When my youngest son was 8 months old, I noticed there was something bizarre about his sleep patterns and habits. He slept with me and my husband because he had severe acid reflux and it was the only way I felt comfortable sleeping; knowing I could see him and feel him in case he aspirated in his sleep.
He would almost always flounce on the bed like a fish while he was asleep. It looked really silly. Eventually, he started standing up in bed and falling face first into the mattress about 20 times a night. Looking back, that was my first thought that something was just not typical with this child.
When he was a year old, I thought maybe he was just a spirited child. He had a lot of energy.
His favorite activity was to climb up the TV stand and jump off onto the floor. I really don’t know how he didn’t break any bones. Even then, I thought, he is a year old and he is just learning his boundaries. He just likes to jump. It isn’t a big deal. He will learn not to do that.
Around 18 months old, he still wasn’t communicating. He had never said mommy, or daddy. He wasn’t really even mumbling baby talk. Our other son was a late talker as well, so we really had nothing to compare it too. We both thought this was normal for our children.
By his 2nd birthday, he still had not communicated. He had no sense of danger. He had some sensory issues so we thought it would be a good idea to speak to his pediatrician at his 2 year checkup. Around this time, I had another baby, a little girl. I dealt with a lot of guilt because of it. I truly thought as he got older that I was the cause of his disabilities that I would later find out he had. I also felt that didn’t give him the love and attention he needed because I had another baby.
When he was just about 2.5, we finally were able to have little L evaluated. Two evaluations later we discovered our precious little boy had Autism. He was also diagnosed with a host of language disorders. Basically, we were speaking a foreign language to him and quite frankly, he had no idea what we were saying to him.
It took me awhile to really process what this all meant to me as a mom. I already knew that grocery stores, and places like Target, my holy land, were totally out of the question. The last time I tried to take him to Target he was so overwhelmed by everything that he got naked. His senses get overloaded, and he goes into a preservation mode.
The day it all sunk in, I recall so clearly. I couldn’t get out of bed, and all I wanted to do was cry over my sweet little boy. I knew we would face challenges. I knew life would never be the same, not because my son had somehow changed, but because the world around us was going to have to change for him to succeed. The world was ignorant at what he needed, and I was going to have to become his advocate. I cried because life was not going to be easy for us. I knew our life had just become full of doctor appointments, driving to and from therapies and long phone calls to insurance companies to plead for therapies that my son desperately needed.
I cried because he would probably never become what I had envisioned for him. I cried because I was lonely. I cried because being a special needs parent is harder than anything I had ever done before, and I didn’t know if I was truly equipped for the job. I mourned the injustice I felt at the hand that I had been dealt. I grieved for the child I had wanted, and yet felt guilty for doing so.
I wouldn’t wish that emotional toil on anyone.
It was almost a year after little L was diagnosed when our oldest son started acting differently. He was afraid a lot. He was afraid of loud noises, he was anxious over change, and he acted particularly weird in school. It was enough to get the attention of his teachers.
Our oldest son, A, was also diagnosed with Autism two years after little L had first gotten his diagnosis. He is high functioning, however, and completely opposite to his little brother. I had no intention upon getting him diagnosed, however his “quirks” as I like to call them began to impede his life. He wasn’t happy in school, he was getting into trouble at school, and frankly I felt he would not survive public school without modifications.
Now, I am the mom to 2 boys with autism, both who are extremely different on the spectrum. I love my children dearly, but life is sometimes rough for a mom of special needs children. Some days, I burst into hot tears over nothing. Other days I feel sorry for myself, and wonder why me? Most days I am tired. Parenting special needs kids takes tired to another level of extreme exhaustion.
Every day I am scared of our future as a family. I worry if I am doing enough. I worry about finances. I worry what happens to little L and big A when my husband and I die. In spite of these fears, my faith has made them subside as my boys grow up, and I am met time and time again with grace beyond measure.
Raising these boys has changed my life for the better. While they are growing, they are teaching me about the unconditional love we as mothers feel for our children.
These boys aren’t my autistic sons. These boys are my children, they just happen to have autism. They aren’t any different from anyone else.
What they’ve really taught me is my life might be difficult sometimes, but really I am most blessed.