone in our efforts sometimes.  FIN’s events, whether they be receptions, workshops or conferences, herald the opportunity to come together to learn from, support and encourage one another.  We are stronger together and our God will fight for us and with us!

As FIN moves forward, I ask that you consider three ways to support our efforts and work in the community.  All of them are equally important.

  1. Share. Use our Facebook pages, share emails, tell your acquaintances, friends and co-workers that there is an important effort building in our community; an effort to ensure ALL people are welcomed and accommodated in our faith communities, an effort to ensure that all people have the opportunity to worship and be an active part of our congregations.    https://www.facebook.com/FINhamptonroads/ and https://www.facebook.com/ThatAllMayWorship/
  2. Become a member. Visit the membership page and choose one of our four membership circles. http://www.faithinclusionnetwork.org/memberships/
  3. Pray. As an organization based on faith, we do not underestimate the power of your prayers. Please pray for our efforts to raise awareness, educate and connect our community.

Thank you and hope to see you at our signature event this year, That All May Worship-2017 Pathways to Powerful Inclusion Conference on Friday, March 10 at Church of the Holy Family, VB- https://thatallmayworship-2017.eventbrite.com

 

 

A (Tough) Day in the Life

20160324_190829 This summer, I witnessed my beautiful 18 year old daughter completely lose control, her anxiety escalating to the point she was laying on the sidewalk outside her day support building, banging the back of her head on the cement.  I was helpless, not strong enough to keep her from hurting herself, too distraught to pray.

When she was finally inside our van, the violent episode continued.  I had no other option than to drive directly to the ER.  I prayed the whole way there that she would not get the car door open or hurt me while I was driving and cause an accident.

Even through the whole distressing episode, I realized we had amazing support. Samantha’s dad came as fast as he could from work, her caregiver came to the hospital for back up support. The staff at the hospital were both professional and compassionate.  I did not try to park but pulled up in front of the ER doors and asked for help.  There were at least one attending nurse with us at all times.  Samantha’s neurologist came from another location to check on her and help us come up with a new med plan.  The social worker made sure I left with numbers and places for crisis support. IMG_0575

This was one day in our life…admittedly a tough one.  Although this was the most distressing and traumatic we have experienced in a while, the underlying stress continues as we try to figure out how to help her and also keep everything else (work, school, family time, ministry) going.

As I think back to that difficult day this past summer, I find myself asking, “How do other people cope?” I posted a quick picture of Samantha and her neurologist on Facebook the evening after that difficult day.  We were immediately flooded with comments and support.  I am blessed. We have an entire community that cares.  Yet I am still feeling the affects of the traumatic experience and some days, I am barely able to hold it together.

And it gets me thinking…what do people do in this situation that do not have this kind of wonderful medical care and supports?  What can we do to keep caregivers from getting to the breaking point, before they are in a crisis?  What are we as a community going to do about this?

There are many people in our community that are caregivers.  Some may care for children (young or adults) with disabilities, others may be caring for elderly parents or a spouse with a disability.  Whatever the situation, these caregivers need many different kinds of support, from friends and family, to professionals. Often, they are people who do not even show outward signs of struggling but are none-the-less hoping for encouragement and a bit of help.  Faith communities and our area’s congregations may be one answer to providing that encouragement and help.

If you would like to learn more, please join us on September 29 when Faith Inclusion Network, in partnership with the Alzheimer’s Association of Southeastern Virginia, is holding an event to discuss the ways in which faith communities can and do play a role in supporting caregivers.

You can register for this free event called, Caring for the Caregiver at https://caring forcaregiver.eventbrite.com

And thank you to all of our families’ supporters; friends, acquaintances and professionals. I know I couldn’t do it without you!

caring for caregiver

 

We are ready, how about you?

“What more can I do?
This is the question I dared to pray way back in January 2008. I wanted to know how to respond to the overwhelming compassion I felt for other families going through the same experience we were-families struggling to include their child with a disability into the life of their faith community. Congregations needed to be educated, individuals and families needed to know there was help…and hope.0314162006a
Nine years later and countless conversations, conferences, events and educational opportunities later, my passion for working in the faith and disability field is well developed and I have a new question on my prayer list;

“What more can WE do?

