Tag Archives: community

All Are Welcome

“All Are Welcome” is a well-known and well-loved Christian hymn written by prolific liturgical composer, Marty Haugen. I’ve sung it often as a member of the congregation and even led it as a cantor on a few occasions, but never did the song impact me in the way it did this past Sunday when visiting St. John Chrysostom in Wallingford, PA.

This was not my first visit to St. John Chrysostom. I wrote a piece several years ago, called “Welcoming the Visitor”. My family and I had attended a Mass at the church at Eastertime while visiting our oldest son at Swarthmore College. I was so overwhelmed with their intentional inclusion, I wrote a story and connected with the pastor, Fr. Hallinan by email.

More than a year after my son has graduated from Swarthmore, I found myself preparing to bring our youngest son to the school for an official visit on campus. I happily anticipated an opportunity to attend church once again at St. John Chrysostom…I was not disappointed.

The moment I walked in, about ten minutes before the start of Mass, I observed several people with various kinds of disabilities. Ushers and members of the congregation greeted everyone in a kind and gentle way, expressing their joy to see them. One young adult, who seemed to be non-verbal, shook hands very enthusiastically with the greeter, a huge smile on his face. It was obvious to me that he was a valued member of the congregation and everyone he encountered was as glad to see him as he was to see them.

A few more steps into the church and I noticed some signage; one an announcement about a Caregivers Support Group and another about an Autism help line. These notices were not buried among many on a full bulletin board, but prominently displayed and easy to read.

I finally found a seat in the pew and listened to the choir warm up (a folk group with guitars, bongos and several singers.)  Of the six vocalists, the soloist chosen to lead a prominent part of one of the songs was an elderly woman with an exceptionally quiet voice. She was singing in tune, but it struck me as particularly refreshing that she was the one chosen for the solo. Not the strongest or the youngest voice, but an important voice and another obvious way that this church embraces the gifts of every person.

I could go on but you probably get the idea. St. John Chrysostom is a vibrant congregation with a strong understanding of what it takes to be inclusive.

I waited a few minutes at the end of Mass so I could re-introduce myself to Fr. Hallinan and hopefully get a few minutes to talk. We ended up chatting for more than ten minutes about our shared passion for inclusion and concluded our time together with a photo (thank you for that, Fr. Hallinan!). I expressed how grateful I was for all that this church does to promote inclusion and headed out the door.

As I got back in my car to head back to the campus baseball field, one of the points from my conversation with Fr. Hallinan that resonated strongly with me kept running through my mind.  St. John Chrysostom, like many other faith communities around the country, holds a designated service especially for individuals and families affected by disability. The “Mass of Welcoming and Inclusion”, as it is called at St. John Chrysostom is celebrated the 1st Sunday of the month. (The Mass I attended, by the way, was not on the 1st Sunday of the month, it was a regular Mass without this distinction) Fr. Hallinan said that his goal is that eventually they would not need to have the Welcoming and Inclusion Mass, that all Masses would feel welcoming and inclusive! We both agreed that an inclusive service can really be a helpful stepping stone for congregations and is still important for some individual and families affected by disability.  I couldn’t help but think, however, as I left the church, that if any congregation was nearing the goal of letting go of this kind of stepping stone, it was this church.

“All Are Welcome” at St. John Chrysostom, that is for sure in both obvious and subtle ways. I am grateful for their efforts and appreciate the opportunity to be an occasional visitor. I also know that there are many Hampton Roads local faith communities doing equally awesome inclusion work and seeing great results. If you aren’t already connected with FIN, please do share with us what you are doing. Your efforts could really be an encouragement to someone else or another faith community.

God Bless.

Karen j.

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.  

 

 

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!

 

 

 

 

 

 

Essay Contest Blog Series-Blog #1

In preparing for this year’s Gifts of the Heart Gala, I was looking for an opportunity to highlight the voices of those who identify as having a disability. After all, our organization is about inclusion and the most important voice for disability inclusion efforts is (or should be) those who have disabilities themselves. Thus, in addition to our keynote speaker, Lisa Olson, who spoke eloquently about acceptance at the gala, the first Gifts of the Heart Essay Contest was born. 

