I was paid twelve dollars once a week as a teenager to mow the lawn. I remember enjoying the lines I made in the grass, rounding the corners, but mostly, getting the chance to talk to myself. I guess that I assumed that since I was in my own world out there in the front yard, in front of anyone who drove by, that I was the only one aware of the conversation I was having.
I have always communicated, with or without anyone asking me to do so. I grew up in a family where we fought, we loved, and we enjoyed each other. We still do, thankfully. It was a safe environment, one where we felt the freedom to express our emotions, our personalities, and our needs. I think these qualities contributed to my openness, my way with words, and the types of relationships I value.
When Noah was diagnosed with Angelman Syndrome, I wasn’t able to fully grasp the extent to how it would affect him. We just kept moving. We kept our routine, because as we were told, “you’re already doing the things you should be”. When we started using his current AAC device about a year ago, I remembered feeling like we did when he first received his iPad to use as a play/learning tool. It was daunting. He wasn’t interested in using it functionally (at least from my limited perspective). He wanted to swipe his fingers on it, push random buttons, and push the power button over and over. I had planned on teaching him how to play color games, work on matching, and begin to show him writing and drawing skills. It ended up being a source of frustration for the both of us, and I resorted to giving it to him while I prepared meals to keep him occupied on the couch.
The story is similar with LAMP (speech program we use). When we began our journey, I had exceptionally high hopes about what he would be doing in a few short weeks. Noah and I quickly became frustrated that our independant expectations of the device and it’s purpose weren’t being met. I have gone through cycles of giving myself permission to relax with its role in our lives, to pushing him to use it in every functional opportunity – most of which are unnatural and contrived.
Recently, I have become more relaxed with allowing Noah to use LAMP for what would be considered non-traditional uses. I have let him play with the device on his own, in the car, at a coffee shop, or in bed at night. He has pushed every word the device has, created sentences (ungrammatical, but still), and asked for items. I have found him at the dining room table “talking” instead of watching television, playing games on his “play” ipad, or picking (sitting) on his little sister. Just like when I gave him unfettered access to his “play” ipad years ago, he has taught himself more in mere weeks than I have been able to do in over 8 months.
My hope is to create an environment in my home where my children are free to speak their minds, feel accepted, but mostly, feel heard! Noah is showing me what real communication truly is and how vital it is for having a centered, calm existence. He has consistently been able to ask to “facetime nana”, to “get dad”, and “listen, mom”. He is undoubtedly saying more than I had imagined when we began. If you are familiar with LAMP, you will understand the significance of Noah repeatedly using a three button push to access his name (or other family members names).
I’m so thankful for the role that Noah’s speech therapists have played in my life, all the way from our early days in Rochester when he was 15 months old. While Noah has absolutely learned from them, I believe their job has been to teach me to be an advocate for my child. They have taught me to expect everything while at the same time, allow him to just be a kid. Watching him ask for something or tell me how he feels is empowering to both him and me.
I’m also thankful for the security I felt expressing myself as a child and now as an adult. I’m grateful for the people in my life that listen and value my words and treat me with significance. I value communication and words, deeply! I will always make it a priority that my children experience the same acceptance and awareness of their significance, whether they are using their voices or a device that speaks for them.