Friday, July 30, 2010

Memories

I am always amazed by Ryan's memory. Not only does he memorize every word of every tv show he watches and every book we read, but he can recall these things, in perfect detail, long after he has seen/heard them.

The other night he became very insistent that he needed "yellow star." After much thought and investigation, we realized he was talking about the second hand on the clock in his bedroom (which had a tiny banana on it, but hey, close enough), which he broke off maybe 9 months ago (while reenacting the Curious George episode in which George keeps changing the time on his clock so he won't have to go to bed).

This morning he asked if he could watch It's A Big Big World on PBS Kids. He hasn't seen that show in over a year; it's not even on the air anymore.

Later in the day, he referenced his favorite Sesame Street episode - "Texas Telly and the Golden Triangle of Destiny" - from last season.

One characteristic of hyperlexia is "strong auditory memory" coupled with weak auditory processing and expressive language.  The more I read about hyperlexia, the more the diagnosis seems to fit.  Ryan's speech therapist gave us a hyperlexia symptom check-list; we checked off 10 of 11 items.

I was thinking about making an appointment with a developmental pediatrician to get a formal diagnosis, but there is a potential pitfall: a diagnosis of hyperlexia instead of PDD-NOS might limit Ryan's service options within the CSE system.  I don't know if the school district classifies hyperlexia as a spectrum disorder - some say it is an ASD, others do not.  If they do not, and if a doctor changed Ryan's official diagnosis (rather than saying he has PDD and hyperlexia) Ryan might not be eligible to attend the special kindergarten program he's slated to enter, even though he would obviously be lost without benefit from its services.

Since slapping this label on Ryan wouldn't benefit him or change his course of treatment in any way, it's probably not worth while to have some doctor write new jargon all over his chart.  But I think I know the answer.

Another

Wednesday night, a Bronx woman buckled under the pressure of taking care of her autistic son, and shot her son and herself to death.

Earlier this week, a Dallas woman killed both her young children because they were autistic and she wanted "normal kids."

There's something broken in our support system.

All parents, whether their children are typical or atypical, need help.  Parents without partners need even more support.  I am fortunate: my husband is present and involved, my parents live nearby and love to spend time with their grandson, I only have one child to care for, and we are not struggling to figure out how to afford food or rent.  I am educated enough to know we are more fortunate than many in this country, and I still feel overwhelmed sometimes by the demands of raising my son.

What could have helped these moms and saved their lives and the lives of their children?  Therapy for themselves?  Access to parent training services?  A network of friends who understand the unique pressures of raising a child with an ASD?  I certainly don't know their individual situations, but I think it's safe to say there were some big holes in their safety nets.

Let's all look out for each other.  Listen to your friends.  Let them vent their frustrations without judging them.  Tell your mommy-friend she's doing a good job.  If you know a single parent, ask if you can watch her kids for an hour or two so she can recharge and take care of herself.  If you have a friend who is raising a child with special needs, do a little research on the child's condition so you can deepen your empathy. 

Ask your friend what she needs.

Be open to actually providing what she needs.

Thursday, July 29, 2010

A Tea Party

"Mommy, would you like some?"

Captain Awesome* has jumped into my downstairs neighbor's kiddie pool.  Uninvited.  While she wasn't home.  With all his clothes on.  The neighbor is a good sport about such things, so I decide that as long as I'm supervising, all will be forgiven.

In the kiddie pool, the Captain is playing with a tiny watering can.  He holds it up for me to see and offers me pretend tea or something.

"Oh, thank you, Baby!  Yes, I would love some!"

I make a cup with my hand, and he pours the entire contents of the watering can into it.  I play the gracious guest.

"Mommy, would you like some?"

"More?  Oh, yes please."

I marvel that he has developed the ability to engage in the most rudimentary form of pretend play.  He pours more water on my hand.

"Mommy, would you like some?"

"No, thank you.  I'm full."

Big blue eyes blink at me.

"Mommy, would you like some?"

"Um, yes.  Thank you."

This game goes on for another dozen or so exchanges, each phrased exactly the same way.  He has learned the formula for initiating a pretend tea party; he has not yet learned to riff on this theme or proceed to Step 2.  With a little modeling, I bet he'll soon be offering me cake to go with my tea.


* As kindergarten approaches, I think the time has come for a little more anonymity.  I'm trying this out first to see how I like it before going back and changing every reference to the kid's name.

Wednesday, July 28, 2010

Hyperlexia

This week I learned of a condition called Hyperlexia.  It's the opposite of Dyslexia: a person can easily read words, but can not comprehend what he has read.  According to Hyperlexia.net, children with this syndrome have a precocious ability to read words, or an intense fascination with letters or number, but difficulty in understanding verbal language or socializing with other people.  Like PDD, hyperlexia may be characterized by echolalia; difficulty with conversations, abstract concepts, or WH questions; sensory issues; awkward social skills; and a need to stick to strict routines.