I really had no idea whether or not anyone would submit an essay but we had a few things going for us. Number one, our good friend and sponsor, John Koehler of Koehler Publishing  offered up the $100 winning prize. Two, I had a vision that our winner and many of the participants would be recognized at our gala on March 11.  

In the end, we had six people enter the contest to share their own ideas of “faith” or what their faith community means to them. Additionally, we had two more writings submitted which we will also include in this mini blog series. 

All the entries were wonderful…beautiful in their own way and exactly what we had hoped for! These first two come from Ashley Bruno and Stephen Cox. 

Enjoy!

Karen Jackson, Executive Director, FIN

“What my Catholic faith means to me” by Ashley Bruno

“It means I like to go to St. Matts for adoration and rosary because I like to grow closer to God and Jesus. I like to go to St. Matts for Mass because I like to have my heart filled with joy. I like to help out at Meal Ministry at Courthouse United Methodist and I like to go to the Diocese Youth Conference in Richmond.”

 

 

 

ALL GOD’S PEOPLE by Stephen Cox

My name is Stephen.  I am 55 years old.  I have a very rare syndrome, Rubenstein-Taybi Syndrome, named for the two doctors who wrote a research paper about it in 1963, the same year I was born.  People with RTS aren’t all alike.  But they often share some of the things that are hard for us.

Part of my special type is that I have trouble with speech.  My brain thinks the words I want to say, but the way my mouth is made is al little different and my brain and mouth don’t always work together.  I like to say short phrases, but I usually speak too fast because I want my words to sound like the words feel in my brain.  You just have to tell me to slow down.  Sometimes you have to ask me to spell words you can’t understand.

I understand most everything I experience.  I can make good decisions and can figure out how to solve problems, but as an adult I am timid about going to new places and taking part in new experiences because it takes longer for my brain to process those unfamiliar things.  Still, I learn new things every day and learning is one of my favorite things.

I have never written an essay before, and when my mom asked me to tell about my church, I asked her to tell you for me.  I know she wrote this for me and she read it to me when she finished.  She even made some changes I asked for.

I go to Eastern Shore Chapel Episcopal Church.  I belong to a Christian family and I was baptized when I was a baby.  I went to Sunday School when I was a little boy.  I worried that my baby sister might have problems like me.  I kept asking “Baby grow up to be a big huge girl?”  It took a while for Mom to understand me, but she promised that our baby would be just fine and that I would keep learning and growing all my life.  I asked the same questions when that same little sister was expecting her babies.

I was older than the other members of my Sunday School Class, but we were friends anyway.  When it was time for my Sunday School class to learn about being grown up members of the church, I wanted to be a member.  I had to go talk to the Bishop, but after he asked me some questions, he said I was as ready to be confirmed as the others in my class.

These days I like to sit in the same church pew every Sunday, but I also like to stand closer to the altar when it is time for communion.  When we say the “Our Father, who art in Heaven” and get to the part about “give us this day our daily bread,” I like to put my hands out just like I do when Father Cameron gives me the bread.  Nobody tells me to sit down and they shake my hand and some of my friends give me a hug.  Everyone always says they miss me when I am sick and they try to understand what I say to them.  Lots of times they do understand!

My mom tells me that the people at church with me are called “parishioners,” but I call them “all God’s people,” because that’s who they really are.

© 2018 Faith Inclusion Network

The Parking Lot

I was excited when Virginia Pilot journalist Denise Watson replied to my email about doing a story on Faith Inclusion Network and our upcoming Gifts of the Heart Gala.  I always love to share about FIN and the work we do. After Denise and I talked on the phone, we decided to meet up at my church, Blessed Sacrament Catholic in Norfolk, VA one weekend before Mass to have a picture taken of my daughter Samantha participating at church, a shining example of inclusion as a person severely affected by autism but very much part of our church family.

