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!
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
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!
This article is for any parent who has an English, Literature, or writing degree, or simply a knack or wordsmithing, but you cannot seem to fit time to pursue your dream because you’re too exhausted from rocking your full-time job as an amazing mom or dad! Check out the article in the link below for incredibly simple ways to start writing now.
The weeks preceding Christmas—Advent—usually have the perception of being a magical, jovial, and anticipatory of the birth of the Christ-child. While certainly, my Advent began with an anticipation, it lacked marvel and apparent joy. Instead of initially thinking about preparing my heart and mind for the Lord, I juggled the infectious side effects of projectile vomit and diaper explosions. Both of my sons came down with the stomach flu over the weekend.
Nothing tests a parent’s patience, will-power or love of their children quite like a continual cleaning of bodily fluids. On top of the symptoms of the stomach flu, my youngest son is also recovering from an adenoidectomy (see below diagram if you never heard of that organ before–as I never did prior to this surgery!) Because the flesh is healing behind his nasal cavity, my two year old’s breath has smelled like death since the surgery and apparently it may take up to three weeks for his rotting-breath odor to be gone! What a start to the New Liturgical year!
Too often society places pressure for the perfect “holiday” season: all the gifts must be precisely wrapped and laden under the Christmas tree in a tidy order, the Christmas meal has to be cooked to the exact temperature and paired with the appropriate side dishes depending on the main dish, and family members need to behave–especially your “estranged/weird” uncle [or aunt or other unique relative you may have]. Honestly, I fall into this fallacy almost every year myself. This year was no different. I hoped to be able to take my entire family to Mass to celebrate the First Sunday of Advent. I wanted to show my kids the beautiful Advent wreath and talk about the particular reasons the priest wears purple, or “FATHER IS DRESSED IN PURPLE” as my daughter would shout with glee. Sadly, none of that happened. Because of my priority as a parent, I had to miss this Mass to care for my ailing family.
After taking some time to reflect on the apparent failures of the weekends, I realized maybe God was preparing me for something greater—Advent really is all about preparation for the coming of Christ. Revisiting the birth narratives in the Gospels of Matthew and Luke, showed me that the arrival of Jesus did not occur in the ideal standards, at least according to the world’s standards. Luke 2:7 details how Mary and Joseph arrived in Bethlehem “too late” and the innkeeper denied them a room at the inn. Instead, of giving birth in the amenities of indoor comfort, Mary had to give birth to Jesus in a humble way—in a simple stable. American novelist Flannery O’Connor wrote the following about the Incarnation,
Man’s maker was made man that He, Ruler of the stars, might nurse at His mother’s breast; that the Bread might hunger, the Fountain thirst, the Light sleep, the Way be tired on its journey; that Truth might be accused of false witnesses, the Teacher be beaten with whips, the Foundation be suspended on wood; that Strength might grow weak; that the Healer might be wounded; that Life might die.
By becoming a human Jesus was able to encounter the entirely of the human condition save for sin. In my children’s pain, suffering, tiredness, and thirstiness this past weekend, Christ was with them in a unique way as he already suffering all those things during his 33 years on Earth.
According to the Catechism of the Catholic Church paragraph 463, “Belief in the true Incarnation of the Son of God is the distinctive sign of Christian faith: “By this you know the Spirit of God: every spirit which confesses that Jesus Christ has come in the flesh is of God.” The season of Advent is not about preparing for the “perfect” Christmas where Mary and Joseph get a room at the inn. Rather, Advent is about preparing for the birth of Jesus Christ. His birth took place in the messiness of the stable, his Passion and Death took place on the messiness of the Cross. While not everything in my life will be neatly fit in my control, after this incarnational and infectious start to Advent, I had the privilege to be graced with the gift of perspective and opportunity to serve my children as Christ served the world!
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:
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.”