Tag Archives: autism

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.

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

 

 

 

 

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.

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

Beauty Perseveres

As we come to the end of Autism Awareness month 2017, I would like to thank the contributors to our Autism Moms and Dads Blog Interview Series for sharing a bit about their lives in the world of Autism.  It has been particularly interesting to get the Dad’s perspective this year in addition to the Moms. I have also enjoyed the opportunity to re-connect with both local and national friends and make some new FIN friends along the way. Many thanks to those that interviewed: David Rizzo, dad to Danielle from New Jersey, Ruth and Rick Robins, parents of Tripp in Virginia, Tim Craig, dad to Clinton, from New Jersey, Janet Shouse, mom to Evan Shouse from Tennessee and Michael Hoggatt, dad to Summer from California. You are all an inspiration to me and it was a pleasure to “meet” you and your children through these interviews. 

Blessings to all those out there that love and care for people affected by autism. You are doing a great job!-K. Jackson

Beauty Perseveres

As I sat on my front porch, on a lovely late-April morning, a sweet little flower caught my eye. Not that flowers are unusual in the spring time, especially in Virginia, but this one seemed to be growing right through our tiled front porch! And the words “beauty perseveres” invaded my mind.

The writer in me jumped at the chance to use this unusual bloom as a symbol of the strong, determined and undefeatable autism moms, dads and children that I have met on my own parenting journey. Persons who have autism and parents and caregivers who, despite challenging behaviors, multiple medical needs, serious communication and sensory challenges and more, do persevere. They persevere even when it seems impossible to do so. They persevere through the tiled foundations of our society’s misunderstanding of autism, through uniformed attitudes and the unrelenting hyper-vigilance required of some moms and dads of children with autism. They persevere because they love their children.

Recently, our family has faced quite a few challenges; from our daughter’s six day hospitalization in the Intensive Care Unit of our local Children’s hospital to last summer, when we were dealing with some extremely challenging behaviors related to an anxiety disorder, (and let’s not forget the recent aggravating car accident that required a new vehicle), it has been a whirlwind. Yet through God’s grace and a generous dose of His strength, we have persevered and come out on the other side, seeing the beauty in our daughter, in our lives and in our amazing God.

“…And we rejoice in the hope of the glory of God. Not only so, but we rejoice in our suffering, because we know that suffering produces perseverance, perseverance character and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts…” Romans 5:2-5

Most Christians, when presented with the term, “perseverance” would go right to the above scripture in Romans. “Suffering produces perseverance” we are taught. But the most important part of these verses to me is not that we suffer (because everyone suffers, whether or not they are affected by any kind of disability) but that through suffering we eventually get to hope.  This is the beauty I see out of our perseverance; a hope that sustains, that draws others to God and helps us appreciate the gifts that our beautiful children with autism bring into our lives.

Just as that flower grows through the seemingly impossible place on my front porch, I pray that all of those affected by autism persevere through the difficult challenges that ASD can sometimes bring and experience the beauty and hope of God’s love for us all.

Thanks be to God.

 

 

Autism Moms and Dads Blog Series-Interview #5

 

I “met” Dave a few years ago by phone and was struck by the similarities of our parenting experience, having daughters very close in age.  My family is also Catholic and has worked hard to include our daughter into the life of our local parish and teach her about the Catholic faith. After talking with Dave, I once again realized how important connecting with other parents can be, even if they are in another part of the country.  If you would like to keep up with Dave and his beautiful daughter, Danielle, take a look at their Facebook page, Autism with the Rizzos at https://www.facebook.com/Autism-With-The-Rizzos-281489198616138/

Also, I highly recommend  David’s book,  Faith, Family and Children with Special Needs; Spiritually Able http://www.loyolapress.com/products/books/family-life-and-parenting/faith-family-and-children-with-special-needs and the The Adaptive First Eucharist Preparation Kit https://www.loyolapress.com/products/special-needs/adaptive-learning/adaptive-first-eucharist-preparation-kit , which he helped develop. Both of these are wonderful resources for helping to teach the Catholic faith to persons who have autism.

Interview #5 Dave Rizzo

 

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

Dave: Danielle was four years old when she was diagnosed with autism.  My wife and I knew something was up before this and we feared it was autism, but the formal diagnosis from a doctor didn’t come till Danielle was four.  The diagnostic process seemed endless. There were surveys we had to fill out, early intervention sessions, meetings with doctors and therapists.  When the formal diagnosis did come I felt a combination of intense dread and sadness, coupled with relief that at last I knew for sure what was going on with my daughter. The sadness came from the realization that the life I had imagined for her up to this point would not be the life she would lead, things like that I would never walk her down the aisle at her wedding, or that she would not go to college or lead an independent life. 

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

Dave: It affected my family in a big way.  Raising a child with autism leads to a fundamental shift in family dynamics.  We had to arrange our family life around keeping Danielle safe, providing therapies, helping her with everything.  We had to give most of our time to Danielle and this sometimes meant not giving equal time to our three other children. I felt very isolated in those early years.  It took a while for us all to learn how we could be a family of a child with autism and balance all the competing demands.  Eventually we learned how to do this better.

 QuestionWhat is currently your biggest challenge as an autism dad?

Dave: We just went through the process of attaining guardianship for Danielle, who turned 18 last autumn.  It was very difficult hearing her declared a mentally incapacitated individual.  We don’t think of her that way.  We think of all the marvelous things she has learned to do, all her accomplishments, the way she has brought joy into our lives and in the lives of others.  It’s also still a challenge to see other children her age meeting milestones and typical rites of passage like learning how to drive.

