At first, I wrote about my pregnancy in a blog because I wanted a journal for my kids that they could access at any time down the road. Then I continued it not for just them but as a life line for myself. As a way to process my turmoil, to feel less alone, with the hope of helping others that could identify with me.
Why was something I struggled to attain and wanted so badly so much more difficult than I ever imagined? As time passes, I look back on being a new mother and realize most of my postpartum struggles were not unlike tripping through a cluttered room searching for the light switch. I knew I needed to find a solution but every attempt was just another stumbling point.
When I shared with friends I received blank stares. Their babies didn’t act like mine. Their husbands didn’t react to the baby crying like mine. Their households celebrated babies sleeping through the night. Then speaking in clear, full sentences. Their kids didn’t run away from others.
What was I missing? What was I doing that was so terribly wrong?
Then my writing became a different life line. It unintentionally became a medical journal of our children’s progress after the birth of Owen. The third day in the hospital, post surgery, I laid in bed crying because he didn’t want to be held.
Diagnosing autism in boys is more acceptable to the medical community. There’s an inherent bias in the tests as they are constructed around the observed symptoms in boys. The underlying cause for the behaviors is the same between the genders but exhibited differently.
No one fought me, not for long, when I pointed out my concerns for him at age two yet still no one would help Leonora over the same concerns.
They fought me for five long years with Leonora. Every school, doctor, and advocacy group I reached out to. We’re just now getting the support and services she needs thanks to perseverance and the Portland Autism Center.
We recently did a presentation together for her Girl Scout Troop about autism. She was great at being in front of the room, helped with the demonstrations, and made sure to mention how “annoying” her brother is to her. I could tell this most the other girls had ever heard her speak. This boisterous crowd was suddenly listening and attentive.
We watched the video Amazing Things Happen together as a group and then answered questions. Most of the girls were waiting for snacks and ready to play. Leonora looked a little withdrawn and I understood she needed a break. She began running in circles to stim.
The other moms finally understood and looked on in stunned silence. The reaction used to anger or embarrass me but, in all honesty, what are we taught to do as children when someone behaves oddly? Laugh? Tease? Ignore?
They turned to me and asked questions. I suddenly felt accepted, for myself and my daughter, and understood that seeking acceptance means being vulnerable and answering the questions that sometimes hurt. It means setting aside what triggers us and being tolerant in the face of open curiosity.
It was a lot for her and once we were done and outside she ran in circles with the other kids in a match of hide-and-seek in the dark. She wound her hand cranked flashlight up and sped through the dark.
My friend Anne commented aside to me, “Look, she’s playing with the other kids.” She gets it, she knows this is a big deal for us both. We watched on in silence and quickly rejoined the conversation with other parents.
On the walk home, Leonora held my hand and said, “Do you think they’ll like me now?”
My throat tightened and I kissed her hand, “I think you need to give them a chance to know you and then they’ll like you. Today you opened up to them and you were very brave. Now they’ve heard the word “autism” and what it means. Maybe they’ll begin to understand you a little better.”
She nodded, “Autism is amazing. I just wish people liked me more…People like me more than our President though. Maybe I’ll be the President someday.”
“First, he’s the President of the United States, not our President. Second, he’s a troubled man that makes fun of people with disabilities and doesn’t believe you deserve equal rights.”
“Because I’m autistic?”
“No, because you’re a girl.”
She thought about that for a few seconds, “That’s stupid, I make better choices than Owen and he’s a boy.”
“Well, Owen is younger and unpredictable.”
I laughed, “He’s spirited, that’s for sure. Do you think you would make better choices as a President?”
“Yeah, I would give people help and tell girls they were amazing and talk to people to make them happy…I still want to be a singer though.”
A couple days later we watched the Temple Grandin TED talk together after reading her children’s book, “The Girl Who Thought In Pictures”. We discussed autism and why people think differently than her but I could tell she was still not quite convinced. She seemed uneasy with any of the explanations and kept asking about why she’s different.
Then it occurred to me, I kept focusing on explaining her differences to her yet what she really needed to hear was positive images of people that were similar to her. She wanted the reassurance of belonging. Then I came upon a video of Kaylee Rogers performing on Little Big Shots.
She was in shock, “She’s like me?…There’s other girls like me?…I’m really not the only one like this?”
It hit me suddenly. Something that might seem obvious to others. Acceptance is only reached with awareness and neither are achieved without the courage to speak out. To keep the topic relevant so that others don’t fear a diagnosis, so families don’t feel ostracized, and so that kids like mine don’t feel alone.
Amazing Things Happen: http://amazingthingshappen.tv/?projects=amazing-things-happen
Temple Grandin, TED Talk: https://www.ted.com/speakers/temple_grandin
The Girl Who Thought in Pictures, : https://m.barnesandnoble.com/w/the-girl-who-thought-in-pictures-julia-finley-mosca/
Little Big Shots: March 25, 2018; http://www.dailyedge.ie/kaylee-rogers-viral-little-big-shots-3937027-Apr2018/