Autism. It was a word I had heard many times, but had never truly understood. At least until about five years ago. That was the first time that someone had ever told me that my son might have autism. He was two. I was floored and offended. How could anyone think that my son was less than perfect? He had just finished his speech therapy session and before his therapist left, she casually mentioned something about him having autism. As if it wasn’t the first time anyone had brought up the possibility. He was behind where he should be, sure, but he was born seven weeks early and we knew he might have a learning disability due to that fact. But autism? No one had ever even mentioned it prior to that day. She left pretty abruptly when I broke down in tears and she told my son that she should go because she had upset his mommy enough for the day. I remember going to my mother’s the next day to pick him up and crying to her, thinking it was all my fault.
Shortly after, my son had an appointment scheduled to be screened for autism. I didn’t believe even for a second that he would be diagnosed. I was told that the screening would most likely take hours but it only took about 45 minutes. I assumed that was a good sign. Until they came back in the room. They gave him a diagnosis of moderate to severe autism. I sat shocked and remember nodding my head. And then I started to cry. I was so angry at these strangers for deciding that something was wrong with my child whom they didn’t even know! We went home and I sat on the floor holding my son and I cried. My sister was trying to call and text me but I couldn’t answer. I felt a giant divide between us all of a sudden. My family had just become completely different than hers. She had four healthy, typical (a word I would soon come to despise) children. How could I put into words what I was feeling? My heart had just shattered into billions of pieces and I felt so broken and numb. In the days to come I would start thinking of all of the things I might never experience with my son. Sporting events, his wedding, holding my first grandchild… but that day I was just terrified. I was still learning to be a regular parent and now I had to figure out how to be an autism parent. My sister’s last text was almost desperate; she told me she was worried about me sitting at home alone and she needed to know that I was okay. She didn’t know that my husband had stayed home with me. I called her back and broke the news. I don’t really remember the conversation- everything from that time other than my thoughts and feelings and fear is a blur.
Ever since the screening had been set up I had started reading articles and watching videos about autism. My husband had told me that I should stop because I was just stressing myself out, but I needed to prove to myself that my son’s actions were not those of someone with autism. My hope had started to falter with so many of the things that I had read sounding so familiar, but in my heart I had still believed that there was no way that my beautiful boy, the joy of my life, could be anything but perfect. I didn’t stop crying for weeks. The pain felt almost physical. My heart hurt for my baby that was going to have a harder life than I wanted for him. The diagnosis was just the beginning… he was already in speech therapy but now he was on a waitlist for ABA (Applied Behavior Analysis). So many acronyms are thrown at you once you get the diagnosis. I still have a hard time remembering them all. It’s like a whole new and different world opens up to you when your child is diagnosed with autism. Some sort of secret club (although it’s clear a lot of members would prefer not to be in it). After the shock wore off a little, I decided to seek some support online. I am not on Facebook myself, but I found a Facebook page for autism parents and thought that I’d take a look and maybe even join Facebook to be a part of it. I quickly changed my mind. I didn’t see people supporting others or find a caring community. The comments to each other were downright mean and they were tearing each other down instead of building them up. That was not a community I wanted any part in. That is the main reason that all of these years later I am starting this blog. I want you to know that you aren’t alone. I want you to know that it’s okay to hurt for the things you might have to miss. I want to remind you that brighter days are ahead and to appreciate the beautiful ones with your child. I’m not going to tell you that it gets easier- because every day is still hard for me. I can say, however, that without a doubt my son is the greatest gift I’ve ever been given and I wouldn’t change him for the world. Autism isn’t easy but it’s a big part of who he is and I love him unconditionally for all that he is. And on those rare occasions that he looks me straight in the eye and smiles I know that no light has ever shone brighter and no mother’s love has ever been stronger.