Discovering the Joy – One Family’s Journey on the Spectrum
Some people know exactly what they want to be from the time they were little. I would go back and forth as a child wanting to be a veterinarian, teacher, and social worker. However, the one thing that I knew I wanted to be was a wife and mother. I anticipated the day that I would become first a bride to my prince charming, and then a mother to my prince and princess. I envisioned the white picket fence with healthy children playing in the yard. I day dreamed about family vacations, watching my kids play sports, and hosting family and friends at our house. I never once day dreamed about autism.
I had some experience with autism. I was a special education teacher and taught children with various disabilities. I loved my job. People with disabilities always held a special place in my heart. Once again, I never thought my life wound entail raising two children with their own unique disability.
Trenton is my oldest son. When I found out I was pregnant with him, I was on cloud nine. Life couldn’t get any better than it was when I was carrying him in my body. I hoped and prayed ever day for a healthy child, but once again, I was not thinking about autism. I was thinking about that white picket fence and living the American dream that everyone wants to live.
Once Trenton arrived into the world our life was forever changed. The sleepless nights began and they stayed well beyond the newborn stage. Soon the age came that he should start talking but the words never came out. The few words that he could say when he was a year old soon diminished as if they were never present to begin with. The struggles soon became worse. What was wrong with my child? Why do I always have to drive him in a car to make him stop crying? Why doesn’t he sleep? Why won’t he look me in the eye? Why does he cry and go into a meltdown every time I try to take him to a store? What is going on?
The wait to get him into a specialist was the longest wait of my life. We waited for nine months until he could see a specialist. I knew before that day. It was no shock when the doctor said, “You son has autism.” I knew in my heart it was autism every night when I was up with him in the middle of the night while he screamed and kicked me. I knew when he would rather be in his own world and not mine. But the day that I really knew was the day when we tried to celebrate Easter with my husband’s side of the family at our house. Trenton ran to the farthest corner away from everyone and screamed a blood curdling scream. The fear in his eyes was devastating to look at as his mother. It was a look that I had never seen before in any person. He did not want people in his house. He was terrified. Therefore, getting the official stamp from the doctor was not a surprise.
August 2, 2012, the day Trenton was diagnosed, was the beginning of a whole new journey for our family. It was the official end of the white picket fence dream and the beginning of a whole new journey that I never thought I would be on. It is not a terrible journey, just a journey that is much different than the average person.
Our life was soon taken over by therapy appointments, doctor appointments, medicines, and supplements. I soon learned medical terms that I thought I would never have to learn. Decisions were being made in our life and with each and every decision it was always about what would be best for Trenton. I soon quit my job as a special education teacher and became a strong, fierce advocate for my son and his autism. On most days I would meet myself coming and going to therapy. I was sleep deprived. I cried and I cried a lot! I became a pro at managing meltdowns. I researched autism every single day. I wanted the best for my child. I wanted to make his life easier for him.
Before I knew it, I lost touch with my old self and found my new self. The person, who I once was, became a thing in the past. No longer was sports important…helping my child communicate was much more important. No longer did I care if I had a tan on my body or not. My child had severe sensory processing disorder and does not even feel his body on some days so why should I care if I had a tan on my body? As you can see, my priorities changed and they changed for the better. The focus was on Trenton and his needs.
A year after Trenton’s diagnosis, I soon became alarmed for my other son, Andrew. He started to display characteristics of autism. Although his traits were different from Trenton’s, it was clear to me that I was losing my other son to autism as well. Sure enough, in April 2014, Andrew was diagnosed with mild autism. I soon found myself grieving over my other child.
I no longer had one therapy schedule to manage, I soon had two schedules. Life with autism just got a whole lot crazier. Even though Andrew’s autism is much milder than Trenton’s autism, he still needed as much help as he could get in order to help him in his life. The white picket fence dream kept on getting farther and farther from reality.
The grieving process that I went through with Trenton was happening again. The rollercoaster of emotions was taking over. This could not be happening again? But it was. Once again, I went through the stages of grief just like I did with Trenton. I soon realized I had a choice to make. I could both feel sorry for myself and be depressed for the rest of my life or I could choose to be a warrior mom and spend the rest of my life advocating for my boys. I could make a difference in the world of autism. I was too strong to stay depressed. I chose to make a difference in the world of autism and my boys.
By the end of 2014, our family had moved from Illinois to Indiana in order to get more help for Trenton. The kind of daily therapy that Trenton needed could not be found in southern Illinois. We soon moved two hours away to Terre Haute so Trenton could attend a facility for seven hours a day, five days a week. For two and a half years I drove roughly two hours total a day getting Trenton and Andrew to therapy. The days were long but my nights were even longer. I am not sure how I did it looking back now but I simply didn’t give myself a choice. I did what was necessary for my boys. They deserved the best life possible. They deserved a chance in life!
I spent eight long months trying to get Trenton into Harsha Cognitive Center in Terre Haute. It is frustrating that insurance dictates so much for children with disabilities. I thought the day would never come when I would hear the words that Trenton was accepted into the program by his insurance. However, when the day arrived it was music to my ears. Nothing was better than getting my child with severe autism into a full day program!
We soon began the two hour drive to Terre Haute three days a week for Trenton and Andrew. I spent August to October looking for a house for us to move to. We soon found a house and we were moved by the end of December 2014. It is not a house with the white picket fence. I wouldn’t even want that house anymore because I have learned to love the life that my life has become. The white picket fence life was a dream, a dream that will never come true.
Instead of a white picket fence, I live in a house that has to be dead bolted at all times to protect my child from wandering away. It has special locks up high in order to protect him from escaping. I live in a house that has to have a sensory room with special swings and weights to help Trenton meet his sensory problems. I have special communication pictures set up in order to help him communicate. I never know if and when I will get sleep due to Trenton’s inability to sleep. I live in a house where we concentrate on the much smaller things in life. We celebrate the few seconds of eye contact that may come once a month. We celebrate a night of sleep.
Instead of going places as a family, we are prisoners in our own home. We are unable to take Trenton out in public because he cannot manage all of the sensory input. He is unable to control his behavior. I pray and hope that through his therapies, he will learn how to manage this and that one day we can go out in public.
As you can see, the white picket fence life I dreamed about did not happen. I have grieved for it and I still do. However, I have learned to find joy in the life that I was given. It has been a journey of heart ache, tears, and joyous times. It’s not the fairy tale that I would have liked my journey to have been but my new journey has showed me much more than the journey I dreamed about would have ever showed me. It has made me a stronger person and a much more caring person.
My boys have taught me so much! They have taught me about the true meaning in life that is often looked over by others. The joy, love, and miracles that I witness every day through my boys are amazing. I look forward to what our journey has in store for us over the years. I know pain and heart ache will always be at the door but there will always be joy in that heartache. You just have to find it!
This article was featured in Issue 42 – Autism: Fighting the Stigmas