The last two years I have had a strict adherence to routines and structure. Since my son was diagnosed with Autism Spectrum Disorder (ASD), I have a singular focus as a mother to ensure that there are as few surprises or interruptions to his routine as possible. Simply because, that’s how it’s done. Routine and schedules are the father of an autism household. It keeps us sane and provides a sense of relief when you have a “normal” household.
Before, I planned each day down to the second. Meltdowns were a way of life and navigating the waters of two kids, 2 years apart, who needed all my love and attention, was more like a lesson in daily drowning. As a stay at home mom, I needed more guidance. I started to use a visual schedule. I could plan each day from “rise-and-shine” to “goodnight I love you.”
Summer vacation, with its long days and seemingly endless unfilled hours, is the highlight of the year for many children. But for those kids who crave predictability, like many on the autism spectrum, it can be difficult to leave the structure of the day school behind.
Whether a child is staying home for the summer, or headed to camp, all these transitions can cause anxiety for children with autism. Summer vacation has been a major challenge here in our household. I have never seen my son more anxious and defiant at the same time. Two years later though, I face some new dilemmas each day. Summer has been a pain in the butt and has made our routine rather stale and unpredictable.
My journey as an autism mom has been its own routine with very little sleep and a lot of focus on moving through each new challenge. The drive of course has been my son’s therapy and progress through speech issues, behavioral hurdles, and prosody challenges. Intertwined in his routines are moments I steal for my daughter, who in her own right has established an incredible bond with her brother. She has an understanding well beyond her two years when it comes to her brother and his needs.
Gosh Fall can’t come soon enough for me… But as for now…..
He is growing up before my eyes, yet I am struggling to grow with him. If I grow with him, it means I have to release some control over his daily life. It means he could fail, or get hurt, or be ridiculed or misunderstood. Everything an autism parent knows will come with time no matter the support and love we provide. As he begins his kindergarten readiness program this fall, I will continue to ask myself how I will grow with him.
While I have been with him on his journey every step of the way, he has helped shape my journey since he was born. As a mother I have to have faith in what we’ve accomplished together over time. Also, I must continue to believe that the routines and schedules that are at a halt due to summer vacation will come back and stabilize him a bit and give him a sense of calm.
Uncharted territory will be underway, and I am scared for what will transpire. Yet that is what daily life is like with raising a child on the spectrum; unpredictability and the unknown. Stay tuned.
Merri Wong is married and has two children, Andrew 4, and Arwyn 2. She lives in a wonderful neighborhood in East Norwalk; the type of neighborhood where everyone knows everyone, the kids play together, and they even have a yearly fall block party. Her family also has 2 dogs, and they have what seems like the picture perfect suburbia life. However, two years ago, their lives were turned upside down when they learned that their son had High Functioning Autism. As parents, this is something you do not prepare for when you bring home your new little bundle of joy. Merri welcomes you to come along with her on her continuous journey of being a mother to a son on the spectrum. It is sometimes, funny, sad, and hopeful, but unbelievably real. Welcome to the secret world of high functioning autism.