Patterns

One of the hallmarks of autism is rigid thinking - getting into patterns that are very hard to break.  Seemingly anything can become habitual, at any time.  Around here the patterns often stem from pairings - things that Ryan has decided go together that can never be apart or paired with anything else.  Perhaps he has a future as a sommelier.  Other times, the patterns are predetermined reactions - the absolute opposite of spontaneity.  It's like full-body scripting.

Here are some of the newer patterns in this house:

- For maybe the last week, every time Ryan takes his first sip of a cup of milk, he shouts, exactly the same way every time, "It's a milk mustache!  Get me a towel!"  It doesn't matter if you offer him a straw - the first sip always results in this routine.  As a result, he's drinking a lot less milk these days

- Similarly, whenever Ryan eats chocolate, he declares, in exactly the same way every time, "I'm dirty!  Get me a towel!"   Chocolate consumption is not affected.

- Bananas are one of Ryan's top three favorite foods; "nana" was his first word for "food."  Strangely, he still has trouble pronouncing this word - he says "bwana."  Anyway, whenever Ryan notices there's a banana lying around, before asking for it, he will declare, "Maybe bwana will help," as if he'll been mulling some deeply troubling global potassium shortage.

- In the bathtub, Ryan insists on singing "Curve of the World" from "It's a Big Big World."  He has not seen this show in about a year, it has nothing to do with water, and he doesn't sing it in any other context.

- He's started making this weird throaty vocal sound to punctuate... something, perhaps the end of an unspoken thought.  It sounds like "nta."  It's totally annoying to me; Stu says he barely notices it.  Oh, how I wish for his level of man-focus.

- When eating dry Kix, if Ryan drops a piece (a Kick?) he will pick it up, but instead of just eating it, he will place it back in his bowl, then pick up that exact same piece again and eat it.

These habits last a long time, we push back against them and try to mix things up, then suddenly they dissolve and are replaced with new patterns.  Repeat, repeat.

FlashForward

A few weeks ago I wandered into the living room while Stu was watching Flash Forward, and I was compelled to sit down and watch the rest of the episode (and then later search Hulu so I could catch up on the series).  For those who haven't seen this show yet, the premise is that there was a worldwide event in which everyone in the world simultaneously blacked out and saw what they would be doing during a specific 2-minutes-and-17-seconds period six months in the future.  They aren't sure if the future is set in stone..  Individuals who don't have visions during the blackout believe that they have less than 6 months left to live.

Anyway, this particular episode I walked in on, they introduce this autistic boy, maybe 10 years old.  I was stunned by how well the character was portrayed.  The young actor had been directed to be more like Ryan than like Rain Man - echolalia, lack of eye contact, and social awkwardness, but no rocking and flapping kinds of crap.  It was perfectly clear to me that the character was autistic; Stu said he hadn't realized it until the character's father announced it in a previous episode.  I was totally transfixed by the portrayal of this minor character, Dylan.  Dylan is in a hospital following an accident that killed his mother.  His father, Lloyd, has not been in his life much, but is now at his bedside, telling the child that his mother is dead. 

Near the end of the episode, there was a moment that made me cry with joy.  Dylan put his hands on Lloyd's cheeks, looked him directly in the eyes, and said... something, I wish I could remember what, but it doesn't even matter.  Just the eye contact made Stu and me gasp. I was filled with this overwhelming sense of hope for this child, this fictional child I barely knew anything about on a show I had never seen before, because I understood that moment.  I recognized the progress that was represented in that tiny moment, the struggling that could make that beautiful moment possible.

I'm looking forward to seeing where this series goes, and how this character develops.

A Long Rambling on Vaccines and the Quest for Control

There is a very vocal camp of parents who are convinced vaccines caused their children's autism, despite numerous scientific studies that show no connection between vaccines and autism (and NO scientific studies that DO find a connection).  There's a terrific article in the current issue of Wired magazine on this subject in defense of science and reason.  The author notes that the human brain seeks out correlations and tends to confuse correlation with causation, and that the pseudo-science that comprises the vaccines-caused-my-kid's-autism arguments preys on well-meaning parents who are desperate to find a reason for their children's struggles and a manageable way to solve their problems.  (Autistic behavior happens to become evident around the same age as kids get vaccinated, so parents conclude one caused the other.)

