Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[jough]

Hey kids,

I know JL misses you all.  I try to keep in at least semi-regular contact with Pedro and Jamie, and JL asked me to post this here to update everyone about their son Pearce's recent diagnosis.

I am certain our thoughts and prayers go out to them.  I know mine do.

Pearce was diagnosed with autism on Monday morning.  He is nineteen months old, which is remarkably early for such a diagnosis, but I can't say I'm altogether surprised.  My brother's son was diagnosed with autism three years ago at the age of 2 1/2, so I sort of suspected something was going on with him besides the obvious speech delay.  We were the ones who went looking for an evaluation (his pediatrician gave us the referral but didn't seem concerned), and we were hoping to rule out autism and hearing loss so that we could work on his speech delay and stop worrying about all that other stuff.  Instead, our worst fears were confirmed.

Monday was very difficult for Adrian and me, and we both spent a good amount of time crying on each other's shoulders.  Mostly we're just sad that our beloved son's life is going to be hard, but there's also an aspect of mourning -- for the loss of the son we thought we had, but never really did, the loss of some of our expectations, some of our dreams for him.  Most parents must go through this to some degree, as their children grow up into their own people with their own lives in spite of our parental efforts, but for us it came on very early and very suddenly. 

By Tuesday, however, we were back on our feet.  We got some books which have been very helpful, and we've talked to some people about getting speech and occupational therapy in place as soon as possible.  My nephew is now five and highly asymptomatic, in a mainstream kindergarten and reading at a second-grade level, making friends, and generally functioning more or less like a normal (albeit quirky) kid.  I keep reminding myself that my nephew is an awesome little boy and that by the time Pearce is five he will have spent a whole year more in therapy.  His symptoms are mild at present and his prognosis at this early age is extremely good.  There is much reason to hope that he will do this thing called "recovery," which sounds misleadingly as though autism can be cured.  What we hope for, rather, is that he will learn to adapt to a world created by people whose brains are wired one way, while his is and always will be wired another. 

Autism is a difference in the way information is retrieved and processed, and does not indicate a lack of intelligence or cognitive ability.  In fact, in Pearce's case, he scored appropriately for his age in three of the six criteria in which he was tested.  Of the other three, he was slightly below average in fine motor skills, which surprised us because his motor skills seem extremely good to us, at least compared to the other two babies we know well.  The evaluator assured us that she was certain that his difficulties were a result of the way the test was structured; children who don't understand language are very unlikely to perform well in other areas because they can't follow verbal instructions -- in other words, they simply don't know what game they're supposed to be playing.  For instance, when the therapist built a tower with blocks and then tried to get Pearce to do the same, he thought that he was supposed to knock over her tower.  He builds towers at home, but she couldn't give him credit on the test because he wouldn't do it on command. 

The other two criteria were both verbal -- expressive (how he communicates) and receptive (what he understands).  Most children his age can say a minimum of ten words (some sources say twenty to thirty is normal) and they understand many more.  Pearce currently has five signs but no spoken words.  He is unusual in that his communication is not only delayed, but dis-ordered -- he can communicate more than he appears to understand, the reverse of the typical pattern.  Standard scores are something like IQ scores, in that 100 is always average.  Pearce scored a 66 in expressive language and a 50 in receptive.  So we've got a long way to go to get him caught up with his peers. 

Fortunately for us, Pearce doesn't fit the stereotype of being emotionally distant -- he sometimes makes eye contact and often indicates that he wants us to join him in play.  He sits on our laps, spontaneously offers hugs, smiles when we sing him songs and sometimes laughs just because we are laughing.  He prefers to be held by one of us when going to sleep, and when he wakes up he likes to snuggle for a while before breakfast.  In short, he's very affectionate, and we're very grateful for that. 

Pearce does, however, exhibit repetitive obsessive behavior, usually involving texture.  He loves books, especially those with "touch and feel" spots -- and he scratches these spots obsessively, sometimes for hours.  (He has scratched the texture right off of some of his favorites.)  He also plays elaborate and solitary games with bouncy balls that none of us can decipher.  We are working on becoming a part of these repetitive activities turning them into social and imaginative games, which are much more age-appropriate and better for his development. 

