Thursday, April 29, 2010

The view from my window

My Aunt Yetta was the matriarch of my mother's family.  Technically she was my grandmother's aunt.  She was a feisty little thing, bustling with love, up until age 100.  If she were admiring the view from her window, and someone would point out an unsightly construction site or blighted stretch of highway, Yetta would wave away the notion and would say, "I don't look at that part."  She chose to focus on the trees and the birds and the beauty of the world, and refused to weigh herself down with negativity.

Here's one of my favorite Yetta stories: when Yetta was around 80, she fell and broke her arm shortly before she had planned to take a road trip with her girlfriends to Las Vegas.  She said, "I can be miserable at home, or I can be miserable in Vegas!"  So she went, broken arm and all.  Her girlfriend hit the jackpot on a slot machine, and they spent the weekend being driven around in a limo, having a fabulous time.  Had she chosen to focus on the broken arm and stay home, she would have missed all the fun.
-----

Last month I brought Ryan to the Board of Ed office for his psychological evaluation.  The psych eval is "part of a comprehensive evaluation process to determine eligibility for services under the Committee on Special Education."  I scheduled the test for immediately after school, so he would be tired and would do poorly, to increase his chances of receiving the services he will need in (gulp) kindergarten.

And boy, did my plan work.

As Stu said, "he totally sandbagged it."  I was not in the room for the evaluation, but according to the report we received yesterday, Ryan wasn't able to follow the verbal directions necessary to engage in the test.  The district psychologist showed him some items and asked him to pick two that went together; he just labeled all the things on the table.  When asked questions, instead of responding, he would drift into scripts.

Because of this, the psychologist decided to scrap that test and rely on my responses to a long survey to make her evaluation.  The report is full of scores and percentiles and age equivalents for various "sub domains."  Scores ranged from "adequate" to "moderately low" levels of adaptive functioning, whatever that means.  All very difficult to see in print.

I could admit that his composite score puts him in the 12th percentile for similarly aged individuals in the norm sample.  I could dwell on the fact that he scored an age equivalent of  1 1/2 years for the Play and Leisure Time sub domain and that his Personal skills represent a weakness.

But I don't look at that part.

Instead, I will boast that Ryan is on the level of a 5 1/2 year old for the Domestic sub domain (whatever that means), and that his Coping and Writing skills are considered strengths.  I will focus on the fact that my son will now almost certainly qualify for the CSE services he needs.  I will marvel at the joy my son takes in rollerskating and drawing and writing his name. 

Don't bother me.  I am enjoying the view.

Wednesday, April 28, 2010

Intensity

Ryan's latest favorite occupation is drawing on his easel with dry erase markers.  It's the first thing he does when he's allowed out of his room in the morning, it's the first thing he does when he comes home from school.  Sometimes he will scribble for a full hour at a time, with an intensity that disturbs me a little.

Every so often I wander over and ask him to tell me about his picture.  "What are you drawing?" I ask.

He points to the easel and says, "This."  Then he goes back to work.

Sometimes I prompt him to draw something recognizable - a person, a monkey, a rainbow, his name - and he puts in some effort to go along with the exercise.  Then he returns to a pattern of long line, circle, scribble, line, circle, scribble.  He fills in the entire surface of the easel, then searches for his eraser so he can start again.

And of course, this activity is often accompanied by the recitation of the text of Chicka Chicka Boom Boom.  Over. And over. And over.  Sometimes, he'll even draw the coconut tree.

Monday, April 26, 2010

Delayed reaction

I'm getting old.

A few months shy of my 35th birthday, I'm suddenly wearing glasses for the first time.  And not just glasses: progressive lenses.  Glorified freaking bifocals.

This is a (naturally) big adjustment for me, and I assumed it would be a big change for Ryan, too.  Ryan, like most 4-year-olds, isn't so good with change.  I feared he would rip them off my face the moment I put them on.

But things didn't go exactly as I had feared.

Saturday afternoon, Stu tried to prep Ryan, telling him that Mommy will be wearing glasses a lot now.  Ryan came with us to pick up the new glasses Saturday evening.  He saw me put them on.  But he didn't seem to notice anything was different.

Sunday afternoon, he looked at me and smiled. "Mommy, you wearing glasses!" he observed.  Then he went back to looking out the train window.

Sunday night, a full 24 hours after I first put on the new glasses, Ryan stared at me with a look of sheer horror.  He screeched, "Take off the glasses!  Take off the glasses!"  He trembled.  Out of nowhere he was truly terrified.  I took off my glasses and showed him I was still Mommy underneath.  I put them back on, and he shrieked for me to take them off.  I told him no, sorry.

And he seemed ok with that.

We went through the bedtime routine without incident, and this morning he has not yet reacted to the glasses at all.

The optometrist told me it will take me 2-3 weeks to adjust to the progressive lenses.  I wonder how long it will take Ryan.

