Monday, November 30, 2009

Future Shock

I tend to avoid thinking about the future.  Even the fairly-near future is a little too much for me sometimes.  It's not just that I'm living in the moment - I think I'm too scared to imagine Ryan's life more than like six months from now.

Recently, someone asked me if we would be enrolling Ryan at the local kindergarten for next fall.  "The deadline is coming up," she warned.  This sent me spinning.  This coming Labor Day, Ryan will still be four, and with his delays maybe he'll be up to the level of a three-year-old, so no, we will wait another year before sending him to kindergarten, and hopefully by the time kindergarten time comes around we will have moved; so then I start thinking about where we might move, how long our apartment has been on the market, how much longer it could remain on the market, whether  Stu will slip into another depressive funk about how long the apartment has been on the market...

Yesterday Ryan and I went to the nature center.  We walked on the trails, visited the chickens, prairie dogs, and turkeys; Ryan was disappointed that there were no lions.  We made our way to the indoor exhibit, where there are tanks filled with turtles and frogs and lizards and the occasional furry critter.  Some teenage volunteers were sitting around, blocking the view of several tanks; one of them was holding a large snake.

I asked Ryan, "Do you want to pet the snake?"

"Snake," he echoed, but when he says it, it sounds more like "Sny-yick."  One of the teenagers muttered under her breath, "sny-yick," clearly more in a mocking way than an oh-that-little-kid-said-something-cute way.

I chose not to respond to her, but in my mind, I flashed to my baby as a fifteen-year-old, still several years delayed, getting teased by his neurotypical peers in high school.  Then I flashed back to being 15 and being teased for my untrendy clothes, my attempts at an authentic accent in Spanish class, my unusual personality.  I remembered sitting in the hall before school and asking a passing teacher, "Do you have the time?" and her curt reply: "Yes, but probably not for you."  I remembered recess in elementary school, standing against a wall as kids threw their backpacks near me and said, "Watch my stuff while I go play," and believing I was actually obligated to do so.  I remembered the boy who called me from a sleepover party to pretend to ask me out, his friends laughing in the background.

Nothing good comes of my thinking too far ahead.  The little I'm sure of about the future frightens and upsets me.  Ryan WILL be different from the other kids.  He WILL be delayed.  He WILL be at a social disadvantage.  He WILL get teased and bullied.  And he WILL have to figure out how to make it through each school day on his own.  It WON'T be easy.

Now, when kids tease Ryan, I can step in, or remove him from the situation, or teach him what he's expected to say or do.  But he won't be four forever, and the world's expectations of him are going to change soon, and I'm afraid for him.

Friday, November 27, 2009

Medical Marijuana and Autism

I've been reading a lot of testimonials from autistic adults and parents of autistic kids who swear that medicinal use of marijuana has reduced their gut pain and constant anxiety, reduced the occurrence of aggressive/violent episodes, reduced hypersensitivity, increased focus, and improved sociability.  The down side: marijuana increases perseverative behavior, tics, and some other non-violent symptoms of autism. 

Proponents of treating symptoms of autism with weed (as a medicine of last resort) note that marijuana is relatively safe, while commonly-used psychotrophic pharmaceuticals like Risperdal have a wide range of highly-toxic side effects.  There is also a manufactured drug called Marinol which contains synthetic THC - one of the 60 naturally-occurring cannabinoids found in marijuana.

For obvious reasons there are few good scientific studies on this subject, but I'm fascinated by the anecdotal evidence.  It makes sense to me that a brain that is wired differently than a neurotypical brain would also process drugs in a different way.  And it makes sense that if an autistic person is more relaxed he will be more receptive to communication and learning and all those things we expect people to do in society.  I have no doubt that these tales are true - the most striking of which involved a 9-year-old boy who used to go into violent rages, had chronic pain due to spinal tumors, and suffered from pica (he would eat his own clothing and bedding - he would consume a shirt a day).  Almost immediately after starting the cannabis, the pica stopped, the child started doing better in school, and he went from having over 300 violent episodes per day to going days at a time without a single aggressive incident.

And yet.

We're talking about giving a 9-year-old child marijuana.  It's been drummed into our heads since elementary school that using marijuana while your brain is still developing will mess you up - decreased short-term memory, gateway to all the evils of the world, dependency, aggression, depression...  I don't know if there's a minimum age for a child to receive a medical marijuana prescription, but I'm disturbed by the image of my preschooler listening to Bob Marley and staring at van Gogh paintings in Amsterdam.

But the more I read, the more I am convinced that for kids who require medication, marijuana might be one of the safer options out there.  Yeah, there's the whole legality issue, but I think marijuana has been excessively demonized, and if it can ease chronic pain, it shouldn't be kept from ill people who could reap its benefits.  I am thankful that my son is benefiting from non-chemical interventions and does not require drugs, but I'm glad to know there's something out there that's helping families cope with behaviors that can not be changed in similar ways.

(Read some of those links up there - good stories abound.)

