I knew early on that something was very different about Nicholas. Growing up with a mother who worked in a "special needs" preschool, I had been exposed to it all. Volunteering my summers at the preschool, I had learned first hand not only the blessing of these children, but also how overwhelming the care of them could be at times. So when I confronted Nicholas' pediatrician with concerns about his tactile defensiveness, I wanted and welcomed his dismissal of my fear of Autism. I wanted a trained "professional" to tell me my baby was normal. Two years later I confronted him again, concerned that Nicholas was not talking yet or even attempting to talk. I left the office relieved when he reassured me all was well with my blonde haired, blue eyed wonder. But it wouldn't take more than an hour or two for the fear to creep back into my body. I knew it was there. I had known all along. I just didn't want to admit it.
I convinced myself of so many things in the first few years of Nicholas life. I convinced myself his doctor was right. That he was the baby of three children, my last child, and that I and my children babied him and made it unnecessary for him to talk. Yet, when I fought so hard to correct that theory, I was pushed to the brink of a break down from the 24-7 tantrums and meltdowns that I was faced with, from a 2 year old who was so frustrated that he could not communicate. So yes, I then convinced myself that I was a bad mother because I would eventually break down and give him the box of cereal because I knew he wanted it, he knew thatI knew, and I felt like some mean monster standing in front of this hungry and screaming child saying, "You can have the cereal when you say, 'c-e-r-e-a-l."
The truth is, the signs had been there since the beginning. Nicholas avoided eye contact at all costs since birth. During feedings, instead of gazing into my eyes he would stare at my long hair and rub it between his fingers, almost as if in a trance. The oddest noises sent him into inconsolable fits. The soft hum of the bathroom exhaust fan would trigger the most piercing scream yet he loved his music loud. He had every baby toy on the market at the time yet the only thing he would have anything to do with was fabric busy-box that played music. And he didn't even play with it appropriately. He just made it play the music. When he began making repetitive noises, I knew. I knew in my heart of hearts but prayed the pediatrician was right.
But three months before Nicholas' third birthday, I knew it was time to fight. See, I had been a stay at home mother all this time and no one else in my family and friends circle had young children. The only toddler I got much exposure to was my own. So as the weather began to warm that year, I began the routine of going to the park again. The very first day I left that playground in tears, and sobbed when I reached the privacy of my car. Nicholas had played as if no other child was there, ignored invitations to play, and a little boy had even asked me, "What's wrong with him?"
I called my childrens' pediatrician and gave the nurse an earful. The pediatrician returned my call within minutes and I tore into him with a vengeance. "He needs help. Something is wrong and don't you dare tell me otherwise. You refer us out and you do it now!" A few weeks later, a therapist sat across from me at my kitchen table doing an intake on Nicholas. After only 30 minutes in my home talking to me and observing Nicholas she quietly asked, "Do you know what Autism is?" After composing myself, she put me in contact with the right people and four months later we had a diagnosis. Nicholas has Autism.
I was furious with my childrens' pediatrician. For three years I had told him I saw signs of the disorder and he had dismissed me every time. It took a therapist 30 minutes to see what he couldn't see in three years. I told him later, as I requested files to be transferred to our new provider, and I could see true sadness in his eyes as he apologized. He admitted that he really did not have much experience with Autism and when he admitted that, I began to fully understand my role as a mother. I am not only a mom, I am an advocate. And even though a doctor may have a wall full of degrees, they don't know everything. And if I feel that my child has a need not being met, it is my responsibility and role as a parent to fight to the end of the earth for that need to be met. And never again will I hesitate to question a doctors opinion or diagnosis. I now fully trust my "Mothers Intuition."
Published by Angela M. Stull
I am a 30 year old work-from-home mother, freelance artist and writer. View profile
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- I wanted and welcomed his dismissal of my fear of Autism.
- But three months before Nicholas' third birthday, I knew it was time to fight.
- For three years I had told him I saw signs of the disorder...a therapist saw it in 30 minutes.




5 Comments
Post a CommentMedicine is 80 percent common sense. Some docs don't have too much common sense.
You are so right about honoring Mother's Instincts. I have a different issue with my son, but at first advocating for him with confidence was difficult. That "bad mother" fear can be intense. It sounds like you are doing an outstanding job getting the right support for your child. Thank you so much for sharing this experience. You've truly given me encouragement.
You are an excellent Mom!!
We all have to learn to be advocates for others. This was a heartfelt article, clearly written. More people need to be exposed to things like this. A friend of mine who was a nurse and who later went to law school, saw her 84 year old father become ill and while she couldn't diagnose what was wrong herself, she knew it was something. So she took him to the doctor and told them to run tests and NOT to tell her it was simply "old age". It turned out to be a rare kidney disorder. Thanks for commenting on my sewing blog! Keep up the good work on yours.
I love your articles!