On Autism and Fatherhood: An Exclusive Interview with Andrew Garofalo


Editor’s Note: This interview was conducted via email communication in September 2019. Some of the answers provided by the interviewee were edited to provide clarity for the reader. The integrity of Andrew’s answers was not compromised in the editing process.


Describe the special needs of your daughter

Evangeline was born with tethered cord syndrome (lipomyelomeningocele), which is a type of spina bifida. At 4 months old she required a surgery to detach her spinal cord from a large lipoma on her lower back.

At 3 years old she had a second surgery for cosmetic purposes to remove the large lipoma at the base of her back. Hopefully, there are no other surgeries for the future (the cord could re-attach, but it is unlikely in her case).

When was your daughter diagnosed with autism?

At about 3 1/2 years old Evangeline was diagnosed with autism spectrum disorder. She has been delayed mostly in speech, but due to her spina bifida, she has also had physical therapies to strengthen her legs and improve her walking. She walks very well, but she still does not have the lower body strength and mobility of a normal child her age.

Overall, Evangeline is doing well. Though a bit delayed in certain areas, once she gets the hang of something, she usually excels at it very quickly.

What challenges do you face as a parent to a child with special needs?

My wife and I face many challenges. Evangeline is able to receive most of her therapies at her school (she is currently enrolled in a special needs pre-school program), but she still has many regular appointments with various doctors and specialists in addition to her normal pediatric care (e.g., orthopedist, neurosurgeon, neurologist).

Evangeline looks a little different than most other kids and her behaviors stand out. Because of this, we are aware she may be teased by other kids as she gets older. Though Eva is well-behaved most of the time, she has certain ticks (she might make a strange noise now and then). She has certain rituals too. Some include singing a song she heard in a cartoon when the microwave is on or closing the front door anytime someone leaves our house.

If she is not able to do her rituals or do them the way she wants to, she often becomes distressed and cries. We try not to accommodate her rituals because we don’t want to reinforce them, so we patiently allow her to go through the process and console her when she is distressed.

How do you think these issues will change in the future?

My wife and I also have some concern over Eva’s future. We don’t know how well she will fit in with other people as she gets older and also how she will fit into the workforce as an adult. And sometimes I think about how she will be cared for after my wife and I pass away.

Hopefully there is a lot of time before she has to deal with that (Julie and I are in our 40s), but it is a reality that I still think about. Evangeline has two older siblings who love her very much, so when my wife and I pass we hope they will be there for her if she needs it.

How has raising a child with special needs impacted your approach to the liturgy?

We have not had parishioners with similar struggles approach us, but we have a group of close supporters we are linked to through a retreat called Emmaus here in the Miami area. When Eva was going through her surgeries we had a strong prayer community within the Emmaus men and women at our parish. Our friends at the parish are still interested in Evangeline’s progress. They love her!

Eva has been generally well-behaved at Mass, but sometimes during quiet times she will make strange noises (not like “normal” fidgeting or talking that young kids do) or she may want to sing a song (not so quietly). She seems to be growing out of that now. We have noticed that her peculiar behaviors usually come and then go after a while.

We have had to leave Mass early only once and we have had to take her outside to quiet down maybe a half dozen times ever. Thankfully, Eva shows an interest in the parts of the liturgy including the Our Father and some of the music. I think Mass is just part of her routine now.

What trials have you experienced?

Those uncomfortable moments when Eva is disruptive during Mass and I get the feeling some people around us might be annoyed and not understand she has ASD. Mostly we do our best to be respectful of the Mass and the other people there. We  ignore any unfriendly looks we might receive from a very small minority of people there. It is harder when we are away from home and visit other parishes because they do not know her there.

What joys have you experienced?

Seeing Eva put her hands in the prayer position during the Our Father with a big smile on her face and seeing her become enraptured by any particular song during the Mass.

We are united in constant prayer for Evangeline and all other special needs children. God bless you.

 

Thank you for sharing!

On Autism and Being a Priest: An Exclusive Interview with Fr. Matthew Schneider


Editor’s Note: This interview was conducted via email communication in August 2019. Some of the answers provided by the interviewee were edited to provide clarity for the reader. The integrity of Fr. Matthew Schneider’s answers was not compromised in the editing process.


Fr. Matthew Schneider

What challenges do you face as a priest with autism?

My religious community tends to take on other ministries more often. I was the chaplain and on the formation team at a K-12 school for the 2013-2014 school year. I recognized I had not had a perfect year, but I figured everything was within the learning curve of being new to a certain type of ministry. However, the school administration thought otherwise. They asked that another priest from the community take over after a year of what was supposed to be a 3 or 6 year assignment.

The administration also suggested I might have Asperger’s. I felt devastated but it hindsight this is a blessing as it lead to a diagnosis about 16 months later in January 2016. After that, I was transferred to working more behind the scenes on a few projects for my religious community – preparing a course, local administration, and the national communications – while studying grad theology part time and helping out with the sacraments at our retreat center and a few parishes.

How did the parishioners react when found out you were diagnosed with autism?

