This article was published in the July-August 2011 Issue of Autism Asperger’s Digest Magazine
The Key to Happiness
By Shanti Kurada
Sometimes I think back to that day when everything in my life changed. Dreams vanished, and everything I had control over slipped through my fingers. Priorities rearranged themselves in an instant. Life took on a different tone and hue.
Strangely, what I remember now most about that day, more than the tumultuous shifts, are the little insignificant details. I remember that it was a bright sunny day with a faultless blue sky. I remember sitting there in the psychologist’s office, the rich aroma of coffee permeating the air, the receptionist’s red nail polish and her perky smile. Somehow it all didn’t fit together; it was wrong. How could the day still be so beautiful, how could people indulge in simple everyday pleasures, when my life was falling apart?
As I sat there holding the psychologist’s report, reading it and not reading it at the same time, my eyes blurred as I struggled with multiple emotions. I looked for an explanation, answers as to how and why, but they eluded me.
We had long suspected the possibility of autism before this day. For months we had observed our younger son’s perplexing behaviors and issues, the questions about why haunting every waking hour. For months we had been caught up in fear, denial, and shock, before finally seeking that assessment.
Despite the crushing evidence, questions still lurked in the corners of my mind. Is this really possible? Can this actually be happening to us? Is this some kind of crazy nightmare I’m going to wake up from? Despite the realty at hand, moments of disbelief nagged at me. Why then did I expect my loved ones, close family and friends, to respond any differently? Why was I upset with them for reacting the way they did?
My mother had already known about our concerns for some time – my son’s speech delay, the decreased eye contact, his fascination with strings and ribbons. I remember telling her the news. “Mom, the doctor said it is autism.” I still couldn’t bring myself to say, “He has autism.”
“What are you saying? He’s only three! How can they say this? Children develop differently. He will start talking, I know. It’s just a matter of time!”
I sat there listening to her voice traveling over the oceans and landmasses that separated us. The comforting voice of my childhood. But I could derive no comfort that day. There was only her disbelief, her denial. I listened until I couldn’t take it anymore.
“Mom, I have to go now,” I said quietly.
Even with the long distance call, even with the bad connection, my mom recognized the quiet anger in my voice.
“Don’t be upset with me,” she said.
“I’m not upset mom. I just can’t … talk … at least not … right now. I’ll call you later.”
I tried telling my best friend. At first she listened quietly. After a long silence she said, “I remember this kid Jason from my neighborhood, back when we lived in Sacramento. He didn’t talk much and acted different. Some kids would pick on him. I later found out he had autism. Guess what – I ran into some old friends one day and they told me Jason graduated from college like everyone else and went to work.” She continued to talk, but I had already stopped listening – that day, and days to come.
Every time I ran into her, she told me a miraculous success story of recovery against all odds. Or she would dig up some article on something that did wonders for someone.
“You should really look into getting a dog,” she said one day as we were going for a walk. “I was reading that animals can do wonders for autistic kids.”
That’s great, may be I should go live in the zoo then, I wanted to say. Even though I didn’t say it, she noticed the look on my face and flinched. That’s the day a faint line appeared between us. She stopped giving me advice. But it became wider as she stopped much more than that. She stopped being humorous, fun, and caring. She stopped being her usual self with me.
So I closed up. I stopped talking about my son, about autism. I stopped sharing. What was the point? No one “outside” will really get it, not even the most empathetic, caring ones.
I felt guilty. I knew these people loved me. I knew they were trying to help, yet their words only felt alienating. I began to wonder, what did I need to hear from my mom, my close friends, people who cared for me and cared about what I was going through? What could they do that would make me feel better? Nothing, I thought. No one could take the autism away – and there was no next best thing.
And then one day it happened. I found my answer, quite unexpectedly. In the strangest of places… with the most unlikely person.
One night, after I put both my kids to bed, my younger son started wheezing a little before 9 pm. I gave him some steam, assuming it would be another of his mild episodes. It started getting worse. When his medication didn’t seem to help, I called my friend, dropped off my older son with her, and drove to the hospital with my little boy. My husband was out of town. I didn’t bother calling him; it would be midnight in New York. Besides, we had been through this before. I knew I would be able to handle it.
But something was different about him that day. My son, who is usually compliant with the nebulizer, gave me a hard time with it. He kept asking for his dad. “Dadda” he kept saying in the car, each time sounding more scared. Maybe it was the time of day. Maybe it was the oddness of dropping his brother off at bedtime. Or maybe he missed his dad. Whatever it was, his anxiety kept escalating.
