My son stuttered the words out, “Your-your-your the best mom in the world.” I squealed with delight and hugged him as I fought back happy tears. Many years ago, I wished someone had told me how to overcome grief when your child is diagnosed with autism.
Most days Kyle can barely say four or five words, let alone a whole sentence. I had been teasing him in the past six months everytime he wanted me to give him a smoothie, “Tell me I’m the best mom in the world.” He could repeat the words back if I said them first, but he couldn’t come out with them on his own. This was an enormous accomplishment for Kyle on this day.
If someone had told me this was where my son would be when he was twenty-eight, when he was born, I would have been devastated!
Twenty-five years before…
I sat crying in the front seat of the car as my husband, Vance, drove. Our little three-year-old boy, sat in the back seat in his own world, oblivious to our conversation. I was a mess of hopelessness. My husband was completely okay with the news we had just received. I was not.
Let me back up another half hour in the story.
After arriving at the doctor’s office, Dr. Lasalle had observed Kyle for a few minutes then she said those six unbelievable words that would completely shatter my world:
“I think your son has autism.”
I sat shocked and dumbfounded. How was this possible, what did I do wrong? I had been asking myself that question since Kyle had been born. I was listening to Dr. Lasalle, but a TV screen in my brain went on “replay” over the past three years. Dr. Lasalle became a haze and my life as a mother played out vividly.
*flapping his hands
*jumping in his crib for hours
*no eye contact
*repeating the few words he knew over and over
*eating everything off the floor or carpet he found
*sleeping a couple of hours a night
I was the WORST mom in the universe – for three agonizing years. I was also the ONLY mom who had a child who cried from morning to night, and he couldn’t sleep more than a couple of hours. Our family doctor told me to ‘quit babying him, and he’d make a turnaround’ – if only it had been that easy.
As Vance and I drove away from the life we thought we were going to have; I entered a world I had never been part of before:
My normal child was now gone, and I went into mourning.
I went through the seven stages of grieving, some more quickly than others. Unfortunately, it took me over twenty years to sort through what usually takes people 2-5 years to overcome.
Partly to do with the fact I had no clue what I was experiencing at the time because no one in my circle of friends had a child with autism.
When Kyle was diagnosed, there weren’t any therapies set up in our city, available to help him recover from autism. We were told to go home and love this child; since there was no help.
Kyle was going to be like this forever…we went home and I fell into a hopeless depression.
Then I slowly and painfully made my way through every stage of grief:
- Shock and denial
- Pain and guilt
- Anger and bargaining
- The upward turn
- Reconstruction and working through
- Acceptance and hope
*If you’d like to read more about these seven stages of grief, click here: STAGES OF GRIEF
In hindsight now, I wish someone would have taken me aside and said, “Cindy you’re in mourning, you lost a child and are experiencing grief.”
Putting a name on our pain sometimes helps us to overcome it.
When you don’t know what you’re dealing with, you don’t know how to find help or healing.
This is what inspired me to write this article, I was hoping I could reach out to other parents who are wondering why they are so overwhelmed with emotions: fear, anger, depression, guilt, and shock.
I’m also here to tell you there is HOPE.
I was talking to a mother a few years ago who had recently had a child diagnosed with special needs. She was heartbroken and I could see she felt guilty about being sad. Her daughter, just a baby, sat in her car seat, on the floor beside her, and adorably dressed in a pink frilly dress.
We talked about her daughter’s diagnoses, and my heart went out to this mother. Her sadness was overwhelming her. I reached out and touched her arm, “You’re mourning the loss of the child you thought you were going to have. The quicker you can get through it, the quicker you can move on. It’s okay to grieve.”
She looked up at me, and I saw the relief. The permission to mourn had released a mountain of guilt, for being sad.
I saw her a few years later, she told me she made it through the grief and thanked me for telling her it was okay to mourn. She had joy on her face as she looked down at her daughter still dressed in pink, looking like a princess, and smiled at her. She told me her little girl had brought her family great joy.
If I hadn’t been given Kyle, I wouldn’t have been able to relate to this mom or encourage her.
My life with Kyle has brought so many opportunities to bring others HOPE.
But first I was brought through deep and dark waters before I came up for air.
I was stuck in the anger and bargaining stage for about twenty years and I needed help, but where do you go to get help for something with no label? I would have gone to grief counselling if I had known that was what I was experiencing.
Eventually, when I got past the anger and bargaining, I experienced an unexplainable joy. I wouldn’t trade my son Kyle for all the treasures in the world. What we went through has brought our family closer together. When you experience tragedy as a family together – you form a strong bond and hang on to each other for dear life – or you fall apart.
Fortunately, our family was given the former.
Kyle was a tornado on ten espressos and when he eventually grew to 5 ft 11 inches, and 190 lbs, it became a nightmare. Our home was destroyed over and over again as his anxiety caused Kyle to do things he was ashamed of later, when he had calmed down.
But our family stuck it out through the worst of it, and our children became our greatest support system.
We learned together, about human bonds that are stronger than life’s tragedies, and holding on to hope when you have nothing on the horizon that looks hopeful.
(Read more about Kyle – click here: Waiting on Autism, A Mother’s Blessing)
We have four children younger than Kyle; Charity, Devyn, Aryanna and Eythan, and they are grown and have moved out. Autism changed each one of us. Our family has been transformed and are not the people we would have been if we hadn’t been given this special gift.
*Our children today. Left photo: Jazmin and Eythan who are married, Charity and Dan who are also married. Top: our son Devyn and Eythan. Bottom: Me and my daughters, Charity and Aryanna.
My youngest, Eythan, was riding with me one day in the car when he was eighteen, and he turned to me and said:
“Mom, maybe God knew we needed Kyle. Without him, we may not be who we are today.”
Wise words from a teenage boy.
Kyle lives at home with my husband Vance, and me. He brings us so much happiness and joy. We have experienced many ups and downs – good and bad days, but they don’t knock the wind out of me anymore. I grew to be the best mom for Kyle! I believe he was given to me, so I could pour my heart and soul into raising him and one day share our story of overcoming grief after your child is diagnosed with autism.
I have learned to accept what each day brings and love Kyle for who he truly is…
The little boy in the back seat, perfect in every way…perfect for me💗.
Experiencing life with autism, led me to write a book. You can read my full story in, Beauty from Ashes. Click: HERE