I knew our Pastor, Fr. Joe Metzger would be fine with the plan, he has always been supportive of our efforts to include Samantha and the various cameras and reporters in the past coming in to film or take photos.  I should have known it would not be that easy this time around though.  Samantha’s anxiety, built up over the last few weeks for what is as of yet undetermined causes, kicked into high gear and she refused to get out of our van when we got to the church parking lot.

Samantha with Fr. Joe, Pastor at Blessed Sacrament Catholic Church in June, 2017

“Really Samantha?” I thought, “Here we are, trying to share about our wonderful inclusion experience and you won’t even get out of the car!” I dashed inside the church to tell Fr. Joe that Samantha was super stressed and not willing to come inside the church building.  He followed me outside to talk with her himself.  Samantha absolutely adores Fr. Joe so I thought he might convince her to get out of the van.

There in the parking lot we all gathered around Samantha.  Denise, the journalist and Bill, the photographer, could not have been nicer or more understanding. While Denise and I chatted, Bill snapped a few photos of Fr. Joe talking through the window to Samantha.

It wasn’t until the next day that I could organize my thoughts over this whole experience. On the one hand, I was sad and disappointed.  In addition to being worried about what is wrong with Samantha, I felt frustrated. We have worked so hard to get Samantha comfortable at church over the years and it has seemed to pay off. We generally sit together as a family in the sanctuary now and she is usually relaxed and happy, often wanting to linger after Mass. Her current behavior is unusual and a mystery. It is hard on all of us when we do not know what is wrong.

But another part of me realized that I was also very grateful.  I appreciate the people who meet us where we are, even if it is in the church parking lot.  And isn’t that what we really need to do when it comes to our families affected by disability? We need to meet them wherever they are, give support and encouragement through the challenges and let them know that they are not forgotten, even if unusual circumstances make attending church difficult or impossible.

So today I choose to be grateful. I am thankful for all those who love and support Samantha and our family, especially those connected through our church family.

I am sure Samantha will get through this period and we will be back in the pews soon. For now, I pray that this experience is used to touch someone else and be a reminder that sometimes, when you can’t go to church, church has to come to you, even if that is in the parking lot.

Amen.

Karen and Samantha Jackson

Happy Birthday to the Happy Hour Class

Today I had the privilege of attending worship service at Wesley Grace United Methodist Church, http://www.wmumcnor.org/ a small congregation in the Wards Corner area of Norfolk, VA that is known locally for a lot of community outreach, impacting the local area in many positive ways.

I was invited by my friend, Gray Puryear, who is not only a longstanding member of the congregation but also serves as a lay speaker among the many responsibilities he holds at Wesley Grace.

Gray, who I have known for 10 years as he is a founding board member of Faith Inclusion Network, invited me to this service because they were planning to celebrate an exciting milestone, the 50th anniversary of a ministry for adults with intellectual disabilities they call “Happy Hour Class”.

An excerpt from a description in the bulletin about the ministry reads, “In 1967, several parents attending a church t Wards Corner in Norfolk asked the church leadership to start a Sunday School class for their adult children with intellectual disabilities. No one in the church had any training or experience with working with this special population in an educational setting, but a few members of the laity gave it a try…Today, 50 years later, that class is recognized by the Virginia Conference of the United Methodist Church as the oldest continuous class for adults with intellectual disabilities in Virginia.”

I was unexpectedly emotional during the service and have tried to piece together why that might be.  Part of it, I expect, was the very familiar setting of the UMC. I was raised in a small Methodist church, much like this one and the warm memories of a close-knit community were close to the surface.  But it was more than that.

The congregation had a special air of welcoming as they began this celebratory time of worship.  Quite a few people greeted my daughter Samantha and I warmly, recognizing she has a disability.  I felt like members of the congregation were especially aware, on this day set aside to recognize the Happy Hour Class Ministry, that a person they did not know who has a disability was visiting for the first time. It was very welcoming and even encouraging.

The service was full of evidence that this was an important day; a large banner was dedicated to commemorating the 50th anniversary and every part of the service included members of the Happy Hour Class from the greeters, to acolytes and musicians. The theme of celebration was obvious and happily contagious.