Monday, April 19, 2010

Rates of Incidence of Various Conditions in the United States

The other day in the car, Stu started pondering aloud about the public attention that various worthy causes get, and whether autism gets its proportionate due.  This led me to spend way too many hours researching the prevalence of several conditions in the United States, and the amount of public funding that goes toward research on these subjects (as filtered through the NIH in 2009).  I got most of my figures from the NIH website, and from wrongdiagnosis.com, as well as other sources.  My calculations here are totally non-scientific, but interesting nonetheless.

Reports of the prevalence of autism in the US vary wildly, but I've frequently seen the figure 1 in 91.  To put this in perspective, here's the rate of incidence of a random sampling of some other well-known conditions:
 
ALS (Lou Gehrig's Disease) - 1 in 250,000 (0.0004%)
Epilepsy - 1 in 118 (0.85%)
Herpes - 1 in 4 (25%) - EWWW!
Homelessness - 0.6% to 15% of population (reporting varies widely)
Hunger - 1 in 6 kids at risk of hunger (16.7%); 3.8% of US households have an adult go hungry at least one day during the year
Lung Cancer - 1 in 1,605 (0.06%)
Lyme Disease - 1 in 2,719 (0.04%)
Meningitis, Bacterial - 3 in 100,000 (0.003%)
Meningitis, Viral - 10 in 100,000 (0.01%)
Multiple Sclerosis - 1 in 700 (0.14%)
Muscular Dystrophy - 1 in 651,450 (0.00015%)
Narcolepsy - 1 in 1,359 (0.07%)
Parkinson's Disease - 1 in 272 (0.37%)
SIDS - 2 per 1,000 live births (0.2%)
US armed forces - historically less than 1% of population
For my fellow geeks, I present you this chart of 2009 NIH research spending per person affected:





Awareness is nice, but money gets more research done.

Friday, April 16, 2010

The smile of your dreams

Two of my oldest and dearest friends have a beautiful, brilliant, delightful, neurotypical three-year-old son.  And sometimes I get insanely jealous.

You can tell Ben is the child of two writers: he's been dictating stories to go along with his drawings since he was two.  He's very good at verbalizing what goes on in his imagination - even recalling dreams in the morning.  Ben can have real conversations with his parents.  He even reads a little. 

Of course I'm thrilled for my friends that their son is so precocious and clever (and freaking adorable to boot!), but a little part of me aches whenever I hear their updates of Ben's adventures and accomplishments.  I wish I were able to play "guess what I am" with my kid (Ben gave good enough clues that his daddy was able to guess he was "pink bubble wrap").  I wish Ryan and I could just hang out and chat.  I wish he could tell me about his dreams.

I feel like a total jerk admitting my own jealousy, and I don't want to imply that I'm anything but proud of Ryan for being the best kid in the world.  But deep in my fantasy world, when I imagined five years ago what it would be like to have a kid, I imagined a child much more like Ben than like Ryan.

In fact, I never imagined a kid like Ryan.

I don't think anyone who isn't already intimately familiar with someone on the spectrum would ever fantasize about having a child with autism.  One reason I do not plan on having another child is that I don't think I could handle watching a typical child grow up along side Ryan.  And I really wouldn't look forward to raising a child more restricted by autism than Ryan.

Although I beat myself up over my feelings,* I also realize we're only a mile into this marathon, so I'll have lots more time to work through them.  We're only a year and a half post-diagnosis.  The longest year and a half of my life.  In that time Ryan has taught me more about patience, acceptance, and unconditional love than I had learned in the previous 33 years.  He's highlighted all my flaws and forced me to deal with them.

I'm not proud of all of what Ryan has showed me.  Apparently I'm judgmental, I can hold a grudge for years, I can't remember anything unless it's written down, and I have a nasty jealous streak.

But he has also helped me see the depths of my own patience and empathy, and my innate desire to learn and to share what I have learned.

Most importantly, Ryan has taught me to see myself as a work in progress, which is what allows me to acknowledge these  feelings of jealousy.

And to let them go.


I feel I must mention at this point that Stu keeps wandering in to check on me while I'm writing this.  I showed him what I was working on, and now he's afraid I'm going to start perseverating on this topic too much and dissolve into a deep depression over this.  I can't say his fears are without merit.

Thursday, April 8, 2010

Fill in the blanks

I've talked about scripting here before - echolalia is the more technical term.  It's easier for Ryan to pull a rote phrase from his quote machine to get his point across than to generate a brand new sentence.  Sometimes the quote machine runs amok and weird phrases start flying at me and I can't figure out where they came from.  But Ryan's short-list of the quotes he has selected as most important and meaningful have become pretty predictable.