So more parents are choosing not to have their children vaccinated, but autism diagnosis rates continue to climb.  And the largest U.S. outbreak of mumps in three years is occurring in New York and New Jersey right now.  Is this because fewer children are receiving the MMR vaccine?  It certainly correlates; I wouldn't be surprised if there were a causal relationship as well.  As the Wired article points out, opting not to vaccinate your child is not removing a risk; it's taking a different risk.  I, for one, am not willing to put my son at risk of contracting polio, diphtheria, rubella etc, or developing meningitis or going blind as a result of such illnesses.  (An aside: I knew a guy who had had meningitis as a kid.  It messed him up.  At age 21 he still had all his baby teeth.)

For a nice roundup of some facts about vaccines, please see the sidebar piece to the Wired article.

As a parent, it's hard to accept that your child will face obstacles that are out of your control.  It would be comforting to believe if you could make all the right choices throughout his childhood, he'd come out with a perfect life.  You can't control genetics, and you can't control how other people will behave toward your child throughout his lifetime.  But you can control what you put into your body, and therein lies the root of the anti-vaccination movement.  And eating disorders.

When I was 17, I started experiencing symptoms of depression.  I felt completely at its mercy, and I didn't know what to do about it, so unconsciously, I started grasping for control of my world, and I guess I felt like the only thing I could control was what I put into my body.  So I stopped eating.  Ironically, this exercise in self-control spun my life totally out of control - all I could think about was not-eating.  My parents forced me into therapy.

When I graduated from high school, I weighed 97 pounds.  My doctor and parents threatened that if I didn't gain some weight soon, I wouldn't be allowed to start college in the fall, and I'd have to go to an in-patient hospital program instead.  So I started a new exercise in control - making the choice to become healthier in time to leave for freshman orientation.  Logical arguments had not convinced me that I had made seriously unhealthy choices, but creating an alternate narrative of self-empowerment and self-control did manage to give me a viable new direction.

Now, almost two decades and 30 pounds later, I feel more in control of my life than I ever have before.  I could not control my son's being born with PDD, but I can control how I deal with it.  I choose not to be swindled by snake oil salesmen.  I choose to reject chelation and hyperbaric chambers and B12 shots in favor of behavior modification and (increasing) personal acceptance of Ryan's neurological differences.  I choose to believe in scientific studies instead of the quackery popularized by a Playboy bunny.  I choose to be an advocate for my child and not make death threats against someone because he invented a vaccine for rotavirus.

Are You Me My Mudder?

When I was little my grandmother kept a couple of kid books and a mermaid doll in her coat closet for me.  The only one of the books I remember specifically was Are You My Mother?  This classic story features a baby bird who hatches while his mother is off finding food for him and goes off in search of her.  He has an innate sense that he has a mother, but doesn't know what she looks like, so he starts asking random creatures - a kitten, a hen, a dog, a cow, and a digger truck - if they are his mother.  The truck returns the bird to his nest moments before the mother bird returns with a worm.  I remember being disturbed by the Snort -  even though it eventually did the baby bird a favor by putting him back in his nest, it looked totally menacing, and I couldn't accept that the bird would ask this scary truck if it was his mother.

Ryan loves this book; it spawned his earliest instance of scripting: "Down, down, down, plop!" was his go-to phrase for "down" from the beginning.  Our copy is a tiny board book, which seems far less menacing than the full-sized worn-out paper edition in Grandma's closet.  To try to ease the anxiety that used to arise whenever I left the room, I always tacked on a final social-story line when I read him this book: "And Mommy always comes back."

Tonight at bedtime, Ryan read Are You My Mother? aloud for us.  It was magical.  It was full of paraphrasing instead of rote recital.  It went something like this:

Are You Me My Mudder?

A mudder bird sat on her egg.  The egg jumped and jumped and jumped until out came a baby bird. 

"Where's my mudder?  I will go and find her."  Down down down down PLOP!

He asked a kitten.  "No, I'm a kitten!"

He asked a chicken.  "No, I'm a chicken!"

Then he got stuck.  The formula here is supposed to be, "'Are you my mother?' the baby bird asked a dog.  'I am not your mother, I am a dog,' said the dog."  I pointed at the dog and prompted, "What did the dog say?" 

"Woof!"  Ryan answered.

Then he saw a big thing.  "You are my mudder!"  The big thing said, "Snort!"  "Oooh, you a scaaaary Snort."  The Snort lifted the bird up up up and in da nest.  The baby bird was home.

Then the mudder bird came back.  "You [are not] a kitten, a chicken, a dog, a cow, a Snort.  You're my mudder.  And Mommy always comes back."

Yes, baby, Mommy always comes back.

