Category Archives: Uncategorized

Denis Leary or Schmenis Schmeary

Dear Schmenis,

Why so angry, chum?

In your new book Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid  you’ve directed your ire at the autism community. Word is out that you’ve titled a chapter “Autism Schmautism.” In it you state

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you — yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

Hmmm. Methinks someone has employed the Michael Savage publicity firm in an attempt to sell some books. Perhaps the book couldn’t sell on its own merits because it’s…well…not funny? Far be it from me to critique your writing – I haven’t read the book. I have enjoyed your humor – it is yours, right? – on numerous occasions & think you’re a clever guy. Who doesn’t love Two if by Sea?

If you must take the Savage route and bash a group of parents, why not choose parents of children with another disability? Don’t you think that picking on parents of children with Aicardi syndrome or Cystic Fibrosis would yield the same amount of chuckles? Oh right. You have issues with originality.

Okay. I see where you’re quoted as saying that you’d like Jenny McCarthy to picket your book tour. I’m more a Melissa McCarthy fan (& Amy Sherman-Palladino)  , myself. Sounds like you think that if Jenny went after you it would help you sell a lot of books. Is that why the autism parents are your target? Because we have a celebrimom spokesperson who is hot ? Or was this a calculated decision based on the sheer number of families affected by autism? The greater the outrage, the greater the number of media outlets – is that the plan?

One could make the argument that you’ve actually done the autism community a great service by bringing the disorder back into the headlines. There’s no such thing as bad publicity, right? Maybe going after the autism community isn’t a publicity stunt, maybe it’s a keen social commentary couched in biting humor. Maybe you’re going to make a very generous donation to the autism charity of your choice –  hopefully not based on a percentage of the sales of this book. Or maybe you’re just….this.

Denis, my parting words to you are this: remember, the Affleck kids will always have better seats than you at the Sox games -even before they’re potty-trained. That must hurt.

-the cheese says WTF Gus? If I boycott your movies I’ve got to find a new holiday flick.

 

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Echolalia: Sounds so nice he says it twice!

We’re back from our whirlwind, one-day road trip to St. Louis. The boys were showing the strain from a four-and-a-half hour car trip followed by a four hour stint at their cousin’s wedding. Though my youngest did a wonderful interpretive dance to “Sweet Home Chicago” – which may have been the longest eight minutes of some of the wedding guests’ lives as they tried to overcome the need to giggle – he didn’t enjoy the reception. After he was finished eating ( & miracle of miracles he did eat – the bride & groom were thoughtful and provided 2 of the seven foods my son willingly ingests), he said “Dad, get the check and let’s skeedaddle!” Our tablemates were very amused by him.

He fared much better back at the hotel. Not that he’s still a…

Okay at this point I yelled out to my husband “If a Francophile is a person obsessed with all things french, what kind of -phile is someone obsessed with trains?” Without removing his eyes from the TV he says “Umm…autism-o-phile?”

…kid obsessed with trains, he very much enjoyed staying at a hotel situated in a refurbished train station. He especially enjoyed the Whispering Arch in the Grand Hall.  Just because he’s forced to listen to Wilco by his borderline obsessed mother a Wilco fan, he whispered the lyrics to “Casino Queen”  (in actuality he probably chose this song because we’d seen billboards for the actual CQ along the highway on our way into town) to his brother, who marched off in disgust.

I, of course, started singing “Shiny, shiny pants and bleached blonde hair” as we passed the landing. Ah, memories. The last time I remember going to the landing in the summer I was dressed in a whilte jumpsuit with a 4- inch wide silver belt, which I thought was the height of fashion. Sadly, it was pointed out that in reality I looked like a female Elvis….without the talent. Though I did get a notoriously silent friend to talk about his brother & the coins said brother could stick up his nose, but that’s a story for another time & another affliction.

Okay, so you get the picture. The kids were overstimulated and bored, simultaneously, if that’s possible.  They awake the morning after the wedding only to face the car trip home – less than 24 hours after we had arrived. And I insisted on eating breakfast at a place I like in Clayton. Which was quite a detour from our intended path home & crowded, to boot. I was entertained by people-watching, but the kids weren’t. They were plugged in to the restaurant’s electrical sockets, playing a few treasured minutes of video games which I had approved in order to get a few treasured minutes of peace.

