Friday, February 25, 2011

The Book - a Fabulous Preview

I feel like my children's book has been gestating about as long as a fetal elephant. I banged out the story in January 2010, secured a publisher late that summer, and now the illustration process is wrapping up.

Wanna see some pictures?

Yeah, I thought you did.

The artist is my friend Rebecca Rivard, a fabulously creative lady (she has developed arts education programs for schools, children’s museums, and after-school programs in Boston and Chicago) who is somehow fitting in illustrating my book while raising three kids under age 6; I think she was painting while in labor. This will be her first book.

I am five years old. I have autism. I am awesome.

I like to play hide and seek.

I can make an elephant sound.

Sometimes things get too loud.
 Seriously, how awesome is Rebecca? I am thrilled to see this book coming together. I hope it will be a useful tool to help families begin the lifelong conversation about autism with their ASD children, and to help kids on the spectrum frame their self-identities in terms of their strengths and special abilities, not just their challenges.

Stay tuned for updates...

Wednesday, February 16, 2011

In which my imagination gets the best of me.

Ryan usually bounces happily off the school bus; today he walked slowly, sleepily.

"He cried on the bus this morning," the driver informed me. "He didn't want to get off the bus."

I asked if this was a new thing.

"This was the second time. Happened yesterday, too."

This is the part where the mother of a typical kid would ask her child "What's wrong? Is something bad   going on at school?" And the kid would either answer the question or give some sort of ballpark indication of where the problem lay.

But, you know, Ryan can't answer questions like that.

As I ushered Ryan inside and tried to convince him to take a nap, my mind reeled with possible scenarios that would cause my baby to suddenly start resisting getting off the bus and going to school. Yesterday he had some tummy troubles, so maybe he was crying because he felt sick? Does he hate the structure of school? Is a bully - or a teacher - abusing him? Does the screaming stress him out?

If I could pull an answer directly from my (essentially) non-verbal child's head, I would in a second. Because not knowing is driving me crazy, and it's not helping Ryan, either.

Tuesday, February 15, 2011

Why does it have to be so damn hard?

I put my kid on the short bus every day.

I know he has challenges that require extra attention in school; I worked with our school district to make sure those supports were put in place for him. I've met his teachers and therapists and read their progress reports. I know there are enough kids with similar challenges that there's a class just for them - and not just one class, but several classes in every school district in the country, manned by teachers and aides and therapists who have dedicated their careers to helping them catch up with their typically-developing peers.

I know all that - my kid is in special ed.

But knowing isn't the same as seeing.

Progress reports and IEPs don't tell you about the screaming. The constant, high-pitched shrieking of a non-verbal six-year-old in diapers as she objects to the demands placed on her in the only way she knows how.

Progress reports don't describe how the other children in the class keep working on their writing and math exercises, diligently ignoring the screaming.

Progress reports don't do justice to how hard my baby works all day to master things that come so easily to typical kids.

Sitting in on a morning's activities - circle time, writing time, gym class, math time, speech therapy - I was in awe of how much energy my kid expends to stay on task. And that he does it. The teachers sometimes have to use their hands as blinders or put Ryan in a weighted vest or prompt him seven times to make it happen, but Ryan can write the sentences he's supposed to write, figure out what number is missing from the pattern, identify the picture of a bar of soap and its purpose and place it in the appropriate room in the picture of a house. But because of his communication and social deficits, it is perfectly appropriate for him to be in the same tiny class as the shrieking child and a loving, sweet five-year-old who only recently learned to utter one-word sentences, like "Eat."

I kissed Ryan goodbye in the lunchroom and went off to cry in my car. Why does it have to be so damn hard for him? For all these kids? Why is he still struggling to answer yes/no questions properly after over a year of attention to this in speech therapy? How long will it take before he consistently calls his kindergarten teacher by her name and not by the name of his last preschool teacher?

And does he know he's in special ed? Does he know the kids at the other tables in the lunchroom are having spontaneous conversations with each other, and that it comes perfectly naturally to them? Does he know how hard he's working, and that despite his amazing successes he's still miles behind the typical kindergarteners?

Does he know how proud I am of him?

Monday, February 7, 2011


My apartment has been staged. This means two realtors and a professional stager came in and instructed me how to make my house look less like my home and more like the Houlihan Lawrence catalog. This involved not just rearranging the furniture and hiding the usual clutter, but removing four of our seven bookcases and their contents, relegating all Ryan's toys to his room, and displaying just-so decorations that make me itch. Seriously, white-on-white curtains and decorative pillows fill me with violent rage.

