Communication is the most natural skill that we have. Babies will cry when they are hungry, wet, or not feeling well. We can determine their needs based on their cries. We communicate daily without even thinking about it, but what happens when communication doesn’t come naturally? Communicating isn’t something that I thought about in my day to day life. Like most everyone, I communicated without even thinking about it. This all changed when I started dating my husband. My step-daughter, Caroline, has Angelman Syndrome. Angelman Syndrome is a rare neuro-genetic disorder. Common characteristics or symptoms include, “developmental delays, seizures, walking and balance disorders, and lack of speech,” (ASF, 2019). Communication has now become a very central part of my life. I didn’t have much experience with the special need’s community before Caroline. I know I had my own biases but so much has changed the more I’ve come to understand Caroline and communication style.
While my life experience with communication hasn’t yet been on a global scale, trying to communicate with someone who cannot say anything back or sign back can still be very challenging. From lesson four and our chapter readings, we understand that communication is the exchange of information. When I communicate with Caroline, it is essential that I not only use key works that she understands but also make sure that my facial expressions match the context of what I am saying. This is important when she is decoding the message. She usually has very high receptive skills and nonverbal skills. I have also had to learn how to understand what she may be trying to ask for when she pointed at something or behaved a certain way.
When I first started dating my husband, Caroline was working on communicating with using pictures. She could point to pictures of what she wants to eat or drink, or she could choose a red “x” for no and a green check mark for yes. This was difficult at first because there were not enough pictures for what she wanted. We had to look at the things she used or did daily to create different categories with pictures for her life. Most recently in the last six months she has started to use an iPad that has a program with different categories and pictures to give her even further options to communicate her needs and wants. When I talk to her, I use the tablet to mimic the way she should use the tablet and get her familiarized with her options. There is an increased potential for error with so many options, but she has come a long way in six months. She can ask for food, drinks, or toys. The most entertaining part of this is to see her use the “no” and “I don’t like” buttons when trying to wake her up in the morning. She is just like other kids in that she doesn’t like to wake up and go to school in the morning and it makes me proud to see her gain the ability to voice this feeling.
There is plenty of potential for error when we try to communicate with each other. Sometimes she babbles and squeals and talk back to her like I would her step-sister. Communicating with Caroline has given me a different perspective and I try to put myself in her place when she is getting frustrated because she can’t explain what she wants. Living with Caroline has taught me a lot about communication and patience. Even thought we may not all communicate the same way, it is still important that we try to listen as best we can to understand each other. Our methods may be different, but patience, kindness, and understanding can go a long way.
Angelman Syndrome Foundation. (n.d.). Retrieved January 28, 2019, from https://www.angelman.org/wp-content/uploads/2017/02/Quick-Facts-about-Angelman-Syndrome.pdf
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