Wednesday, November 21, 2012


Learning to negotiate life with an autistic child takes time. When Nami was diagnosed with tuberous sclerosis, we knew it was possible that he would be autistic. The older Nami gets, the more difficult his behavior becomes. He is no small child, either, reaching 23 lbs. at 6 months and 32 lbs. at one year. Luckily he has only gained about 10 more lbs. in the last 2 ½ years. Nami’s unpredictable behaviors have increased with his age and weight. When he gets angry he bangs his head, throws things, punches, hits, and loudly yells and cries. When these behaviors started increasing, we took him out to public places less and less because we never knew what would set him off or how others might react. Nami can only say a couple words, so he can’t tell us how he feels or what he wants, often resulting in bigger and louder displays of frustration.

Our Chunky Monkey
Leaving the house is a huge chore. In addition to all the possible medical emergencies we have to plan for, we have think through and plan for multiple behavioral scenarios, including a quick exit. The preparation required in order to leave is another reason we don’t go out much. I’m so tired by the time we leave that I often no longer want to go. When Nami was a baby, we could take him anywhere. Then when his autistic behaviors started becoming more apparent, we had to learn how to deal with them. Bad experiences in public were a rude awakening to the fact that things were drastically changing.

Last year, my husband and my schedules were such that we were only awake and together a few hours a week. In that time we had to get an entire week’s worth of errands run or else one of us would have to take Nami with us. Pressure and exhaustion was constant and we couldn’t always get everything done. One time I had to run a quick errand into a grocery store. I just needed to pick up two things…it would be a quick in and out. I had no choice but to take Nami with me. On our way into the store he started screaming. I had no idea why he was mad so I couldn’t calm him down. I just thought, “I only have to get a couple things, so I’ll hurry.” After picking up the second item, Nami flung himself on the ground and was screaming and kicking. I picked him up and ran with my screaming child to check out. I wanted to leave the store but I knew I wouldn’t have another chance to go without Nami for days. As we arrived to check out, a woman standing in line stepped back and offered me her place. I gratefully took it and as I was checking out Nami flung himself on the ground again and continued screaming, kicking and forcefully banging his head on the tile floor. It seemed like everyone from three lines just stood and glared at me or gave me looks of horror. I wanted to yell at all of them to give me a break. I purchased my items and then picked up my screaming child. As I did so I met eyes with the mother who let me in front of her. She had so much compassion in her eyes.

I couldn’t get out of the store fast enough. I felt anger, rage, and frustration. As I was able to distance myself from the situation, I realized that I had witnessed outbursts in public before which helped my anger towards the customers dissipate. Even more than that, I was profoundly touched by the small act of kindness from this mother. This experience shocked us into recognizing how our lives were changing, but I was so grateful for the empathy of this mother.


  1. A nice reminder that we never know what is going on in the life of another person. Compassion is always a great response. Keep the darling pictures coming!


Related Posts Plugin for WordPress, Blogger...