I write about my 16 year old son a lot. Writing is how I reflect and cope with my hardest days of parenting a medically complex child with severe autism.
Last week, for the first time in a while, I had some hard days parenting his sister. She is 13 years old and considered “neurotypical”, if there is even such a thing. She experienced something that many middle school kids will endure. She was the recipient of a mean message from another child. She did not handle it well and neither did I. I turned to my close friends and family who all had similar insight and advice. They said things like “I’m so sorry, kids can be so awful at that age”, “we never know what others are dealing with that makes them put people down”, “build her up and tell her that none of what was said to her is true”, and “be an example to her and help her move on”. All good advice but none of it helped. After a few days I realized that I couldn’t get past it and was proving myself to be a very poor example of how to deal with this situation. Three days later the thought of what was said to her still brought me to tears mixed with intense anger directed at something I couldn’t put my finger on until finally it began to make sense.
My son’s life is hard. He can’t walk, he can’t communicate well, he can’t regulate his senses and emotions, he isn’t toilet trained, he has severe behaviors and lacks the cognitive ability to understand any of it. Parenting him is hard. It’s sprinkled with wonderful moments but it is HARD. His dad’s life is hard. My life is hard.
Then it occurred to me. Guess who else’s life is hard? Guess who I don’t write about? Guess who sits silently in her room and listens to her brother’s terrifying screams and her mother sobbing because she doesn’t know what’s bothering him? Guess who covers her ears and quietly cries as her heart breaks at the sounds of her brother’s fist hitting his head over and over again? Guess who always puts her brother first, sacrificing her french fries, her room, my attention and so much more? Guess who has never once complained about it? Guess who passionately defends him and all people with special needs? Guess who often gets woken up in the middle of the night to the sounds of her brother having yet another meltdown? Guess who doesn’t know life without exhausted parents and a sibling whose behaviors and needs always take precedent to her’s because of their severity? Guess who rarely gets to go on vacations, out to eat or to parties and events with both of her parents because one parent always has to tend to her brother? Guess who comforts me and assures me that she will always make sure her brother is taken care of when she senses me worrying about what will happen to him when her dad and I are no longer around? My daughter, the sibling of a child with special needs. She is a member of this club of kids whose lives are not typical and often much harder than most people realize.
It occurred to me that it was not what happened to my daughter that made me so upset. It was my and her inability to cope with it because we were both depleted from a hard week with my son. It made me realize that at times, like me, she is barely hanging on when things are not going well with her brother. It made me realize that just like me, an unpleasant or hurtful experience that most people deal with at some point in their lives can completely derail her. It made me realize that like me and her dad, she lives in a fragile state of fight or flight, often making her vulnerable and unable to cope with anything outside of the chaos of severe autism.
This is what I am angry and sad about. Her childhood and adolescence will continue to be different and hard. There is nothing I can do to change that. However, I also know that she will take that with her into the world and will always be strong, extremely empathetic and able and willing to help people like her brother who can’t help themselves.
My takeaway is this. When I reflect on our hard days with my son, I will be more mindful of my daughter’s emotions and how they affect what is happening in her life outside of our home. I will acknowledge and nurture the extra large feelings that come with being the sibling of a person with special needs. I will continue to do everything I can to keep a reserve of myself for her as we get through this beautiful, messy, difficult life together. I will take extra consideration for her and other special needs siblings, who through no fault of their own or anyone else’s are sometimes put on the back burner. They deserve the occasional spotlight, acknowledgement, support and a few extra hugs from time to time.