I have been sharing personal essays on my journey with autism with my children, on mom life, grief and mental health. Most essays are from life in 2017 and 2018. WARNING: my essays contain cursing.
I hope they make you smile, I hope they make you cry, I hope to spread an understanding of high functioning autism and mostly I hope they allow other moms to not feel alone. Names have been changed for privacy. To read previous essays click on the Essays category tab at the end of the blog post.
I am listening to the waves crash and watching the palm trees sway and soaking it all in. A beach in Mexico is exactly the mind easing brain dead soul fueling I needed. If my kids would happily sit and relax and play on a beach they’d be here too and then it would be a living version on my commercial of happiness, but they are not those type of kids, at least not yet. But for this quick trip it needs to be just me and Michael. I know parents who never take a trip without their children and I try to convince them to do it. Even a long weekend, marriages need it. We get to remember that we enjoy each other’s company and can still have fun together. We can have long conversations without interruptions. We can sleep! When I travel and sit by the ocean I feel as though time slows down. Like it actually slows down, the opposite of time flying while you are having fun. I’m certainly having fun but time is crawling, an hour felt like two. It’s some warped time tube here along the Maya Riviera. I’ll take it.
My girls, on the other hand, are sharing a bedroom at my mom’s house, the three of them together in a small bedroom, and what holy hell did my mom dig herself into? Olive can’t handle the sounds Laurel makes while sleeping and Ruby still can’t breathe in her presence. Olive texted me from the iPad at 10:30 last night. So late! She couldn’t sleep and didn’t know what to do. Everyone else in the house was snoozing and she couldn’t shut off her brain. I didn’t get the message until this morning and what good is that to her now. My mom is stressed about Gram being sick, I guess the flu is going around the nursing home and Gram keeps running a fever and is really sleepy. This, on top of my annoying kids, is leading my mother to certifiable madness. God I pray for Gram’s healing and strength and for my mom and all she is dealing with. This trip wasn’t exactly great timing for her.
Onto the next heart wrenching topic, which I don’t even want to think about as I sip my margarita, Olive’s SAT team meeting at the school right before my trip. It’s overwhelming sitting in a conference room by yourself with a dozen other adults who evaluated your child. I fought the tears a few times and tried to focus on what they were saying. The district team explained why they thought Olive didn’t warrant a place on the autism spectrum, her eye contact was fine and she answered all their questions without a problem. They didn’t witness any repetitive behaviors. Are you fucking kidding me? I asked how long they spent with Olive and they said one hour. ONE HOUR. On one day. I sternly said, “So you got to know my daughter for one hour and and that’s enough to determine whether or not she classifies for autism? Do you really think that is enough time to get to know her and get a big picture of my child?”
They answered no. Silence. I was not going to be the one to break that silence. I sat there looking at the district team sitting across the table from me, my eyes began to tear and I would not let the tears fall, can’t show my weakness. The school team spoke and broke the tension.
The school team, who has gotten to know Olive for the past few months, did think she should be on the autism spectrum and my at-home evaluation had her on it as well. I see the repetitive behaviors, the way she reacts to loud noises and different lights, the obsessive interests and how she has trouble with reciprocal conversations and making friends. I see all of it. I’m disappointed in myself the light bulb didn’t light up for me until she was 11 and starting middle school but now I have to show these people what I see and be Olive’s advocate. The good news is that they are giving her services for everything she needs so the label isn’t important right now. The school psychologist told me she sees it and knows they will put her on the autism spectrum in the future, we can’t see this as a bump in the road. The last five months have been a bump in the road!
Memory reloads keep flooding my brain from when Olive was little. Around one-years-old when we lived in San Diego, a very outdoorsy place, I often had to use a public bathroom because we did so much outside the house. In California most public bathrooms have dryers, no paper towels, and after I’d use the toilet Olive would cry to me to not wash my hands. I always told her we had to wash after using the restroom and I would just pat my hands to dry on my thighs, not use the dryers. I would show her and say, “see, pat pat on my lap.”
She would repeat the word, “pat, pat, pat, pat,” as we walked out. Hello?! Number one, vocal repetitions, number two, sensitivity to loud noises. In my mind at the time I knew it did not stop her from entering the bathroom with me, which is what I knew kids with sensory processing disorder would do, therefore we were just fine being a little sensitive. In her defense those dryers are fucking loud. Hello Dyson, I’m talking to you.
Yeah Sarah, you need to focus on the here and now. I’m looking up at a blue sky, hearing laughter and splashing, music in the distance, there’s a slight breeze, the smell of sunscreen and the ocean. I think I’ll sit here on this beach forever. The waiter is coming to bring me snacks and a drink, Micheal is lounging on the chair next to me and looks at peace. I’m going to burn this moment into my brain for eternity. I’ll take a video so I won’t forget, say a prayer and not think for a few more hours. The darkness will be waiting for me when I get back home, enjoy this right now.
I’m on the plane flying home to my babies who I miss more than I want to. I keep thinking about Olive’s school meeting before my trip and it’s amazing how more and more memories have been flooding in. When Olive started kindergarten she had some adjustment issues, to say the least. At that time Ruby was a loud crying baby at three months old, we lived in an apartment building outside Boston while Michael finished his fellowship training in oncology and I had some health issues that summer after giving birth to Ruby. Our house wasn’t exactly peaceful. Olive would come home from school and have major meltdowns. One day I wouldn’t let her have a cookie right before dinner and she flipped out, she even threatened to jump out the window and kill herself. She was five-years old, just FIVE. I gasped when she said that and was completely shocked. I just re-read my journal from that time, it was bad, I was in a bad place physically and emotionally. We pretty much only watched the Disney Channel and I was dumbfounded Olive could even come up with such a thing to say or know to do. Where did that come from?
I talked to my pediatrician and then talked to a child psychologist. He gave me some parenting tips and told me if Olive wasn’t hurting herself or others then we were all right. He said she was going to be a difficult strong willed child for sure and I had to learn to not let her run the household. He said she was going to be the worst customer in my restaurant every day. We managed and got through. Ruby became a happier baby, I healed, Olive adjusted to kindergarten life and we saw the sun again. That time in our lives passed and what was forgotten should not have been. Quoting Tolkien, such a genius. That just made me laugh and I needed it.
As I was getting ready to board the airplane back to hell my mom called, they were taking Gram to the emergency room. She was having trouble breathing and the nurse heard fluid around her heart. I have a panicky feeling right now, oh my Gram. I have no doubt she can fight this, she’s one tough cookie at 94. God please give her peace and comfort and heal her. I’m not ready for her to leave me in this life, not right now. Michael’s mom was able to get the girls and will stay at our house until we get home, thankful for that. We are flying into the night and there is a bit too much turbulence. Kind of like my life. I’m going to try to take a nap before landing, flying back into the river. The ugly murky river I’m drowning in.