I “met” Monica Bruno in a blogging group that had nothing to do with autism. Autism only came up because we were talking about shared pinterest boards or something. She said that, like me, she also had a child with autism. It wasn’t a large group. I feel like that keeps happening now – no matter how small the circle or how outside of my usual autism groups, there is someone who is also affected by autism. I am grateful to Monica for agreeing to write a post here and share her story and concerns for her daughter. I feel like our reach regarding autism goes farther than we realize and it is so helpful when we can share and support each other.
I remember the moment, while at a routine doctor’s checkup, the technician told my husband and I we were going to have a boy and a girl.
After trying for more than ten years to get pregnant, I was thrilled we were going to have twins. Now I knew we were going to have a boy and a girl … a girl. Flashes of little dresses, dolls, pigtails, pink and white ruffles filled my head. Then I felt a sudden tinge of apprehension. I thought about my own upbringing and the difficulty I had as a teenager. My parents were divorced when I was twelve and my mother and I were estranged during those turbulent teenage years. It was rough for both of us.
So, when I was pregnant I made a promise to myself … I would do things differently with my daughter. I would be there for her no matter what. I would help her navigate the awkward time when you’re not a little girl anymore, but not quite an adult either. I would be patient with her, support her, help her understand her self-worth and teach her about sex.
That was the plan.
But then something happened. When the twins were about eighteen months old, I began to notice my daughter was changing. My happy, giggly, baby girl, who was beating her brother at all the developmental milestones (first to crawl, first to walk, first to use words), began to slowly check out. She no longer responded when we called her name. She gradually started slipping out of our world and deeper and deeper into her own.
At two and half, she was officially diagnosed with moderate to severe autism.
My world was abruptly turned on its head. All my underlying fears about puberty and the upcoming teenage years were overshadowed by bigger and more pressing issues. Will she ever be able to speak? Comprehend? Will she ever be able to live a productive and independent life?
That was a scary time, filled with so much uncertainty. The doctor told us to give her as much Applied Behavior Analysis (ABA) therapy as we could afford. We immediately looked into schools and which ones had the best programs for children on the spectrum. We left our home and moved across town so she could go to one school, and then a year later we packed up again and moved across town once more, so she could go to another. She has been to several specialists, has been on several supplements, is on a gluten/casein free diet, and has had intensive ABA, speech and occupational therapy.
Now she’s nine years old and, I’m happy to say, she’s come a long way.
She went from being nonverbal, combative and noncompliant, to being able to participate in a regular classroom (with the assistance of an aide). She can now use some words and has better eye contact, but still struggles with comprehension.
She seems happy, although she can’t really tell me what she’s thinking. And she still has her occasional meltdowns when she can’t express her needs. But she is getting better.
Don’t get me wrong, I’m still dreading the preteen and teenage years. And she’ll be in middle school before I know it.
What will it be like? Like most autistic children, she’s socially awkward. She makes strange facial and body gestures. She babbles to herself. I worry people will make fun of her. Kids can be cruel, even to a typical developing child. She can’t read body language, she won’t know if someone is laughing with her or at her. I worry about people taking advantage of her. I wonder how we’re going to handle her period when it comes. I can’t really talk to her about sex the way I planned to.
But then I remember how I felt when she was first diagnosed. When I was drowning in worry. Despite all my fears, things have turned out better than I expected. Now I know that even though she has autism, she’s still a little girl. She likes dresses and dolls. She likes playing dress up and wearing my high heels around the house. She loves swimming and gymnastics. She loves parties, and traveling and being around family. She’s affectionate.
She has changed me and taught me that life may not always go as planned, but it’s still beautiful. Different, but beautiful.
She’s an incredible human being and I’m lucky to have her in my life.
So whatever the future holds, it will likely bring some tears and heartache. Teenage years are hard for everybody, but we’ll get through them. Hard days will come, but good days will come, too. I remind myself to take life one day at a time and to celebrate the little breakthroughs.
My mother and I managed to make it through my teenage years, and I know my daughter and I will get through them, too. Together.
Monica Bruno is an avid runner, dedicated yogi and author of Rachel’s Folly, a suspense novel. She lives in Austin, TX with her family and two dogs. Visit monica-bruno.com for updates, insights, upcoming book signings and more.