Because this is about community… our community. As members of this community, we need to decide what we believe to be acceptable and in the best interest of all persons, regardless of their perceived abilities or disabilities.

Should people with disabilities be able to access churches, synagogues, mosques and other places of worship in our community? – Yes!

Should individuals affected by disability and their families be able to enjoy and participate in corporate worship?Of course!

Should persons affected by disability get the chance to use their gifts to serve and get the opportunity to develop friendships with others in the congregation? – Absolutely!

If the amount of phone calls and email inquiries FIN has received recently are any indication, our local faith communities are beginning efforts towards better inclusion at a faster rate than ever. Small and large congregations are beginning to ask the questions and seek resources to better understand how to welcome and accommodate everyone.

But there is still much work to do done. Alarmingly, I also get the phone calls from distressed individuals and  parents with discouraging stories to share. Faith communities that did not understand, that excluded, that are not even accessible never mind welcoming.
So the question remains for FIN and for all of our faith communities…
“What more can we do?”

20160729_135518

Today I put the finishing touches on the very first dedicated office space for Faith Inclusion Network. Second Presbyterian Church, already home to our unique Faith and Disability Resource Center, has expanded their generosity and partnership by giving FIN our first public office. It feels like a turning point. FIN is ready to up our game. We want to make an even bigger impact on our community, both locally and nationally. We want to both help local congregations figure out the answer to the question, “What more can we do?” and make Hampton Roads an example for the rest of the country.
We are ready…how about you?

You can contact FIN at http://faithinclusionnetwork@gmail.com to be added to our email list, “Like” our Facebook page at www.facebook.com/FINhamptonroads and check out our website at http://www.faithinclusionnetwork.org Hope to hear from you soon!

#SITD2016-A personal story about the Summer Institute on Theology and Disability

 

I arrived at the Grand Rapids airport at 10:30 pm on Sunday evening somewhat anxious and already quite exhausted. I still needed to connect with someone I didn’t know, rent a car and drive us to Holland, MI, a 40 minute ride to the Summer Institute on Theology and Disability at Hope College. A few days before the trip, my daughter needed unexpected minor surgery. This meant an overnight stay in the hospital amidst much worrying and prayers, not to mention a quick rearranging of schedules. Let’s just say, I was not in a good mental or physical state upon my late arrival in Michigan.
That all began to change, however, the moment I spotted my friend, Shelly Christensen1039at the airport. Shelly, who is from Minnesota and is a personal friend, FaceBook friend and National Adviser for the FIN Board of Directors, gave me a big hug, exclaimed “Karen!” and then immediately asked, “How is Samantha?” I don’t know which made me feel better; seeing a friendly face after a long day or her concern over my daughter (she knew about hospitalization from FB) and how I was handling it all.  Well, yes I do. The support from a fellow special needs mom and disability advocate was an incredible encouragement. Shelly decided to come with me so we found our new friend Janine and headed to Holland.
The fun continued when once at the college, Shelly couldn’t get into her room. We decided it would be easiest for her to bunk with me for the night and at 2:00 am we turned out the lights and said good night.
By 7:30 am I was headed to breakfast, but not before I discovered that another good friend, this one a wonderful author and speaker, Jolene Philo was my suite partner. “Hi Jolene!” Shelly and I exclaimed at the bathroom door. More hugs and smiles.
We all headed down to breakfast and enjoyed reunions with more friends. David Morstad and Erik Carter were also attending SITD. The chance to talk with all three of these national FIN board advisors at the same time would come a little later in the day, but for now, hugs and a chance to catch up on personal lives was so much more important and meaningful.