This sounds very familiar.  Ryan's been reciting the entire alphabet since before he was two, can count to 100, and is fascinated by all things letter-related.  I wouldn't say he can exactly read yet, but he has a lot of sight-words and a basic understanding of phonics.  But the echolalia, the difficulty with conversations, the sensory stuff, and the difficulty with answering questions - yeah, we got that.

We have no diagnosis on this, and I don't know that it would matter if we did - according to a couple of friends of mine who are speech therapists, adding this label probably wouldn't redirect Ryan's course of therapy.  But how fascinating that there are enough brains out there that process language in this way that there's a fancy name for them. 

Thursday, July 22, 2010

The Killer Within

DALLAS – A suburban Dallas woman accused of killing her two young children told a 911 operator that she first tried to poison them because they were autistic and she wanted "normal kids," then choked them with a wire until they stopped moving, according to the recorded call.

...When the operator asked the woman why she attacked her children, she said, "They're both not normal, not normal. They're autistic. Both are autistic." Pressed further, she said, "I don't want my children to be like that. ... I want normal kids."
Later, the dispatcher asked the woman what she was feeling. "Nothing," she responded.

Let me first get the obvious disclaimer out of the way: it is never ok to kill your children.  I can think of few instances in which it is acceptable to kill another person, family or otherwise.  Such behavior should be condemned and punished.

But.

Reading this horrific story, my heart broke for the murderer.

I can totally imagine the thought process that led this woman to strangle her own babies.  I picture her slogging through years of evaluations, treatments, meltdowns, quack cures.  I see her handling daily life with a child with autism as best she could, managing her son's needs by day and crying from the stress every night, praying for a "normal" one, then enduring the heartbreak of realizing her second child was also atypical.  She fears for her children's uncertain future.  She struggles with her children's competing needs.  Her marriage feels the strain.  She feels overwhelmed.  She feels alone.  She feels responsible.  She mourns the life she thinks she should have had - the typical life with typical kids and typical expectations.


Some behavior or meltdown or quirk sets her off.

She snaps.

The future is unfathomable.  She considers suicide, but knows there would be no one left to care for her babies.

So she kills the kids.


The difference between mental illness and mental health is not the presence or absence of dangerous urges: it's what you do with those destructive impulses.  No sane person would murder her children, but I think it would be insane not to feel impulses like that sometimes.

Wednesday, July 14, 2010

I Knew It!

Everyone knows yawning is contagious. Just thinking about yawning is making you yawn right now, right?

Just typing the word "yawn" over and over is making me yawn.

But I've noticed my yawning has zero effect on Ryan.

With the most minimal research, I learned about some scientific studies* which have demonstrated that children with autism spectrum disorders are largely immune to the phenomenon of contagious yawning.  The studies support the hypothesis that contagious yawning is a result of social empathy, and therefore individuals who lack social empathy do not pick up on the cues that make the rest of us yawn in response to seeing or hearing others yawning.

Could this knowledge lead to an easy diagnostic test for ASD?



* Some studies:

Absence of contagious yawning in children with autism spectrum disorder 
Contagious and spontaneous yawning in autistic and typically developing children

Monday, July 12, 2010

My Other Half

My husband and I have almost nothing in common.  I'm Ernie, he's Bert.  I'm arty, he's analytical.  I'm a vegetarian, he loves nothing more than a good burger.  I like adventure vacations, he prefers lying on the beach. I find religion fascinating, he thinks it's all bullshit.  We disagree on ice cream flavors, room temperatures, bed sheet materials, laundry detergents.

We've been married for nine years.  And it's taken me nearly that long to truly appreciate how helpful it can be to live with someone with a completely different take on... everything.

This is especially true of our approaches to parenting.  As the full-time caregiver I tend to get into routines with Ryan, and when a behavioral challenge arises I'm slow to figure out how to change it.  That's when Stu steps in.  He analyzes the situation in a more detailed way than I would, scientifically tests possible fixes, and (often) formulates a solution we can both implement.

For example, after careful study, Stu has figured out a simple way to stop a freak-out from devolving into a full-on tantrum: he makes Ryan stand up.  When the freak-out starts, Stu will get on his knees and tell Ryan to stand up, and he'll hug him and talk to him but won't let him sit on the floor.  The act of staying upright, Stu has determined, takes just enough effort that it distracts Ryan a little and therefore keeps him from totally melting down.  So simple.  And I never would have thought of it.

This is the beauty of neurodiversity: our minds work differently, and sometimes in ways that are complementary.

