It’s Autism awareness month and part of creating awareness is sharing our journey how autism came into our life. Many times the real life stories of how we found out about autism and how we are doing today will raise awareness and occasionally shine a light on a lack of real help.
My oldest child was a toe walker. She danced and pranced through the world in a high-energy wave of BAM and pink glitter everywhere she went. She left a cute but destructive path.
Along came my son and another daughter, 3 little ones in quick succession. My babies came in beautiful little stair steps. My son being older should have been more advanced in his skills but he wasn’t.
I could see his intelligence. I couldn’t understand his words but I knew there was a fire in him just waiting to get out. His words were slurred and he had these massive tantrums. I later found out those were meltdowns. So many signs as I look back now of a child that was suffering from severe sensory issues and autistic symptoms.
- couldn’t look me in the eye
- banged off of walls and spun in place for what seemed like forever never getting dizzy
- 5 years old with an extremely limited vocabulary and eating preferences
- could emotionally fall apart if his routine was off, the seasonal hour changes would take weeks to recover from and the long days of summer were horrible to deal with getting him to sleep
My youngest daughter learned to talk fast and loved words. She had ‘I want…’ simple sentences early. The pediatrician even chuckled about how she was making up for my son’s lack of understandable speech.
Then it happened. My daughter stopped talking. She went from simple sentences to 16 words. She began flipping through books in the dark in the middle of the night. She stopped responding to me and her daddy and just put up a shell that walled out the world. She got quiet. Except when she wanted something than all we had to communicate with was screams and meltdowns.
My son’s outbursts were getting worse. Frustration from not being understood. His sister’s huge change in mood and her budding but extreme sensory needs clashed horribly in the house. He also began walking out of the house, eloping. He would walk away with a stranger and not think twice about it in a store. I had to have a hand on him the whole time we were out. He could not be alone and unsupervised.
Once more with my hubby we went to the pediatrician to beg for help. At first I was told to calm down. My mommy fears were over inflated. Then my son had a meltdown. Not just a tiny one but a HUGE 40 minute WHOPPER of a meltdown with biting, kicking, rolling on the ground. My daughter just flipped through her book. Chris and I got mad and demanded the dr stay and watch.
THIS IS WHAT WE WERE LIVING WITH. More important there was something wrong with my beautiful son and she needed to help us.
Before we left that day we got a referral to a neurologist in town. For my daughter… because the pediatrician was more upset at her regression than my son’s ‘poor behavior’.
We went to the neurologist thinking autism. My BFF had just gone through the process of testing and diagnosing her 2 sons with autism and our kids were so very similar it was hard not to compare.
Chris made sure to get more time off to come with me to help reinforce how serious this was. We took our daughter and our son because he was too much for any of our babysitters to watch. It was too dangerous for someone who didn’t know him to watch him then mostly because of the eloping and severe meltdowns. So into the room with the neurologist we all went.
Chris and I sat and went through the reams of forms and lists the dr had for trying to diagnosis what was wrong. Our daughter took a puzzle and neat and precise lined up the pieces one by one across the room. She would scream if you went to touch them or step across the line. My son was crawling under the chairs pounding his head on each chair as he went. It was a LOUD appointment with a startled dr in charge.
She said that our daughter clearly had autism and even though we had not filled out the paperwork on our son he did too. 2 diagnoses of autism. We knew something was wrong. It was almost a relief and yet it was not. We were numb.
What would this mean for our children’s future?
Would my daughter be able to regain her speech and come out of her shell?
Would my son be able to calm down?
We had so many questions and very little answers. The one thing we did get that day was a list of labs each child needed to get done ‘just in case’. I was so overwhelmed I didn’t ask in case of what. I just nodded yes and walked out the door with 2 upset children and a handful of Early Intervention therapy phone numbers.
Autism came into our lives a little at a time but suddenly there was a shift and it took over. We were constantly dealing with behaviors. Results of lack of the ability to communicate clearly with our babies. Sensory needs that were overwhelming our children but we had yet to learn about.
Those lab tests were also very important but we wouldn’t know that until almost a week later and a rush appointment with the genetics dr.
How did you find out your child had autism? Was it early on with support and help? Did you find out when your preteen started to have problems with the social pressure? Have you chosen not to get a diagnosis but treat what symptoms you see instead?