Last week the editor of Franciscan Media informed me that my article about raising special needs kids in the Catholic faith is going to be the cover story for the May 2023 issue.
I’m not crying my eyes are just leaking a bit of joy and gratitude. 🙂🙏
Having an article published on a prominent Catholic magazine has been a dream of mine for some time. It has been almost a decade in the making. Below is a brief glimpse regarding the lead-up to the fruit of my work and the entrustment of my writing to God.
2015 was a rough year for me as I lost a job and struggled with depression and suicidal thoughts in the aftermath of losing my unborn son Jeremiah to miscarriage.
I remember telling my wife some night in June that year, “I just want something good to happen in my life.” Obviously, she and my older two kids were good things and so were my friends, but grief hinders one’s ability to have perspective at times. I was still quite angry with God for allowing us to lose a child.
Less than a week after my “wish/lament” we found out we were pregnant with Josiah. His name means “healer” but I didn’t have that as a reason for picking the name. In hindsight, I believe the Holy Spirit prompted me to pick Josiah as my son’s name.
He was later diagnosed with autism spectrum disorder in 2017. This led to many challenges but also immeasurable joys. Josiah has been a source of inspiration for some of my best articles and he helped heal me (and still melts my hardened, and rehardened, heart).
My reaction after I had the first call with Franciscan Media in 2022.
God does work in mysterious ways and he does use all things for the good (cf. Romans 8:28).
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.
According to Cardinal John Henry Newman, “It is very difficult to give resentment towards persons whom one has never seen.” I have seen and experienced this phenomenon before. In those moments you are driving and someone suddenly cuts you off. An immediate reaction is anger or annoyance. Another instance of frequent prejudgment occurs when we first meet a new person. Sometimes our instincts are correct. Sometimes our initial bias is wrong.
Let us try a short experiment. Listen to the following quote. Supreme Court Justice Ruth Bader Ginsberg states, “I think unconscious bias is one of the hardest things to get at”. What thoughts popped into your head when you heard her name? Perhaps this name meant nothing and that is certainly fine. Actually, that is good because that means no bias exists now. If you know of Ruth Bader Ginsberg then it is likely depending on your past experiences, worldview, and or morality whether you view her positively or negatively.
Whether you agree with her judicial decisions or not, I hope we can all agree that her statement is true. Unconscious bias is tough to overcome. While bias acts as a predictive element for various situations in our life, we all have suffered saying something dumb or making an assumption that makes us look foolish. Even today I had to battle my preconceived notions and even slipped up in assuming something at work that later proved me wrong. I don’t want you to fall into the same foibles as me so here are five ways to overcome bias and make your relationships smoother.
Be Humble
According to Thomas Merton, “Pride makes us artificial and humility makes us real.” Pride clouds our perception. It limits our purview. The days where I struggle most with prejudgment are the days that I struggle the most with the sin of pride. Listening to the news, regardless of your political affiliation (IT HAPPENS ON BOTH SIDES) the bias is so obvious it almost jumps off the television.
Humility widens our ability to emphasize with others. Empathy is defined as the ability to understand and share the feelings of another. When that happens, our past prejudices are forced to change. Our skewed perception meets reality. St. Vincent de Paul plainly wrote, “Humility is nothing but truth, and pride is nothing but lying.” Prejudice is a preconceived opinion that is not based on reason or truth. If you want to begin to overcome bias—start with being humble!
Never Assume, Ever!
I assume you know that old adage about assuming—right?! The one that says: “You know what happens when you assume?” Or should I clarify? In case you never heard that saying refer to the meme below
Too far? Perhaps. Basically, we should never, ever assume because you could make an a** out of you and me! In all seriousness, assuming occurs when we use past patterns or behaviors of events or people to predict something that will likely happen now/in the future. While assuming does lead to being right sometimes, I have learned that the benefits of being right don’t outweigh that awful feeling learning you are actually wrong (JUST THAT 1 TIME). Assuming more often than not perpetuates and deepens prior bias. Be safe. Never assume!