It was a struggle to take him from the car, through the dark, deserted parking lot, into the hospital. We checked in and sat down in the waiting area. Suddenly, he bolted and started heading toward the doors. Running I caught up with him, and brought him back. This time I sat him on my lap, held him firmly, and prayed we would be called in quickly.
Every minute seemed like an hour as he struggled to break free from my grip numerous times. I rocked him, sang to him, talked to him softly, reassuringly. But each time he seemed to calm down briefly, he would start panicking again. It was as if he was caught up in a vicious cycle of anxiety and asthma, the two things feeding off each other, worsening with every minute. With each labored breath, he kept repeating “home,” over and over again.
There was only one other person in the waiting area – a lady who looked to be in her sixties. She came over and sat by us. She talked to him, matching my calm reassuring voice. She told him the doctor would see him soon and make him feel better, and then he could go home and have a good sleep. He ignored her and continued crying. She got some water and offered it to him. He brushed it aside, and it spilled on the carpet. I desperately looked in my bag for candy and found none. My bag, which is usually crammed with all kinds of junk, was the model of cleanliness that day.
The lady looked in her bag and pulled out her keys, which were on a ring and attached to a long rope, the kind you wear around your neck. They were old keys, the kind that seemed to belong in an ancient mansion or a haunted house. There was nothing shiny or metallic about them that might capture his attention.
She gave him the keys; he took them, yet continued crying. Then he started twirling the rope, the way he twirls ribbons and strings at home. His crying lessened to whining. Then he shook the rope and the keys jangled noisily. He stopped fighting me and sat in my lap, whimpering, twisting and turning the rope, jangling the keys every now and then.
I heaved a sigh and looked at her in gratitude. A few minutes later we were called in. The lady was kind enough to let us go in the exam room with her keys. She assured us she would be right there waiting, not to worry.
My son continued to play with the keys, calmly tolerating the examination. He then had to take two nebulizer treatments back to back, and this too he did calmly. After that his breathing was a lot easier, and he was clearly feeling better. When I asked him to give me the keys, he did so without any fuss.
We went out and I handed the keys back to the lady. “Thanks a ton! You’re wonderful!” I said to her. She waved that away and said, “I’m glad my old keys came in handy. My husband is always complaining that half of them don’t work and I should get rid of them. I guess everything has a purpose.”
As I was driving home that night, I felt strangely comforted. Yes, no one can take away my problems. But I finally realized what I was looking for. Help in a time of need. It was that simple.
The lady instinctively knew that was all I needed, and that was all she could offer. Help in a moment of need. So many well intentioned people bumble in confusion, say the wrong things, and make you feel worse. They feel helpless, knowing they are unable to make things better.
So I talked to my mom about it. I told her, “I need to talk, tell you what I’m feeling, what I’m going through. I need you to listen. It may not all make sense. But please, just be there, and listen. And I need your help when I come and visit. Big time! I’ll ask. I’ll be very specific.” I told my close friends pretty much the same thing. Now knowing what they could do, they were eager to comply.
When I visited my mom, she made all of my son’s favorite dishes. She is a wonderful cook and he thoroughly enjoyed himself. He responded with lots of smiles and hugs. She even got him to help her in the kitchen. Sometimes she gave him a bath, and when she put soap all over him, it tickled and he giggled. They would go back and forth, tickling and giggling.
I desperately needed to spend one-on-one time with my older son, who was being swept aside in all the chaos. My friend started offering to watch my younger one or take him to the park, so I could take my older son to classes. After his class, we’d go out for a treat and talk, just like before. Sometimes my other friend would call and offer to take my older son to a movie or an amusement park with her kids, so I could attend to my younger one.
We all started feeling better, more connected. I still think of that night at the hospital. I remember the lady’s words, “Everything has a purpose.” I suppose everything does. Her old keys. My son’s autism. How it brought two strangers together in a moment of need. How it can bring out the caring, decency, and kindness in us all.
Shanti Kurada is the Editor and Publisher of Autism Bay Area Magazine. She lives in Fremont, California, with her husband and her 2 children, ages,14 and 10. Her younger child has autism. She started Autism Bay Area Magazine with the aim of helping other parents feel more connected, have access to information on therapies, tools, and technologies, and find support and inspiration.
Leave a Reply