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Squiggle

The Squirrelly is inexplicably three. I have no idea how that happened. It's as if time were some sort of nonspatial continuum in which events occur in irreversible succession from the past through to the future, or something.

And while "The Squirrelly" suited him well when he was an infant and toddler, a more dignified blogonym seems appropriate for someone of such a wizened old age.

And so fair readers, I give you "Squiggle."

Though he will, of course, continue to maintain his secret identity.

Secret Identity

In the year and a half since Squiggle was diagnosed with Autistic Spectrum Disorder (ASD), he has been averaging about 25 hours of therapy a week, the bulk of which is Applied Behavior Analysis. He has made great strides, thanks to an incredible team of professionals who work with him five days a week. His eye contact, for instance, has improved immeasurably, as has his response to his name. This is fairly incredible when you consider that these two symptoms--the earliest hallmarks of ASD--were the most obvious manifestations of his condition when he was diagnosed at the age of eighteen months.

These days, his most noticeable deficiencies are in the area of expressive language. While he will ask for things he desires ("want Booty" is a common utterance in our household, and not just by me), usually say "hello," "goodbye," "good morning," and "good night" unprompted, and occasionally point things out to us ("that's a truck!"), he's not much of a conversationalist. He seems to have taken his father's aversion to chit-chat to it's logical conclusion. Unfortunately, this makes it difficult for us to know, at any given time, what he wants or how he's doing. We can usually deduce his needs, but he doesn't exactly spell them out.

Which is kind of ironic, given his obsession with spelling. (The kind with letters--not Tori Spelling, thank god). We suspect there may be a touch of hyperlexia in the mix. He learned his alphabet quite early; he wrote his first word at 2 1/2:

First Written Word

(That, by the way, is what he does when you request that he "smile for the camera." :| )

He has a special affinity for writing As and Es. We will sometime find them scrawled, in erasable crayon, on a cabinet and doors, occurrences we have come to attribute to "The Mad Voweler."

His current favorite toy is the Superman Laptop, which is no surprise they apparently used the Autism Society of America as their focus group for market testing. ("I like it, but it needs more buttons, bee-boop noises, and letters.").

"I'm Superman!" says the toy, in a voice completely unlike any actor who has ever portrayed Superman in any medium. "Can you help me find the W?" Squiggle presses the correct key, and the toys crows, "Good job!" It's cool that Squiggle likes it so much, but it makes me kind of sad. I grew up thinking of Superman as a role model, someone faster than a speeding bullet and faster than a locomotive; my son will grow up think of him as someone so helpless that he has to enlist the aid of toddlers to find the "F" on a keyboard.

* * *


We still believe that Squiggle is "high-functioning," through it is too early to determine whether is has Asperger syndrome, Kannerian autism, or just some hodgepodge of traits that will eventually be diagnosed as PDD-NOS.

The question of his cognitive abilities is a tricky one, unfortunately. He's maxed out some tests; on others he falls on the low end of average. As with most attempts to quantify intelligence, the results largely depend on what specific skills they are measuring and how they elicit his responses. And, obviously, his disinclination to express himself verbally complicates any assessment.

We are currently considering our schooling options. Our hope is to eventually enroll him in a FEAT (Families for Effective Autism Treatment) preschool--in which a mix of ASD and neurotypical kids share a classroom--but their services are highly sought after, and there is a considerable waiting list. In the meantime we will likely have him attend a regular preschool a few times a week, accompanied by a therapist who will help facilitate his learning and integration. Squiggle has attended music class for years (one class a week--not continuously), and does well in group settings, so we think he will fair well (and possibly thrive) in a classroom setting.

* * *

Though much has changed in the last year and a half, one thing remains constant: Squiggle has the most delightful disposition you are ever likely to encounter. Seriously, the kid could charm the pants off of another pair of pants. We recently received a thoroughly objective, dispassionate, and clinical assessment on his progress from the University of Washington, and, even here, the psychologist couldn't help but describe Squiggle as "endearing" and "sweet." This seems to be the consensus opinion, shared by everyone who interacts with him (except for our cats, who still view him as Monkey the Napwrecker*).

(* Gunning for the 2008 "Most Nickname-Intensive Post" Webbie Award, here ...)

Raising an autistic child is frequently frustrating and often exhausting, but it also brings it's own rewards. In many respects it is like watching a foreign movie: sometimes you feel like you don't have enough context to understand everything that is happening, but you appreciate that you are seeing a story completely different from the conventional narrative.

Squiggle is different than typical kids, but that's okay. If he weren't, he wouldn't be the son we love so much.

