I am not a doctor. I am not an expert on anything—not even on my own children, although I am frequently told I am. I do have a bachelor’s degree in behavioral science, which is often helpful to me. I am not better than anyone else at anything. I struggle daily. What I am is tenacious, frustrated, angry, joyful, optimistic, thorough, short sighted, grateful, helpful, helpless, exhausted, excited, kind, and often really and truly deeply sad.
I am either very early or late. I am either very organized or everything is chaos. My house looks clean, but it is actually dirty. I don’t own anything “nice,” and I don’t plan to. I wish I could appreciate today without being terrified of tomorrow. Sometimes I look at other children and then at my own son, and I feel sad for myself and terrified for him. I look at children with siblings and feel a deep sadness for my daughter because I didn’t do what I had set out to when we had a sibling for her.
Why am I writing all of this? It’s because when I became a special needs parent, I felt lost. I did not want to be a special needs parent; I fought it, actually. I did not want to be friends with other special needs parents, yet I wanted to understand them. In the process, however, those friendships happened anyway. My friend list changed, and the scales began to tip. People I had known since childhood but only saw through their social media presence were reaching out to me and saying, “I am a special needs parent, too.” They began to share their stories to ease my suffering. Others reached out because they felt a bond through something I said or posted. Even more people reached out because they wanted to be helpful, and for that I am forever grateful.
At the time of my son’s diagnosis, I felt dark. The future seemed hopeless, especially as my son had his first regression at the age of 2. He lost some of the very few skills he possessed. Looking back, I wish I had known how limited the time with those skills would be because I would have made a video of him doing them, even something as “simple” as putting trash in the garbage! It was with that first regression that I realized something … I had known it since becoming a parent, but it was now so much clearer: I have zero control over things; they are out of my hands.
Everyone copes differently with the realization of their situation. This is my story.
Thank you for reading,
Joanna
Please feel free to contact me directly at joanna@ourhiddenstories.com