Saturday, March 13, 2010


I reluctantly tuned into ABC's Parenthood this evening after hearing assorted oooooh's and aaaaaah's over a particular character in the show which happens to be a little boy being diagnosed with Asperger's.

I'm interested, of course, because whenever I hear someone say “autism” on TV, I'll at least raise an eyebrow but to hear the term “Asperger's Syndrome” used is a totally different story. No one knows what the hell it is.

Me: My daughter has Asperger's.
Them: Ass Burgers?
Me: No, Asperger's. It's a form of Autism

I must be honest, I wasn't expecting much. I'm really quite defensive when the whole Autism thing comes up in the media. I don't want anyone's sympathy, I don't want anyone's advice, I don't care if you know someone who knows someone whose neighbor has a kid who has it, I don't want anyone to act all surprised when they realize my daughter speaks and does well in school, etc. Over the years, I've moved further away from books, blogs, social networks, studies, news, documentaries, etc., preferring to deal with the one and only kid with Asperger's that matters to me.

People often talk about being overwhelmed by their child's diagnosis then rising above it. But the more I think about it, the clearer it becomes that it was different for me. If I were to explain my experience with Octobergirl's diagnosis visually, it would look more like me falling into quicksand and rather than reaching for a branch that I could pull myself out with (rising above the diagnosis), I decided to swim deeper into it - totally changing my career path and my life - and ultimately finding an alternate way out. I've never found a book that has helped me understand my daughter any better. The husband and I stood back and watched and let her teach us how to deal with it all. It has worked out beautifully.

So I'm sitting here watching this show today with all of this running through my head and I find that I'm cringing each time there's a scene with this character and his parents. I want to dislike it. I want it to offend me. It's comfortable that way, I'm used to it being like that. But that's not what happened. They didn't portray the child like some sweet, misunderstood angel in need of comfort and help. They didn't have him sitting on the other side of the room looking all distracted and alone. They didn't have him struggling to communicate, nor did they give him some savant-like ability to make up for any number of assorted missing normal-kid qualities. No. They made him look just like my kid. A bright, verbal child who enjoys the company of his parents while being so set in his routine and restricted interests that he presents more like a moody brat than a child with a disability. I was blown away, to be totally honest.

The episode I watched was also the one where the parents get “The News” from the psychiatrist. It was way too familiar and more than a little uncomfortable. There was the part where the parents shift uncomfortably as the psychiatrist tries to convince them to stay positive. There was the part where he tells them it never goes away. There was even the soft-eyed, gentle expression on the psychiatrist's face as he attempts to comfort the parents knowing very well that he's just broken their hearts. The whole scene was a little too real for me.

Throughout the show, the parents struggle to get their child out of this pirate costume he insists on wearing constantly. When they bring it up to the psychiatrist, the advice he gives them is that they should focus more on joining their son where he is rather than try to force him out of his comfort zone. The parents continue to shift uncomfortably and roll their eyes and I don't know where this is going. But then in the closing scene, the child is running around the back yard in his pirate suit and his father is running around after him with his own eye patch and striped shirt and now I'm thinking ABC may have won me over. For one more episode at least.

Friday, February 26, 2010

Flashback Post: September 17, 2005

I'm so incredibly glad that I wrote this particular post four years ago. It's quite remarkable how far we've come. There's a line in here somewhere about how I didn't know if Octobergirl would ever drink something and say "Wow, this is really good!" and just this morning she was telling me how much she loves her Horizon Vanilla milk but, "it doesn't really make sense that the box says salt is in the ingredients, Mommy. When I taste it, I only taste sweet. I don't get it!"

