Thursday, June 30, 2005

Make poverty history

This weekend musicians around the globe will be collaborating in Live 8, an effort to increase global awareness of the plight of people in the world's poorest countries and the difference that leaders in the 8 most powerful nations - the USA, Canada, Great Britain, France, Germany, Italy, Japan and Russia - can make at the G8 Summit July 6 - 9.

You can make your voice heard and send the following e-mail to President Bush, by visiting this website:

Dear President Bush,

Because:


ONE billion people around the world live on less than ONE dollar a day;

The US government spends less than ONE percent on overcoming global AIDS and poverty;

Citizens are uniting as ONE across political and religious divides to support action to overcome the emergency of global AIDS and extreme poverty.

At the G8 leaders meeting on July 6th we urge you to:

Help the poorest people of the world fight poverty, AIDS and hunger at a cost equal to just ONE percent more of the US budget on a clear timetable;

Cancel 100% of the debts owed by the poorest countries;

Reform trade rules so poor countries can earn sustainable incomes.

We urge you to lead an historic deal with other nations to help Africa and the poorest nations overcome global AIDS and extreme poverty. Together as ONE, we can Make Poverty History this July.

Sincerely,

Your Name Here

Wednesday, June 29, 2005

P.C. PDD

What a coincidence that my last post talked about Christmas. Last night at bedtime I overheard a conversation between Bud and his dad that I haven't heard since last December, when it was a nightly occurrence. My husband went in to give Bud a kiss goodnight and said "Goodnight, Bud. I love you."

"Goodnight, Daddy," Bud replied. "Happy Holidays."

"Happy Holidays, Bud."

"Merry Christmas."

"Merry Christmas, Bud."

"Happy Hannukkah."

"Happy Hannukkah, Bud."

"Happy Kwanzaa."

"Happy Kwanzaa, Bud."

"Happy Ramadan."

"Happy Ramadan, Bud."

"Happy Solstin."

"Happy Solstice, Bud."

I don't know what got him in the holiday spirit. Come to think of it, though, it will soon be Bastille Day in France...

Monday, June 27, 2005

George and Sam

I think I'm in love.

I've just finished Charlotte Moore's book George and Sam and have fallen hard for it's heroes. Moore gives an honest, no-nonsense account of life as a single mother of three sons - George and Sam, who have autism, and Jake, who does not. This book is moving, heartbreaking, and - as any parent who has lived with a child with autism will surely understand - laugh-out-loud funny.

Moore is in a unique position to be able to describe the "autism spectrum." George and Sam, though both deeply affected by autism, are very different from each other. And because she also has Jake - the youngest of the three - she has a standard by which to compare the boys' development. She guides us through each boy's early years, when things seemed normal... then confusing... then disconcerting... and straight through each diagnosis and the range of interventions she's tried. Moore does not pretend to have all the answers; to the contrary, her experience confirms that there is no right answer: interventions that worked wonders for Sam had no effect on George, and vice versa.

She is also somehow able to avoid wallowing in the negative without glossing over the mayhem that is daily life in her house: striking the right balance of keeping the bathroom door locked so that it is not so accessible that Sam is free to flush his belongings at will but not so inaccessible that he pees in any other receptacle-looking thing he can find; making food for George but pretending it's for Sam, because George insists that he does not eat; putting Sam to bed in his school clothes to avoid the two-hour getting-dressed battle in the morning; indulging George's need to wear only his huge leopard-shaped slippers on his feet - in the snow, out to school, everywhere. In the end, I get the sense that though life in their house will never be "normal," they have struck a normalcy that works for them.

It's always interesting to me to read memoirs about other children with autism so that I can compare them with Bud. Bud and Sam have little in common; Sam is clearly more profoundly affected by autism than Bud. George, however, was very familiar. His echolalic speech patterns, his mastery of using the scripts he's memorized from movies to approximate conversation, and his habit of clamping his hands over his ears in challenging social situations are eerily similar to Bud. And yet, there are significant differences, too. Moore talks about the challenge that Christmas presents to her boys:

Never is the difference between the autistic and the neurotypical child more pronounced than at Christmas...By four, all neurotypical children understand presents. They enjoy the expectation, the novelty, the surprise; the act of unwrapping is in itself a pleasure...They are just old enough to enjoy giving something in return, and they are gratified by the expressions of delight on the part of the recipients.