I tell you all of this because autism is such a large umbrella.  Kids with autism are as diverse as kids without, and I want people to know that Pearce is not going to grow up to be Rain Man.  (A film I have never seen, incidentally.)  And because I have now told enough people about this situation to know what the general reactions are going to be, here are the answers to all those questions:

1) We don't know what causes autism, but the generally accepted theory is that there is probably a genetic predisposition to be sensitive to an unspecified environmental toxin.  We do not personally believe that vaccination/thimerisol causes or contributes to autism.  We do know that we have a strong family history with autism on both sides. 

2) There is no mistake.  Pearce is very young, but the signs are clear, and we are convinced that Pearce's diagnosis is correct.  We are also convinced that he can and will lead a normal life, and we are doing everything in our power to ensure that he gets as much help as possible as soon as possible.  We are grateful that his diagnosis did occur this early, because it improves his prognosis dramatically. 

3) We are meeting with a service coordinator on Tuesday to complete a plan for Pearce's therapy.  We don't yet know what it will entail, but we think it will probably be some combination of speech and occupational therapy several times a week, and possibly include some supplemental therapy such as music or sports.  For kids of this age, therapy is always conducted through play, and he will not even know he's being "therapized" -- he will just think he's getting to spend a lot of time in toy rooms. 

4) Adrian and I are really, honestly, OK.  Autism is a disability we know very well, and once we got over the initial shock we accepted it rather quickly.  We don't need sympathy, although prayer and encouragement are certainly welcome.  The hardest thing for me is seeing Pearce with typical kids, because it highlights his differences.  It's hard for me to hear kids his age talking and saying "Mommy" when my son doesn't respond to his own name.  But I know that this is temporary, and I look forward to the day when Adrian and I look at each other and both think, won't he ever stop talking? 

I don't know what the hardest part for Adrian is. 

5) This isn't a question people ask, but something I want everyone to know.  If I hear any of the following one more time, I really think I might go buy a gun. 

   a) "You know, Einstein didn't talk 'til he was three." 
   b) "Bill Gates is autistic, and he's the richest man in the world." 
   c) "My brother/cousin/nephew/dog's groomer didn't talk 'til he was five, and now he never stops talking/has a Ph.D. from Harvard/speaks perfectly/owns a huge chain of dog salons and vacations in Italy every spring." 

But the worst thing, the thing that people say when they mean well but don't know what else to say, is the last thing I want to hear -- just three little words:
   d) "I'm so sorry." 

Autism is not a tragedy; it's not the end of our world.  It's a hard thing, but it's not the hardest thing.  The hardest thing, I think, is knowing that most of the people who know that he has a disability will always be sorry that he has it, and not rejoice in the things that he can do well.  Being sorry is sort of a gut reaction, and most people who respond this way only mean to express that they wish we didn't have to go through it.  We wish that, too -- but wishing things were different doesn't help us, and it doesn't help our son.  The thing I most love to hear when we share our difficult news with friends and family is this:

"What can I do to help?" 

And the answer:

Learn.  Find out what you can about autism -- I'm glad to help and the Wikipedia article on autism is a surprisingly good place to start.  Then, when you know what autism is and how it affects kids in general, learn about Pearce.  Learn that he's different from typical kids, but that he can do lots of cool things that don't have anything to do with speech or language, and learn that the things that make him special to us aren't the things that make him Special (as in Special Needs), they're the things that are uniquely Pearce, our son, who we adore in every detail, exactly the way he is. 

Sorry that was a novel.  It's more complicated in my head, I think, but that's the general gist of what's going on with us right now. 

I'll keep you posted as I have time.  Thanks again for your concern and your support. 

 -- JD

[pmcd9]

I know an autistic child.  He is an awesome kid.

