"Mom, we just heard back from the doctor."
"What did she say?"
"Well...she had the results of the ADOS test and she said it did confirm a diagnosis of autism."
"Okay. You know, I think this is really a good thing. You finally have the answers."
"Yeah. Me too. I mean, we knew this was what was probably going to be the diagnosis, and I'm sort of glad, because it means that we'll be able to access a lot of resources, but...[INSERT CRYING. SO MUCH CRYING. Then intersperse with laughter because every time I try to start talking again, I start off with normal sentences in a calm voice and then it just dissolves into more tears and back again. My mom is listening to the soundtrack of an emotional rollercoaster.]
[A LONG TIME PASSES]
*sniffles* "Well, I guess I better go now, Mom."
"Okay. This is good. This is going to be okay."
"I know." [More tears]. "Bye."
This was the end of the beginning of our autism journey. It was June, in the week leading up to my birthday, and I had received my special birthday wish of getting the diagnosis at least a few days in advance of my birthday so I could calm down by then.
It's two years later now, and I'm still waiting to calm down. As we were waiting to be diagnosed, I reached out to a friend who has two autistic children. I tried to be coherent in describing the concerns that had been raised about my daughter's behavior and development. Her response was, "I hear you. You need a night out. When are you free to come to dinner?"
I didn't want to go. I was trapped in the horrible limbo before diagnosis and I didn't know if I was freaking out over nothing to a woman who was living my worst fear. I didn't want to burden her when she had so much else going on. I didn't want to have to talk about this. I wanted to go in my bed and stay there while life went on around me. I agreed to dinner because some glimmer of me could appreciate how much I needed this lifeline I was being offered, but when the day came, I balked.
I said I wasn't going to go. My husband offered to go in my place, and I felt weird about doing some sort of catfishing thing to my friend and so I agreed to go, but not gladly.
The conversation with my friend that night changed my life forever. I don't remember the specific things we said, but I do remember the way she validated my feelings, even when the way I felt seemed so ugly. I did not want to be a special needs mom. I did not feel capable of taking on the challenges of a special needs child. I did not want an autistic child because I was so afraid, so very very afraid of autism.
My wonderful friend took all this in and calmly explained the things I should do as we looked into this. She recommended we take our daughter in for genetic testing to see if there was an underlying association between her genetic makeup and autism. She told me we should establish care with a neurologist for a baseline EEG because children with autism are more likely to have seizures. I came home with a list of homework (the first time that's ever happened at a dinner with a friend), many tears shed, and an overwhelming sense that I was not alone in this.
My life has changed in myriad ways since the diagnosis. Autism is no longer something I fear. Having the answers was so much more empowering than I could have imagined. I know about my daughter's genetic makeup and have found a support group for her specific micro-duplication. My daughter has access to many resources through the community and health providers.
Mainly, I have changed, and I am changing. I have read the accounts of autistic people about what living with autism is like. I have interacted with other children with autism. I have helped my daughter learn, and grow and try new things.
The work of autistic parents is often challenging, heart-breaking, scary and awful, but it's also funny, joyful, and rewarding.
I'm writing this blog to provide a window into the life of our family and the ways that I cope and don't cope with autism and the ways that my gift of a daughter copes and doesn't cope with me as her well-meaning but often wildly off-base mother.
Buckle up. It's an emotional rollercoaster.