The waitress, who was trying to take our order, fixed her attention on my young DS player & asked what he’d like to order. I prompted him, since he didn’t answer the first time, and he said- not peeling his eyes away from the screen (see above reference to his dad)- “I don’t want anything. I don’t want anything.”  This was in a REALLY loud voice.

You know how sometimes people at the next table start riffing of your conversation even though it shows blatant eaves-dropping on their part? Well, the folks at the table next to us weren’t doing that. They just randomly started talking about echolalia. Which brings me to the point of this entry (quelle surprise…she has a point!)…most of the people that hear echolalia dismiss it as “meaningless babble” which is unfortunate. While they are technically accurate in the definition of the word but I think this is a case where the word and the meaning have long since parted company (like alt country?).

I love what this Dr. Bill Long says in his essays (really, hang in there and read this one and this one…c’mon you made it through my obscure Wilco references….) The myth of Echo and Narcissus is such a great illustration. Long’s hypothesis that echolalia is laden  with emotion and coupling that with Dr. Frith’s input that echolalia is the product of a person with autism trying to communicate “above their grammatical competence” makes my heart sing (possibly something by Daniel Johnston).

My kids have each exhibited echolalia at one time or another.  The oldest was stuck on saying “Now available on DVD” which he picked up from the commercials for Disney movies. At first, it seemed he used it randomly. Then it dawned on me that he was only saying “now available…” when he was very happy.

While he doesn’t lapse into echolalia as a teenager (except when he’s mimicking Joe Biden) he still struggles with producing reliable speech when overcome with emotion. But don’t we all? It’s OK to be “rendered speechless” and we’ve all heard this expression  from time to time (never about me, but I’ve still heard the expression). BTW when we think something’s important,  it “bears repeating.” Don’t most songs have repetition in their lyrics…”Happy BIrthday” & “Twinkle Twinkle Little Star” & “Jingle Bells” & “Forever Your Girl” come to mind. Boy, for someone who claims to have good taste in music – Paula Abdul? 

So is echolalia a memory issue? It’s usually the end of a string of words that is parroted back, right? Is that because the beginning of the string of words is forgotten or because the words hold no meaning for the person with echolalia?

Is echolalia a building block to spontaneous functional speech? Read Uta Frith’s “Autism: Explaining the Enigma” and get back to me. Also, does anyone else see the connection between “fendle” and this book? But which came first the chicken or the frindle?

-the cheese says say cheese. practice makes perfect.

The prettiest smackdown ever – Jenny McCarthy & Amanda Peet

I’ve been in the world of autism for around 12 years. I wouldn’t consider myself complacent citizen of the autism world. I’d say I’m more a jovial but sarcastic hostage of the world of autism with a slight case of Stockholm syndrome. In all these years, I’ve never been prepared to be the resident spokesmodel for parents of children autism. I’ve always thought that eventually & unfortunately, a child  that would bring autism into the collective consciousness of the average people (to Mr & Mrs Joe six-pack, in Palin terminology).

Over the years, I’ve heard of some celebrity connections to autism. Some of the people I’ve seen listed as having kids on the spectrum are:

  Can you identify all of these folks? This is a pop quiz, people!

While I’m sure that some of the issues that we, as parents of children with autism, all face are universal. There is no amount of fame or fortune that can insulate you from the panic that a child’s diagnosis of autism brings. And I don’t fault them at all if they’ve jumped to the top of the list for services because of their stardom. Wouldn’t you if you could?

Before Jenny McCarthy , I used to think that if Julia Roberts or Matt Lauer or one of those High School Musical kids had a  child with autism that more attention would be paid to the unmet needs of our kids. Not that I’d wish any ill fortune on any of those people or their kids, just that it would definitely put the issue more in the public eye. Of course, I don’t mean to categorize any of the celebrities who already havekids with autism as slackers. I’m sure that they were all contributing to autism awareness (and more importantly, dealing with their child’s autism) but no one’s efforts were creating what you’d call a  publicity frenzy .

Then came Jenny. Jenny McCarthy has a bullhorn and she’s not afraid to use it, folks. She’s talked to Oprah & Larry King about autism. She’s written book. She’s on ET & Access Hollywood (please don’t ask how I know this!), she’s on the cover of magazines with her incredible bob (just the one o, people!) and self-proclaimed big mouth.  She’s everywhere & she’s not afraid to speak up.

