Since Eli was four months old I’ve been watching him for signs of autism. In my frantic search for an answer, a cure for his older brother’s autism, I came across many articles on the genetic likelihood of a child who has a sibling on the spectrum being diagnosed with autism as well.
Eli was only two months old when his older brother, Owen was diagnosed with autism. At that time, all I knew of autism was its debilitating, horrifying side that took my easy going, sweet, first born child and turned him into a fearful and unhappy little boy. The thought that my infant son could also be autistic was, at that time, almost too much to bear.
I spent hours researching. I thought that if I learned enough, understood it better, brought together the right therapists and doctors that we could fix Owen. I became obsessed with watching Eli for red flags because I thought that I could fix him too if I caught it soon enough. I hadn’t accepted autism and what that meant for Owen, Eli and our family.
At four months old the subtle signs began to appear. He was a good baby and didn’t require a lot of attention. But when he got upset he would become very rigid. He would get stiff and arch his back making it very difficult for me to hold or comfort him. At six months, his head lagged when we would pull him to a seated position, indicating signs of weak muscle control. He could use his legs while lying on his back but seemed to forget they were there when held upright or when he was in his bouncer.
From six months to a year he received Early Intervention therapy. He had a physical therapist that came into our home once a week to work on his gross motor skills as well as a Language Based Play Therapist to teach him nonverbal communication. When Early Intervention left he had learned to sit up, crawl and was pulling himself to standing. He had learned to wave, clap his hands and point. Most importantly, Early Intervention taught me how to teach my son skills that most children seem to learn automatically.
During this time I became all too familiar with the saying, “If you’ve met one child with autism, then you’ve met one child with autism.” Eli’s abilities and disabilities were different than Owen’s. This is the cunning and baffling part of autism. No two people with autism are alike and their signs and symptoms can vary tremendously.
I hit my lowest point shortly after Eli turned one when I picked him up from my aunt’s house. She had been watching him for me that morning. When I walked in, I heard her excitedly telling Eli that Mommy was coming. I peeked around the corner expecting to see his little face light up when he saw me but he was completely absorbed in the lids he was playing with. He loved to flip and spin the lids from his baby food jars. He would flip them over and over again. Although perseverative behavior he was really quite good at it. I called to him and tried to get his attention but he was completely focused on the lids. His behavior was so similar to Owen’s that the realization took my breath away.
Suddenly I was taken back to when Owen was a little over a year old and I would leave him in the babysitting room at the gym while I worked out. When I’d come back, I’d notice the other toddlers, some younger than Owen, toddling over to their Mommy’s with huge smiles on their faces and arms outstretched. Owen would be off in a corner quietly playing by himself. I’d call him and call him but he wouldn’t look up until I walked over and sat down in front of him. Sometimes he’d smile then other times he’d just drop his toy, get up and walk to the door ready to leave. No acknowledgement or happiness to see me, nothing. Eli was doing the same thing. He was completely disinterested in my comings and goings. I had my suspicions up until that point but it was that day that I knew that he had autism too.
I fell into a deep depression during the weeks that followed. We were thirteen months in and Owen could still not be in the same room with Eli for more than a couple of hours without having a debilitating meltdown. I had very little hope that our circumstances would change.
I eventually sought help for my depression. I made an appointment with my family physician and told her how much I’d been struggling and that no matter what I did I just couldn’t snap out of it. She prescribed an antidepressant. Three days after starting the medication, my world shifted. It was like putting glasses on for the first time. Everything became clearer. Daunting tasks that would take all day for me to complete became just minor nuisances in my day. Situations that would normally cause me extreme anxiety were no longer difficult. Our situation hadn’t changed but my outlook did.
I had forgotten the golden rule: Putting myself first isn’t selfish, it’s necessary. I cannot be helpful to my family or others unless I am mentally and spiritually well.
I often wonder how much my depression affected my family. As I began feeling better my family began getting better too. At 18 months old Eli began saying words, one or two turned into three and four and within weeks he was chattering up a storm. It was wonderful watching him blossom. I felt hopeful as well as afraid that it wouldn’t last. Periodically, I would feel a pang of disappointment. I thought I was losing my mind. Why on earth, when my child was showing such improvement did I feel disappointed?
It’s not that I didn’t want him to do well. I understand that now. It’s just that I had been so full of fear and anxiety that Eli would be diagnosed with autism that I had carefully prepared myself for just that. So when he began to show signs of typical development I felt this tiny glimmer of hope but was still too afraid to believe that he might actually be okay. Having so thoroughly prepared myself for having two children on the spectrum I hadn’t given much thought to what it would look like having one child on the spectrum and the other not.
Interestingly, shortly after Eli turned two years old the University of Pittsburgh performed an ADOS assessment on him as part of a sibling study that we had enrolled him in. He scored just on the line for having autism. The Child Psychologist that scored him said that due to his score and the information that I had provided that she would recommend him for an autism diagnosis. I spent so much time and energy preparing myself to hear those words that when I finally heard them I found that it didn’t change anything.
I never followed up on her recommendation. Eli just turned three years old. He communicates well and although shy at first, opens up and plays well with others. The repetitive behaviors that he displays do not interfere with his day to day activities. So at this point, we do not see the necessity in seeking an autism diagnosis.
I am learning that autistic or not they are individuals and there is no one size fits all parenting. Each of my children has their own sets of strengths and weaknesses. The best that I can do for them is to take care of myself so that I can be their rock, their unwavering support as they navigate their own way through life.