Stories From the Heart: December Is For Crying
I couldn’t control my sobbing. Weeks before Christmas, I was on the floor of my bedroom closet crying harder than I had ever before. Although he was there, my husband was unable to console me. There was something wrong with our son. Or maybe there was something wrong with us. Either way, Jonathan was two and a half years old and out of control.
Earlier that day, we were at a birthday gathering for the one year old daughter of friends. Jonathan could not stay in one place. He wasn’t just active. He could not stop moving, and as he moved he dumped things and hurt people. When he shoved the birthday girl, Julia, to the floor and walked over her, we took him home.
I don’t know why I went into the closet to cry. Maybe I thought he wouldn’t hear me in there. Maybe I just wanted to hide.
About a week before Christmas, I attended a baby shower for a mom in my playgroup. As I walked back to my car with my friend Arlene, I just broke down. “How come everyone in playgroup is having a second baby and I can’t even handle one? Life is so hard! We can’t go anywhere, things are so stressful and miserable at home and I think I made a mistake by having a baby in the first place. Our pediatrician has already dismissed our concerns and everyone tells us ‘he is just being a boy’ or ‘he needs a good spanking.’ What am I doing wrong?” Arlene didn’t have any answers, but she did stand in the street with me for an hour just listening.
A few days later, Arlene called me. She had overheard two women talking about their children and thought their situations sounded like mine. She asked them for advice and although mutual friends told her it wasn’t her place to do so, she nervously passed along the name and phone number of a center that could evaluate Jonathan.
I didn’t even have to think about what to do. I immediately called my husband at work and told him that I was going to have Jonathan evaluated. Next I called the center and set up an initial meeting.
On December 27th, Becky, our new case manager, came to my home to meet me and Jonathan. She watched as he dumped toys from their containers onto the floor without stopping to play with anything. She took notice that he did not talk except for very few words and seemed not to hear me when I talked to him or called his name. She told me that she thought Jonathan would benefit from a full evaluation and we set the date for January 7.
Because of his young age, Jonathan’s evaluation consisted of him being lead through a number of activities by a play facilitator while he was observed by a psychologist, clinical social worker, educational specialist, speech-language pathologist my husband and me.
For over two hours I watched him, wondering if what he was doing was normal. I saw the specialists scribbling notes and I felt my stomach tightening into a knot. When the evaluation team had gathered the information they needed, we took Jonathan to lunch. At 2:00p.m., Vinny and I were back at the center listening to the evaluation team recount what they observed that morning.
Although everyone started with something positive about Jonathan, it didn’t take long to get to his deficiencies and the list was long. I wasn’t surprised. I was prepared to hear their recommendations and do whatever I needed to for my son. However, I was not prepared for what they said. I felt like a boulder had fallen from the sky, crushing me under its weight and affecting my ability to hear, think and breathe.
“Autism? Did you say that he has Autism?” “Not Autism. We said that he possibly has PDD, which is on the Autism spectrum and he should be evaluated by the TEACCH center to rule that out.
“So you think he has PDD? “We think he might?” “How do I get an evaluation?’ “Well, there is a two year waiting list.” I couldn’t comprehend the words in my ears or the thoughts in my head. My son maybe has something called PDD which is a kind of Autism, but not really Autism, and the people I need to see about this can’t help me for another two years. I started firing off questions. “What does this mean? Will he learn? Will he talk? Will he go to school? How do we fix this?” “We don’t know what his future holds. Some children make progress, but there is no way to know how much progress any child will make. There is no cure for Autism.”
“But he doesn’t have Autism. He only maybe has this thing like Autism.” There was silence. I sat there with a sickness in my stomach and tears sitting in the corners of my eyes. I waited to hear what I needed to do next. The next five years brought both tears and triumphs. Jonathan underwent 21 additional evaluations. He attended a special preschool and spent hundreds of hours in various therapies.
Vinny and I mourned the life we thought Jonathan would have, and began to shape the life he could have. We found ways to teach him skills that most children acquire naturally and we learned to appreciate all of his accomplishments. We discovered that he is funny and incredibly smart. At the age of eight, Jonathan was formally diagnosed with high functioning mild Autism.
By that time, the label didn’t matter. Jonathan was blossoming in a typical first grade class. He still had challenges, but what child doesn’t? This December, six years after my crying jag in the closet, I found myself crying over my son again. His school put on a production of “Bah Humbug”, their version of “A Christmas Carol”. The whole school was a part of it, and Jonathan’s grade played street urchins in the chorus.
I sat in the auditorium watching my beautiful child, with his hat askew on his head, shuffle across stage singing “Life Was Meant to Live” and realized that at one time I could not imagine Jonathan being able to do this. I felt my emotions rising into my throat. I knew my family could not control everything that happened in our lives, and we were certainly living differently than we planned, but in spite of the Autism, we were living a good and happy life.
Then the tears came. Not loud forceful sobs, but silent, joyful tears slowly sliding from my eyes.
By Lisa A. Simone