Even if you don’t agree with all of her beliefs, you must admit that Jenny McC is drawing the public’s attention to the issue of autism.  Granted, this is not something that Jenny’s trained for (unless her stint as hostess of the MTV show “Singled Out” counts) but how much have any of us trained to be in this situation? I’m frightened of what I would have said if I’d had a public platform to share my opinions in the years immediately following my son’s dx. I haven’t read Jenny’s book (it’s moved to the interesting-but-not-vital portion of my book list) & I’ve missed most of her appearances, so I can’t comment on anything but to say that she’s definitely mixing it up.

And now, with this. Amanda Peet, who has been a mother for all of ten minutes, has proclaimed that …”parents who don’t vaccinate their kids are parasites.” For those of you who don’t know her, Amanda Peet is an actor (whose next movie is titled “What Doesn’t Kill You” – interesting timing, eh?)Did I mention that she doesn’t have a child with the diagnosis of autism?

 or should I say?

While it would seem that Amanda Peet is referencing herd immunity in her “parasite” comment. It sounds as though she did research – talking to Dr. Paul Offitt, who created a vaccine of his own – the rotavirus vaccine.  I wonder if she researched what families of children with autism go through. When my oldest was an infant, healthcare seemed pretty straightforward. Your baby’s sick, you take him to the dr. and find out what’s wrong and how to fix it.

That’s not how it works with autism. Nowadays,  dr’s are better at diagnosing autism but no one can give you a treatment plan that will provide any guaranteed results. When my doctor got the report back from the developmental pediatrician, she said “Unfortunately, we’re right. It’s autism.”  When I asked her what to do she said “Pray.”

Jenny McCarthy to the rescue! She has taken exception with Amanda Peet’s comments.

Who’s right? Who knows? Let me know your opinion!!

 

-the cheese does not take financial planning advice from Miley Cyrus

Success!

In the words a favorite musician, “There will be droughts & days inundated”…but I’ve got nights like this to keep me going. My son had a great time at Homecoming. He went to dinner (we sat across the room with another set of parents who chose to stay at the restaurant since they were carting a group to the dance), danced (with a group? kids these days…), and came home with a balloon after one hour(like it was a trip to Cookie Cutters).

Let’s see…I spent about 14 hours as his personal stylist to make sure he was appropriately dressed (not to mention the twelve years – and thousands of dollars – carting him to various professionals to help him acquire the skills. I hope I age gracefully, because my extreme makeover money is long gone!) I went through about 12 diet cokes (my drug of choice) trying to keep a caffeine buzz going in case I had to stay up all night consoling him. All the sacrifices were worth it! I’d do it again in a heartbeat. I’m so proud of him!!

-the cheese will try to exfoliate regularly (or is that how you get grated cheese?)

One small step on your toes…one giant leap for my kid!

Today is a day that I NEVER thought would happen. I’ve been buzzing around town, getting my 14 y.o. Aspie son ready for Homecoming. This is a kid who’s motto thus far in life has been “People are a modern inconvenience to me” – which is actually a quote from an un-dxed Aspie childhood neighbor of mine, but my son has heard me say it so often that he’s adopted it as his own.

This year, he’s joined a club (we told him that joining one club was the only way we’d continue to support his video game habitwas mandatory) & actually started talking to the kids in the club – even outside of club meetings. YAHOO! This is the kid whose social worker wrote a goal for him as a fifth grader to make one friend. (Not the best goal in the IEP sense, but you have to admit that her heart was in the right place.)

He’s asked to go to extra-curricular activities on his own (meeting up with some of his friends) – which is huge. In the past there was no reward great enough to entice him into going to a dance or game. We’d offer video games, cash, bonds, plushy costumes resembling his favorite Neopets in his size (which by the way…the places you have to go to find those…ewwww), etc. Nothing worked.

(Magnet available at this site – get two, they’re small!)

Tonight may be a total bust for my son. He may call for us to pick him up after ten minutes of the dance. He may cry while he’s there (I hope not – we’ve done a lot of preparation to make it go as smoothly as possible). But just the fact that he showed interest & tried is a triumph for him in my mind.

