When I was trying to think of a name for my blog, I honestly was having a hard time coming up with one. When a phrase I have used for years popped in my head, I knew it fit on a lot of levels. It was certainly appropriate for our experience with autism. I was raised in the Episcopal Church, and my faith journey would take me through some dark times and enlightened times over the years. The foundation that was laid when I was growing up was critically important to the fact that God and I have had a pretty steady dialogue for most of my life. I am terrible about dedicated prayer time, but God and I talk all the time. I thank my mother for stressing the importance of our faith growing up.
My husband and I met through the church, and eventually we would walk this walk together. During our early 20s, we drifted away from church, but he and I were called back to an active faith life in 2005 when we joined the Catholic Church. We went to mass as non-Catholics for more than a year, and every mass we would sit in the pew to listen to the homily, and during that time, each and every one could have started with “Hey Betsy and Kenneth, I’m talking to you….”. We would look at each other often during the homilies as if to say, “Did you hear that?” Each step and game plan we would intend to be permanent, and each time, God would put opportunities and circumstances in front of us that called us in a different direction, again, and again, and again. With every step, we would look back and clearly see where if we had not decided to do X, then Y could not have happened, and if not that then this could not have been possible. It was amazing how when we looked back at everything, it became so obvious, but in the midst of it, we could not see the bigger plan and the lessons and blessings that would come from a specific sequence of events. Each time that would occur, I could almost picture God with a grin on his face saying, “Do you mind if I could be in charge for a little while?!” Over the years, it became much clearer – I’m Not Driving. I’ve always thought it would be good on a bumper sticker, but it might be a little scary for whoever was following behind!
Another “I’m Not Driving” moment happened on the Sunday following the day we had to pull Jim from school. Another school that hosts an inclusive classroom program for kids on the autism spectrum, called the Angel Program at Holy Rosary, was holding an open house. It had been a stressful and emotionally exhausting week to be sure, but we had been referred to look at this program by our doctor and decided to give it a look as time was of the essence.
As we walked into the building, we were greeted by smiling faces as we made our way to the preschool classrooms. There were two 4K classrooms, and we walked into the first classroom where the teacher was visiting with another family. Once she had a chance to say hello, we visited about Jim and the events of the last couple of years. As she listened, I could tell she was familiar with the storyline. Jim, in the meantime, had made his way to the other classroom with Daddy. When I finally made it over there, the other 4K teacher had noticed Jim looking at the toy boxes and starting to open them. As I moved to stop him, she jumped in and helped him pull out a toy. As he sunk down to his knees to play with it, she did too. As she spoke to him, he looked up at her and smiled. He smiled, and he looked happy. I watched him play. I was trying to stay engaged in the conversation, but I was only half listening as I could not take my eyes off him. Such a simple small gesture that helped him to know he was welcome, and that smile was back on his face. He looked comfortable and relaxed, and I was so grateful for that moment.
Over the next month, we would go through the Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) evaluation process where we would finally begin to get some specific context to our situation. The assessment covers Milestone Assessment, Barriers Assessment, Transition Assessment, and Task Analysis & Skills Tracking. No, I had never heard of VB-MAPP before that, and yes, I had to look it up just now to make sure I got it right. Prior to that, I had pieced together therapies as we had encountered new challenges – speech therapy and occupational therapy – because we just could not get in to see anyone fast enough. I had gone with the piecemeal approach out of necessity and the need for quicker action because at the very young ages, a few months can be critical. This was the first time that we would have a holistic approach to the challenges Jim was facing utilizing the principles of Applied Behavior Analysis (ABA). Separately, we would finally have an official diagnosis from a child psychologist.
We ended up securing a spot to start in the Angel Program the following January. I’ll be honest and say that we were scared for our son; we were still so new to this world and felt ill-equipped to help him. There’s a lot to work through and consider when you are living life on the spectrum, especially when you are blending into the ‘typical’ world around you. I’ve learned a lot over the last several years, and I’ve got more to learn. This post is a reminder for all of us that when you get down in the trenches of it – and life in general – it can be hard to remember that God’s there with you. We can get distracted along the way, and we can forget through all the structured days, therapy plans, and analysis that at the end of the day we are ultimately not in control of where this journey goes. God’s got it well in hand as He always has. You can rest easy in that. So hand over the keys…
I'm Not Driving 