Puzzling
 
Posted on March 16, 2007 to Squiggle





Comments

Love the shirt on the first photograph. Love you writing about your son, because it makes me love mine probably even more (if that's possible - you know what I mean).

Thanks, and all the best to Squiggle!

Posted by: rrho on March 17, 2007 4:59 PM

I grew up with an autistic brother, and although there were difficult times, I would not have him any other way. The sparkle in the Squiggle's eyes reminds me of him.

Posted by: schmutzie on March 17, 2007 4:59 PM

The boy at our house has expressive language issues, too, along with eerie advanced comprehension of concepts. He can rattle along at a breakneck pace, but no one can really understand him unless you get lucky. The enhancement to typical toddler frustration for him and his parents is off the charts, but the love we have for this little person helps us take it in stride. One day at a time. One therapist at a time. One emotion at a time. Thanks for sharing this story.

Posted by: Linda on March 17, 2007 6:12 PM

I've been following defective yeti since a little before The Squirrelly was born. I have a lot of feeds to read every day, but I always read every one of your posts about him from beginning to end.

I'm a college student, and I am taken away by a post about your child. They're amazing.

You are a lucky man.
Squiggle is a lucky kid.

Posted by: Timen on March 17, 2007 6:24 PM

This blew me away. What can I say? Love it. Like Timen says, lucky man, lucky kid.

Posted by: Robert on March 17, 2007 6:43 PM

I have been lurking here for some time, enjoying your wit and writing style. I was particularly touched by this description of your charming son. The comparison to foreign films seems quite apt to me, given my experience with autism in the classroom. Thank you for sharing.

Posted by: Sol on March 17, 2007 6:44 PM

He's cute and mischievious-looking.

Posted by: Jack Ruttan on March 17, 2007 7:32 PM

Captain Heartbreaker, the Mad Voweler! I love the analogy with foreign films and I learned so much from this post.

I always remember your analogy between parental love and eating horseradish when I look at my daughter.

Posted by: ozma on March 17, 2007 8:31 PM

Yes, thank goodness about the not Tori Spelling.

Posted by: B. on March 17, 2007 8:34 PM

Dude, this sounds like an excerpt from the Pediatric Psychologist Full Employment Act of 2002.

Has it occurred to you that there is probably nothing wrong with your kid? Geez, give him some space. Maybe he just doesn't have anything to say right now.

(only semi-trolling)

Posted by: Anonymous Coward on March 17, 2007 8:54 PM

he is an amazing boy and you are the best parents for him.

Posted by: melissaS on March 17, 2007 9:00 PM

*snif*

Posted by: Carny Asada on March 17, 2007 9:58 PM

wonderful for y'all

Posted by: HL on March 17, 2007 10:16 PM

He just keeps getting cuter and cuter, and as he is A Kid also more and more mischievous! The Mad Voweler, LOL! Gotta love it!

Awwww, but I'm gonna miss the nickname "The Squirrely", that has more personality than "Squiggle." Gee, did I just nitpick a dad's nickname for his son? LOL The Internet: NOTHING is sacred!

I'm glad to her Squiggle is getting this kind of effective developmental treatment early on. Catch it early, and it is only to his benefit!

Posted by: mrgrooism on March 17, 2007 10:37 PM

Oh, Squiggle! You are so grown up and strong.

You have everything you need.

Posted by: Kate on March 17, 2007 11:45 PM

Your humor always delights me (probably because it's right in line with my own sense of what is funny and absurd), but it's the stories and anecdotes about Squirrelly - pardon me, I mean Squiggle..that are always the best read of the day.
An awesome kid and even awesomer (is that a word? is NOW) parents.
As always I'm forwarding this entry to my friends and family that don't make blogs a regular read.

Posted by: Greg on March 17, 2007 11:48 PM

Hey! I started reading when both the Squirrely and my own daughter were just little-- in fact I remember the first post forwarded to me that got me hooked-- the Bursting Ball. I laughed so hard, TEARS were actually spilling. :)
My dtr is about 6 months older than the Squirelly-- and in NO WAY CLOSE to him in the Writing of Letters. He seems quite advanced- those were amazing to be doing so well at his age.
I read a story once about how having a child with a disability is like planning a trip somewhere, like Vancouver. But when you get off the plane, you find yourself in, say, the Rockies. You can rage at the airline, at god, etc etc, that you wanted to go to Vancouver, and go kayaking and see stanley park and go scubadiving, and that you weren't prepared for the mountains.
Or you can accept that the rockies are a stupendously wonderful place to be, with their own Vistas and activities, snowboarding, glaciers, Elk, bighorn sheep, hiking, etc. So you decide to enjoy the trip, even tho it is different from what you were expecting.
Sounds like you have a wonderful tour guide for your travels!
Thanks for sharing Matthew.
BTW did you see that 'superman is a dick' site? Funny.
K

Posted by: Karina on March 18, 2007 12:10 AM


Congratulations on the new coming-of-age moniker Squiggle. And congratulations to you all on the progress made.
I second that comment about the mischievous looks. That first photo has ĎA Midsumer Nightís Dreamí written all over it.

