The Facebook Post I Made the Day My Daughter Was Diagnosed With Autism

Below is the letter I wrote two years ago on Facebook to announce our little girl was diagnosed with autism. Now, I often look back at this post (a blessing and a curse of being a writer). My first impression is that this women was fearless. She came home right after her daughter was diagnosed with a lifetime disability and made the news public to all 204 of her family and friends. She was unashamed, blatant, bold and, above all, honest. This was my post…

Almost from the first week we brought Gabby home, I knew something was different with my baby. She would cry for two-four hours straight at night, almost every night. I would nurse, rock, walk and bounce her till she passed out. The doctors had no clue. We did all the tests they could think of, and she was labeled a difficult baby.

By 2, she was hardly talking, but physically she was kicking all our butts. As she grew stronger, it was harder and harder to control her tantrums and fits. We gave up going out to eat, and soon we stayed close to home or parks unless we had two people.

By 3, she was in speech and occupational therapy, and she showed little to no improvements. She grew taller and her weight soared to a whopping 40 pounds. We had more people than I can count tell me I needed to discipline my child or spank her, but I knew that just made the tantrums worse. We had to bear hug her and pat her back till she would calm down, and then it was like nothing happened. For the last two years I’ve been the lady in Wal-Mart holding down my girl while people walk by and see a 3-year-old having a tantrum.

Last week after running a bunch of tests, Gabby was diagnosed with autism. We’re both relieved and devastated with the news. I know God has a plan for our life and Gabby’s as well. So for now we are going to be faithful and trust in him to lead us through the next chapter with our little girl. Prayers are welcome and appreciated.

Then I remembered the feelings that went along with this post: I was scared. Probably the most scared I’ve ever been in my life. As I posted this message to my family and friends, I realize I did it because I was so afraid that if I didn’t say it out loud that day, I might never have the courage. I blurted it out for my family and friends to see because I thought if I didn’t share it, it would be taken as me being ashamed of her or trying to hide it. I came right out with it and took the “loud and proud” approach to sharing the news that my child was diagnosed with autism when in retrospect, I was devastated.

So devastated that I spent the majority of the next two weeks heartbroken and crying. This was mostly because I didn’t understand what this meant for her and how we were going to manage. Not knowing if she would be OK was the most frightening part. Next, I spent a few days being pissed off and stressed and asking God, “Why us?” Finally, I crumbled for a few days and hid in the house. Then, I finally got up. Not because I wanted to get up, but because I had a husband leaving on a trip and a daughter to take care of. Just because I was grieving didn’t mean I didn’t have responsibilities. So I got back on the horse, you could say, and I got on with our life.

I scoured libraries and the Internet trying to find out as much as I could about autism. I would take care of my child all day, and at night I would be obsessed with reading and researching everything I could find out about autism. I made appointments and kept up with her therapies, and life kept going.

Looking back, if I could go back to the day of my daughter’s diagnosis, I would tell myself that it’s OK to grieve privately. It’s OK to not shout out the news that your dreams you had for your child’s life are changing. It’s OK to not have a plan. Your journey is going to be bumpy, and you’re going to run on broken roads at times, but in the end you still have the beautiful, enchanted daughter you started out with. You’re still going to have wonderful moments when she shocks you at her abilities and actions. Yeah, your dreams for her are going to be different, but they will not be less.

Don’t worry so much. It’s all coming; just wait and see how wonderful it all will be.

young girl on a swing

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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