#21 9/17/05 A Little More Detail About Her Autism

Recently someone asked me what it was that got Octobergirl diagnosed with autism. Because she doesn’t display some of the symptoms that come with a more classic case of autism, it is sometimes difficult for people, particularly those without their own kids to compare her to, to understand what it is about her that is different. And honestly, I don’t always do a very good job at explaining it. Not for lack of trying but rather because autism affects so many different areas. Unlike many autistic children, Octobergirl shows no sign of sensory dysfunction. She is not bothered by textures whether it’d be something she’s holding in her hand or something she eats. Bright lights and sudden noises do not have an abnormal effect on her. She is not bothered by crowds or strangers, has no irrational fears and doesn’t cling to a set routine. She loves to be hugged, likes being around other kids and is a rather easy-going. She does however have very delayed communication skills. Very delayed. And by “communication” I don’t just mean that she has a hard time communicating with you. It is actually also quite difficult for us to communicate with her. So much so, that even now at almost three years of age, she’ll look at you only half the time when you call her name (and this is a big improvement). Kids normally pick up that skill by the time they’re eight months old.

I am currently reading this book called “Quirky Kids” that absolutely speaks to me. It is a book written by two pediatricians about children who, like Octobergirl, present with only some characteristics of autism. A good friend of mine is a pediatrician and I’ve noticed that she’s always been somewhat hesitant to use the “a” word to describe Octobergirl. Instead she uses words like “quirky”, “interesting” or “eccentric”. I like that, but it isn't necessarily true and anyway “quirky” won’t get me the oh-so-incredibly-important services that Octobergirl needs. “Autistic” will, so I’m sticking to that one.

But I’m getting way off the subject here. The point of this entry is that it dawned on me recently that I know many people who are both curious and concerned about our family and I have not been the best at clearing up exactly how Octobergirl’s autism manifests itself so I will try to do that here.

I’m going to add, word for word, parts of Octobergirl’s cognitive and psychological evaluations which were done in May in an attempt to make this all make more sense. For starters, Octobergirl has only recently started to make her needs known. At the time of her psychological evaluation, Octobergirl didn’t point. Had I known what to look for, this would have been my first, and probably most obvious, sign that something was “wrong”.

….does not use words to express her wants and does not exhibit pointing.

She has since learned to point but still does not use language to exhibit a want/need, rather she will either point or stretch out her arms and grunt.

….was restless and demonstrated a short attention span, exhibited only fleeting interest in testing materials.

….exhibits moderately inappropriate interest and use of toys and other objects.

The “testing materials” they refer to here are all different sorts of toys. She has only recently discovered toys. Around the time of this evaluation and before, she paid little attention to toys preferring instead to wander the house aimlessly “exploring”. Also, please keep in mind that while all 2.5 year olds have a short attention span, we are comparing her here to the typical 2.5 year old and his/her attention span. “Restless” was a word I wasn’t sure I agreed with at the time but can see it clearly now. She never stopped moving. She didn’t do this in the quick movements one may expect from a child with ADD which is probably why I never noticed it, but she never ever stopped moving and didn’t like to sit still which made restaurants and movies impossible.

….established sporadic eye contact.

….persistent attempts are required to get her attention.

She never turned your way when you called her name. You could stand right in front of her and yell her name and she wouldn’t even look in your direction. Try as you may, there was nothing that could be done to get her to look you in the eye. On occasion if she chose to look at you, she may maintain eye contact for 1-2 seconds. This has also improved to date thanks to the therapies she receives. While it is still mostly on her own terms, her eye contact has improved significantly and she answers 50% of the time when her name is called.

….verbal communication skills are in the 16 month age equivalent which represents a delay in 40%.

….has not developed meaningful language.

….has vocabulary of 6-10 words.

These have changed dramatically in the past four months. While she still offers no conversational speech, she does have a vocabulary (mostly labeling words) of about 150 words. Cool right? Let me clear up “conversational speech”. If Octobergirl sees a sweater in her drawer, she will say “sweater” if she sees a dog on the street, she will say “doggy”. If Octobergirl is thirsty, she does not know how to ask me for something to drink. If she is cold she does not know how to ask for a blanket or even say “I’m cold”. See the difference? This will improve in time, I’m sure. The thing is that we don’t know to what extent it will improve. In other words, there will be a time when she is thirsty and will say to me “I want juice”. This, I am sure of. What I am not sure of is that she will ever say “this juice is good!”. She may learn to use language only functionally or to get her needs met. But that purely-for-entertainment speech that you and I do where we talk about the weather and comment on how great those black slacks make my butt look, she may not ever do. Only time will tell. This is one of those things that has many a time made me wonder how many autistic people I’ve come across in my life and dismissed as “weird” or even “rude”, the kind of only-when-spoken-to kind of speech that doesn’t fly in social settings. We shall see.