Autistic four-year-olds have very different reactions to presents...They won't like the element of surprise. They won't see the point of wrapping paper, unless they enjoy the physical sensation of tearing it off...And if they understand the connection between present and donor at all, they'll be bothered by the pressure of expectation. Some sort of social response is expected of them. They don't understand which response, or why. The whole business makes them agitated and confused.

This couldn't be more inaccurate when it comes to Bud. Bud delights in both receiving and giving presents. He loves the unwrapping and the element of surprise. He is downright effusive in his gratitude - even if the "present" is a tube of Little Bear toothpaste we've picked up at the pharmacy. "Oh, thank you, Mama! I love this toothpaste you give to me! You give me this - what? Toothpaste! I love my present of Bear Toothpaste you give to me. Look, Daddy - I have a present of Bear Toothpaste!" (And yes, this is an actual account of a recent event.) He's equally ebullient when giving a present - eyes shining and body wiggling with anticipation. What does this mean? How can two children on the spectrum be so startling similar and strikingly different all at the same time?

George and Sam may not provide the answers, but it is a wonderful book that is bursting with heart. Frustratingly, it is not currently published in the U.S., but can easily be ordered from amazon.uk and is well worth the overseas shipping costs. I've just discovered that it's now out in paperback as well, which brings down the cost considerably. To me, this is a book that belongs next to A Slant of Sun and Not Even Wrong on the must-read list.

Cranio-Sacral Update

I posted several months ago that Bud was starting Cranio-Sacral Therapy and promised an update, so here it is. He's been having sessions just about once a week, usually for a half hour. The therapist we see is very respectful of Bud, so if he says "I'm all done now" after 20 minutes, then she stops. If he's really into it, she'll go as long as 45 minutes.

It's hard to know exactly what effect it's having because 1) there is nothing to measure, and 2) CST is only one of the things we are doing with Bud, so we can't isolate the effects of it as compared to anything else. That being said, my gut instinct is that it's a good thing. First, Bud enjoys it and looks forward to it. He settles into it quickly, and gets very relaxed during every session. His therapist says that she notices his system responding much more quickly than it did when we first started, and says that he leans into the therapy right away.

One thing that I have noticed, which we think is related to the therapy: I don't notice Bud grinding his teeth nearly as much as he did when we first started. He used to grind them so loudly it woke me up; these days I don't hear it at all.

Wednesday, June 22, 2005

Bud made a friend!

I wasn't actually there to witness it myself, but my heart is bursting with pride all the same.

Bud's Nana took him to the beach yesterday. There were two women there with their kids - a boy about Bud's age, and two toddlers. From past experience, we would predict that one of several things would happen: a) Bud would ignore these children entirely; b) Bud would show distress anytime one of the children came anywhere near him ("Oh! He's taking my water!"); or c) Bud would approach the children indirectly, and make echolalic pronouncements like "Tinky Winky jump for fun!" and play near the children, but not with them.

Nana found out quickly that the little boy's name was Brian, and that he was very, very verbal. Brian knew how to swim, face down in the water and with great aplomb. Bud watched him with fascination, then approached him directly and said "I want to do that." And so the friendship began. Brian showed Bud how to blow bubbles and they delighted in sticking their heads all the way under the water. Then Brian wanted to play sharks, and Bud joined in (though he took the time out to run over to Nana to say "It's imagination") before returning to the game.

At one point, Brian-the-swimming-shark was chasing Bud-the-running-boy and Bud looked over his shoulder with more than a little wariness. Brian stopped and said "I know! Let's play Follow Your Friend, But Don't Bump Him." Bud thought that was a great idea, and the game continued.

Nana says she sat at the water's edge, entranced and with an enormous smile on her face for the full hour and a half that the boys played together. She said "I've never seen him look into another child's eyes and laugh - but he was doing it!" By the time they parted, Brian announced "He's my best friend!"

The bad news is that Brian is not from around here - not even from the same state (though Nana told his mom that if she moved here, we'd provide free child care.) But the good news is, success breeds success. My hunch is that this experience has boosted Bud's confidence and has given him a taste of how fun it can be to play with another child. We will be on the lookout for the Brians of the world, and will seek out opportunities to engage!

Tuesday, June 21, 2005

Care to comment?

This mom pointed out to me that only blogspot members could post comments here. I've changed my settings, so feel free to comment away!

Monday, June 20, 2005

Thimerosal nightmares

I just read this and I am just sick about it.

