What I learned one year after my son's autism diagnosis
March 15, 2017
This guest post is by Gina Case, MSW who has a young child on the autism spectrum.
Today marks a one year anniversary. Not a celebratory anniversary, but an anniversary of when my husband and I were able to discover answers, gain understanding and learn that our lives would take a different journey then we had planned. It was two months before our son’s third birthday when he was diagnosed with autism by a Developmental Pediatrician.
Our son, Jacob, had been receiving early intervention services since he was three months of age. Looking back, there were so many early signs of autism that went unnoticed. Around the age of two, I just knew something was different in parenting Jacob than with my older children. For example, when we came home from work he didn’t acknowledge that we had returned, let alone left. When he saw us, it was if we had been there all day and he had no reaction. He had difficulty communicating his needs and would get frustrated easily, usually ending in severe tantrums. Jacob also had some sensory processing concerns; scared of loud noises, overwhelmed in stores, and fearful of baths and haircuts. We had begun to change our plans and lifestyle to ensure that Jacob’s needs were met wherever we went.
At a review of Jacob’s early intervention services, it was recommended that based on their observations and screening tools that Jacob be assessed for autism. He was 30 months of age. I remember crying; feeling scared as well as a sense of relief that someone else noticed things were different. I scheduled an appointment with a Developmental Pediatrician. During the months leading to the appointment, I would go back and forth about whether or not I thought Jacob would be diagnosed with autism. I read a lot about the diagnostic criteria and learned as much as I could about autism. In my mind, I knew he met the criteria for a diagnosis, but in my heart, I didn’t want to accept it. Some days were alright and other days, we didn’t know how to parent him and felt helpless.
The night before we met with the Developmental Pediatrician, I was anxious and didn’t sleep. I decided to journal all that I was feeling and wrote this:
“I want to remember today. The day my son is just Jacob. My son who makes us laugh, who loves music and dancing, and sleeps with his favorite toy cars. My son, who loves his siblings and has a special relationship with each of them. My son who has a strong will and determination that we love and yet it challenges us. I want to remember today and capture every day before it. I want to hold tight the memories, hope and dreams and never let them go. Tomorrow things can change. You see, tonight is the night before we meet with the doctor to find out if our son has a diagnosis of autism. People say that regardless of what happens tomorrow, nothing will change because Jacob will still be the same little boy. Yes true, but things will change. Our journey will be different and the paths we choose will not be familiar. We will be challenged to our core and we will come together even more. Today, we are free of labels, diagnosis, researching treatment options and wondering what tomorrow will hold. Today is our life as we know it. Tomorrow, Jacob will be Jacob, the same boy we have always loved and known. That will not change.”
Jacob was diagnosed with autism the next day. Over the next several months, I coped by engaging our son in additional services, reading all that I could and participating in online and in person support groups. During a google search, I learned about the Autism Speaks, “100 Day Kit” and ordered mine. I read it over and over every chance I had. I carried the book in my bag and read it during lunch breaks, waiting at appointments and would look it over before bed. This guide gave my husband and I the tools we needed to go forward. The tool kit gave us so many different things to consider that we hadn’t before. I took part time leave from my work and over the first 100 days of diagnosis, Jacob had 48 appointments of in-home and outpatient services as well as medical and behavioral appointments. Our lives had truly changed.
A year later on this anniversary, I look back and see the progress our son has made; it is remarkable. The diagnosis gave us access to services that our son was not been entitled to before. This has been an amazing journey of hope. We have had the privilege of meeting so many other families and individuals on similar journeys who have encouraged us and who have shown us the way. I look forward to continuing to watch our son grow and accomplish many more goals. This time next year, I look forward to our second anniversary and assessing all that we accomplished this year.
You can download our Autism Speaks 100 Day Tool Kit here.