Thursday, July 8, 2010

It's Official

I tend to dread meetings at the Board of Ed, not because I've had bad experiences in previous meetings but because I know I'm supposed to be fearful.  Maybe my school district has a more responsive CPSE Chair than others, but all of our meetings over the last year and a half have been positive, and I've gotten almost everything I've wanted for Ryan.  But I still walk into that room a little anxious, fearing this will be the meeting that echoes all the horror stories I've heard from other special ed parents.

My fears have once again been laid to rest: Ryan will attend kindergarten in a small class (8 children) just for kids on the spectrum.  He will get speech therapy and OT on the same floor as his classroom.  The teachers will seek opportunities for him to interact with typical kids when appropriate.  An aide will accompany him and his classmates to the lunch room.

He will not be thrown to the wolves.

I am relieved.

And a little stunned: my baby is really going to kindergarten this fall.  When did he get so big?

Wednesday, July 7, 2010

Oh, This Modern Age

There is now a DVR for real life.
Introducing Behavior Imaging® - a revolutionary way of capturing and storing behavior information on video. Describing a behavioral episode can be difficult - B.I. Capture® allows you to easily capture and document relevant events before, during, and after the behavior.
It's basically a webcam that's constantly buffering images, but only saves video clips if you push a button.  So if a kid has a tantrum, you push a button, and after you deal with the tantrum you can check the replay to see what triggered the episode.

The company says it's great for functional behavior assessment and makes it easier for parents to communicate a child's challenges with caregivers, because you can upload the videos to a secure server so the teachers and therapists can see the problematic behavior for themselves.

This sounds like an amazing use of technology, but it sounds a little creepy; maybe I'm just a Luddite.  And while I imagine it would be a revelatory tool if you hadn't noticed that Jimmy had stolen Johnny's toy immediately before Johnny's meltdown, I know that plenty of times I've been looking at my kid before a tantrum and saw no indications it was imminent.  But maybe that's the point: even though I've been watching, maybe I've been focused on the wrong place in the picture, and perhaps reviewing the scene on video would make everything clear.

Friday, July 2, 2010

The Graduate

Ryan graduated from preschool.  (I will ignore for now that the very next week he returns to the same class, with the same teachers and most of the same kids, for extended school year.)

The class spent an entire month preparing for the graduation ceremony.  Knowing that these kids need lots of time and repetition to learn, Miss Jillian drilled them daily on their songs and movements.  They practiced in front of an audience made of teachers and school office staff.  They made little construction paper mortar boards with yarn tassels on top.


The kids marched into the classroom and sat in tiny plastic chairs in front of the adoring audience.  Now, not that I'm biased or anything, but it was clear to me (and Stu, and my parents) that Ryan was by far the highest functioning kid in the class; he's also one of the oldest.  He was the only one who did all the hand movements to Wheels on the Bus, and he sang most of it.

Then Miss Jillian read Eric Carle's The Very Hungry Caterpillar, and the kids took turns velcroing laminated representations of the illustrations to a board at the appropriate points in the story.  Ryan went first, and was the only child who did not need adult intervention to put his pieces on the board.  He even recited some of the text along with the teacher.

Finally, when his name was called, Ryan jumped right up and got his "diploma" (Miss Jillian handed each boy a rolled-up blank piece of paper tied with a gold ribbon).  Nobody had to prompt him when to get up or to sit down.


He was calm, happy, and focused on doing what he had practiced. 

They say that in a room full of blind men, the one-eyed man is king; I am so proud that my baby was the one-eyed man at his graduation.

The Days of Whine and Roses

This week is Ryan's summer break.  He graduated from preschool on Friday, and starts extended year preschool on Tuesday. In the same classroom he just graduated from.  With the same teacher, and some of the same kids.

Aaanyway.

I had fantasies that we would spend this week doing fun, summer-like things, like swimming and going to the beach and eating ice cream at the park.  And we've done some of that.  Ryan had a blast for three whole hours at the wave pool on Monday.  (Yes, our city that can no longer afford to have after-school sports has a public wave pool!)  Ryan rushed into the water every time the waves started up, and slinked away whenever the waves stopped and the pool reverted to being just a plain old pool.  He braved some intense sprinklers and went down the mini water slide all by himself, over and over again.  We lasted over an hour at a friend's barbeque.  And we've gone to the playground and roller skated and played with Grandma and Grandpa.  

But we've also come up against a torrent of tantrums that leave both of us miserable.  It stems from Ryan's lack of pragmatic language skills and his accompanying frustration at not being able to communicate what he wants.  If it's a beautiful day, he'll beg to go inside.  If I ask him if he needs to go to the bathroom, he will throw himself on the bathroom floor and refuse to stand up.  And if you saw his reaction to my asking him to pick up his markers, you'd think I had been clubbing the boy like a baby seal.

Oh hark, I hear whining. 

A little column A, a little column B.   I adore column A.  But column B can punch me in the gut sometimes.