~Paul

[AugustWest]

Well gosh.  I certainly wish you had happier news for us on one of your rare communiques.  I'm glad you let us know.  I hope you'll be reading this thread so our good thoughts are received.

It's so hard to know what to say.  Clearly you are both well informed and are dealing with it very well.  It's hard not to lapse in to platitudes.  Here's my shot at it.

It's hard to explain to a non-parent the feelings you have for your child.  Short of the instinct for self-preservation and good ol' egoism, it's the strongest emotion there is.  On many (most?) levels I'd do more to protect/promote my children than I'd do for myself.  So it's hard when something bad happens to 'em.  It's hard on me when I notice that my spawn have inhereted some of my less admirable traits.  Thank god they got my looks too.

But what I'm learning is everybody has a hard road to travel.  Sure, some are harder than others.  Some are down right murderous.  But nobody has it completely 100% easy.  Everybody has (in varying proportions) hills, blind curves, potholes and state troopers on the interstate of life.

So you've discovered the nature of some of Pearce's obstacles on his particular highway.  Good for you!  Not to minimize the difficulties he'll face, but surely you and he are far better off being aware of them so very early in his life.  Now that you are aware of them you can deal with them.  And the little guy couldn't ask for a more intelligent and clever pair of parents to help him negotiate his particular expressway.

I could go on and on.  I'm feeling prolix, but I think I'll spare everyone that.  I'll wrap it the fuck up I guess.

We're all unique fuckin' individuals with our own particular strengths and weaknesses.  Pearce has an outlier in one area.  I think I've personally got an outlier (or maybe two) myself, also, I've got a kid with an outlier in there somewhere I think. So I understand how it is.  It's a hell of challenge to raise any kid to be reasonably sane.  Add in something like this and you've got your work cut out for you.

But here's the point.  I can't think of any of my imaginary internet friends who would be better equipped to help Pearce thrive and excel than JL and Pedro.  They've got the smarts, creativity and love to flatten out his road, as flat as any parent can (or should) make it.

Get busy.  And dang, give us an update a little more often.  You never call, you never write...

[side_show]

Wow JL - if you're reading this, I just want to let you know that I applaud you for your articulate, human and well thought out message.  In your absence I forgot how fantastically you write!  Not being a parent, I can't even begin to fathom the metamorphosis you've gone through as a mother, but you paint a pretty clear picture that this is exactly what it's been - a metamorphosis.  

Growing up in a family of educators, respite/social workers, working as the education coordinator at a children's theatre, and having a best friend who's a teacher, that I have basically met young people with every spectrum of autism.  There have been times I've done workshops with a class, knowing that one of the students has autism, but being unable to figure out which student it is at all, and other times, it's been totally obvious.  My bestfriend's favorite student (she says she doesn't have a favorite, but I know he's her favorite - she brings him up almost every time we talk) has it.  She changed from teaching grade one last year to teaching a combined grade one/two class this year, and of course she kept him.  The thing is... both last year and this year he's doing significantly better than several of the other students - students not labelled as "special needs." 

Your kid's going to be different than your expectations.  Better to accept that now than when she turns down full scholarships to prestigious universities to be come an artist...  Oh wait.  Who was I talking about again?  Sounds like you're in a healthy head space is all I'm sayin.

Anyway, JL, if you're out there, you were the Alpha Den Mother of this place years ago, so just keep on being the Alpha Uber Mama that you've always been, feel free to rain piss when you need to, and love the fuck out of your family, and I'll continue to gaze upon you with envy.

[V-Adore]

Yeah, all the salient points have pretty much been covered by others. Hope and strength to you all -- but it sounds like you're on the road well. A diagnosis at nineteen months gives you a lot of time to ameliorate the speech deficits, and the results of early detection are immensely hopeful... Pearce is gonna do well, I know it.

[wombat]

Everyone should read Temple Grandin's book Thinking in Pictures. She is a high functioning autistic who does a fascinating job of explaining what it's like to be inside her mind.