Quilting

I feel like things with Ryan are stable at the moment.  Yeah, I'm sure I just jinxed it, but the past week has been notably un-noteworthy.  Sure, there have been tantrums I didn't understand (something about "big potty little potty"), and there have been adorable misuses of the English language (like alerting me to a bath toy jammed on his wrist by saying "Can I have stuck please?"), but overall, I feel reasonably content and in control.

So I've turned my focus to quilting.  I enjoy piecing and playing with fabric.  It both relaxes and challenges me, and occasionally people pay me to do it.  Last year I started a blog to showcase my work, but things got busy, so I hadn't updated it since New Year's Day.  Until today!  Presenting a round-up of some things I've worked on over the last year:  Naptime Memory Quilts.

Shorties: Can I...

Ryan's been getting really good at asking for things.  He understands the formula: Can I have ___ please?  He does not yet understand that not all questions follow this formula.

Yesterday he was crying.  When he was finished, he tried to formulate a sentence to express that he needed me to use a tissue to dry his tears.  The result: "Can I... wipe off the cry, please?"

Later, his thumb was itchy, and he hasn't figured out that he can scratch his own itches.  Again, he made the effort to use words to get what he wanted: "Can... I... itchy the thumb, please?"  I modeled the right words for him: "Scratch my thumb, Mommy!"  So he tried again: "Can I... have... scratch the thumb... please?"

I love this generalization stage.  It's clear that Ryan understands that we expect him to use language, and that stringing words together can get him what he wants, but he hasn't learned the natural patterns of language yet.

Happy Halloween!

Ryan did not express any sort of preference for what sort of costume he wanted to wear for Halloween this year, so I decided to go with the penguin costume he wore last year: black pants, white shirt, hooded towel with a penguin face on the hood.  Cute, easy, useful year-round.

This afternoon, I announced it was time to go to our building's Halloween party.  "Can I watch George?" he asked.  No, it's not tv time, it's time to interact with other kids.  We waddled downstairs.

Ryan colored in a ghost, played with stickers, avoided dancing with the other kids, and ran off to the laundry room.  The party was too loud for him.  I think we stayed all of 10 minutes.

I followed him to the elevator, took him home, gave him dinner, let him watch tv.  Then we announced it was time to go Trick or Treating.  He allowed me to dress him, grabbed his big plastic pumpkin, and dutifully walked out the door.  There may have been a little excitement in there, but mostly it seemed like following directions.

Last year, he hadn't seemed to enjoy trick or treating all that much, but at the end of the night he was thrilled, and the next morning he was asking to go trick or treating again. I prepared myself for a similar outcome.  Plus, I reminded myself, he still has a cold.  I keep my expectations low when he's tired.

We followed the other kids from the building to the next block, where the neighbors take Halloween very seriously.  One family creates a very impressive haunted house in their driveway every year; other folks hang out on their front stoops to greet trick or treaters.

We coached Ryan to say "trick or treat" (and not "Can I have candy please?"), take candy, and say "thank you," in that order.  The first house we went to, he walked right in to the living room.  This prompted us to add the instruction, "Then you turn around and walk down the stairs."

After the fourth house, Ryan announced, "I want to go back home now."  We were thrilled that he had expressed himself so well, but we weren't about to let him quit so soon.  We kept going for another block and a half, which included that fantastic haunted house (Ryan was not scared), tiny people dressed as ladybugs and turtles, two slutty teenage Dorothys, and a man in a toga.  We knocked on a couple of doors within our building, then went home.

We showed Ryan how to dump out his loot on the floor.  While Ryan sang a little song to his Skittles, Stu and I tried to remove all items containing wheat: pretzels, Goldfish, Twix, Twizzlers, Whoppers, Kit Kat.  There were lots of questionable items - candies in wrappers "not labeled for individual sale," without ingredient lists or allergen warnings - that we took away just to be safe.  I think we confiscated half of his haul.

Ryan had me open the Skittles.  He put one in his mouth, bit it, held it in his mouth a few seconds, and spit it out on the floor.  Then he tried another one; same reaction.  And another.  And another.  He spit each of them out.  I think he liked the flavor but not the texture, so he was treating them like sunflower seeds: eat the nut, spit out the shell.  Earlier, he had rejected several other candies: he spit out his first bite of Mr. Goodbar and Snickers, and never looked back at either.

And then he discovered the joy of Reese's peanut butter cups.  Which was shocking, because Ryan refuses to eat peanut butter.  He inhaled that thing like there were thieves after it.

He got really happy and silly for about 30 seconds, but the crash was immediate; Ryan was asleep before 7pm.

Happy Halloween!