I know that we all have those “milestone events” in our heads when we think about our kids’ lives – the first day of Kindergarten, eighth grade graduation, prom, etc. I had honestly rewritten the script to exclude anything resembling a dance. Now I am thinking that even though his experience will be different from the other kids’, at least he’ll have one.  Maybe I’ll still have to settle for a wedding on Second Life, maybe he’ll live in my basement until he’s forty, maybe he’ll always secretly wish he could dress as a Faerie Kacheek…but at least he’s opening up to some of the possibilities that involve more interaction. I’m very proud of him! And who knows…maybe he’ll find another person who thinks faerie kacheeks are very attractive.

-the cheese is happier than the day she accidentally doubled her dose

Autism, you first?

The negative political ads that are sprouting up around my kids’ favorite TV shows make me wonder how correct is politically correct? I was recently accused of trying to impose PC language on others when I (in a very low-key manner or so I thought) corrected a loved one who said that a boy was “an autistic.” My primal instinct was to redirect her to the more person-first language of “the boy who has autism.” My loved one really hasn’t spoken to me or my primal instinct since.

Person-first or people-first language is the practice of using semantics to consciously promote the idea that we should first recognize the person and then the disability. For example instead referring to a kid as a “diabetic” you would say “a kid with diabetes” in people-first language. Likewise, instead of saying a person “is autistic” you would say a person has autism.The rationale behind this  practice is that it allows for the person with a disability to be considered for more than just his or her diagnosis. In the past, when I’ve heard others using people-first language, it’s been  music to my ears – mainly because I’d always felt that using this phrasing implies a more evolved way of thinking about disabilities.

While it can be grammatically correct to use the word “autistic” it still grates on my ears.  About a year ago, Mac and I were at a conference filled with autism experts and educators. The keynote speaker for the conference was the state’s superintendent of schools who I assume is a person supportive of the ASD community as evidenced by her attendance at said conference,  made what seemed like a major faux pas by addressing all of the wonderful “autistic teachers” from her state.  Mac and I stifled our giggles when we saw the discomfort the superintendent’s comments brought to the faces of the experts on the stage behind her. I may have even stage-whispered sort of shouted something to the effect of “Good! At least we know our kids have jobs waiting for them as teachers in this state!” or something equally snide.  I felt pretty smug in my knowledge that I knew the more correct way – grammatically and politically – to describe the teachers of children with autism.

And then I came across this: http://web.syr.edu/~jisincla/person_first.htm. This essay by Jim Sinclair isn’t new, but it was new to me. It was definitely an eye-opener. It made me think about how we discriminate between autism and personality. Are all of the bad traits attributed to autism and the good traits to personality? I’ve started wondering how mindful I have been of the boys’ ways of thinking. Do they see themselves as separate from their autism? Do they see all of the grammatical awkwardness (really, people-first language can be cumbersome and redundant) that I’ve imposed on everyone as evidence of a message from me, albeit unintentionally, that says  “I love you. You’re perfect. Now change!” ?

Sure, you could dismiss this whole issue as a matter of semantics. But let’s face it, words matter -especially to parents of kids on the spectrum. How many other parents do you know that count every word that they’ve ever heard their child say? How many other parents know what “mean length utterance” is?  Who else lives and dies by the communication notebook from school? Reports of new word combinations used to mean an evening of celebrations. “No new words to report” led to  a night of near depression for me. To think that how we speak about our kids (& how we allow others to speak of them) is a luxury kind of challenges one of those pieces of wisdom that probably came needle-pointed on a pillow :  while actions speak louder than words, we use words to inspire action.

The argument against people-first language is not unique to the world of ASD.  C. Edward Vaughn wrote an article for the National Federation for the Blind entitled, “People-First Language: An Unholy Crusade.” Ouch. Talk about a name saying it all (actually the name doesn’t say it all – read the article to learn Mr. Vaughn’s well-worded argument). Wikipedia also notes that people-first language is rejected by many “deaf and autistic people.” So perhaps the politically correct stance is to go with the preferences of the individual who has the disability. Unfortunately when writing on a more global scale -like, I don’t know a blog maybe? – this rule doesn’t provide much in the way of guidance. Cheese reserves the right to write in people-first language & the right to change without advance warning…like a garbage truck backing up without beeping.

 Of course I’m going to need years of behavior modification to overcome my instinct to use people-first language. Does anyone know a good BCBA for that?  

– the cheese

cheese first, people second