My daughters’ autism is something that they will live with for their entire lives. How will you handle the few moments when they enter your life?
By Carl Petersen
“So we talked about moms and dads
About family pasts
Just getting to know where we came from”
- Blue October (1)
Nicole eased me into the challenges of her family during our first online conversation. First she casually worked in the fact that she had triplets. When that did not chase me away she mentioned in passing that two of them were on the autism spectrum and waited to see if I would find a way to end the conversation. It did not end and six years ago today I married the woman of my dreams. I was now a father of five.
Prior to meeting my daughters one child had been introduced to me as being on the autism spectrum. According to the Center for Disease Control autism now affects 1 in 68 children. (2) With such a high rate of occurrence, how is it possible that I had only previously met one child with this disability? Part of the answer is ignorance, without knowledge of what autism is, I probably met a lot more people with this disability and did not realize it. Some is probably explained by the fact that included in the 1 in 68 statistic are highly functioning individuals who do not present their symptoms in a casual encounter. Unfortunately, the final part of the answer is that many of these children are simply hidden from view.
Although it has become easier with time, family outings with my two daughters was not an easy endeavor. When we first met they were six years old and not yet potty trained. One did not speak at all and one mostly responded to questions by repeating the question back to you. These communication difficulties often caused frustration to boil over into temper tantrums. They also were easily distracted by their surroundings, causing concerns about safety in traffic or getting lost in crowds. Their comprehension of “stranger danger” was nonexistent.
If all of that was not enough, we then had to deal with the reactions of strangers as we ventured out into the world. In one case we were enjoying dinner out with my extended family at a Red Lobster. There was a lot of reminiscing and storytelling going on and the mood was festive. Add food to the equation and the girls were very happy. Imagine the sounds of a cooing baby coming out of an eight year old and you have an idea of how it sounded. When my oldest was finished, she asked if we wanted her to take the girls outside. From the next table, we heard an answer of “yes, please do.”
Keep in mind this was not a fancy restaurant with men wearing ties and people speaking in hushed tones. Nor was the kid throwing a tantrum. If that had been the case we would have removed her immediately as we have done before. She was sitting in her chair, eating and making happy noises.
I immediately informed the man that she was autistic and asked if he now felt bad about his comment. His response was that he was in a wheelchair and did not ask anyone for any special favors. Later, when he started to leave, my Dad remembered that comment when he was asked by the man to move his chair a little so that his wheelchair could fit through the aisle.
Sometimes the judgment was leveled directly at me. For example, on the girls tenth birthday we let them skip school and took them to Disneyland. It was the year that Disney was letting people in free on their birthday, but since we had annual passes we were given a gift card instead. One of the girls wanted a princess dress, but they did not come in her size. We managed to divert her attention to a Minnie Mouse dress, but then found out that her size was not on the shelf. I could see the eruption coming and quickly hustled her out of the gift shop.
By the time we got out of the store the tantrum was in full swing. I placed her against the wall in time out position in an effort to have her calm herself down and she promptly responded by smashing her face against the wall. While this is a behavior that is common in some autistic children, it is not one that I had personally experienced before. Now I had a kid in full tantrum mode with blood flowing from her nose. At least no one said anything, but the looks I was getting were not making me feel comfortable.
Before leaving for the night, we decided to check the big Disney store outside the park for the Minnie dress in the correct size. What was a bad decision quickly became worse when her tired sister started to feed into the new tantrum. I grabbed them both and quickly dragged them through the store. Just as we get outside I hear a kid ask his parent what was wrong with the girls. The answer: “He’s a bad Dad.”
I did not say anything back to that parent that night. I was dead tired and just wanted to calm my kids down. However, I would like to respond to him now. Every day my wife and I try to be the best parents that we can be. Like all parents we love our kids with all our hearts, try to meet their needs and worry about their futures. And we refuse to keep them hidden. A smile would have been so much more helpful than your judgment.
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