Posted by: Lung the Younger on March 18, 2007 2:51 AM

im gonna miss squirrely, but i am very pleased to meet squiggle.
squiggle is a name ive called my boychild occasionally too, so its sweet to find someone else who's squiggly.
http://www.flickr.com/photos/littlefaeriegirl/152237748/in/set-72057594114178311/
thats my squiggle when he was 3

all the best to you, the queen, and squiggle
xx

Posted by: carly on March 18, 2007 6:23 AM

Geeeeeez, 3 years already?! Happy Birthday, Squir... uh, Mr. Squiggle, sir!

Posted by: Charity on March 18, 2007 7:03 AM

My younger brother has ADD and Asberger's, and while sometimes he has outbursts of frustration at the world and all of its inhabitants, he is one of the most intelligent and charming people I know. He didn't do very well on any of the cognitive tests given to him early in his schooling, but in school right now he's thriving, especially at math. Everyone loves his sense of humor, and chicks dig him, too.
Squiggle looks bright and happy; a great thing to get him tested for when he's ready is allergies. If he has dust or mold allergies, they can affect him a lot at school, because that's often where those triggers are found. Allergies, believe it or not, really bother kids with things like Asberger's. Getting that diagnosed can also help with sensory overload, if he has it. Best of luck to you and Squiggle! I really enjoy reading your blog; keep it up!

Posted by: Aubrey on March 18, 2007 8:07 AM

Look, he came into this world as the Squirrelly and I can't think of him by any other name. Great post!

Posted by: Davey on March 18, 2007 8:22 AM

I've been reading you for a while now and as am as usual touched by your writings about your son. He's a beautiful kid, and a lucky kid to have you and the Queen.

Posted by: Alison on March 18, 2007 8:23 AM

Happy Birthday, Squiggle!

Posted by: cm on March 18, 2007 8:28 AM

Look, I am usually pretty indifferent to cute kids; I'm not a kid lover, and so my usual reaction to kid pictures on blogs is "meh." But that pic of him "smiling for the camera"--good lord, it was like a cuteness landmine. I was completely undone by your child's charm, and now I have to go back and read all your Squirrely posts. :)

I've known a fair # of adults with ASD, and it's great that you guys are so tuned in to what's going on with him; he'll be well served later in life by all the hard work you're doing now.

Posted by: The Wax Lion on March 18, 2007 8:39 AM

It's so cool to hear he is doing well, and even that camera smile is charming.

Posted by: megan on March 18, 2007 9:54 AM

AE? Might stand for Albert Einstein. http://news.bbc.co.uk/1/hi/health/2988647.stm I'd only start worrying if he takes up electric guitar.

Posted by: JP on March 18, 2007 11:53 AM

You might want to have a listen to Quirks & Quarks 'Rethinking Autism' episode on CBC.

http://www.cbc.ca/quirks/archives/06-07/oct07.html

(Scroll down to the piece.)

I taught a lot of autistic kids. This is a refreshingly different perspective.

Posted by: waterloo.bob on March 18, 2007 12:12 PM

Cute kid! Love and support him as I know you will, don't let anyone tell him he "can't" and the sky's the limit.

Posted by: JeffR on March 18, 2007 12:58 PM

Beautiful boy!

Posted by: EverydaySuperGoddess on March 18, 2007 3:25 PM

Congratulations on the 3rd birthday. So glad your son is doing well and that you are tapped into such excellent support. I took the occasion to re-read the horseradish story that you wrote/posted upon his diagnosis. It still stands out as one of my favorite stories and a truly beautiful piece of writing.

Posted by: Pam on March 18, 2007 5:43 PM

Happy birthday, Squig! (If I may be so familiar....)

Matt, if you have not yet read "The Mismeasure of Man" by Stephen J. Gould, I highly recommend it. Just another way of keeping perspective on the silliness we can sometimes get into as a society about measuring "intelligence."

(I feel I owe you a book recommendation anyway, as I just re-read Jhereg, Yendi, and Teckla on your say so, and then went on to buy Taltos/Phoenix and Athyra/Orca, and have just started Athyra. Not that The Mismeasure of Man is really in the same category, but hey, it's a heck of a lot easier to read than Moby Dick.)