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

Dave: Seeing how Danielle has grown into a fun loving person, who continues to spread joy to those she meets.  For me, I experience a special joy when I see Danielle at Mass participating with reverence, folding her hands in prayer, reaching out during the sign of peace, kneeling in prayer after receiving holy communion. 

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

Dave: Having a child with autism forced me to grapple with my faith and turn toward God in prayer and sacrament.  My faith became much more visual and experiential, as I tried to connect with both God and my daughter.  I have learned that the life I imagined was not exactly the life God had in store for me.  But I am trying to discover in my life that the action of God is unfolding the way it should, that the life God has in store for me and my family is a good life.

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

Dave: Yes.  I want people to know that it is a life changing experience, and a roller coaster of a ride.  As the father of a now young adult with autism I have learned to look at the world a little differently.  I make a lot of mistakes along the way, and it is often very hard. However, mostly things are good.  There is happiness, humor, sadness, exasperation, compassion, love, and all the emotions you can possibly imagine, but life is about all of these feelings, and always has been. 

 

 

Autism Moms and Dads Blog Series-Interview # 3

I did not have to look far to find these parents who graciously both agreed to respond to our interview questions. Rick and Ruth Robins are parents to Tripp, a third grader at The Williams School in Norfolk, VA, where I also teach band.  Although we have just begun our friendship, Ruth has already been wonderfully encouraging and supportive of my work my FIN and we have had some great discussions.

There are SO many parents out there who are trying to navigate the world of integration with children who have ASD but lean more toward the high-functioning/Asperger’s side of the spectrum.  We appreciate Rick and Ruth’s  willingness to share a bit of their experiences thus far. 

Rick and Ruth Robins-Interview #3

Tripp Robins

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

Ruth: Tripp was five but the signs had been there since he was 15 months old. Family (specifically my mom) had been trying to tell us something wasn’t right but I was in denial. Can you share how you felt when you received that diagnosis? I felt numb, then very guilty. I tried to figure out what caused it. Maybe it was the medicine that I was on when I was pregnant with Tripp. Aspergers runs throughout my family so I didn’t have to look very far to see that we have a genetic predisposition towards it.

Rick: Our son was 4 when he was diagnosed with Asperger’s Syndrome. I was perfectly unfamiliar with autism at the time of his diagnosis. Google forays into the subject informed my earliest preliminary senses of what it meant for our son and our family. It was an overwhelming time. It was a gut-punch to look at the statistics on autism as they related to work, marriage, independent living, and the metrics that typically frame our expectations for our kids’ lives. It was particularly hard for me to think that my son could be socially challenged and disadvantaged. I was also surprised at the difficulty of finding the necessary therapeutic and educational resources. There is no single, easily accessed clearing house for resources for parents to point them in the right direction to necessary behavioral therapies and other resources. Fortunately for us, my wife’s openness about our son’s autism helped us to find therapists and a school for autistic children, both of which helped him immeasurably.

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

Ruth: It, without a doubt, has taught us grace, grace, and more grace. Also, how to love in a way that is beyond our physical capability.

Rick: It has been difficult. It has also had a maturing effect on all of us. Immediately after his diagnosis, we were plunged into a crisis mode, trying to deal with his behavior and finding the necessary educational and ABA therapy programs and medical resources. We knew that an early intervention in his behavior was important, and we did everything that we could. That included an ABA therapy school, ABA therapists on weekends and as needed, neurofeedback therapy, finding a pediatrician specializing in autistic children, allergy testing, diet modification, etc. Crises often have their own life cycles, and we have fortunately been able to make progress through this as a family. He was able to successfully transition into a small private school after two years in the autistic school. We were on pins and needles as he transitioned schools, but he did great. It has never been a linear experience. Behaviors and tics emerge, get addressed and extinguished, only to give rise to other behaviors, foci, or issues. It has reshaped our expectations and capacities to have more bandwidth in our responses as parents and family members. It has made me much more empathetic.

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

Ruth: Tripp’s perseveration on things can be really difficult. He won’t let things go and when he doesn’t get his way it can lead to a meltdown. He then feels guilty because he knows it’s not okay, but his emotions take over.

Rick: Our son is 10 and has a 13 year-old neurotypical sister. In the early years our son’s atypical behavior were the focus of a lot of our energy. This inevitably created asymmetries in the time, attention, and behavioral expectations that we exercised with our children.

 

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

Ruth: After YEARS of intense therapy Rick and I see Tripp coming into his own. He is able to articulate himself better and is beginning to have self-acceptance. We also hone his natural God given gifts to the best of our ability.

Rick: I have learned to appreciate my son for who he is, including his tendency to perseverate on issues (he hates our dog) and occasional, epic meltdowns. But he is an incredibly lovable kid, and he loves to fish with me, which gives us a great medium for our relationship. He is unique in his interests and extremely smart, so we are excited to see how he will use his gifts.

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

Ruth: Yes, it has made me lean on God more. There were many, many times I reached the end, I had nothing left and it was “Your grace is sufficient for me” that kept me going. I knew that each second, minute, hour, and day God’s grace was enough to keep me taking one step in front of the other.

Rick: Individuals within our church family have made a big difference in our lives and in our son’s life in particular. When he was about 4 to 6 years old, he was wiping out in classroom settings, and that included Sunday school classes. A family in our church, and their sons, who are passionate about autism, took turns being our son’s “buddy” in Sunday school, and they would help him to have a successful class experience. Others have filled that role during church services, since he performs better sitting with them than sitting next to his sister! He has been well loved by our church family.

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

Ruth: We have learned to appreciate each of our children for who they are and who God created them to be, not to try to mold them into something they are not. Also, we have learned to focus on what really matters, the rest in just extra fluff.