26 Mar Actions Speak Louder than Words
by Denise Caudill Irons
Before I had a daughter with a diagnosis, I was not familiar with the special needs community. My education had a slow beginning, but grew as I needed more information. I am fortunate to have access to knowledgeable people who helped guide me along the way. Now, by being open and transparent about our experiences, I hope that we are enlightening others who are not as directly impacted. My approach to providing awareness has evolved over time. Before I could become an advocate for my daughter and the special needs community, I first had to become comfortable and informed.
Although my daughter did not receive a diagnosis until she was 5-years-old, we knew she was developmentally delayed. To help her acquire skills that came natural to her typical peers, I would provide opportunities for her to practice activities multiple times. When my daughter was about 4-years-old, she participated in an adaptive gymnastics class. There was a block of time between picking her up from developmental preschool and the gym class; but, not enough time for us to return home and wait. I used the time to practice eating at restaurants. Dining out was neither a pleasant nor an easy experience. I was concerned with teaching her manners while trying to get her to eat. Each week we would try a new fast food restaurant in hopes that we would find one that was a good fit for us. One Wednesday, we went to an Arby’s near the gym. The restaurant was empty, which was always a relief. As we were attempting to have our meal among my requests of quiet voice, stay seated, stop fidgeting, and please, just eat, an older woman who worked at the restaurant sat at the table next to us. I could not understand why she selected that seat to take her break when all of the seats were available. The next few minutes felt like an eternity as the employee unapologetically stared at us. My daughter was not acting any worse than a typical child, but my anxiety was rising. I could no longer take another excruciating minute. When we got up to leave, the employee asked if my daughter was autistic. At this point, I was taken aback and nearing a breakdown. Unable to register what just happened, I quickly responded, “Yes.” We left the restaurant and never went back. Even though my daughter did not have a diagnosis at the time, I gave her one in order to shut the woman up and escape. To this day, I feel shame for perpetrating a stereotype. I did not stand up for my daughter or other children with autism. Even though I did not owe this woman an explanation, I missed an opportunity to provide her with awareness and knowledge that could have helped her show more compassion and understanding in the future.
Today, I am at the other extreme of the spectrum. Within minutes of meeting new people, I am quick to reveal my daughter’s diagnosis to them. Rather than feel ambushed, I take the initiative. For the most part, people are kind and understanding. I am open to answering their questions and giving them insight into our lives. I have developed compassion and understanding for them as well. Some of their comments, questions, and actions could be perceived as offensive and hurtful. In these moments, I try to look beyond their words to see their intention. Over time, I have observed that people have become more comfortable, adaptable and cognizant of my daughter’s differences.
As my daughter is maturing and quite aware of what is being said about her, I am rethinking my approach to divulging her diagnosis so quickly. Recently, a conversation at the horse barn prompted me to look at my behavior from a different perspective. My daughter had her annual checkup. While chatting with another horse owner, I mentioned how happy I was that my daughter gained a couple of pounds since her last appointment. I also disclosed her actual weight. The woman casually responded by revealing her granddaughter’s weight. Although she is a few year’s older than my daughter, they have a similar build. I was glad to hear her how much she weighed. It made me feel better knowing that someone similar to my daughter had a hard time gaining weight as well, and it gave me hope for the future. While we were chatting, the granddaughter was in the middle of the arena tacking up her horse. Almost immediately after her weight was revealed, she quipped, “That’s really not your information to tell.” She was half joking, but her grandmother apologized profusely. Not until later did the girl’s comment take on a personal meaning. I realized that my daughter’s diagnosis is not my information to tell. As she gets older, I need to respect her privacy. Until I heard the comment at the barn, I had never truly thought about it. I would never want to provide awareness at my daughter’s expense. For this next phase, maybe I need to step back and let her actions speak louder than my words.