April 27th, 2021
The image of this day will forever be burned into my brain. I walked into my daughter’s preschool office prepared for what I thought would be a typical parent-teacher meeting. My daughter had been in preschool for only a few months. What could they really discuss with you when they are two and a half? I went into the preschool office and was met by 4 other women. The two heads of the school, her teacher, and the teaching assistant. They sat me down and engaged in the usual small talk. After a brief lull in the conversation, they came out and said, “we think something is wrong with your daughter”. Honestly, the rest is hard to remember as I think my mind shut down. Something is “wrong” with my daughter? What in the world are they talking about! She is perfect. She has passed every doctor’s appointment and tests with flying colors. What do you mean something is wrong with her?
They mentioned she was not speaking as many words as she should, did not respond to her name, had a hard time sitting for circle time, would throw tantrums, was still in diapers. Just to name a few. I thought these were normal issues. I mean who hasn’t heard of the terrible 2’s? But they felt it was more. I remember leaving that room feeling devastated. I was so angry with them that they would say something was “wrong” with my perfect little girl. Maybe something was wrong with them that they expected her to fit in their perfect little box. However, as mad, and as hurt, as I was at that moment I am grateful for it. Because that moment put me on the path to finding the right support for my daughter. And subsequently my other daughter and stepson.
I am sure not all autism journeys start out like mine. Some may start in the doctor’s office, discussions with other moms, or even your partner. Wherever they start, it is a conversation you should not be afraid to have. The autism spectrum is broad, and no two kids on it look the same. For my girls, the most noticeable issue was the delayed communication. My oldest could say words but not use them in conversation. My younger daughter is 3 and does not speak at all. For my teenage stepson he is very rigid and lacks appropriate social skills. But they all fall on the spectrum.
I spoke with an ER nurse the other day. I had brought my daughter in after an accident in our home. I was scared and scattered and went into my normal ritual of telling them my child was on the spectrum. A disclaimer most parents feel obligated to share when their autistic child is in a new situation. The nurse replied that her son was as well. She knew exactly how to interact with my daughter. The oxygen sensor was a cool “magic Band-aid”, the blood pressure cuff was giving her arm a “big hug”. Looking into her mouth even became exciting. She talked to my daughter as I would, and she responded positively. We talked a bit about our journeys with the spectrum and the one thing we both agreed on was how important it is to be your child’s advocate. While getting them in for an assessment can be a challenge I was lucky that my kids were diagnosed right away. Her child presented atypically on the spectrum, but she knew something was wrong. She had to push for 3 assessments before they got his diagnosis correct. But she trusted her gut and kept at it till she got the diagnosis and help that he needed. In the end, we both agreed that getting our kids the right support was like turning on a lightbulb in our children. Finding the right therapy and the right therapist had been the assistance that our tiny humans needed.
I left that conversation and reflected. A couple things stood out in my mind. First, I want to give my personal thank you to all the amazing therapists out there who make it their mission to help someone else through their struggles, whatever those struggles are. You help people navigate dark, scary roads and become their guide lighting the path along the way. You are sounding boards, teachers, cheerleaders, friends… SUPPORT all rolled into one. We all owe you a big thank you!
Secondly, to any moms out there starting your autism journey, remember an autism diagnosis does not change who your child is. It just gives a name to struggles you likely already knew existed. At first I think I was terrified of my child being anything but “perfect”. But what is perfect? Truth be told we all have our struggles. Whether they have an official name or not. My daughter is still the same outgoing, goofy, fun, quirky, sweet, wild child she was before her diagnosis… perfectly imperfect, but perfect to me.
At the end of the day, aren’t we all perfectly imperfect anyway?