More info:

http://www.salon.com/news/feature/2005/06/16/thimerosal_links/

Downingate

Where is the public outcry?

Isn't this at least as worthy of an independent counsel investigation as Bill Clinton's consensual sexual activity was?

Cheers, Macca!

"Mama, I want to see Palmer Live."

"Palmer? Who's that, Bud? Palmer Who?"

"Palmer Cartney."

Bud has inherited my passion for Paul McCartney. It's not at my insistence; if I had that kind of power, he'd have abandoned Teletubbies for Arthur or Finding Nemo years ago. My mom thinks it was the influence of hearing it in utero. I think it's genetic. But whatever the reason, it's there and I love it.

Bud watches McCartney's Back in the USA concert DVD and listens to the concert CD for hours on end. He knows every nuance of it: every whoa-whoa, every audience sound, everything. He especially enjoys our duets - me on vocal, and Bud on bass and percussion. He starts the backbeat - "boom-ch-ch-boom-boom-ch" - and I'm supposed to know which song we're doing and jump in with the vocals at precisely the right time. Luckily, he is very forgiving and prompts me with the lyrics when I need them.

He frequently does after-dinner performances for us, "playing" his guitar, belting out his favorite McCartney songs, and taking long bows as he revels in the roar of the crowd. Despite the fact that Bud is right handed, he plays his guitar upside down and lefty - just like Paul. We've never said anything about it, and he's never mentioned it; it's just how it is. He also pulls some McCartney moves during these impromptu performances. One favorite - holding the guitar by the neck and lifting it high above his head as we applaud and cheer for more.

One of my very favorite "Palmer" moments happened at church. During one Sunday service as our tiny little congregation (there were probably 25 of us there) began the opening hymn, Bud decided to join in. Only as we started singing "Morning Has Broken," Bud - at the top of his voice - launched into Band on the Run: "Well the rain exploded with a might WHASH!..."

Saturday was McCartney's birthday, so in celebration we watched his latest concert DVD, Live in Red Square. It is a terrific documentary of a remarkable concert. The music, of course, is outstanding. But the simple fact that the event could happen - McCartney in Red Square, for goodness sake! - makes the film a goosebump-producer. From the amazon.com review:

For the Russian audience, McCartney's appearance in Moscow is little short of a miracle. The Beatles were banned for decades by the Soviet government, which regarded their music as the epitome of Western decadence and propaganda, and the fans' only access to the group was through the occasional photo or black market album. Their reaction to his 2003 visit is a mixture of frenzy and rapture; in interview after interview, what one fan calls the Beatles' "gentle intervention" is credited with helping to bring down the whole Soviet system, simply because they represented a creativity and freedom that had been almost totally silenced. And that's all before McCartney plays "Back in the U.S.S.R.," which inspires a response that simply must be seen and heard to be believed.

Of course, the cultural context was of no consequence to Bud, but he loved every minute of the show. So hats off and happy birthday to Palmer, from two of his biggest fans.

Wednesday, June 15, 2005

Vive le difference!

Do you remember the old Coneheads skit on Saturday Night Live? It involved a family of aliens from another planet who were trying to assimilate on Earth. Whenever they did something that was clearly not typical human behavior (like, drink battery acid) and were met with puzzlement from their human neighbors, they would explain it away by saying "We are from France," as though any American would instantly understand that the French are just different and no further explanation would be needed. And it never was.

Well, "France" has been shorthand in our house for "autism spectrum disorders and related syndromes, and other autistic-like behavior" for a long time - before, in fact, Bud had a diagnosis. For example, when he was just a toddler and we'd have an adult friend over to visit whom Bud liked, he would take them by the hand to the floor in front of the couch, where he would have lined up his Teletubbies dolls, face down (because they were sleeping, we think), and (without using any words) pull our guest down until he or she was prone on the floor next to Bud, both of their faces buried in the Tubbies. It was a rite of passage clearly reserved for his inner circle, and it left our friends amused but bewildered. It was at times like those that one of us would look at the other and say, "He's from France."

It is now a part of our everyday vocabulary and on several occassions I've found myself making similar references in this blog that I've had to edit out. I think it's just easier to set the context and free myself from needless editing. It's honestly gone far beyond "He's from France." Actual conversations in our home include statements like this:

"Bud met a fellow Frenchman at the park today."

"I think their daughter might be from France. Or maybe southern France. Or at least an island off the coast of France."

"Bud had a really French day at school."