….eats a variety of solid foods and is able to use a spoon and fork to feed herself.

….fine and gross motor skills are age appropriate.

….exhibits normal use of touch.

Some forms of autism come with compromised muscle tone, coordination and/or balance. We never noticed any of this with Octobergirl and neither did the psychologist. To be on the safe side, she was evaluated by an Occupational Therapist who confirmed that her fine and gross motor skills were fine and that she had no sensory dysfunction.

….exhibits mildly abnormal response to change.

In other words, she goes apeshit when she’s in the middle of something and you interrupt. She does not however seem to have a problem with her daily routine being changed.

….exhibits inconsistent cognitive skills: overall cognitive skills are delayed, but she is able to recognize letters and numbers.

In other words, it makes little sense that a child who doesn’t know her own name, doesn’t use “mommy” and “daddy” and can’t ask for milk or juice can know all her letters in upper case and lower case and can count from one to ten (in two languages nonetheless!).

The evaluations are 6-10 pages each and there are four of them, each from a different specialist. The one that “counts” though, the doozie is the one done by the psychologist which ends with this simple sentence:

….general impressions: shows a mild degree of autism.

So there you have it. Now you have (almost) as much info about my daughter’s behavior as I do. Now go ahead and ask me more questions if you have them.

Monday, February 22, 2010

Tiny battles...

Octobergirl stands with her forehead to the mirror crying along with her reflection. The sight must bother her because she puts her hands on her face and mumbles something about not wanting to see herself cry. I try to convince her that I'm here to help and will walk her through the steps one by one but she's not hearing it. She turns around and her little belly sticks out from under the top of her green X-mas pajamas that are now a year and a half old and a size and a half small. She's adorable 98% of the time, my Octobergirl. But right now? Oy.

Right now, I'm not yelling or comforting, or breaking down anything into smaller steps. No, we're about 20 minutes into this and I'm tired. My mind wanders and I start to think about how I'm not sure I can follow the pattern - if there is one - of battles I choose to dive into and those I chose to leave alone.

Octobergirl sometimes sits in front of her food and takes maybe one or two bites every 20 minutes. I become impatient (specially if we're eating out) and begin to feed her so that she can finish up with the rest of us. This drives my husband mad. We go back and forth between (him) how she's never going to do this on her own if we keep feeding her and (me) not giving a shit right then and there because I don't want to sit at that diner booth for four hours.

It doesn't bother me to have to feed her with one hand while feeding myself with the other. I understand that she's got auditory sensitivity issues, finds it hard to concentrate in noisy places, blah blah blah. So I think nothing of helping her out in that situation. But why is it that tonight she stands in the bathroom corner with her belly sticking out from her too-small jammies crying about how confused and upset she is over brushing her teeth and I'm not giving her the same understanding I give her when she's eating? Instead I try to reason with her. I tell her there's nothing to be scared or nervous about, mommy's here. She reminds me that she's confused, has forgotten all the "steps" to brushing her teeth and can't think straight. I tell her she doesn't have to think straight right now, mommy's here. Mommy remembers all the steps. She screams louder and louder and I decide I'm not doing this tonight. I pick that moment to bring to her attention that she's yelling at me when I'm in the middle of trying to help her. I remind her that she constantly yells at Octoberboy when he's trying to help her and I tell her that yelling at people who are trying to help is a really bad idea. I realize it's not the most opportune moment for a social story but if I don't throw this in there while she's in the middle of yelling (and I'm in the middle of helping) she may not make the connection when she's calm.

