Johnny’s Story

I never imagined that a child of mine could be different or challenged. It was never part of the plan. I always had a plan it seemed. And for the most part, everything came to pass as I saw it would..until it didn’t.

I minimized Johnny’s lack of verbal development or even lack of social development the first few years because I was busy. I had 3 kids in less than 3 years with Johnny being the third. I was working (and still am) as an emergency room doctor and my husband and I split our time between California and Maine. Life was a blur and Johnny was a quiet child. He was happiest putting rocks in the drainage pipe in the back yard. He was affectionate with our family; would smile and return smiles but never with others. He would play happily by himself and seemed engaged though in retrospect very compulsive in his activities. Family stories helped me dismiss the nagging concerns when I was told by relatives that my husband did not talk until he was three and of course, who needs to talk with 2 older siblings talking for him others would say.

Johnny at 2 years could not communicate any information. He would stand in the middle of the kitchen and cry. He would cry and then tantrum many times a day. It was not clear what he wanted. He could not point, gesture or even attempt to convey what it was he wanted or felt. He did not even look in the direction of something he wanted and could not convey emotions beyond a smile or tears. He was paralyzed… and so was I. Additionally, he would do this every night going to bed. He could not fall asleep alone or he would scream for hours. I felt as helpless as I am sure he did. I was incapacitated with sleep deprivation and frustration. I felt like a terrible parent because I could not reach my child. I did not know what to do. The pediatrician told me I was anxious and that I should just be patient. Autism was never brought up in any of the conversations we had.

Johnny went to a local preschool at 2 ½ yrs. and his nickname was the “little physicist”. He wound gather a hand full of small pebbles. He would climb to the top of the play structure and camp out at the top of the ladder. In and among all the throngs of kids pushing through and screaming down the slide, Johnny would carefully select one small stone, place it on the top of the slide and then carefully let it roll on its course. Kids would be pushing and screaming all around him but his attention was like a laser beam. He was hyper focused. With each small stone, he watched it with a keen eye, appreciating all the nuances of its trajectory and the completion of its course. He would repeat this over and over. I can only assume he was fascinated by how each rock uniquely rolled down the slide and how it landed on the ground. It was incredibly gratifying to him. It was never something he could communicate even to this day. I’m sure this activity was also predictable and safe. He lived for it. It was all he wanted to do at preschool despite my many attempts volunteering in the class and attempting to facilitate play between him and others. I did not realize then how terrifying verbal and social interaction were to him. He simply did not know how to do it and where to start. He had found an oasis at the top of the ladder. This peace quickly changed to distress the minute he was brought inside the class to interact, paint or join a group activity. He would start to cry again until we went home.

I independently referred Johnny to speech therapy at around this time. People would say, “Oh, you’re a doctor!” like it was a help. I had no idea what to do. My being a doctor in no way was helping my son or me. I was not schooled in Autism. I was an Emergency Doctor. Autism is not an emergency… until it’s your kid. There was also very little public knowledge about autism at the time in the early 2000’s and the incredible spectrum it can be. Many, including myself, did not realize that it could be mild or even that you could have a similar related condition called Pervasive Development Disorder (PDD). I had not learned anything about this in residency and really had no training in it in medical school. I honestly had very little knowledge of autism and child development and the vast area of expertise around reaching and teaching these children. I only knew that my child was not progressing. He was a complex enigma. He was at times unreachable and robotic and at other times smiling and affectionate. I was becoming increasingly worried and felt completely overwhelmed in not knowing what to do.

In June of 2006, Johnny turned three years and nothing had changed. He still was nonverbal despite 6 months of speech therapy and his behavior seemed to have become more compulsive. When he was stopped from his usual “go to” of throwing rocks or filling up drainpipes, he would tantrum violently. He was also getting bigger and stronger. Later that summer our family spent time with my sister and her family in Maine. I was looking forward to it. I was hoping for a relaxing trip, enjoying the cousins playing together and reconnecting. Johnny would spend hours throwing handfuls of sand into the tide pools on the beach and would scream and violently tantrum when dragged away after many hours on the beach. It was strange and clearly not normal. None of my friends had children doing this and my older 2 girls had developed normally. I don’t think I had realized to what degree Johnny appeared different until I saw him through the prism of trusted family members eyes. My brother in law who is a pediatrician gently looked at me one of those afternoons after watching me struggle with Johnny and said, “Laura, do you think maybe you should have Johnny tested?” And then I knew. I was so buried in my own denial that even my family felt uncomfortable broaching this huge elephant in the room. I was only doing my son a disservice by hoping and praying things would just magically right themselves. In retrospect, I appreciate the kind manner in how my brother in law allowed me to see that my son needed additional help, help I could not give him myself. It was the opening of a new door into the world of Autism.

In the years that have come, Johnny has made huge progress. He is a very verbal and quirky 14 year old freshman in high school. We have supported him in all the ways we could with early intervention, IEPs in school and social skills classes. I have also come full circle. When Johnny was first diagnosed with PDD, I internally mourned a child I thought I had lost. I was depressed. I have since come to appreciate the differences in my son and to value the person he is, not the one I expected. I have learned and continue to learn so much through Johnny. I remain in the graduate school of life with an autistic son and hope someday I graduate with honors.

I think any parent who has any children, understands the process of letting go, as they grow older and also letting go of expectations. For any parent, it is normal to have expectations, hopes and dreams for your child. However, when your child is clearly challenged from a young age, it makes that process of letting go of expectations, more sudden, raw and painful. However, what I realize now is those were not fair expectations because they were mine, not my sons. What I have tried to teach Johnny is to have his own hopes, dreams and expectations within the context of the person he is. It has been liberating for me as a parent and person while also messaging Johnny that he can be successful and fulfilled despite any diagnosis. If I could speak to the much younger me, I would say that life has a way of evolving and showing that all things will work out, maybe not in the manner expected, but in the manner they are meant to be. Hope and love are the two most powerful and lovely aspects of parenthood that I have learned. I feel, however defined, the spiritual force that allows us a shared consciousness and binds us all together, is all accepting and good. I feel parenthood has also reinforced this to me.

I work in a busy emergency room. I see human anguish and pain. However, what I have learned as a parent has taught me more about being a good doctor than any class could have ever taught. I know what it feels like to hurt. I know what if feels like to have had loss. I know what it feels like to have hope. I never learned that in medical school. I have learned that through life and through being a parent of a child with challenges, but at the end of the day, is perfect is his own way. When I look to Johnny’s future, I am not sure where he will land. I hope he is happy and surrounded by people that care for him and appreciate him for who he is. If he continues to need support even after I am no longer on this planet, I hope it will be there for him. It brings me so much joy to know that communities like Sunflower Hill are being created by similar like-minded people to be a haven for children like mine.

Written by Laura Foster, MD