Situation: I'm putting on Ryan's roller skates and knee pads.
What Ryan says: "This friend is trying to kill me!" (giggle giggle)
Source: Frog and Toad All Year.  Frog is stuffing Toad into winter clothes so they can go sledding.
Implication: "You're putting a lot of equipment on me!"



Situation: Ryan is peeling a banana.
What Ryan says: "Now let me see: a line going this way - uh uh - and a line going this way - uh uh - and another line going straight across."
Source: Sesame Street - "A's Anatomy" - Grover, the Alphabet Specialist, demonstrates for his lowly medical students how to reassemble a letter A that has been in an A...A...Accident.
Implication: The peel comes off in three pieces; the process takes a little concentration.  Appropriately, Ryan will also use this script when writing the letter A.



Situation: Any moment of frustration.
What Ryan says: "We'll catch that Letter C tomorrow." (very disappointed tone of voice)
Source: Word World - Pig and Ant wanted to make cookies, but their Letter Cs all rolled away. After much effort, they are giving up the search.
Implication: "I'm frustrated."


Situation: I give Ryan a glass of milk.
What Ryan says: "Mommy, look at all those bubbles!  Your milk is beautiful! Your cup is beautiful! Your straw is beautiful!"
Source: Unknown - possibly the episode of Sesame Street in which Mary Mary Quite Contrary is planting flowers next to Oscar's trash can.  People tell Oscar, "Your garden is beautiful!"
Implication: Um... pass.


Situation: We're playing hide and seek.
What Ryan says: "Big Buddy? Where aaaaaare you? I heeeeeeeeear you, but I can't seeeeeeeee you!"
Source: Word World - Pig is looking for Ant in a game of Hide and Seek.
Implication: Self-explanatory - this is how Hide & Seek is played.
Related: Sometimes he calls me Big Buddy in other contexts.  I think this is awesome.

Tuesday, April 6, 2010

Another day, another person to educate (aka the Smockity fracas)

The autism blogosphere has been abuzz for weeks about Smockity's recent post, in which she and her regular readers make fun of an obviously-autistic four-year-old and her grandmother.  Smockity tells what she thinks is a humorous anecdote about a trip to the library with five of her seven children and how proud of herself she was that she had showed such great self-restraint in not scolding the grandmother for not controlling the hand-flapping, toe-walking, strangely-talking little girl:
After 15-20 minutes of browsing and some reading aloud, a couple of my little girls wandered over to the only two available computers and started working on some letter recognition and counting games. They hadn’t been on for more than a couple of minutes when a little girl, about 4 years old, bounded into the library with her grandmother. She never stopped to look at any books, but headed straight for the occupied computers.

She bounced on her tippy toes and flapped her hands up and down and said breathlessly, “It will be my turn next!  I’m waiting patiently, Grandma!”
At this point, it's obvious to an informed reader (like you or me) that this child has autism.  The flapping, the toe-walking, the single-mindedness - it's textbook.  Our writer, Smockity, has not read the textbook.


Grandma replied, “Yes, Sugarplum Sweetiepie, It will be your turn in just a minute.” ...

The girl never left her position at the computers and continued bouncing, flapping, and proclaiming, “I’m waiting patiently! It’s almost my turn! I’m being patient, Grandma!” to which Grandma would reply, “That’s right, Preciousdarling Angelface, You are being very patient. Just one more minute.”
This was repeated… repeatedly.
The informed reader sees here that the child has been working on "patience" in therapy, and that she is taking some pride in her level of mastery of this emerging skill.  The grandmother is reinforcing the goals of therapy by praising her for not having a meltdown, for using her words, for not shoving the other girls away from the computers.  Smockity, the uninformed writer, sees none of this.  She does not see the hours of training that have gone into this awkward semblance of patience - she just sees a loud little girl exhibiting weird behavior.
I continued to turn the pages in my Bible and pretend I had no idea of all the “patience” being practiced just a few feet from me.
I'm going to try to ignore the holier-than-thou use of the Bible reference in this story.  I've found that the more people talk about the Bible, the less they seem to behave as if they had read it and absorbed its lessons. But I'm trying really really hard not to judge here.


“I’m waiting patiently! (more flapping) I’m being patient, Grandma!” “You sure are, Babydoll Sugarcookie! I am proud of how patient you are!”

I silently wondered what impatient would look like to Grandma and turned another page. “Not my child, not my business.”

About this time I saw the girl tap one of my girls on the shoulder and say, “It’s my turn! It’s my turn!”
As the mother of a kid with autism, I'm very proud of this little girl.  Even though it wasn't actually her turn, she chose to use a socially-appropriate means of interacting with the girls at the computer to try to get what she wanted.  Smockity does not see things as I do.  She continues:

My girl gave me a puzzled look, since she was still in the middle of her first game. I pretended not to notice, looking down at my Bible, and waited to see what would transpire.

My girl simply said, “I’m not finished,” and turned back to her unfinished game.