Education, Reeducation, Continuing Education
“Prejudice is the child of ignorance,” purported English essayist William Hazlitt. Learning more about the item or person that you are prejudiced towards will naturally lead to a broadening of your understanding—so long as you approach education with an open heart and mind.
As a parent of special needs children, I hold a special place for children (and adults) with disabilities. While our society is definitely making gains in mental health and disability awareness, many prejudices still persist—especially regarding autism spectrum. Some of the remarks people have made when hearing my sons have autism include: “You know vaccines cause autism!” or “Are you looking into a getting your son cured? These comments are biased and uneducated.
Initially, I let this bother me. Ironically, penchant for special needs children is a bias as well. I need to separate my personal view on the matter sometimes and realize that some people may not be aware of autism. Without that awareness and education it definitely makes why others may have a prejudiced view on an important issue dear to you. As George Whitman put it, “All the world is my school and all humanity is my teacher.”
Put Priority on Individuals and not the Collective
Along with seeking humility, avoiding presumption, and continuing education, another way to overcome bias is to view people as persons. I see this all the time at work—many times I fell (and still fall) into this habit. My toughest interactions with clients, customers, acquaintances, and even my children happens when generalize the group instead of understanding the individual’s needs. Failure to place priority on the individual leads to generalizing.
Generalizing is not necessarily bad in and of itself. Reducing individuals to the collective gets problematic when it is done hastily and without thinking. Treat the person before you (whether that be your spouse, customer, neighbor, etc) with the utmost dignity. That simple attitude will go a long way in broadening your viewpoint and limiting bias.
Talk it out
The fifth and final way to overcome bias is arguably both the simplest and most overlooked—talking. Twentieth century psychology Rollo May wrote, “Communication leads to community, that is, to understanding, intimacy and mutual valuing.” When all other methods fail just talk. Communicate. Learn from others. You don’t have to adopt others’ belief if it is contrary to your own, but to overcome bias talking helps you better understanding their viewpoint.
Prejudice exists because we live in a fallen world. We are blessed to be living in the unique age of social media. No other time in human history has information traveled as quickly nor connected as many people as now. This is both a good and bad thing. There are more opportunities for learning about others, but also there are a ubiquity of opportunities for prejudices to persist and worsen. Prejudice can be overcome. We need to ask the Holy Spirit for the gift of humility, avoid presumptions, be open to learning daily, treat everyone with dignity, and be willing to communicate. Like Dr. Martin Luther King Jr., I have a dream that one day my children will not be judged by their disability or other outward appearance, but by the content of their character! Do you believe as well?
This is the first year that I actually paid attention to Autism Awareness Day. With a second child diagnosed on the autism spectrum as a parent an awareness increased in my personal life that children with autism are unique. My oldest son excels in language and articulating complex sentences, yet he still struggles to formulate his needs at times. On the other hand, my younger son was diagnosed with a more severe form of autism. He qualified for more special services such as speech therapy, OT, and special education.
My hope is that I continue to grow as both a parent and citizen of the world in my knowledge and compassion towards individuals with autism spectrum disorder and the families who support them. Parents naturally strive to attain to find all the answers. When questions abound and various strategies need to evolve to best serve your child tensions sometimes rise. I often struggle with doubts and depression as a parent to children with special needs. My wife and I constantly worry about if the world will accept and love our sons. Autism Awareness Day is a start–a sign that hope is on the horizon! I am comforted through the intercession of St. Thorlak an individual commonly believed to be on the autism spectrum [see link below for more information]. During sessions of stress I mediate on this short prayer:
“Holy Thorlak,
Cut with the scythe of your workings
the thorns casting shadows
in my unclear mind!”
For more information on St. Thorlak please click this link: http://www.mission-of-saint-thorlak.com/patron-of-asd.html
I thank the Lord for the blessings of my children. I am also appreciative that greater awareness is being brought to people with autism. Knowledge is truly a necessary step towards a truer and deeper level of compassion for our fellow brothers and sisters. I will conclude today’s post by reflecting on a simple, but powerful anonymous quote, “As special needs parents we don’t have the power to make life ‘fair,’ but we do have the power to make life joyful.”
