Autism: From Denial to Acceptance
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 learned about this in college while I was getting my special education degree.
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. Some nights I never went to bed and got up and worked the next day. Some nights I got 1-2 hours of sleep. 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. My days were like this…..out the door with Trenton by 8 AM( 90% of the time I had 1-2 hours of sleep) to travel a half hour to our first therapy. I drove back home to welcome a therapist in our home by the latter part of the morning. Next we were back on the road headed to Effingham for another appointment. By mid- afternoon we were home for our final in house appointment. 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 now had two children who didn’t sleep. I literally never slept! I worked around the clock 24/7. I drove to Olney with two kids screaming and fighting every morning. I drove to Effingham with two kids screaming and fighting every Wed & Thursday afternoon. It is not easy managing two kids with autism fighting in the van while I am trying to focus on the road. My body finally gave up my personal fight in August 2014, when I ended up in the hospital. I could not handle my depression on my own anymore. After two ER visits and one overnight hospital stay, I was put on an anti-depressant and a heart medicine for my irregular heartbeat which the doctors think began due to stress.
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 I found Harsha Cognitive Center in Terre Haute, the boys were only getting two hours of therapy a day. We spent most of our time on the road . Now they were getting 7 hours a day!
Around this time, I entered into a sixth stage, Working Through. Big decisions about our life as a family was made 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 I was driving it two days a week and staying in a hotel one night a week. I didn’t want to move away from my hometown who had benefits and raised money for the boys. I didn’t want to move away from my parents who helped 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 the 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!