We have an Aspie taking classes at our community Chinese language school, and doing quite well. Since Squiggle seems to be doing well with many aspects of language, you might actually try exposing him to another language. Sometimes it helps broaden communication skills to see how there's more than one way to say something. Or not. It's just a thought.

Regarding the foreign film thing, I think that may be a difference of degree rather than kind when compared to living with toddlers (and kids in general), based on my experience with my nephews, but I'm probably not the right one to ask about this, as living with my kids *was* living in a foreign language film with no subtitles for the first year or so (they're both adopted from China and had to learn English after coming here). Regardless, just keep that perspective you display so well in this blog, and I think Squiggle ne Squirrely, The Queen, and you will all turn out fine.

Posted by: elizabeth on March 18, 2007 5:56 PM

Great post, and great attitude. As other people here, I'm happy for both of you. Happy birthday to Squiggle!

Posted by: Valera F. on March 18, 2007 6:06 PM

You do realise that *he* is the reason everyone reads your blog, don't you? You're kinda boring otherwise... :-).

Posted by: Friendless on March 18, 2007 11:48 PM

This is one of the most endearing posts I've read here. He's obviously a charming boy with those sparkling eyes. The mad voweler comment had me laughing so hard I was crying.

Posted by: Betsey on March 19, 2007 6:41 AM

When I was a sophomore in college I got a job at FEAT of MN. I worked with one family, one little boy Squiggle's age. When I started working there he didn't know the difference between yes and no, still wore a diaper, and had no eye contact/no desire to be with people. He has made huge progress, and I loved being part of that (even though when he started using sentences one of the ones I heard most often was, "All done Bella," as in, go home now I've had enough of you and your demands).

There was also the time we were playing outside on the slide and when we came in he announced, "Mom, Bella is wearing PowerPuff girls underwear." Mom gave me a funny look, "Are you?" "um....yes." And then we rewarded him for that awesome independent sentence.

He is one of the most funny, most clever, and most delightful people I've ever known. He just turned eleven, and is with kids his own age at school. I don't work for FEAT anymore, but that was one of the best experiences in my life, and he is one of my favorite people.

Good luck!

Posted by: bella on March 19, 2007 6:51 AM

Happy Birthday Squiggle! Just please don't call him Squiggy, or those of us of a certain age will envision him biting his palm and chasing after Laverne and Shirley. Be well, all of you.

Posted by: Katie on March 19, 2007 7:03 AM

I always enjoy your posts, Matthew. I'm honored you've let us into your life a little by telling us about your son. I will have to get used to the new nickname though.

Also, would you mind fixing the first sentence in paragraph 7 so it reads "given his obsession with spelling"? It's ok, I know you were just typing fast.

Posted by: Tracey on March 19, 2007 7:05 AM

Glad to hear that things are going so well at this stage. That bodes very well for him throughout his development. He is a wicked cutie.

Posted by: A Friend Of Torrez on March 19, 2007 8:51 AM

You lived past the twos... it's all uphill from here! :)

I've been reading for a while but I don't think I ever actually saw you say out loud that Squiggle is on the spectrum. I have a 7yo son and 8yo SD, both dx with Asperger's Syndrome - as well as myself. We make for quite the interesting household but I wouldn't have it any other way. :)

Posted by: Carrie on March 19, 2007 9:45 AM

Congrats on early intervention. My now 13-year-old brother wasn't diagnosed with Asperger's until he was six. More to do with my dad's need for a "normal" son and it's been a long road for both of them. (I'm 17 years older than my brother and watched it all as an observer.) The Puget Sound area so needs more resources for ASD children.

I love the analogy of a foreign flim. The Brother also spells incredibly well, not missing a single spelling word in elementary school and is a walking IMDB. All the best!

Posted by: Nicole on March 19, 2007 10:00 AM

I think it's awesome that you guys work so hard with Squiggle and see his potential, rather than giving up and consigning him to a life of settling.

My wife's little brother didn't speak until he was four. He's 16 now and you couldn't really ask for a more delightful kid. Well, I suppose you could, if he shot hundred-dollar-bills out of his ears. But he's a very talented actor and driven toward his goal of starring on Broadway, something I don't see having happened if his mom hadn't continuously worked with him. So keep it up.

Posted by: Mo on March 19, 2007 10:44 AM

Wow.

My heart just wants to explode with love for you all.

Truly, this is a beautiful piece.