Around minute 27, I begin to plead with her. Let me help you, I'll remind you of all the steps. I'll do it one-by-one and slowly so you won't get confused. She just continues to yell, BUT I CAN'T I'LL JUST MESS IT UP ANYWAAAAAAAAYYYYY!!! I tell her she can either let me help her or she can go to bed with stinky teeth. The idea freaks her out but not enough to shake her out of her anxiety attack. I give up. Fine then, move out of the way so mommy can brush her teeth and go to bed. She moves over and I go about my nightly ritual which includes many, many minutes of flossing, rinsing, brushing and an eye-makeup removal ritual that makes me wonder daily why the hell I wear so much of it to begin with.

She waits to see if I'll change my mind, then gives up and goes to bed. I walk over to her room a few minutes later and flip off the lights then sit at the computer to blog.

Tomorrow we'll fight over the tooth brushing again. She has tooth brushing books. She has videos, I've written down the "steps", I've stood next to her and walked her through it, I've put my hand over hers and guided her through the whole process. Nada. I'd like to think I can just say screw it and refuse to help her til she comes around. But what's more likely is that a week from now she'll walk around blissfully unaware, rendering people unconscious with every "Hhhhhello!" and looking like she just ate a cream cheese sandwich. Maybe I'll just let her win and brush her teeth for her til she's 35.

Tuesday, February 16, 2010

Flashback Post: August 28, 2005

#6 Motormouth in Aisle 4

When my son was born, none of my friends had children. Left to figure it out on my own, I’d imagined the hardships that would come with parenting: the sleepless nights, the diapers, the expense, the doctor’s visits. I had no idea, NO idea, that one of the single most challenging things about being this child’s mother would be his tendency towards incessant speech.

My son talks all day long.

From the moment he wakes up til the second he falls asleep he treats us to a non-stop stream of sentences, about 80% of which start with the words “mami” or “daddy”.

Run out of things to talk about? No problem! Let’s just talk about having nothing to talk about!

Today was a particularly busy and exciting day that ended with our weekly trip to the supermarket. I grabbed a cart to share with Octobergirl and the husband grabbed another cart with Octoberboy. They look so funny together, those two: the husband pushing around a four-year-old clone of himself, both clad in knee-length board shorts and t-shirts, sharing a bag of apple chips. If ever Octoberboy starts wearing glasses I may never be able to tell them apart again.

During our shopping, he treats us to varied topics such as: how many more “sleeps” til he has to go back to daycare, the proper way to load the shopping carts (he knows more than we do and will tell us so) and a very interesting soliloquy about how Burger King really needs to rethink the toys in their kids’ meals because why make a Transformer toy with wheels that don’t spin and are Transformers smiling or are they upset about something because its really hard to tell since they’re plastic you know, and what does “plastic” mean anyway, I mean is it a name or is it just a word because every word means something doesn’t it???

Exciting days like today make them both even more talkative. Octoberboy talks about anything and everything while Octobergirl works her new-found vocabulary belting out labels for everything she recognizes. Once in a while she’ll say something that will catch his attention and he’ll stop to acknowledge her but most often, they speak simultaneously.


All. Day. Long.

At the supermarket she spots a box of crayons and yells “Cwayons!! Cwayons!!! Wook, cwayons!!!”
He says: “Mami, why do grapes come in different colors?”
He adds: “Mami, can we have some apples?”
She says: “Appoes!”
He says: “Mami, why does grandpa live in Long Island?”
She says: “Wook, appoes!”
He says: “Mami, why does Burger King give out Transformer toys? Who decides that? I want to decide what I get in my kids’ meal!”
She says: “Wass dat?”
He says: “Mami, she said ‘what’s that’!”
She says: “Wass dat?”
He says: “Mami, did you hear her?”
She says: “Wass dat?”
He says: “Mami, she’s talking like a big girl!”

At the register, I grab one of this week’s gossip magazines and ask Octobergirl to help me pick out a new hair color. I want to ring in my 30th year as a blonde or a redhead. Forget this jet black stuff, I’m bored. I flip the pages and she points at a picture of Eva Mendes and says “Mami!” I’m flattered for a quick moment but then realize that she’s pointing at pictures of every female in the magazine saying “Wook! Mami!” Her therapist has recently started using pictures of the husband and I so that Octobergirl can begin to identify us as “mami” and “daddy”. This probably isn’t what she’d been working towards but it’s a good first step.