Among the crap laid out for our professional photo shoot was a bowl of fake fruit. I have no intrinsic hatred for this; it's a glass bowl with some fake pears and apples and a pomegranate. And my real tomatoes. And an empty bag of coffee. And a can of honey from New Zealand. It would not look out of place in Pottery Barn.

Except for the Cookie Monster doll.

The picture of the cat, however, I hate in a profound, visceral way.
Do you see it? At the bottom of the bowl of fruit in my official real estate listing photo, there's a little Cookie Monster? I was not home when these pictures were taken, so I was quite shocked when the proofs came in.

"Why the hell is Cookie Monster in the fruit bowl?" I asked the selling agent as diplomatically as I could.

"Oh, tee hee! I love teal," she explained. "Let's see if anyone notices."

For one, Ryan noticed. And he has appropriated Cookie for his own. I have not stopped him from playing with it, because I feel that a plush doll is more appropriate in his hands than in a decorative fruit bowl.

I must add, this is not just an ordinary Cookie Monster doll. This Cookie Monster has yellow butterfly wings, and green strings that were probably designed to tie him to some sort of mobile, but now look like strangely floppy antennae.

 Ryan has named this item Cookie Monster Wings Butterfly Toy.*

As you might expect, Cookie Monster Wings Butterfly Toy flies around the house eating things. Last night, Cookie Monster Wings Butterfly Toy ate Ryan's dinner, a houseplant, my new kneepads, and my face. When Cookie Monster Wings Butterfly Toy ate the picture Ryan had drawn on his easel in blue dry-erase marker, I was at first smugly satisfied that the doll was no longer teal, but then Ryan cried, "Oh no! Cookie Monster Wings Butterfly Toy is a MESS!!!" He then, uncharacteristically, took the matter into his own hands by drowning Cookie Monster Wings Butterfly Toy in the kitchen sink and then carefully drying Cookie Monster Wings Butterfly Toy with the dish towel.

And this is why we can't have nice things.

* Ed note: It has come to my attention that this is actually supposed to be a Twiddlebug. Specifically, it was a give-away in boxes of Kellogg's cereal in 1994. But it doesn't look like any Twiddlebug I've ever seen, so I support Ryan's analysis. Thanks to The Deviant Unicorn for the correction.

Sunday, February 6, 2011

They don't grow up so fast

The other day Ryan and I took a walk around the neighborhood, inventing new ways to play with the month's bounty of snow. Armed with my long-handled ice scraper, Ryan busied himself with breaking through the thick layer of ice on top of the snow. He was clearly the happiest child in town. A grandmotherly lady passing us smiled at Ryan, and sighed, "They grow up way too fast."

Maybe typical kids grow up too fast, but autism has allowed me to watch my baby grow up in slow motion. Each developmental stage seems to stretch for weeks or months longer than expected, letting Ryan's childhood linger.

In moments of frustration, I often wish the process would hurry itself up. How many more years will I have to remind Ryan to pull up his underwear first and then his pants? How much longer will he insist on spitting his food on the floor? Will he ever learn to answer yes/no questions, or to ask why? When will he make an effort to assert his independence so he can feel like a big kid? Will he ever make friends or ask for playdates?

On better days, I am grateful for the slo-mo childhood. I'm totally fine with the fact that Ryan doesn't know about talking back. I'm glad he's not yet like that four-year-old we saw today who insisted she was old enough to walk through a busy parking lot without holding hands or having her mother hold on to her jacket sleeve. I have no problem knowing Ryan has never wasted a gallon of milk in an attempt to make himself a snack. He has never tattled on another kid, requested some impossible-to-find gift, or told someone that he hated them.

Watching this slow growth makes me appreciate each tiny step as it comes. I notice the subtle changes in Ryan's artwork. Just before we had Ryan evaluated and diagnosed, his typical preschool classmates (age 2 1/2) could all draw faces with the features in the right places, while Ryan had no idea where to put the mouth. By age 4, he could position all the face elements perfectly, and even draw a reasonably-recognizable person. And now at 5, he can do some representational drawing (if pressed to do so):

Here we see a tree growing in the grass. In the tree there is a yellow bird and a nest with three blue eggs.

Even though Ryan's development has been relatively glacial, on good days I'd still say he's still growing up way too fast.