My daughter was diagnosed with autism spectrum disorder and a speech disorder when she was two and a half. I owe this early diagnosis to a family member who gently pulled me aside after babysitting my daughter and shared with me what she noticed. She was a retired special education teacher, so I took what she said very seriously, and am immensely thankful for her speaking up. I remember the phone call to my husband right after and I recall saying “She doesn’t have autism, you don’t think so, right?”. And there our journey began with fighting insurance companies, fighting for resources, figuring out her needs, and a ton of driving to appointments and different schools.
My daughter is now 9, and looking back, I honestly can compare the diagnosis of my child to the seven stages of grief that is normally associated with a death. To be clear, I didn’t view this as the end of my child’s existence, but did have to grieve for what I had imagined my child’s life to be.
- Shock and Denial - No, not my child. They have to be wrong; she’ll catch up.
- Anger - How is this fair? I found I generally aimed my anger at bureaucratic limitations on insurance, government, any other agency that made it impossible to get the help she needed in her most crucial time. Especially during COVID.
- Bargaining – Was this my fault somehow? Did I do something wrong when I was pregnant, somewhere in my genes? Did I not bring it up soon enough to the doctor? Could anything have prevented this?
- Depression – Going through the motions, doing the best you can. Throwing yourself into work so you have a safe place to focus on something else and not worry 24 hours a day.
- The Upward Turn – Small progress, baby steps. Seeing her move forward offered a glimpse of hope. Finally comfortable to openly talk to those around us about her. Family members, friends, strangers in public. Beginning to appreciate the light she brings to others.
- Reconstruction – Figuring out ways to accommodate what she needs to be successful. Adjusting our lifestyle where we can and help her through things we can. Learning her ins and outs, what she can handle, what she can’t, and how far we can push her.
- Acceptance and Hope - This stage is beautiful. The worry is still there, but not as all-consuming. This stage has me cheerleading her accomplishments, challenging her and seeing her flourish, spreading kindness and awareness, and most importantly, knowing that she is exactly who she is meant to be and I can’t wait to see how she grows and changes.
I can look back at each of these specifically and clearly remember the struggles and the fear of each one. I also can clearly remember when I hit the acceptance stage, feeling empowered, and became a fierce advocate for her needs, a defender of those with special needs, and a gained passion to spread awareness. I also find myself a transformed person. I am exponentially more kind to those around me. I no longer get frustrated at a slow check out person that painstakingly organizes the groceries into bags so they are just right. Or the person that makes awkwardly long conversations with me while I’m ordering food at a restaurant. The world presents itself with ways to give acts of kindness every day if you just make sure to watch for them.
Even though I have reached acceptance, time will pop up and I quickly find myself going through these stages again, but at lightning speed, sometimes in a matter of 15 minutes. The last place this happened to me was at the Taylor Swift concert. As I was waiting in the miles long line for merchandise, I was watching all of the little girls around me there with their sparkling outfits and extreme excitement. My daughter was still into singing nursery rhyme songs, had zero clue who Taylor Swift was, and could care less (not for lack of trying on my part). Right then and there, I had tears rolling down my face, and in the next 15 minutes I was able to come back around and remind myself of something. The one thing that I always use as a home base to focus back on, that has taken years of practice to master.
Be thankful for the things she can do, not the things she can’t. Be thankful for how far she has come, not how far behind she is. You are not alone in this, and she is perfect.