Gray Puryear, Lay Speaker at Wesley Grace UMC and one of leaders of the Happy Hour Class

I was also quite moved by my friend Gray’s sermons both to the children and the adults.  His basket of different kinds of apples, an illustration of how people are all different yet still all apples, was simple yet effective for the children. His message in the sermon was equally clear. Referencing Exodus and the story of Moses telling God that he was “slow of speech” so he couldn’t possibly be God’s spokesperson, Gray pointed out an important point.  Just as God provided an accommodation in appointing Moses’ brother Aaron to help Moses, we too are called to provide accommodations to help each other. As Gray put it, “when we provide an accommodation for a person with a disability, we are acting in the image of God.

The beautiful service, complete not only with some contemporary worship music but also a song I have not sung since childhood, Jesus Loves Me, was thoughtfully organized. Even their special guest from Richmond, Ms. Cheryl Edley-Worford, Director of Inclusivity and Lay Leadership Excellence in the Virginia Conference of the UMC https://vaumc.org/LayLeadership was on hand to offer her congratulations and gifts to the congregation.

As Samantha and I left Wesley Grace UMC today, I was reminded that it is the small, thoughtful efforts that sometimes add up to make a big impact for the congregation and their visitors. Listening devices, a screen with large print of all songs and prayers, friends helping friends with walkers and wheelchairs, a clear message from the leadership preaching inclusion and acceptance and the inclusion of persons affected by disability in all parts of the services, make for a welcoming environment. In my eyes, these accommodations and attitudes of acceptance all added up to Faith Inclusion Network’s vision to Accept, Include, and Celebrate all persons affected by disability in our faith communities.

Congratulations and thank you to members of Wesley Grace UMC, Gray Puryear, and Pastor, Scott Beck on this special anniversary.

God Bless!

Autism Moms and Dads-Interview #4

One of the blessings of being director of Faith Inclusion Network, is being able to reach out to FIN friends around the country and share in our projects. Many thanks to a wonderful FIN friend from New Jersey, Ms. Anne Masters, Director of the Pastoral Ministry with Persons with Disabilities in the Archdiocese of Newark, NJ,  for sharing my request for an interview with autism moms and dads with the families in the Newark Archdiocese. Mr. Tim Craig generously responded to this invitation for an interview. Thank you Tim for being so open and honest. We love to hear from the autism dads and open our arms to another FIN friend in New Jersey! Happy Easter, and thank you for sharing about your beautiful son, Clinton.

Interview #4-Tim Craig

Clinton Craig

Question: How old was your child when they diagnosed with autism? Can you share how you felt when you received that diagnosis?

 Tim: Clinton was about 27 months old when we received the diagnosis of classic autism.  Like many autistic children, he had perfectly normal development until age two (he had around 75 words and played and interacted with other toddlers in our Greenwich Village neighborhood normally). When my wife and I returned from our first trip without him since he was born (a week in Mexico), we noticed that he had stopped using his words, was not making eye contact, and was isolating from other children. In the classic sense that parents blame themselves, I thought he was “punishing” us for leaving him. Our pediatrician sent us to an ear, nose and throat doctor and neurologist, and when everything checked out fine, the neurologist referred us to a psychiatrist.  After visiting with and observing Clinton for about 45 minutes, we came back a week later and received the diagnosis.

To say that we were devastated is a huge understatement.  We knew virtually nothing about the developmental disorder – my wife was in tears the entire night.  We were due to go on a vacation in Vermont, near where we had both gone to college at Dartmouth in Hanover, NH, and I went to the library stacks and read everything I could find about autism.  I joked that I probably spent more time there that weekend then I did as an undergrad!  We were very fortunate in that our psychiatrist knew the author of the book “Let Me Hear Your Voice,” the story of a woman who had two children recovered from autism through intensive behavioral therapy, and, after talking with the author, we immediately started Clinton on a program of behavioral therapy at that early age.