[side_show]

Everyone should read Temple Grandin's book Thinking in Pictures. She is a high functioning autistic who does a fascinating job of explaining what it's like to be inside her mind.

I saw the pictures of her with hourses and read, "my mind is a web browser," and I was like "aw, snap, now I totally want autism!"

[theinevitable]

Temple Grandin is coming here! in like a week!

but she's speaking during my Arabic class. damn. and my latin class.

best wishes to you and your kinfolk, JL. I don't know you well, but based on what Prior Posts of yours I've read, you seem well equipped to be The Second Best Mom (other than, you know, my mom. sorry. The best Pearce-Mom?)

[jay-ell]

Hi.  Hello.  It feels strange to be here again, like I'm coming back to a place from my childhood that has since changed drastically, but is still faintly recognizable. 

Thanks for all your kind words and encouragement, and for the book recommendations!  I have Temple Grandin's book on my reading list; I have read some of her shorter stuff but I haven't been able to put my hands on Thinking in Pictures yet.  It seems like every third book on autism has either a foreward by her, or an excerpt from her work, or at least a review blurb on the back cover.  She seems like a pretty amazing person. 

Pearce had his first offical speech therapy session this morning, and he seemed to warm up to the therapist rather quickly.  He's usually a little wierd with new people, but she did his initial speech eval and she's very fun, so he actually sat down and played with her after a while.  It probably doesn't hurt that she's a cute blonde -- I swear, for a kid who's supposed to have trouble socializing, he's certainly got a "type."  Much like his father, he is fascinated by blondes.  We went to a pizza place Monday night, and he actually did a double take when a cute pair of five-ish twins with blonde curls walked by our table.  If you've never seen a one and a half year old whip his head around as a girl walks by, then put his hand to his forehead and grin sheepishly, you're missing one of life's greatest pleasures. 

Anyway, that's pretty much the update -- one therapy session so far.  Meanwhile, I'm a week behind in my graduate studies and briefly considered dropping out of school, until pretty much everyone I know threatened to beat me severely if I quit with only half a semester and my thesis to go.  So I've got to take advantage of Pearce's precious naptime to get in touch with my prof and find out what I missed on Monday while I was sitting around my Mom's living room staring into empty space and periodically bursting into tears.  She's been very understanding but not very forthcoming with the requirements for the assignment that's due via e-mail in four and a half hours.  I'm pretty sure I'm going to get an extension on that since the only thing I know is that it's a "profile piece."  I don't even really know exactly what that means.

Oh, one last bit.  Jough already had these, but if any of y'all want to see the latest pics of our precious boy, there are some great ones of him and the Stanley Cup.  (GO CANES, baby!)  You can see them at Picasaweb: http://picasaweb.google.com/jldunston. 

I don't know if I'll be back here for a while, but you can get me on AIM (jldunston) when I'm supposed to be studying.  Thanks again for your kind words and your concern. 

[V-Adore]

Good to hear from you, JL. I know things are pretty wacky around here, but you'll always be welcome.

Another book recommendation, if you want one -- An Anthropologist on Mars, by Oliver Sacks, which is an exploration of the idea of mental and neurological "illness" as an alternate way of experiencing the world. While not specifically focused on autism, it has a very interesting account of Sacks's visit with Temple Grandin and his interactions with an autistic-savant young man, as well as other interesting anecdotes about living with being non-neurotypical. (There's one story about a surgeon with Tourette's, which sounds like a terrible joke but is actually pretty illuminating.) While I'm sure you're getting sick of hearing about Temple Grandin by now, the book is an interesting read regardless.

[Carlos del Vaca]

Good to hear from you, JL. 
And, what AW said.

Just looked at the pictures... criminy, what a handsome lad.  Stay away from my daughters, you!  No dating until they're 21!

[Doc]

I don't know JL or autism enough to make any useful comment apart from that damn 'on the train' picture belongs on a hallmark card of some description.
Too cute.

[V-Adore]

Just split the thread-wander into a new thread: here.