Five years ago around this time of year, Liam was playing with a car and said “vroom.” I texted Jon as soon as he said it, my fingers couldn’t type fast enough. My husband was working and living in New York while we were in the Boston area and I knew it would be several days until he was home to hopefully witness it himself. This was a huge moment for us because at three years old, Liam was barely speaking. He muttered sounds we came to understand but other than calling us by name, there was not much more than a stray word here or there. I remember that day so clearly because he said a word with purpose. At that moment I knew there was hope.
Hope can be difficult to hold onto at times, no matter what your struggle may be. As a mother, watching my child struggle to communicate with me was heartbreaking, especially when his frustration escalated to self harm. It’s common, among those afflicted with autism to self harm. Liam at times would slap himself in the face over and over and cry. Other times he would bang his head against a wall, stove, anything that was nearby. There were long days that seemed to overlap in this cycle. But over time, and with the help of dedicated therapists, the words came. We started using PECS cards (Picture Exchange Communication System) along with charts and his language slowly began developing. The sounds he muttered began to translate into words. Words turned into phrases, and phrases into sentences. His frustration lessened and we began to understand his needs.
There have been times during this autism journey that have shaken me to my core and made me doubt myself, decisions I’ve made, and parenting choices past and present. Times recently, where I haven’t recognized who my son is. The past two years have been challenging in a different way then when he was a little boy. Now that the words are here completely, my husband and I are learning what goes through Liam’s mind, his fears and anxieties, and so many other things we never knew. Most days Liam’s mood changes very quickly. He can be happy and sweet, laughing with his sisters and playing and the next minute screaming and angry telling us he wants to die. Small things that a neurotypical person would brush off are monumental trials for him. Changes in routine, is still his biggest trigger. The way in which you speak to him, the word choices you use with him impact his entire day. I never thought I’d have to hide knives in fear of him hurting himself. Everything we say and do must be planned out. Autism is a mental mind game for family members trying to navigate the paths ahead. What’s he going to be like today? I’m sure being the person going through autism everyday has much greater challenges. We are all trying to figure this out and plan accordingly but that’s the thing, there can’t be too much planning in our world. Some days go by smoothly but most days do not. I can’t plan ahead for the weekend because I just don’t know what emotional state he will be in. He may be great but he may be in a rage that will make it impossible for me to take him anywhere.
There are also days when he acts like a typical eight year old and his autism seems dormant. He has gotten better in many ways, especially with sensory processing and we can now vacation and be in busy places like the Statue of Liberty or Central Park. Unfortunately, his outings will usually end with severe meltdowns at the end of the day. Finding positive coping strategies to deal with sensory overload has been a real struggle for him.
This too shall pass, I know. It’s been two years of extreme ups and downs. I’m grateful for the ups because it reminds me of how good it can be. For a period of time my family has peace and I wonder if this is what a typical family experiences on a regular basis. And the downs are just a reminder of the reality we are in.
I hope he develops real friendships and is asked on a play date without me initiating it. I hope one day the ups are the new normal and I can remove my armor and breathe. I hope one day my daughters won’t hide from their brother. I hope one day, the loving, real Liam emerges and these hard days are a distant memory because he really is a great kid who just wants to be seen.