"Wouldn't it be nice if the people moving in across the street had a child from France? Or, at least, one who was fluent in French? Or even interested in foreign exchange?"

So, you see how this gets pervasive (and then we wonder where Bud gets the perseverative stuff... actually my husband is quite sure he's got a lot of French blood himself.)

I do need to say that these comments are never made in a mocking sort of way. We embrace Bud's French heritage; we admire his panache; we revel in his joi de vivre; and we always have the utmost respect for his je ne sais quois.

Thursday, June 09, 2005

Melatonin magic

The medication trial has been ongoing. When 5 mg of Ritalin had no effect, we bumped it to 7.5 and then 10 mg, still with no results. This week we switched to Adderall, but started back at 5 mg. (And though my friend Moi suggests we should try Strattera, Bud's doctor wants to try the medications with a longer track record with younger children first.) It has been difficult to gauge the results, however, because Bud has not been sleeping and it is taking a terrible toll on him.

Ever since the Daylight Savings time switch Bud has had trouble falling asleep at night, a phenomenon that is very common in kids with autism. Though we've blocked all light from his windows and he is physically exhausted, he simply can't wind down at the end of the day. We start the bedtime routine around 7:00 p.m. and it's usually sometime around 10:30 - 11:00 p.m. when he finally falls asleep. Then he's up bright and early in the morning, with dark purple circles under his eyes.

Though this has been going on for weeks, Bud had been managing surprisingly well until it was time to make a transition at school. His preschool program ended, and his summer services began. As transitions go, this one was minor: same classroom, same staff, same daily routine... just a few new kids whom he doesn't know. But he's been completely unable to cope. When I picked him up yesterday, the staff looked heartbroken. He'd had a terrible day. He wouldn't let them come near him. He wouldn't talk, except to use perseverative scripting. He wouldn't engage with any people or activities. He wouldn't do any of the sensory activities that usually help focus him (swinging, stomping, bouncing, etc.) And he looked utterly exhausted. (But bless his heart, when I asked him how school was he told me he had fun.)

I called his pediatrician in a panic. She had resisted giving him anything for sleep while we were trying out other medications, but I told her I'd rather suspend the Adderall trial to let this poor child get some rest. She told me to stick with the Adderall, and try giving Bud 1 mg of Melatonin before bed.

It was magic.

Bud was asleep by 7:45, and though he woke briefly a couple of times and called out to me, he slept until 7:00 a.m. And best of all, he had a great day at school today. So now the real trial with Adderall begins. Stay tuned.

Monday, June 06, 2005

Books Bought and Read, April and May

Books Bought:
George and Sam: Autism in the Family- Charlotte Moore
Millenials Rising: The Next Great Generation - Neil Howe, et al.
13th Gen: Abort, Rety, Ignore, Fail? - Neil Howe, et al
The Amazing Adventures of Kavalier and Clay - Michael Chabon
Carter Beats the Devil - Glen David Gold
Right From the Start: Behavioral Intervention for Young Children With Autism: A Guide for Parents and Professionals - Sandra L. Harris and Mary Jane Weiss
Raising a Child With Autism: A Guide to Applied Behavior Analysis for Parents - Shira Richman
Fever Pitch - Nick Hornby
Olivia Joules and the Overactive Imagination - Helen Fielding

Books Read:
The Polysyllabic Spree - Nick Hornby
The Amazing Adventures of Kavalier and Clay - Michael Chabon
Toilet Training for Individuals with Autism and Related Disorders - Maria Wheeler
Carter Beats the Devil - Glen David Gold
Right from the Start: Behavioral Intervention for Young Children With Autism : A Guide for Parents and Professionals - Sandra L. Harris and Mary Jane Weiss
Raising a Child with Autism: A Guide to Applied Behavior Analysis for Parents - Shira Richman (unfinished)
Fever Pitch - Nick Hornby (in progress)


I think I have a new favorite book. It's easy to see why The Amazing Adventures of Kavalier and Clay was awarded the Pulitzer; it is an extraordinary novel, with characters so real that though I finished the books weeks ago I often find myself wondering what they're doing now. It is a book about escape and the many ways that people attempt - with varied success - escape from poverty, from oppression, from reality, from themselves. And it is about the superheroes that exist within us all, suggesting that though most of us lead simple unassuming lives, there are extraordinary powers lurking just below the surface.