The flapping intensified until I thought we all might witness the first recorded occurence of self propelled human flight. There was much more loud talk of “patience” and at this point I seriously considered jabbing a ball point pen into my eyeball to distract me from the temptation to address the situation in a less than patient manner....
This is the silent intolerance that all spectrum parents fear exists.  When Ryan stims in public, I always fear the others moms around are judging us - my son, my parenting abilities.  Before reading Smockity's post, I tried to convince myself that I was just letting my famous paranoia get the better of me; now, I'm not so confident about that. 

Anyway, on to the most disgusting part of our tale:
If I hadn’t been taught not to sass my elders, I very well might have said, “Ma’am, your little Kissylips Fairyface is actually not being the least little bit patient. In fact, if you had a big mixing bowl and added 1 cup of overindulged, 1 cup of coddled, 1 cup of impatient, and a handful of annoying, stirred it up, rolled it out, and put it in a pan, your little Honeybun Adora-belle would be the tasty nugget that popped right out of the pan, and you are doing her a huge disservice in teaching her that what is not at all patient is what you call “patience”....

Thus concludes the story of “What Happens When Coddled Little Girls Are Over Praised For False Virtues”.

The reader comments that follow the story continue the merciless teasing and judging of the girl and grandmother - until various autism bloggers step in to point out that this is not a typical child, and that perhaps a bit of sensitivity is in order.  Smockity first responded defensively, then offered a genuine apology (though she was mostly apologizing for bringing dishonor to the name of Christ.)

There are many take-aways from this tale:

1) It's not paranoia when they're actually out to get you.  There are lots of ignorant adults out there, raising ignorant children to silently judge kids like mine.  One of the goals of this blog is to help chip away at this pervasive ignorance about autism and individuals on the spectrum.  I'm glad you're reading this!  If you learn something here, please share it with your friends.

2) Talking back to ignorance can make a difference, one person at a time.  If the autism community had not jumped on Smockity's comment page and taught her and her regular readers some Diversity 101, they would have all gone on thinking that their self-righteous judgment was acceptable.  The dialogue that was born of this hateful blog post may have helped change the way some adults think of others.  It may even prompt some individuals to consider the invisible back story to the dramas they see playing out in public, rather than assuming they already know what they are looking at.

3) There's a lot more work to be done.  With the number of autism diagnoses on the rise, every child today will eventually have some sort of interaction with a peer on the spectrum, whether he knows it's happening at the time or not.  It is therefore the job of all parents to talk to their children about disabilities, about tolerance, about inclusion, and about the hair dryer-brains in our toaster-brained world.

Sunday, April 4, 2010

Seeking your advice

On Wednesday I have my first-ever speaking engagement lined up.  It's an informal gathering of disability-awareness educators.  I think I have an entire freaking hour.  What should I talk about?  What would be useful for that audience?

Friday, April 2, 2010

World Autism Awareness Day

Today is World Autism Awareness Day, and April is Autism Awareness Month. What should we be making the public aware of?

I want people to be aware that people with autism are people, deserving of respect and tolerance. That many of them are very smart. That just because a person may not speak does not mean he does not hear, and feel, and understand. That autism is not the same as retardation.

I want people to be aware that autism is as much a part of who a person is as his ethnicity or skin color or sexuality. And like all of those attributes, autism is a difference, but not better or worse than any other way of being.

I want people to be aware of the sensory integration problems that often plague individuals on the spectrum. I want them to imagine how they would react if every sound were amplified ten times, or if they could not sense where their own body was in space, or if even their softest clothes constantly grated on their skin.

I want people to be aware of the digestive problems often experienced by individuals with autism. That chronic constipation, the inability to digest wheat or dairy proteins, and frequent abdominal pain can be par for the course.

I want people to be aware that their snap judgments of what they perceive as a mother's poor parenting skills may not accurately reflect the situation they are observing. I want people to understand that when a child with autism has a meltdown in public, it's not because she's a spoiled brat, but because her brain is not wired to handle life in a neurotypical world.

I want people to respect that children with autism may be developmentally delayed by a couple of years in some ways but operate at an age-appropriate - or advanced - level in other ways. That in spite of whatever limitations they have, many individuals with autism are quite gifted in other areas.

I want people to be aware that the autism spectrum is a diverse and confusing range of symptoms, behaviors, challenges, and strengths. Some individuals may flap their hands, or pass objects in front of their eyes, or stare at ceiling fans; and some may not do any of these things. Others may have trouble making eye contact or understanding social cues; and some may look you straight in the eye and say hello. Some may look perfectly "normal" in public; others may remind you of caged animals.

I want people to be aware that individuals on the spectrum are loved by their families and are capable of loving others and of living lives that are meaningful and satisfying. That life with autism can be as much a cause for celebration as any other life.