I might struggle with meltdowns, but I certainly know to enjoy the good moments. An hour after the above photo was taken, Liev opened up MS Paint and created the following merged image and caption:
This is Liev’s homage to Mathmagic Land, the 1959 Disney cartoon featuring Donald Duck. He printed out his masterpiece and handed it to me. “This is so you know that Donald Duck and numbers are a good pair.”
Amazing. He used google images to find Donald and the numbers, saved them as jpegs, imported the images into Paint, layered them, merged them and printed them out. And he figured this all out by himself.
I will place Donald prominently to remind myself to have courage during the occasional meltdown.
I would like to share a list of wonderful new things Liev can do. One year ago today, he could not do any of the things on this list.
Now Liev can:
Take walks around the block without running off or melting down when he gets home.
Visit with the neighbors; feed their koi, turtles, and ducks.
Play outside independently for fifteen minutes.
Choose a DVD, load it in the player and select the cartoon he wants to watch.
Get dressed and put on socks, shoes and a jacket unaided.
Find and put on clothes the first time he is asked.
Fix a simple snack.
Follow instructions to help Mama cook.
Answer the telephone.
Wash his hands alone.
100% potty trained—no accidents.
95% potty trained at night.
Play responsibly on the computer by staying on approved sites following rules.
Make his own (strange!) Boardmaker stories.
Converse coherently on the phone with Grandma, including greetings, questions, answers, and farewells.
Take a shower and wash his hair.
Stay in his room when asked, no gate needed.
Identify physical symptoms of not feeling well—sore throat, yucky tummy, headache, etc…
Walks to the bus and chooses a seat quickly.
Sits next to another person on the bus.
I feel very proud of my little guy and grateful to everyone who has worked with us to make all of these new skills a part of our lives. Deepest thanks.
BTW, the odd characters in the above journal page are an alphabet Liev and I created. To entertain him last night, I wrote dozens of “secret messages” in our code. He was taken by the “good boy” stories, so I included them in my entry along with his artwork.
Lorna, the mother of a twin sweet-faced autistic preschoolers, invited Live and me over for a playdate. We stepped into a front room congested with abandoned gym equipment and sagging, scraped furniture. Intersecting metal bars and padded surfaces formed a tight network of tunnels that beckoned my autistic explorer. Liev scrabbled through the jumble to examine the speedometer of a tilted stationary bike. I recovered him wearing a look of wonder on his face, too stunned to protest his removal. He had never seen so many things jumbled together.
We followed Lorna to the play area, a converted garage, half of which was partitioned off by waist-high, slightly sinister metal bars. The room looked as if she had just shoveled an extra-large shipment of shattered and dismembered toys into it. My young son stood in awestruck silence as he beheld the ultimate choking hazard grazing field.
Lorna snapped the gate behind the children and took a series of mundane, chatty phone calls. Distracted by images of imagined basement parkour and Heimlich maneuvers, I did not mind. Before I could vault over the bars and freerun back to the car with Liev, Lorna turned her attention to me.
A discussion of the difficulty of special needs parenting commenced. Parenting autistic twins and the expense of their suspicious treatments topped her topics of conversations. She recounted the milestones they missed breathlessly; with the enthusiasm one expects at a sporting event. Every obstacle electrified her, as if we competed in a strange race, which she was winning.
As she sprinted towards the finish line, she proselytized about the strings of improbable medications and dubious supplements her children took. Her eyes glittered with such fervor; I thought she might hold me down and suck out my vaccinations, vampire style.
As she lectured, I watched the kids crunch over toys in their little autistic zoo. Sadness swept over me. Her children were discarded, broken things, set aside until they were fixed. Perhaps then they would be good enough for their family. This is why autism acceptance is dear to me. Autism is not an illness or epidemic but a different way of being. It is a part of human diversity deserving of dignity, accommodation, and critical thought.
Lorna represents a particular type of autism parent—the Me First Parent. The parent stuck in a selfish circle of their own needs—their need to talk on the phone, their need to out-suffer others, their need to gain attention for themselves. How could Lorna chat so aimlessly on the phone and not make her children’s space healthier?
Life is about growing, not treatment. We bear our son’s needs with patience and good cheer. Our job is to keep him safe and happy. Our job is to teach him skills on his timeline. Most of all, our job is to love and accept him.
Today Papa grabbed the camera to document day two of the Great Short Bus Adventure. Live gave his goofiest grin for posterity and we cheered as he drove off. I worried he would have problems, but he enjoys the ride and comes home calmer than when I drive him. The boat-like swaying of the bus soothes him.
I am happy this is working out, yet I feel guilty because the bulk of his day is at school. That’s eight hours. Eight hours!
When I first realized this, I sunk into a funk. I quit my job to be a mom. I visualized the quality time I would spend with my child and how I would help prepare him for an amazing, balanced life. After brooding for most of the day, I got over it.
Liev cycles through nine teachers and twelve peers each day. He needs playmates, plural, playmates, and structure. I work phenomenally hard to provide structure and routine, but there is no way I can meet his socialization needs. I cannot replace the twelve kids that play by his side. One day, Liev will graduate to public school and the skill and tolerance he has gained here will benefit him.