What my son's routines helped me understand about being an autism dad
June 11, 2018
This guest blog post is by Nick Wright, Labor Relations Representative in San Diego. He is a dedicated father of two, a daughter and his son Brandon who was diagnosed ASD. He is an active community member and volunteer for youth sports programs.
The last two years I have had a strict adherence to routines and structure. Since Brandon was diagnosed ASD, I had a singular focus as a father to ensure that there were as few surprises or interruptions to his routine as possible because that’s how it’s done. Routine and schedules are the father, no pun intended, of a pure 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. Navigating the waters of two kids, less than 2 years apart, both in diapers and needing all my love and attention was more like a lesson in daily drowning. As a newly single father, I needed help. In came the calendar. I could plan each day from “rise-and-shine” to “goodnight I love you”, and everyone knew what was expected of them. It provided stability for my kids when I didn’t have any as a father.
Two years later though I face a new dilemma that has been plaguing my household for the last few months. That routine has gotten rather stale.
My journey as an autism dad so far has been it’s own routine, very little sleep and a lot of focus on moving to each new challenge. The drive of course has been Brandon’s therapy and progress through speech delays, behavioral hurdles, prosody challenges and cognitive development. Intertwined in his routines are moments I steal for my daughter, who in her own right has established an incredible household for Brandon. She has an understanding well beyond her 7 years when it comes to Brandon and his needs.
Our routine has resulted in a lot of accolades. Brandon is in General Ed Kindergarten. He’s won academic awards! He doesn’t need weekly speech therapy anymore. He’s graduated to group ABA. He loves reading and math and playing Monopoly (he has nine different versions). He has friends! The greatest accolade, and the hardest one for me as a father to cope with, is that he’s graduating past his routines. More specifically the routines I created for him and nursed to the rituals they’ve become today.
I find it surprising how difficult it is for me to let go of those routines with him, and I’ve come to understand that I’ve used those routines to define me as a father. When Brandon was diagnosed there was no instruction booklet that came with it. There was no one in my family with any experience with a child with autism, let alone any experience with our particular family dynamic. I established myself and our roles as a family by the comfortability of our routines.
I still define my role as a father by the structures I’ve created to make my life easier. With that structure now needing to be rebuilt as he continues to progress and reach heights I only dreamed of a few years ago, I long for the days when his diagnosis defined him. Selfishly it made life much simpler and far less scary. He doesn’t need me as much. His hand doesn’t need to be held religiously, he can be trusted (only so far, he’s still a precocious 6 year old boy) and he knows what his needs are and can vocalize them.
He is growing up before my eyes, yet I am struggling with growing 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 every second of the day. As he eyes 1st grade over the horizon, I continue to ask myself how will I 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 father, I have to have faith in what we’ve accomplished together over the years. I have to have faith that the routines and the schedules that are slowly slipping away served their purpose. A new chapter in his life is a new safari in mine. Uncharted territory where my understanding of being a father is challenged, but our family remains strong.
If you or your family need guidance in navigating the 100 days following an autism diagnosis, download our 100 day kit for newly diagnosed families of young children