Erik Carter, Shelly Christensen and David Morstad, FIN Board Advisers, with Karen Jackson, FIN Executive Director

Erik Carter, Shelly Christensen and David Morstad, FIN Board Advisers, with Karen Jackson, FIN Executive Director

Monday and Tuesday’s presentation were just amazing. How often does one get to hear from people like Erik Carter, Bill Gaventa, Hans Reinders, Tom Reynolds, Darla Schumm, John Swinton, Todd Billings, Tom Boogaart, Ben Conner and Randy Smit all in the course of a few days? “Yes, yes, yes”, I thought, over and over again. These people were here in Holland to share their knowledge and their passion and I felt so grateful for the chance to be a part of the whole conference.
By Monday night I had no business going out after dinner in my overly tired state, but who could resist the chance to hang out with the girls? New friends and old, the pub called and we stayed out late, just like college students (and we are all past college age, I assure you!) So much fun after a full day.
As we meandered back to our dorm, Shelly and I spotted a new arrival. “Jeff!!!!!! We screamed, greeting our friend Jeff McNair who had just arrived from California. Jeff accepted this overly zealous greeting with his usual humble attitude. “The girls always greet me like this!” he bragged with a smile. Another few minutes and I finally gave in and headed to my room. Time to prepare for the next day.
Tuesday was my opportunity to share by leading the opening worship time and then later presenting about FIN in a break out session. Although I felt both went well, the experience of leading the Morning Prayer and Meditation time was extremely meaningful for me. 20160524_084112_001Performing music at the Institute provided a chance to fuse my passions for music and disability work as well as experience another wonderful chance to bring others together, this time in song.
At one point, when leading the singing of the song “Let’s Share a Journey”, a song that intends to capture the importance of faith and community, I was almost started crying. To hear the 100 or so members of the audience singing “Let’s share a journey, the way it should be, let’s share a journey, you and me…” together was incredibly moving. I knew those lyrics and melody were given to me by our great and wonderful God-not my words at all but a gift to share. This will always be a treasured memory.


More amazing presentations and opportunities for fellowship filled the rest of the day. After the Tuesday afternoon prayer service, Anne Masters, another FIN friend who is from New Jersey, invited me out for a stout. 20160524_175852By the time we made our way to the Holland Brewery, we had a nice little group together. The night continued in much the same way, meeting up with people and making connections and starting friendships that will continue, I hope, for years to come. 20160524_175841

5:00 am came quite early on Wednesday. I was fortunate to have Jolene along on the ride to the airport. We chatted like old friends and parted quickly at the airport, both of us in a hurry to catch our flights. My trip back to Norfolk was fairly short and uneventful. I was glad to head back home and see my family.

Conferences are always fun; the combination of learning and engaging with others is an important part of many people’s development in their chosen fields. I went to the Institute expecting to hear from some great teachers and speakers, to see friends and meet new people who are also passionate as I am about faith and disabilities inclusion. What I didn’t expect was to experience an unparalleled camaraderie, moment upon moment of meaningful discussions, hilarious stories and the love and encouragement of friends that are doing incredible work across the country. Thank you to Bill Gaventa, Ben Connor and others who put together the year’s Institute. And a special blessing to all who attended #SITD2016-may your work in faith communities around the country and the world be fruitful and filled with joy. Hope to see you again soon!

See our FIN FB page for a full album of photos at https://www.facebook.com/FINhamptonroads/

Interview #8 Shelly Christensen

april_is_autism_awareness_month_1

I initially “met” Shelly on the phone, when I called with some questions related to the inclusion of people with disabilities into Jewish communities.  She was incredibly generous with her time and, some 40 minutes later, I felt like I had a new friend in Minnesota.  Not long afterward, we got the chance to meet in person at an AAIDD conference and now we talk frequently since she is a Faith Inclusion Network National Board Adviser.  

Shelly has a lot of experience as a faith and disability advocate, traveling across the country to speak and be involved in many large Jewish and interfaith initiatives.  But what I appreciate personally about Shelly is her gift of encouragement.  I always come away from our conversations feeling wonderful!  Thank you for that beautiful gift and for all you continue to do to further the national faith and disability movement, Shelly.