Because I read them back-to-back, Carter Beats the Devil never had a fair chance. It was a good book, but was recommended to me twice - once by someone who knew I'd liked Katherine Neville's The Eight and again by someone who knew I liked Kavalier and Clay - so my expectations were probably unreasonable. That being said, I enjoyed the book a great deal. Like both Kavalier and Clay and The Eight, some of the characters - including Carter The Great himself - were real-life people (others include Warren G. Harding, Groucho Marx, and Philo T. Farnsworth), though the book is a novel about Carter's life as a magician. The blend of reality and fiction in Carter Beats the Devil is like magic itself; it was difficult to know what was fact, what was based on fact, and what was complete illusion. Very early on I decided to read the book as though it were a magic show, suspend my disbelief, and prepare to be mystefied. And despite some visible wires and a couple of tricks that fell flat, it was a very good show.

The toilet training book was a utilitarian read, as Bud has been struggling in that area. Training has been two-steps-forward-one-step-back when it's going well, and one-step-forward-two-steps-back when it's not. The book had some good ideas, and was a good reality-check. There is no quick fix here; this is a long-range project.

I got the two ABA books because I had heard enough about ABA to think that it might be a good option for Bud. Unfortunately, I read the Harris and Weiss book first and it turned me off completely. It is a short book with a simple message: ABA is the only effective intervention for autism, and must be implemented in the preschool years for 30-40 hours per week with a one-to-one teacher to child ratio. The end. I admit that I am inherently skeptical of absolutes, and of anyone who purports to have found The One Right Answer and tries to spread The Truth. (I don't even practice a religion that promotes a single Truth; I'm certainly not looking for that in my pursuit of autism treatment.) The authors' approach is far too prescriptive for me. I also take issue with the underlying assumption that by pursuing options other than ABA parents are failing their children. Chapter One has a section with the subheading "Who Needs Early Intensive Behavioral Intervention Services?" which reads, "Every young child who is diagnosed with a pervasive developmental disorder including autistic disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (sometimes called atypical autism) should receive early and intensive behavioral intervention services... As discussed in the next chapter, the research documenting the benefits of these treatments is substantial, and the risks of failing to intervene before school age are very serious."

I tried to look past the dogma, but I'm afraid the damage was already done and I found it difficult to acknowledge the small-t truths in what they had to say. I had lost all interest by the time I started Shira Richman's book, and though she is much more balanced in her approach and offers some good approaches that can be adapted for individual children, I just couldn't stay with it. I'll go back to it once I've had a chance to mellow out about it.

In the meantime, I'm reading Nick Hornby's Fever Pitch. I enjoyed The Polysyllabic Spree so much that it resparked my enthusiasm for Hornby. Fever Pitch is one of the two of his books that I hadn't read previously (the other, currently residing on my bookshelf, is Songbook). I enjoyed the Colin Firth movie based on the book, but never felt drawn to a book about football. I was robbing myself. Yes, it's a book about football, but mostly it's a book about football as the content, context and metaphor for Hornby's life. Anyone who has had... unusual connections (I'm going to resist saying obsessions, because that's just too pathological)... to someone or something in popular culture (for me, it's Paul McCartney) will see themselves in this book and will find in it's author someone who gets it in a way that most of the people we encouter in everyday life never will.

Coinicidentally, Nick Hornby's latest novel, A Long Way Down, will be released in the U.S. tomorrow, and will soon be in the stack of books on my bedside table.

Wednesday, June 01, 2005

Empathy!

An "a-ha" moment for Bud last night, when he climbed into the mind of another and empathized!

As I've mentioned previously, I am always working with Bud on "theory of mind" issues: "how does that child feel, and why?" sorts of things. He has gotten very good at identifying another's emotion, but not at understanding another's motivation.

Then, last night we were reading a book called "Ricardo's Day," which is a picture book that walks us through Ricardo's day at school. Ricardo's mom brings him to school and stays in the classroom to get him settled, then leaves for work. We see a very forlorn Ricardo gazing out the window after his mother. Bud spent a long time looking at the picture, then said "Mom, he's sad."

I said, "You're right; he is sad. Why is he sad?" I expected "he's frown," or "he's sad face," or some other statement from Bud's own perspective: "this is what I see that tells me he's sad."

But Bud was quiet for a minute, and I could tell he was struggling to find the right words. Then he said, "He's love her mom."

I just about melted. Forget syntax. Forget the mismatched gender-specific pronouns. My boy has empathy!