Nearly two years have passed since I last published online.
I bit my nails as comments and messages piled up. Facebook reproached my torpor with endless shame-inducing notifications. Tweets and tumbles ceased. Everything online gathered digital dust, save for Netflix and Hulu.
The world forged on as I streamed another episode of Midsomer Murders and fiddled with Pinterest projects.
Why such apathy from someone who cares so much?
I ran out of spoons. My parent’s health and son’s education required my full and immediate attention.
I am resuming my blog because I enjoy documenting my life.
Putting it out there refreshes me, like opening a window in a stuffy home.
No manifestos here, just finding my footing, and returning to my original journal format—family stories and personal observations.
Join me while I play catch up and share posts long-queued to publish.
Be gentle with yourselves when crochet, crosswords and time wasters are the only palatable way to spend the last minutes of your day.
Most of all, do not be afraid to reconnect. Awesome people await you!
Liev and I journey to beaches with trimestrial regularity. We breathe in crisp Atlantic breezes while connecting to exotic Wi-Fi servers with passcodes like “relax” and “eenjoy.” Years of beach vacations have blessed us with a comfortable travel groove.
We respect each other’s duties, preferences, and energy levels. I drive and tell convoluted special-interest stories. Liev types, prints and recites our schedules. Most recently, he lettered a giant “Excuse me, I have Tourette’s!” sign for the window behind him since some folks with Tourette’s flip people off as well as curse. A dozen members of the Blue Knights Law Enforcement Motorcycle Club will attest to this.
We startle fellow travelers at rest stop vending machines with scheduled disagreements:
“Mama! Give me the quarters! I have to buy us Aquafina!”
“Liev, I want Smart Water instead!”
“NOOOO! Smart Water is a marketing gimmick! Don’t be a fool! You’re wasting our money! We have to buy Aquafina!”
“How about we get Dasani?”
“Oh, okay. Dasani is cool. Can I have starburst, too?
“NOOOOO! Starbursts are too sugary, and you will get diabetes!”
Our groove means planning. Smallish totes of noodly soups, cracker assortments, and diverse dry goods nest in a basement corner. Next to them, sit boxes crammed with household tools, electrical components, and trip-only books and fidgets. Not only can Liev and I vanish on a whim, but we are prepared for any apocalypse lasting less than a week.
I sometimes worry my preparedness is excessive. Yet, as we move into our latest efficiency, I spot a desiccated pink dish sponge. It languishes beside an ancient bottle of lemon Ajax dish soap. Hah! I whip out my new Scotch Brite sponge and green Palmolive in a Purell pump. I am so self-satisfied I whoop, startling a child sneaking behind our cottage.
The giant fan we brought not only drowns out our neighbor’s drinking party but also my son’s expletive-laden reaction to the case of Smart Water I packed. As I replace the cucumber-overload bar soap with a bottle of Method unscented, I sing a happy song. I will not spend my vacation semi-distracted by artificial melon residue!
All the toys and books, every sock and extension cord has a special place. Liev sorts food into the refrigerator and fills ice cube trays as I plop electronics into the top leftmost drawer in our room. We go outside for fresh air and a tension release. Our beer-loving neighbors turn down their music to listen to our three-syllable debate. Liev wants to alert the front desk to the possibility that their ice machines might harbor pathogens. I want peace and quiet.
“Salmonella! Legionella! E. coli!” Liev laments. “Even Typhoid and Cholera live in ice machines! Mama, we could die! It’s a public health issue!” I know the truth. It’s hot. He’s hungry. Breakfast for dinner will be served and the front desk will receive an adorable, but disturbing note from my nine-year-old. Our neighbors side-eye us but buy their ice from the local grocer.
Fun times and emotional venting go hand in hand because overstimulation does not care. Mind-losing and hysteria are as expected as toilet breaks. So, if you see a mother and child heatedly discussing whether waffles should be eaten like pizza, cast your judgment aside. Cutting food into tiny pieces and forking it into your mouth is hard when you are trying not to shout unforgivable obscenities at nearby giggly teenagers.
Do not think our life hard or sad because we are so different. Most of our moments are double rainbow awesome. Imagine feeling so happy or excited you shout “Holy Cow!” (or a vulgarity of similar import). But instead of it being over the women’s tennis, it’s because waffles are delicious. Imagine never being able to dial that down, even though your brain tells you to chill because everyone is staring. You learn to either hide from waffle-judgers or to say excuse me over and over again.
Well, life is full of excuse-mes anyway. It’s what you say to be polite when you might bother someone. Our bothers are just unexpected, that’s all. And isn’t the unexpected often delightful?
At eight years old, our autistic son is quite a gentleman. But, before he learned to open doors for the elderly and say please and thank you with regularity, he had “unacceptable behavior.” Or rather, he had unexpected behavior for his age and strapping-big size.
Autistic children progress on a unique timeline and thrive on patience and support. Liev and I would like to encourage all caretakers of little autistics to have faith in the potential of their wards.