Interview with: Shelly Christensen, MA, FAAIDD
Founder and CEO, Inclusion Innovations
Author,  Jewish Community Guide to Inclusion of People with Disabilities Website: http://www.inclusioninnovations.com

Question: How old was your child when he was diagnosed with autism?

Shelly: Until Jake started Kindergarten we thought that he was our adorable quirky kid. Whether he was telling an inebriated customer in my Dad’s bar to settle down or his grandpa would throw him out, or declaring that “Gone With the Wind” was his favorite book when he was preschool Student of the Week, it never occurred to me that his brain wiring was cause for a diagnosis. During his Kindergarten year my husband Rick and I carted our three sons to a family therapist to help us figure out how to keep up with the demands of family and work. Within the first five minutes of observing the five of us she informed us that Jacob seemed to have ADHD, to which I replied, “What did I do to cause it?” I didn’t even know what ADHD was! Overwhelmed by raising three kids, an 8 year old, a 5 year old and an infant, working a full time job, and dealing with the death of my beloved grandmother and my dad’s cancer diagnosis seemed almost too much to bear. The best advice I received from a good friend was “put one foot in front of the other and keep walking.” I did just that and eventually I found a semblance of new normal and realized that life will go on regardless of how you navigate it. I looked inward and realized that while circumstances had changed, I was still the same resilient soul I’d always been. And so we went through the twists and turns over the years until Jake was in 10th grade. I had decided during that time that Jake didn’t have ADHD, but nothing really fit his quirky personality and unique way of seeing the world.

Question: Can you share how you felt when you received that diagnosis?

Shelly: Asperger syndrome was not a new disability but inclusion in the DSM was. When Jake’s confirmation teacher, a child psychologist, told me about Asperger syndrome and suggested we go for a diagnosis, I immediately went online and began reading about it. It was a description of how Jake navigated the world around him, and I knew in my core that he has Asperger syndrome. He was diagnosed shortly after that. I recall the feeling of relief and of peace in knowing, and realized that while a diagnosis didn’t change who Jake is, it helped all of us understand him better, and support him better.

My three sons

Shelly’s three sons

Question: How has living with autism affected your family?

Shelly: I don’t know if life would have been any different without autism for my family. We are all unique individuals who love each other and respect each other’s way of being in the world. I think I understand a lot more about how unique each and every person is. It has helped me to think about how we are all created in God’s Image which, in my limited understanding, means that God must have so many very very diverse qualities!

Question: What is currently your biggest challenge as an autism mom?

Shelly: Patience as the journey continues toward living independently with a future of hope. It takes time and there is no proscribed schedule.
Question: What is currently your greatest joy as an autism mom?

Shelly: Jake is starting a new journey as a student in an 8 week information technology course followed by an internship and hopefully full time employment. Seeing how he has matured and taken responsibility for his choices, how kind, loving, and absolutely insightful, and funny he is the gift that keeps on giving.
Question:  Has autism affected your faith? Yes. If yes, how so?

Shelly: Many times I’ve been so angry at God. “Why me? Why my child?” I railed at God, cried, yelled, cursed. And then one day I realized that maybe God was hurting as much as I was. I realized that God had nothing to do with Jake having autism. I think God may have been hurting because the world is so unfair at times to people who have disabilities. I realized in that moment that God and I were partners and then I felt nothing but gratitude for having my faith and my beliefs. Since then I have come to believe that each of us has a purpose, and if we act as God’s partners, we will discover within ourselves that purpose. I don’t know whether God gives us a purpose or not. But I do believe that if we listen to that small voice within, then someday we will hear what it says and it will guide us to that purpose and that place.
Question: Is there anything else you would like to share about being an autism mom?

Shelly: I don’t think of myself as an autism mom. I am a mom of three remarkable men who continue to give me great joy. Each one of them continues to surprise me in their own unique ways. I do recognize that I am someone who others see as a mom of someone who has a disability who has navigated the unmapped journey and made meaning of it. I know that opening the doors for other moms to tell their stories, share their hopes, dreams and fears is more important than ever.

Jake and Eli

Jake with new nephew, Eli