The regulars at the retreat center knew me kind of like a parish and they responded quite well. They didn’t really ask too many questions and just accepted the diagnosis when I explained it to them.

Given my situation, one family at the retreat center approached me as they have several autistic children. However, the mother of that family has already managed to get most things in order for her family at Mass, etc. so I probably learned as much from her as I helped her.

What challenges did you face after your ASD diagnosis?

As far as challenges, I definitely have some. I realize that I am not great at reading people. This has a lot of side effects regarding how I approach a lot of things. Right now, I am earning my doctorate in hopes be of service to the Church as a writer or teacher.

I’m more insistent on a confessional screen as I have trouble reading faces which people often expect in face-to-face confession. Also a few times, I’ve struggled with hearing confessions with talking going on in the background like at parishes missions or big events. Usually this issue was resolved by moving somewhere the preacher was not so loud.

How ASD ever affected your approach to the Liturgy?

As far as liturgy, I don’t think it has affected it too much.  A “normal” Mass doesn’t set off any sensory difficulties for me. I do tend to prefer a more structured liturgy as opposed to a free-form or charismatic type. I tend to say the black and do the red while tending to simplicity in songs.


Fr. Matthew wants to help you experience Jesus and become his apostle.
He is a priest with the Legionaries of Christ ordained in 2013, and lives in the Philadelphia metro area where he studies at theology doctorate and helps out with a few ministries. Fr. Matthew is also one of the top priests on social media with over 75,000 followers and writes a blog on Patheos. Originally from Calgary, Alberta, Canada, Fr. Matthew has worked throughout North America.

Thank you for sharing!

The Miracle of the Boy and the Wooden Letters

Wooden letters

According to C.S. Lewis, “Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see.” Recently, my faith has been lacking so I was missing the miniature and miraculous letters forming a story before my own eyes. I have previously written about my family’s journey of finding out our youngest son, Josiah, has autism spectrum disorder, but I will provide a short recap for any new readers.

Josiah’s Journey [So Far]

In the summer of 2017, my wife and I noticed our son struggled to make sounds and form words. Because Josiah could not communicate with us he started to  bang his head on the ground when he got frustrated. This habit became so bad that we were basically homebound unless both my wife and I were off work at the same time. On good days we could only take our son out for one errand as any transition proved too overwhelming for him.

We knew something had to change—he had to get better help then what we could offer at the time. In December 2017, Josiah was evaluated and diagnosed with autism. We enrolled him in a birth to three program offered by the city. He received speech, occupational, and development therapy. Eventually, his speech therapy was increased to weekly hour long sessions. It took a lot of time, focus, and diligence, but with consistent therapy with professionals and reinforced at home Josiah made tremendous gains. He was able to learn to talk and show us his needs for water, food, a preferred toy, and diaper changes. This summer he said his first 10+ word sentence!

Hello My Name is

Power of Words

Over the weekend, Josiah hit another milestone goal—telling me his full name and recognizing the letters to his first name. As I was in the playroom getting him dressed, Josiah pointed at the letters on the wall. For each kid, my wife and I hung their names in wooden letters in their rooms. We recently moved Josiah into the older kids room so the wooden letters remained in the “new playroom” (formerly Josiah’s room). This following was our exchange centered around those letters:

Me: “Yes, Josiah that is your name on the wall. What letter is that [pointing to the ‘J’]?”

Josiah:  “J, O, S, I, A, H!”

Me:  “And what is your name?”

Josiah: “Jo-sia-ah, Fabian, Sha-qin [Chicoine]!”

Practice Makes Progress

Some people have told my wife, “Aren’t you hoping that scientists find a cure for autism? Then you won’t have to waste all the time doing therapy.” This is the wrong thing to say to a parent of children with autism. Thankfully, my wife is quite professional and always tactful otherwise a vicious verbal exchange may have ensued. Autism is not something to be cured. Instead, it is something to be explored. Different does not mean diseased. Unfortunately, people naturally fear the unknown and treat it with disdain.

The reason I continue writing daily and sharing my thoughts is because I want to provide hope, perspective, and joy to families and individuals going through similar situations. Our world does not readily accept differences. I want to be a help change that. I want to bring tangibility and reality as to how autism looks in our little boy.

The Gift of Healing

Rainbow Baby

Before he was born, I struggled mightily with depression. Our previous pregnancy due to miscarriage. We named our unborn child Jeremiah. Josiah proved to be God’s healing gift to us. His name literally means “healer”.  All our triumphs are intricately tied to our struggles, doubts, fears, and worries parenting Josiah. We all have a cross to bear. Our cross is not more difficult than most people’s. It is merely different. Josiah’s smile and giggles are infectious.  Hearing him tell me his name meant everything in during that moment in the playroom.

Do you have special needs or have a family member with special needs? I would love to hear your story. Please feel free to share in the comments.

Miracles do happen we just are too busy to see them sometimes. Our son’s special needs forces me to slow down and view the world differently. I am thankful that I embraced that change of pace this past Sunday. I pray for the strength and humility to be more willing and ready to learn from my son in the future!

Thank you for sharing!