Posted by: Anita on March 19, 2007 1:23 PM

So good to see Squiggle looking so well, doing so well and being so charming. I love hearing about him and how he's doing, thanks for spilling.

So, does the Queen get an updated moniker too? The Empress? The Great Eraser of Vowels?

Posted by: LizRM on March 19, 2007 1:26 PM

Thank you for sharing this, it is amazing. I wish you and your son the very best!

Posted by: PK on March 19, 2007 1:28 PM

As a mother of an autistic child, I loved your story about Squiggle. He looks to be a very happy and healthy little boy. My son is now 12 and thriving wonderfully in regular classes at his middle school. I still remember, though, the tough times, but that is what had made us stronger. My son also had the difference in his testing scores. But now he is testing and performing on about the same level. It does get easier. Good luck and take care.

Posted by: MaF on March 19, 2007 3:01 PM

As I read this post, several thoughts went through my mind.

Of course, the first was THREE YEARS??? But that means I've been reading a complete stranger's blog for longer than that. Sheesh - how pathetic am I?

The second thought was "Squiggle?" Is that kind of like going from Bobby to Robert? Sheesh - that'll take some getting used to. I may just have to stick with "The Mad Voweler."

The third thought was "Can he get any cuter?" Sheesh - notice I'm in a questioning mood?

You know, Squirrely, I mean Squiggle IS a lucky kid. It sounds like you and the Queen plan to stay on top of things -- be well informed, get the correct therapies and schools, etc. And your sense of humor will stand you in good stead whenever it gets frustrating. Yep, lucky kid indeed.

Posted by: april on March 19, 2007 4:58 PM

Happy Birthday, Squirrelly-Squiggles! Your fan club still thinks your folks are doing a great job!

Posted by: Holley on March 19, 2007 6:08 PM

I second and third most everything else that people have said. What strikes me as incredibly beautiful about your story of Squirrelly is the intimate portrait of fatherly love. I seriously hope you will consider submitting this somewhere, if only as a tribute to your son.

Author Nick Hornby has an autistic child, and put together an anthology featuring gonzo famous writers to raise money for his son's school. It's quite cool (but alas, I've forgotten the name of it, and am too lazy to look on my bookshelf at the moment).

All the best to you, The Queen, and Sir Squiggle.

Posted by: TK on March 20, 2007 6:59 AM

Your horseradish story is the most brilliant description of love I have ever read. Seriously. That adorable boy is as lucky as his Dad.

Posted by: Judy on March 20, 2007 8:47 AM

Your kid is so cool! I got a kick out of how he "smiles" for the camera. It's identical to the expression a friend of mine wears on every. single. picture. and I've always suspected her of having mild, undiagnosed ASD. (She's also a PhD and highly regarded in her field)
I think you are 1) incredibly lucky to have S diagnosed at an early age 2)incredibly wise to be getting early intervention. If only the "Dooce family" would manage to do the same for their clearly ASD-affected kid. I predict very different life outcomes for Squiggle and Leta.

Posted by: Molly on March 20, 2007 1:39 PM

I already miss The name Squirelly.
I read this post and I thought, "Damn, that Mattew Baldwin IS a pretty okay guy."
Thanks, if I was a writer, I would want to write what you write.

Posted by: Julie on March 20, 2007 4:46 PM

Sorry I spelled your name wrong!

Posted by: Julie on March 20, 2007 4:47 PM

Hurray for the Squiggle!! As a parent of an ASD son, an advocate, and the assistant to a DAN doctor, I understand your journey and am very proud of you for writing about Autism in a reasonable/loving way.

Posted by: Robyn on March 20, 2007 6:01 PM

I have lurked for quite some time and found out about your site from cockeyed. I always like reading about squirrly but today just found out about his condition. Thatnk you for humbleing me

Posted by: chris on March 20, 2007 6:11 PM

Thanks for this post. It's fascinating to hear about other parents' experiences.

What a rockstar your Squiggle is for being able to write! That is very far away for my son (who is 3 months older than Squiggle).

Posted by: Tired but happy on March 21, 2007 9:46 AM

The love you and your wife have for your son jumps off the page and touches me to tears. Your son will do amazing things, he's surrounded by pure love.

Posted by: az on March 23, 2007 9:28 PM

on a similar take to waterloo bob, perspectives on asd are currently undergoing quite a review. i (among others) have been quite blown away by amanda baggs' (she of the 'in my language' video) insights.
have a look:
video: http://youtube.com/watch?v=JnylM1hI2jc
blog: http://ballastexistenz.autistics.org/

ciao & allthebest

Posted by: progosk on March 25, 2007 9:18 AM