This is a post by Angela Conrad, mother to two boys on opposite ends of the spectrum. Her mission in life is to educate and advocate about autism for her sons.
Being told your child has autism is a life changing diagnosis. It is simply the loss of a “normal “child. It is the death of your dreams and plans that you and your spouse once imagined for your family. Autism doesn’t just impact your child; it impacts and completely changes your life. It is entirely up to you how you respond to your new life.
After my first son’s diagnosis, I remember feeling completely helpless. I knew in my heart he had autism already. We were simply waiting for the doctor to confirm it so we could start our plan of action. I had already started grieving months before the “official stamp” from the specialist. After receiving a life changing diagnosis, such as autism, parents tend to go through the seven stages grief.
I entered into the first stage of grief, Denial & Shock, when Trenton was regressing around 15 months old. I had just given birth to Trenton’s brother, Andrew who later was diagnosed with mild autism, when I knew something was wrong. However, I couldn’t accept it and I denied it for a long time.
I moved on to the second stage of grief, Pain & Guilt, when Trenton was 18 months old. The pain hit me like a tsunami wave and I fell flat on the floor. I’m not sure how I got through each day going on sleepless nights with a newborn and a toddler who never slept due to autism but I managed. The pain at this stage of the game was unbearable and the guilt was excruciating.
I moved on to a third stage of grief, Anger, when Trenton was around 2 years old. He had officially been diagnosed. I was trying to work as a special education teacher, and manage my son’s therapies. I soon became angry at the world. I didn’t want to hear about other’s perfect life. I wanted my child to be normal. I was angry!!
I wasn’t in the angry stage very long before the fourth stage, Depression, took over. I let myself handle this stage for too long without any help. I thought I was managing my depression by quitting my job and taking my son to therapy five days a week. However, I was still depressed and was too strong for too long. Soon in April 2014, Andrew, my youngest son, was diagnosed with mild autism and I was depressed even more. I now had two therapy schedules to manage. I needed to focus on myself and find the right treatments for me to move forward and get better.
I soon entered into a fifth stage, The Upward Turn, in the fall of 2014. I was feeling better physically and my boys were attending a great ABA facility at this time. Before we found Harsha Cognitive Center in Terre Haute, the boys were only getting two hours of therapy a day. Now they were getting 7 hours a day!
Around this time, I entered into a sixth stage, Working Through. I started to make big decisions about our life has a family that would greatly impact the boys for the better. We decided to move to Terre Haute so the boys could attend the facility 5 days a week. We lived 100 miles away and was driving it three days a week. I didn’t want to move away from my hometown and my parents who helped me with the boys, but I needed to “work through” and make the right decisions in order for the boys to have the best outcome in life.
Finally, I am in the final stage of grief, Acceptance & Hope. I am dealing with my life and moving on. Of course, I still cry over my dreams that were shattered due to autism. In spite of that, my daily decisions are based on autism and what is best for the boys. When the boys are at therapy, my focus is still them. I focus on advocating and educating others of their disability.
I am Trenton’s voice since he doesn’t have one. I am Andrew’s advocate for mild autism.
I am here to make a difference in the autism world! I am proud to do it for my boys!
The period after an autism diagnosis can be difficult for families. That's why Autism Speaks created the 100 Day Kit for Newly Diagnosed Families of Young Children (0-5), and a separate for School Age Children (5-13) to help guide families through the first 100 days after the diagnosis. The kit is available free of charge for families diagnosed in the last six months and can be downloaded for free by anyone.