Thursday, November 26, 2009

The Comfort Pile

Most kids form an attachment to a comfort object - a favorite blanket, teddy bear, other plush friend - and drag it around throughout early childhood.  Ryan has a variety of lovies, each of which is important in its own special way.  All of them must be present at bedtime.  They are: Bear, White Bear, Brown Bear, Orange Bear, Blue Blanket, and White Blanket.

(This picture is from March 2007)

The main fabric friend is Bear - also known as Blue Bear and Two Bears (because it has a picture of a bear embroidered on it), Bear is a teddy bear head and arms attached to a little blue blankie.  Bear is Ryan's trusty companion when we're out in the world, even if he is spending more and more time tucked away in my bag.

White Bear wears a hat; that seems to be the extend of what makes him special.  He doesn't get played with much, and never gets hugged in bed, but he must be present at bedtime.

Orange Bear (which is really tan) is occasionally fun to play with and to hug while sleeping.

Brown Bear used to be Stu's childhood bear; Ryan doesn't treat him any differently than Orange Bear, but we know he's extra special.

Blue Blanket is a large fleece blanket I made out of a remnant.  It's big enough that he uses it as his sleeping-under-it blanket, but not long enough that it makes it to the end of his bed.  Blue Blanket makes for a fine tent, and we can all hide under it together when the world gets a little overwhelming.

And then there's White Blanket.  White Blanket is small - the size you would expect a child's favorite blanket to be - velvety on one side and satiny on the other.   Ryan has assigned White Blanket magical healing powers.  Whenever he is hurt - physically, and sometimes emotionally - he will request White Blanket, and will rub the satin side of the blanket on whatever part of him he perceives has been injured.  White Blanket has been following Ryan around the house lately, Linus-style.  It also makes a nice, if slippery, superhero cape.

Monday, November 23, 2009

A weekend of meltdowns

We've had a very meltdown-prone couple of days, probably due to a stomach bug.  Whatever the organic cause, the tantrums are fascinating, infuriating, and confusing.

The most common example of a tantrum from this weekend was the "Can I pee in the potty?" freakout.  It goes like this: I ask Ryan if he has to go to the bathroom; he does not know how to properly answer a yes/no question, so even though the answer should be no, he runs crying to the bathroom; then he refuses to leave the bathroom until he has peed, even though he didn't have to go in the first place.  I think what's going on here is that when I ask "Do you have to?" he hears "You have to."  Then he has a fit because I'm making him do something he doesn't want to do.  And then he's frustrated because he's unable to do the thing he thinks I've ordered him to do. The obvious solution would be to stop asking him if he has to pee, but he rarely thinks to communicate his own needs, and I like to err on the side of keeping the floor dry.

We're working on yes/no questions at the same time we're working on either/or.  If I ask Ryan "What do you want to eat?" he might respond with an item on his short list of favorites: fruit bar, cheese, banana.  If I want to encourage him to pick something else, I might ask, "Do you want Kix?"  He will always respond "Want Kix."  But that doesn't necessarily mean he wants Kix; I have to wait a few seconds to see if he starts whimpering to know if he actually means he does NOT want Kix.  I might say, "Do you want Kix or animal cookies?"  He will inevitable respond, "Want Kix AND animal cookies!"  But again, this doesn't mean he actually wants both, or either, of these snacks.  If I approach this visually, say by holding up a box of Kix and a box of animal cookies and asking which he wants, he will usually still demand both, or will point at one and then ask for the other.  And then he'll still request a fruit bar.

Another common trigger for tantrums the last few days has been changes in routine.  On Saturday, Stu's parents came over to visit, but they were coming from different places and therefore arrived at different times.  When Grandma walked in the door, Ryan asked, "Where's Grandpa?"  We explained that he was on his way.  Ryan was ok with this at first, but when 5 or 10 minutes passed and Grandpa still wasn't there, he realized that the order of the universe had been upset - Grandma and Grandpa must be in the same place at the same time - and he launched into a meltdown.  There was a brief respite when Grandpa arrived, but the world had already been shattered, and Ryan wasn't about to let us forget that.  After 4 hours, he mellowed out enough to play with his grandparents for a few minutes before they had to drive home.

On Sunday we celebrated Thanksgiving at my parents' house (holidays tend to be somewhat arbitrary in my family).  Things were going pretty smoothly (aside from bathroom tantrums) until guests started arriving for dinner.  The break in routine was jarring, and spun Ryan into another meltdown - this time he initiated our exile to the bathroom.  We left early.

Then when we got home, he started throwing up.  So I guess much of the tantruming was a result of his not knowing how to tell us that his stomach hurt, which is odd, because he certainly knows how to tell us when he hurts his leg or his head.  The closest he came to expressing his discomfort was saying, "Can I have squeeze it please?"  Somehow  I figured out that this meant "Rub my tummy."

One of these days, he's going to be able to let me know what he needs without having to cry.  Soon, please.

Friday, November 20, 2009

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

- In the bathtub, he 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 he 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.  Rinse, repeat.

Wednesday, November 18, 2009

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.

Saturday, November 14, 2009

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 my son'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.

Thursday, November 12, 2009

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!"  he 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.

Tuesday, November 10, 2009

Quilting

I feel like things with The Captain 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.

Monday, November 2, 2009

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 he 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.