I tune into Octoberboy in the cart ahead and he’s still complaining about Transformers and the expressions on their faces, or lack thereof. A few minutes later we take off in our car, I give them each a drink and the concert continues, Octobergirl behind me singing her ABC’s and Octoberboy continuing his monologue, pointing at the large storage facility that we’re driving past because its so BIG and we’ve never BEEN in there and its painted ORANGE and look, there’s parking for EVERYONE!

Just before we reach our apartment building I notice he’s stopped talking for about 45 seconds and I whip my head around in a panic. For one fleeting moment I fear for his life - surely he must be choking on his drink, how else could he be quiet for a whole 45 seconds? He lifts his weary head and gives me a grin that exposes every last one of his perfect little teeth.

“What, mami?”

“Nothing, baby, I thought of you and it made me laugh”

“Mami, you’re silly.”

Sunday, February 14, 2010


The ‘burbs disappointed. This business of homeownership is ridiculously overrated and less than two years into it, the husband and I are already wondering what part of NYC we’ll end up moving back to. I’m sure moving back is the right decision but, truth is, thinking about leaving here and starting the job search, the apartment search, the SCHOOL search, takes me to a most unhappy place. These things aren’t easy with children but as we know, things are especially uneasy with a child who needs a little something more.

Since we moved out here, I’ve been working at the school that the Octoberkids
attend. I’m the only Special Ed teacher in the building. Professionally, it was a terrible move. But on a personal note, I can’t imagine what would have become of Octobergirl if I hadn’t been around to show her teachers how to handle her, help them differentiate her instruction, lead and manipulate her IEP meetings, etc. I’ll be happy to put it all behind me and head back to a place where kids that walk that fine line between “normal” and “not-so-much” have more options than being thrown into a Gen Ed class with their fingers crossed and an IEP that no one looks at.

Second grade has been an interesting year so far. She’s an excellent student, follows a Gen Ed curriculum with ease and has had only two major meltdowns since September where last year she was having them on a daily basis. But that social gap? Yikes! I swear it widens daily. She went from being the socially acceptable “baby” of her first grade class to being a bit of a weirdo in second grade. I worry about how much wider it’ll get as the years progress.

She misses most social cues, takes everything very literally and is ready to curl up and die when one of her friends threatens her with “I’m not your friend anymore!” not understanding that it's an empty threat and they’ll forget about it a day later. She wants to play dinosaurs all day (lately, she prefers to play the parasaurolophus) and doesn’t understand what her friends mean when they say they “like” her older brother. She'll say “I like him too!”, which of course makes everyone giggle. She also can’t wrap her head around the idea that there may be more than one way to play with a toy and often comes off as bossy.

There have been improvements, of course. Huge ones. Although her anxiety continues to be her worst enemy, her speech has improved tremendously and now she can say things like “I’m confused” or “ask me later” even in the middle of a full-blown tantrum. In a few weeks we’ll go back to the neurologist for yet another evaluation. Last time we did this (18 months ago), she tested “borderline” across the board and we had to sit with the neurologist – who agreed that she still needs some degree of special education, ST and OT – and agreed the best diagnosis for her at the time was Asperger’s with comorbid ADHD. Neither really fits but without a diagnosis, she can't continue to get the services she needs.

Sooooo.....I don’t know what diagnosis they’ll give her this time and most days I don’t really even care. I live for the moments where she’s just sitting around drawing and being herself without the enormous pressure that surely weighs on a seven-year-old girl who is always so anxious and isn't quite sure what to make of most of the people around her.

She zigs and zags across that borderline and we follow behind her ready with her drawing pad, her favorite dinosaur book and warm arms waiting to see what side she’ll be on tomorrow.

(Octobergirl looking for fossils at The Museum of the Earth. Ithaca, NY)

Friday, February 12, 2010

Years later....

Is anyone out there? It's been years and I've got lots on my mind...

Wednesday, July 18, 2007

Blog removed...

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