Part of family centered care is making sure that all those involved in Chase’s daily routines understand how best they can support him in his every day environment. Grandpa doesn’t have much experience with six year old children (he is my stepfather and never raised small children). He looked at me today and said, “You know, he isn’t anything like I imagined he would be!” (Grandma has come to us for visits in the past – it is easier and cheaper for her than the three or four of us). The first time he said this I bit my tongue. He has preconceived notions of what autism looks like. Later in the day I bit my tongue again as Grandpa said for the 20th time to Chase “use your inside voice”. Chase starts to tune you out after hearing a directive phrased the same way over and over. I know I do. I have learned with Chase that redirection in a variety of ways is more effective. We use visual cues, I place my hand on his should and whisper back to him, I change topics (most of the time when he gets louder than normal it is when he is super excited about something), or remind him to use his inside voice. We even have colored, and laminated trains with numbers to indicate no talking, whisper, inside voice, outsidevoice. (We use then for touching too) I find using a mixture of these techniques helps him.
I spent time thinking about how to approach my step-dad and even my mother on what the best way to share the complex and special person Chase is. When the kids were finally asleep I grabbed my copy of Lucy Jane Miller’s book Sensation Kids and prayed for inspiration. An opening soon appeared when my Step-dad said, “You know, Chase is just like any other hyper active six year old. I don’t see anything wrong with him.” I paused, collected my thoughts and replied. “Your right, he is a hyper active six year and there is nothing wrong with him.”
My mom had earlier shared that Grandpa was a bit worried about how he would get along with Chase. I kind of rolled my eyes, but knew that in many ways I may have added to this fear. I am coming to terms with the thought that maybe in trying to help others understand my son I may have shared who my son is a bit unevenly. I have been accused of focusing on the negative often in my life. I am sure that is a side affect of my anxiety and depression. When I am not awed by the beauty that is constantly around me I often think in terms of doom and gloom. Has that been rubbing off in how I convey my feelings for my child.
I’ve been grateful for the past couple of weeks as I have started to read blogs from other mothers traveling this bumpy road of parenthood. Although my feelings of doubt, uncertainty, and guilt have swallowed me whole for moments in the past few days I have come to a stunning conclusion. I need to find joy in the journey. While I think it is important to share the struggles that Chase faces, I also want to show the world what a bright, funny, loving, beautiful human being he is. In order to do that I decided to start with my family. In order for them to know him, they need to be aware of what it is he actually deals with on a daily basis.
I picked up Sensational Kids and held it to my heart. I took a deep breath and looked through the index hoping to find that inspiration I felt I needed so desperately. We began talking about Sensory Modulation Disorder in terms of sensory over-responsivity. I shared stories of how Chase had a meltdown at school, one so bad that daddy had to go and pick him up. As soon as my husband got there he listened to Chase as he cried over and over again “The fuzzies are hurting, the fuzzies are hurting.” Scott got down and asked him, “Chase, what are the fuzzies?” With tears rolling down his face Chase responded “The fuzzies on my socks.” “Do you want me to help you take off your socks?” Huge sigh of relief left my son, the tears and the meltdown ended. Too bad his teachers hadn’t picked up on what was going on. As I shared this story my step-dad said, “huh!”
I then laughed and said, “Hey, mom. Do you remember that time when we came to visit right after Chase learned to crawl. He crawled like a speed demon across the carpet, but the minute he reached the linoleum he started to bear crawl on his tippy toes. He did that in the grass too. To this day he refuses to walk in the grass barefoot.” Mom giggled and nodded. We talked about how Chase has special glasses that darken in the sunlight to protect his sensitive eyes, how cute he is in the morning – I have to make sure he is fully awake and get permission to turn on the lights, out of concern for that over sensitivity. The dichotomy that is my loud son and his short fuse when it comes to loud noises. He can dish it out, but . . . . .
I found a way to share what Chase struggles with on a daily basis, and prayed that I was doing it in a positive manner. Sharing stories of Chase had my mother talking about my siblings. As my mom talked you could see that warm glow that emanates from her when she talks about me and my five siblings. It is obvious that she is coming to understand our past, how all us kids had sensory issues. Every one in the world is sensitive to one thing or another at some point. It is when the sensitivity begins to effect our daily function that we need to take a closer look at things. That is what we are doing with Chase.
I didn’t only share the humorous stories though, because Chase deals with his own share of heavy stuff. He struggles with emotion regulation. We went to the store yesterday and some strange lady started talking to Chase. He cringed from her and the held up his fist at her. His way of saying get back, you are in my bubble. I talked about what a meltdown looks like and how aggressive, and sometimes violent Chase can become. These meltdowns have lessened exponentially, but Grandpa needed to know of their existence.
I’m not sure how effective our conversation was, for at one point he said “Will he ever lead a normal functioning life?” I told him of course. Grandpa has a long way to go, but he is learning. Just like we all are.