Question: How has living with autism affected your family? (immediate or extended)

Tim: The first immediate affect that Clinton’s diagnosis had was our move to New Jersey (although I continued to work in New York City).  At that time NYC had little to offer in terms of specialized schools for autistic children.  We ended up in Maplewood, New Jersey, and Clinton’s first school was in Montclair, New Jersey.  It also affected our decision not to have more children (my wife comes from a family of eleven kids!), as my wife was 37 by then, and we knew the odds of having another autistic child were increased.  More importantly, we realized that taking care of Clinton was going to be more than enough of a challenge as it was.

In terms of extended family, it was difficult for us that both of our extended families (for the most part) were back in Michigan, 600 miles away.  Many other parents of autistic children had the benefit of extra help from extended family that lived nearby.  However, my wife’s sister who lived in Vermont did visit and help out often, and whenever we went back to Michigan we were able to get a bit of a break. Emotionally, our families offered a lot of valuable support.

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

Tim: I feel like our biggest challenges are behind us.  Clinton experienced a lot of problematic behaviors with the onset of adolescence (breaking windows, breaking any glass or ceramic object he could find, self-injurious behaviors and hitting others) that made for some really rough times.  Although every once in a while one of the old behaviors will flare up, he has seems to have mellowed as he has gotten older (I am sure that the medication he has been taking has helped).

Probably the biggest challenge right now is finding things for him to do that interest him; if left alone, he will just “stim” on watching videos (yes, video tapes on a VCR!) or listening to his cassette tapes (yes, on a “Walkman” – we should buy stock in eBay!). He loves to hike in the outdoors, and in the winter he plays on the special needs hockey team the New Jersey Daredevils (have to give a plug to this great organization – Clinton has been with them for over 12 seasons). In the summer he loves swimming in our local pool, although not as much as he used to.  So I would say our biggest challenge is to find things for him to do that he enjoys and that engage him in a positive way.

Question: What is currently your greatest joy as an autism dad?

 Tim: As corny as it may sound, just watching Clinton smile and experience joy.  He has the greatest smile and laugh – they only seem to disappear when a camera is pointed his way!  I am also so proud of him when he is able to order for himself at a restaurant (his speech is very hard to understand – it’s frustrating for me and his mom, because we know what he is saying, but others just cannot pick up on it most of the time), or say the Lord’s Prayer at Mass.  Really my greatest joy is just getting to spend time with him – when I was working at a law firm or for a corporation in the city, I really did not have that much time to spend with him and I really regretted that.  Now I feel like I am much more of a part of his life, and I would not trade that for anything in the world.

Question: Has autism affected your faith? If yes, how so?

Tim: Autism has made me more humble and grateful for all of God’s gifts.  Our church has been so welcoming to Clinton – they have accepted him as he is, as one of God’s children.  Two of my proudest moments as a dad have been when Clinton received his First Communion and Confirmation, and that would not have been possible without the kindness, acceptance and understanding of our church (St. Joseph’s of Maplewood).  So often people have come up to me after Mass and praised me for being such a great father, just by observing me with Clinton during the service (he likes to sit right up front, in front of the choir and organ!).  It always embarrasses me, and I tell them I am just doing what any father would do.

So yes, autism has deepened my faith and given me more reason to give Him glory and praise.  Tomorrow is Easter Sunday, and I look forward to celebrating this joyous day with Clinton, the greatest joy of my life (along with my wife – she might read this!).

Question: Is there anything else you would like to share about being an autism dad?

Tim: Being an autism dad has been a challenge, but it has paled in comparison to the challenge(s) my wife has faced. After Clinton’s diagnosis, she switched careers, and received her teaching certificate in behavior analysis, and for the last several years has worked in early intervention with the Douglass Developmental Disabilities Program through Rutgers, going into the homes of 2-year olds and using the same behavior modification techniques that helped our son.  So it has been autism 24/7 for her for quite some time, which is a really tough road to travel.

While our son is not one of the lucky few who were completely “recovered” from the disorder, and he will always need assistance and constant supervision in living on a day-to-day basis, it has been wonderfully rewarding to see his progress and to watch him grow into a young man.

In this Autism Awareness Month, I pray that we will someday find a cause, and eventually a cure, for this disorder.  In the meantime, I will continue to try to be the best “autism dad” I can be for Clinton.