On Saturday, our respite provider, Miss D, took her daughter and Liev to a trendy indoor playground. Because their slides and climbing are enormous and intricate, the kids love them. One slide fascinates Liev–the Coal Chute. Long, lofty, and pitch black, it was the perfect challenge for an energized eight-year-old. It was his first stop.
A self-appointed guardian laid claim to the slide. She shouted, “No boys allowed!” Sensitive to exclusion, Liev said, “That is sexist. Anyone can go down the slide” (social justice lessons began at birth). Stepping by her, Liev was surprised when she spun and pushed him, hard. Liev retreated and found Miss D.
Miss D praised him for following their bully script: ignore a bully but get an adult if they put their hands on you. She acknowledged the self-control it took for Liev to walk away. Physical confrontations are distressing for any child, and doubly so for an autistic one.
“What should you do next?” Miss D asked him. “I will play in a different place to avoid the bully girl,” Liev replied.
The girl’s mother, overhearing Liev and Miss D, sprung up and collected her daughter. Since the mother took care of the situation, Miss D let it be.
Later, when Miss D, Liev, and Doryn climbed up a bumpy ramp, the same girl sprawled out near the top, not allowing anyone to pass. Liev whispered, “That’s the bully girl.” Miss D nicely asked her to move over so they could go by. The girl stared Miss D straight in the eye and said, “Nope.”
Miss D reminded her that this was a playground for everyone and that she needed to move to share. Miss D added, “Because the girl honked me off, I also told her I knew she pushed Liev, and if she put her hands on him again, I would tell the staff and they would ask her to leave.” The girl told Miss D she did not care.
When the girl’s nearby mother called to her, she demanded the girl come down NOW! Liev and Doryn regarded Miss D with concern. Since the mother was handling the situation, Miss D told the pair not to worry.
After they went down the slide, Liev fumed, “I’ll find that bully girl and tell her she should leave.” By now, Miss D realized the girl had more going on than bad manners.
She offered an observation to Liev: “Look how her mother is talking to her. Maybe she is not a bully. Maybe she is a girl learning how to play.”
Miss D asked Liev if he remembered when he first started coming to this playground. Liev would shout, “GO AWAY” every time another child came near him. He nodded. Miss D asked if he still yelled at others. “No, I learned to tolerate other kids, and if I can’t tolerate them, I know I can come to you and use my iPad.” Miss D reminded him how much time and work it took him to be at playgrounds without defending himself by shouting.
“Perhaps this girl is like you once were. Her mom is explaining which behaviors are okay and which are not. She is asking the girl what she could do instead of telling us to leave. See how she is helping her daughter understand her feelings? Instead of being a bully, the girl is learning how to play. She is learning how to tolerate other people like you once did.”
Liev thought about this. Tension left his body, and his eyes lit with insight. “So she isn’t a bully? She doesn’t know how to play so she’s telling us what to do? Yeah, that makes sense. We should let her stay with her adult so she can keep learning.”
Liev could not only consider another perspective, but he could also identify with the girl. This required self-reflection, self-acceptance, and the ability to put his emotions aside enough to empathize with this girl, when he was upset. Miss D said, “It was a beautiful thing to see.”
We are proud of Liev. He understood this girl needed support instead of blame. One of the greatest lessons I have learned as a parent is “bad” or “unexpected” behavior is a symptom of absent skills. Let this be a life lesson for Liev, as well. Everyone’s future will be better if we villainize less and help more.
One year ago to the day, I put my mother in a nursing home. I feared she would not last the month, let alone recover and look forward to resuming her life at home. Self-care this year has been the key to supporting my parents and adjusting to a new way of life.
Although my blogging subsided, self-nurturance thrived with art journaling. Simple techniques such as rubber stamping and vintage collaging let me put pictures to my feelings, which in turn spurred words and emotion.
Sometimes we cannot do all the things…
Sometimes events are beyond our control…
This year’s Autism Positivity Flashblog has been shifted to May 15 to accommodate the needs of our team. We hope this will suit you as well! The date change is a lovely metaphor that embodies self-care, acceptance, mindfulness and accommodation in all the best ways… for many of us…
The theme for the 2015 flashblog is:
Acceptance, Love and Self-care
Tell us how you celebrate yourself, your Autistic family, friends or loved ones. Tell us how you celebrate the Autistic community. As you share your stories, art work, and poetry tell us how you integrate self-care into your life.
Let’s start a “tsunami” of positivity to honor Autistic pride, acceptance and love!
Join us in celebrating Autism Acceptance and we will once again flood Google with positive messages about Autism.
For the last three years, hundreds of bloggers have come together in a show of support and solidarity in response to negative stigma. The posts that have flooded in from all over the world have been a beautiful example of the power of strength in numbers. With so much negativity still surrounding Autism and the misinformation and misconceptions that continue to abound, we this year again invite you to participate in an intentional celebration of posAutivity and Acceptance within our diverse communities.
We welcome all of you, anyone who is Autistic, anyone who has an Autistic person in their life, and those who blog about autism to create a message of support, wisdom, hope, and pride to this year’s flashblog by posting to: