What To Expect Age 4, PDD Edition: Sensory-Motor

As promised, a WTE segment on Brad's sensory and motor profile. But first, a "happy birthday" to Brad and a thanks to his well-wishers. He had a nice day.

And now he is four.

We've seen his motor coordination skills improve significantly over the last year. His OT thinks he may be "caught up" on the fine motor side, based in part on his grasp and his pedaling.

There's still something wonky going on though. The "ho-hum" profile still describes him well; the low tone is still there. In the Out of Sync Child, Carol Stock Kranowitz refers to this as the "gravity monster." Well, Brad is four and he's still fighting the gravity monster. Here's another clip we made recently, which illustrates his tendency to lean or flop.



(As an aside, I know, I need to quit my ill-fated attempts at making conversation while holding the camera; Brad is not the only one who has trouble multi-tasking.)

We still do "wheelbarrow" exercises on a regular basis to build up trunk strength. We make it a game: Brad hides his favorite ball, and he leads me to it with a wheelbarrow walk. Not to be outdone, Jeremy plays too.

On the sensory front, the sensory-seeking behaviors at this stage appear to be mostly limited to face-touching. Emotional regulation appears good; he's still our chill little guy; we bring him to restaurants, etc. all the time.

What To Expect (Almost) Age4, PDD Edition: Communication

As promised, a WTE post on speech and communication.

His most recent speech stats are here, but that doesn't really tell the whole story.

I'm proud to report...drumroll please...Brad is talking. Well that isn't exactly news, but it is a fair description of his ability. His progress on the speech front has been slow and steady. When exactly his speech took off is hard to pinpoint. At this juncture, he can express his needs and even his emotions, and his conversation skills are budding. Exhibit A:



And if it isn't obvious, the more he talks, the more he charms us with his sweet nature.

Not to take away from his progress, but there are still many challenges ahead. He's still scripting. Or something. For example, often our exchanges will go like this:

Me: "How was school?"
Brad: "The name of the day is Friday. Friday is a tuna fish day."

That having been said, on the whole, we're very pleased, and proud of his progress.

What To Expect (Almost) Age 4, PDD Edition: Introduction

I've long complained that there isn't a What To Expect (WTE) book for PDD. So every now and then, I blog about milestones and such in an attempt to distill Brad's experience WTE style.

Which brings me to my next series of posts. With Brad's birthday approaching (he turns 4 on January 22), I'll be writing about Brad's progress in the following areas: speech, motor, social and feeding. This is Brad's PDD trajectory; it may or may not be representative of any other child PDD or otherwise.

Label Junkies: University Edition

This week I'm taking a break from interventions to ponder another lofty subject - accommodation.

Law.com reports: Princeton Student Sues Under ADA for Refusal of Extra Time to Take Exams. The learning disabilities at hand read like a "best of" edition of The Mislabeled Child:

• Mixed-Receptive-Expressive Language Disorder, which limits her ability to comprehend language, express language or recall material.

• Disorder of Written Expression, which leaves her ability to communicate in writing below the level expected based on age, intelligence or life experiences. When she writes, she has to repeatedly re-check what she has composed.

• Developmental Coordination Disorder, which leaves her ability to spell, punctuate and form sentences below the level expected based on age, intelligence or life experiences. She needs to read material several times over, isolate key words and highlight them so she can locate them again. Also under this disorder, her visual-motor processing skills are in the sixth percentile, "far below the average person, let alone the typical Princeton University student." She also suffers eye strain when taking tests and needs periodic breaks because of the way she reads passages over and over.

• Attention Deficit Hyperactivity Disorder, which limits her ability to focus. When reading, any distraction requires her to go back to the beginning of the passage.

It appears that, in a policy shift, Princeton's Office of Disabilities gaveth and then tooketh away:

Metcalf-Leggette learned of her diagnoses in 2003. Later, at the private school she attended, she received a 100 percent time extension for exams; a 100 percent extension on the SAT; and a 200 percent extension on the ACT.

Her older brother, David, who also had learning disabilities, graduated from Princeton University in 2008 and was given 100 percent extended time for exams while there. Metcalf-Leggette says she was told his extended time was approved by the predecessor of Eve Tominey, the director of Princeton's Office of Disability Services. Tominey left the extended time accommodation in place for David Metcalf "as a courtesy," the plaintiff says in her suit.

On the issue of accomodation, I hate to be wishy washy, but I can't help but see both sides.

First, the rights of the learning disabled must be weighed against the rights of the nondisabled. Educational institutions should attempt to level the playing field without giving the learning disabled an unfair advantage. How to accomplish this, I'm not sure. I'll reserve judgement on this one since there is so much I don't know.

Second, the rights of haves must be weighed against the have nots. In many places, it costs thousands of dollars to obtain a diagnosis by a neuropsychologist. So what about those who have a learning disability who can't afford to get a diagnosis (or whose parents don't know to pursue one)? The current system rewards the haves.

Third, the slope is slippery when you consider extra exam time for ADD/ADHD. Where do you draw the line?

And last, on a personal note, I feel emotionally invested in appreciation for individual learning style. Obviously, because my life is touched by it. Take history, for example. Can't schools test a pupil's command of the subject matter without making it an exercise in speedwriting? Can't teachers in grammar school slow down and appreciate that not all children can follow rapid pace multi-step commands? I worry about these things!

I will close with some choice comments on the lawsuit, via the Blackbook Legal Blog. First, an impassioned defense of accomodation:

Do some folks take advantage of the system? Sure. But the system is there to help those who really have a serious need and just require a bit of leveling the playing field to demonstrate they have the same knowledge as their non-disabled counterparts. If not for accommodations and technology I would still be a college fail out, instead of having 3 degrees with honors.

All I ask is a fair chance to show that despite my disabilities, I still know the law, and I can still practice the law. I know my limitations, I know my weaknesses, and I am not asking for anyone to feel sorry for me or give me an advantage over anyone else. All I ask for is the use of the technology I need and the time to use it, then let me rise or fall on my own. My grades, the vast majority of which were earned un-accommodated and my getting to within 11 points of passing the bar exam in half the given time show I know the law, I just need a bit of extra time to show I can write the law in a readable manner.

And one commenter makes light of the label junkie-ness:

I was always a bit suspicious of these claims (I must admit that when I read the list of conditions the plaintiff was claiming it seemed like something from the Onion, I was expected to see "intelligence deficit disorder"). Even assuming they are 100% legitimate, I thought a fair compromise would be to allow the student to take the tests untimed but to make clear that these students could not receive a class rank without taking the tests under the same conditions as everyone else.

I ressemble that remark.

"Pruning"

When it comes to interventions, much is written about "rewiring" the brain - the theory (and, for some, hope) that intensive interventions can cause an atypical child to be more neurologically typical. Is rewiring possible? I don't think anyone knows for certain.

But it is well settled that you can work with the wires you already have. During childhood, the brain undergoes a pruning process, during which underused neurons and synapses simply die off. This is perhaps the best argument for early diagnosis and early intervention. With early intervention, perhaps we can prevent some of those tenuous synapses from dying off, and the sooner we start, the better the chance for a positive outcome.

With that in mind, in the coming weeks, I will blog about interventions that we have tried. In the upper right, I indicate that we use "moderate interventions." I'm going to try to give that vague statement a little more shape, speaking of course from a parenting/anecdotal POV.

First, a prefatory note about goals. Because, of course, as any special needs mom or dad with an IEP knows, you need to start with goals. About one year and nine months ago, if you had asked me about my goals for Brad, I might have replied that there is only one and that it is that he acquire speech. Flash forward about six months later, I started thinking more about social pragmatics and empathy. I added warmth and humor to the list of goals for Brad. Today, on a high level, my goals for Brad have shifted to intellectual capacity, i.e. making those higher order connections and doing whatever we can today to avoid intellectual disability down the road. Not that communication and warmth and humor aren't goals for Brad - they most certainly are. But I no longer fear that Brad won't acquire speech or develop empathy.

Insurance Update

We won our insurance appeal. It took five months and two levels of appeals, but we won. Brad will be starting occupational therapy again soon.

A Little Bit Autistic Against the Machine

The insurance machine, that is. After covering occupational therapy for about 10 months, our insurance carrier has denied future services because our insurance covers OT for rehabilitative, short-term purposes only. OT for developmental maladies is regarded as habilitative - gaining new skills - rather than rehabilitative or regaining old skills. So I've lodged an appeal, complete with six enumerated exhibits. (I'm completely serious.) One such exhibit is cutie photos of Brad ostensibly to demonstrate that he had no signs of hypotonia as an infant (whereas he does have hypotonia now, and therefore OT would be rehabilitative). But the real purpose of the pics is to make an emotional appeal. Claims reviewers do have emotions, don't they???

Also, we've put the wheels in motion to try to get one on one OT through the school system. Right now he gets OT in a group setting, which is great but one on one, and the monitoring that goes with that would be better. The road block with the school system is different, but equally impenetrable - I need to make the case that his DCD or whatever impairs his ability to functionally access the classroom. Bottom line: the children who get one on one OT are bumping into stuff or toe walking, and Brad doesn't do either of those things. So this is probably a long shot.

We'll hear back on both fronts in the next month...

TGIF

Meet Brad's some time babysitter, which I referred to here.



His name is "VTECH."

"A Little Bit Autistic"

Just a quick note to reflect on recent events. After going through denial and acceptance and all of the turmoil that came with that, and after having Brad evaluated and diagnosed with PDD not once but two times, the latest doctor opinion casts doubt on the PDD dx. In the immediate aftermath, I felt angry. Now, my feelings are somewhat indifferent.

When it comes to mixed messages, it looks like Brad may be in good company. In comments, Three Channels and Goodfountain report similar mixed messages, i.e. between doctor 1 and doctor 2, or between doctors and the schools. And Stimey blogs about early skepticism on behalf of one doctor before getting a dx for Jack. So, in some respects, I'm just following a path that so many before me have paved, online and offline. A path that I'm certain will have many twists and turns.

My long time blog readers may recall that when I started blogging, I called my blog "PDD-SOS." It was really more of a personal vent than it was a blog, but no matter. I retired that name when acceptance starting setting in. If there's any doubt in anyone's mind: this time, the name is staying. Wherever the journey leads from a diagnostics perspective, my sense is that we will be A Little Bit Autistic for quite some time to come.

Mind/Body Connection

There's a school of thought that what Brad has is, and should be treated as, primarily a language disorder. I haven't blogged much, if at all, about speech therapy and communication issues. The reason: I regard Brad's speech delay as a symptom of something else. Of course I've blogged about that "other thing," whatever it is, ad nauseum.

But some one could probably present a similar case for the motor symptoms. That is, one might similarly argue that the motor impairments and hypotonia are just a symptom of something else, so why focus on those discrete symptoms?

Two thoughts on this:

1) I don't regard DCD as an isolated motor deficit. While the DSM-IV description of DCD points in that direction, in common parlance the alternate term "dyspraxia" is understood to engender a whole host of traits from speech delay to social impairment to disorganization of thought. And as I blogged, DCD is a set which overlaps with autistic spectrum disorders.

2) I've observed many therapy sessions, including speech, occupational therapy, developmental therapy and floortime. Hands down, without question, the most effective sessions by far have been the occupational therapy sessions. The occupational therapist, not the speech therapist, gets the most spontaneous speech from him. While I don't have proof of its effectiveness in a clinical sense, this mama believes that occupational therapy implicates some kind of mind/body connection.

Because the occupational therapy (OT) visits were so successful, the developmental therapist(DT) did a co-visit so that she could observe the OT's technique, and carry it over in her own sessions. And lo and behold it made all of the difference. For example, at first the developmental therapist would sit on the floor with Brad and play with him, and try to get him out of rigid routines, and to use imagination, etc. It just didn't work. I mean they played, but Brad mostly phoned it in, and veered into his comfort zone, i.e. blocks. After the co-visit, she started interjecting movement breaks into the play. It was simple: she put the wooden puzzle pieces on one side of the room and the puzzle on another. Voila! Such a small thing made such a big difference.

Brad's occupational therapist explained that it's tied to his arousal level. As I blogged, Brad presents as a sensory disregarder - "ho hum", difficult to stimulate and unmotivated to move. If Brad were a car, his idle would be on low. Seriously, by my count, he's had less than five full blown tantrums in his entire life and he's never had what can be described as a "meltdown." As I've blogged before, he has never once stood up in his crib, without prompting and assistance.

Brad's occupational therapist showed me that getting him to move increases his arousal level. And, in turn, when his arousal level is higher, so too is his level of engagement and spontaneous speech. So to make a long story long, this is why I don't blog about speech therapy. I regard the speech as intrinsically tied to sensory processing and arousal. To blog about communication without the other stuff doesn't make sense. To me, anyway.

Ever wonder why autism diagnosis shows a positive correlation to rainfall? I have a theory: these kids aren't outside much and therefore aren't moving enough. Moving the body forces the left and right hemispheres of the brain to talk to each other, which, in turn, promotes healthy neurological development in all respects. Just sayin. It's possible.

What's the deal with that?

Why do I open my mouth when I apply mascara or eye makeup?

I ask because I think it's some sort of reflex. (Name of reflex? Anyone???) Brad has a similar reflex, but obviously not in a mascara context. When Brad attempts to cut paper with scissors (with his left hand), he splays the fingers of his right hand and opens his mouth. This happens every time, without fail, and he looks tense. His OT says he's overloaded or challenged or something. Maybe it has something to do with concentration?

Just wondering. Has anyone else noticed this with their child, typical or atypical?

One more comment on a comment.

I'm not all piss and vinegar here, and "losing the diagnosis" should be put into perspective. He's lost one dx (PDD-NOS), but he kept the other (DCD). As I blogged, I regard PDD-NOS and DCD as overlapping sets with blurry lines. Brad is just moving to a label that connotes a different type of difference. But I think DCD is a better label because Brad's social impairment can no longer be described as "severe", and the label itself may be setting us back at this point. Here in Massachusetts, an "autism" diagnosis is the kiss of death from an insurance perspective. We're losing OT coverage in a week. I'm going to try to appeal. Perhaps, DCD will help.

In the DCD continuum vein, Anything, Sweetie remarks:

i have recently come to think of the spectrum as a colour wheel, and a term like DCD to be about as helpful as the word "blue-ish".

Point well taken, but I like the word "blue-ish." So many children with autism and sensory processing disorder are hypersensitive, or a combination of hyper- and hypo-sensitive. On the metaphorical color wheel, maybe they're red for hypersenstive, or purple for hyper- and hypo-sensitive. I think Brad is exclusively hyposentive. Like the color blue, he's cool with his sensory intake and expression. I finally feel like we have a label that fits nicely. I have a good framework to understand him, and perhaps some direction to treat him. Sure there are lots of shades of blue, but we can at least say that blue isn't the same as yellow, can we not?

What is intelligence?

It depends who you ask. The "intelligence quotient" test itself has been the subject of much debate because it favors those with stronger language abilities.

In this blogger's opinion, procesing speed is one of many factors that determine one's intelligence. Other factors include analytical intelligence and emotional intelligence.

Women, in general, are faster at processing, and consequently have superior social abilities. But it's not fair to say, as a general matter, that women are smarter than men for that reason, just as it's not fair to say men are smarter than women because in general, there may be a general advantage in analytical thinking.

Brad has a slow and coarse processor, which probably accounts for his language delays, his hypotonia, his lack of coordination and his social impairment. Many children with DCD/dyspraxia share these qualities.

However, I don't think Brad is lacking in intelligence overall. Brad's school district noted he was above his age in "cognitive ability", e.g. shape, number, letter and color identification, which is common for high functioning autism. While the typical developing child has pretend tea parties and the like, the atypical child is developing spacial and visual sense, and other pursuits.

The takeaway here? I blogged below the impairments that DCD causes. But it's not necessarily all bad news...

Musings, Part II: Social Exchanges

Have you ever considered all that was involved in a simple social exchange? I didn't, until ASD became part of my family life.

"There's a lot of data in a face," one of Brad's therapists told me several months ago.

Data? Face? It seemed like an odd statement at the time because, as a typical person, I read faces intuitively, sometimes successfully, sometimes not.

Having a son with ASD forced me to consider the process of social intuition. Take, for example, happiness. How can I tell if some one else is happy? First, words help. If some says, "I'm happy," that's a clear indication of happiness. Second, laughter would be an indication. But what if there are no literal expressions of happiness or laughter. How can I tell? A smile. Eyes light up. It's easy to intuit, but hard to articulate the process.

What about less subtle emotions, such as apprehension. Eyes may widen. Mouth may open. Body may become stiff. There is a lot of data there.

Now consider when some one is talking to you: eyes widen, eyes narrow, mouth opens, body tenses, head turns, words are uttered, posture changes. Data, data, data, and more data.

Now consider a social exhange: you're on the receiving end of all of this data, and in a split second you have to perceive it (i.e. hear the words, see the face), process it (what do the words mean when combined with the gestural communication and the facial expressions) and give it back (i.e. with words or nongestural communication).

Now consider Brad's perceptual abilities: face in the background, appealing visual/spatial stimulus (e.g. letters) in the foreground. And consider Brad's processing abilities: slow and coarse. So when he's in a social encounter, he's bombarded with data which he can't process efficiently, and often that data will be in his background, so he'll disregard it the way we disregard background noise. Other times, he may process it, but very slowly.

Still, he manages to process some of it, and that's an accomplishment in and of itself; he does manage basic reciprocal social exchanges. I'll smile at him and say "Brad!" He'll smile at me and say "Mommy!" Mind you, he didn't start doing this type of exchange until recently, but that small exchange makes me so very hopeful.

Musings, Part I: Foreground/Background

We know that the perceptual abilities of those with autistic spectrum disorders is different. For example, as I blogged, one study showed that those with ASD tend to have eagle eye vision. Individuals with ASD report other differences, including differences in the ability to perceive sight, sound, touch and taste.

I have no idea exactly how Brad takes in the world. However, I do have a theory: his foreground/background are the reverse of typical. Not the exact reverse. But different. For example, I often sleep in an oversized shirt emblazoned with a large "Old Navy" logo. When I wake my typical son, he greets me - sometimes with a smile, sometimes with a frown, but I believe he sees me in the foreground, and my shirt in the background.

With Brad, I think it's the reverse - it's like he sees my shirt in the foreground, and me in the background. Drawn to the visual stimulus, he recites the letters. He may be interested in affirmation for getting the letters correct, which is great, because that's joint attention. He's not detached from me. He just doesn't take me in or experience me the way my typical son does.
Similarly, noises that are in my background, like a plane flying overhead, appear to be in Brad's foreground. And when we go to a restaurant, he has an uncanny ability to pick out a baby crying, even if it's just a dull wimper from across the room.

Intro to Two Part-er

More musing about lofty subject matter: Brad's brain. His processor.

Perception.

Processing.

Expression.

Cognition.

What's going on in there? How does Brad take in the world and how does he synthesize it?

Here, I theorize from a parenting, not scientific, perspective.

Quick Hit

The truth about dyspraxia.

Update: Link fixed.

Developmental Coordination Disorder

At Brad's recent evaluation (second opinion), the developmental pediatrician gave Brad a new diagnosis - "developmental coordination disorder" or "DCD." DCD is often used interchangeably with the term "dyspraxia." In theory, DCD is the term favored in the US, although in my experience, dyspraxia is widely used in common parlance in the US.

The New York Times reports that approximately 6% of school age children have some degree of this disorder. Like PDD and sensory processing disorder, DCD is hard to define.

The DSM-IV criteria follows:

A. Performance in daily activities that require motor coordination is substantially below that expected given the person's chronological age and measured Intelligence. This may be manifested by marked delays in achieving motor milestones (e.g., walking, crawling. sitting), dropping things, "clumsiness," poor performance in sports, or poor handwriting.

B. The disturbance in Criterion A significantly interferes with academic achievement or activities of daily living.

C. The disturbance is not due to a general medical condition (e.g., cerebral palsy, hemiplegia. or muscular dystrophy) and does not meet criteria for a Pervasive Developmental Disorder.

D. If Mental Retardation is present, the motor difficulties are in excess of those usually associated with it.

In light of C (above), technically, Brad's PDD diagnosis should rule out DCD. (Or maybe it's the other way around?) Moving on.

Wiki describes the motor challenges associated with DCD as follows:

• Poor timing.
• Poor balance (sometimes even falling over in mid-step). Tripping over one's own feet is also not uncommon.
• Difficulty combining movements into a controlled sequence.
• Difficulty remembering the next movement in a sequence.
• Problems with spatial awareness, or proprioception.
• Some people with dyspraxia have trouble picking up and holding onto simple objects due to poor muscle tone.
• This disorder can cause an individual to be clumsy to the point of knocking things over and bumping into people accidentally.
• Some dyspraxics have difficulty in determining left from right.
• Cross-laterality, ambidexterity, and a shift in the preferred hand are also common in people with dyspraxia.
• Dyspraxics may also have trouble determining the distance between them and other objects.
• Some dyspraxics have difficulty achieving and maintaining continence either of bladder or bowel or both. Bedwetting or nocturnal enuresis is common.

Wiki indicates that the following speech and language problems are associated with DCD:

• Difficulties controlling the speech organs.
• Difficulties making speech sounds
• Difficulty sequencing sounds within a word
• Forming words into sentences
• Difficulty controlling breathing and phonation.
• Slow language development.
• Difficulty with feeding

The Wiki description certainly fits Brad's present condition, but I'm skeptical as to the role of dyspraxia with respect to Brad's speech for two reasons. First, the Wiki description is unofficial and therefore should not be relied upon as authority. Second, Brad had a significant receptive language deficit at 24 months. (Early Intevention pegged his receptive language at 10 months when he was 24 months old.) My understanding is that a motor planning deficit, such as DCD, does not cause a receptive language delay (although it could cause an expressive language delay because talking itself requires motor coordination or praxis). Moreover, DCD doesn't account for the Brad's social deficits. While dyspraxia may play a role in Brad's speech challenges today, including phonological problems and stuttering (or "groping"), DCD doesn't appear to tell the whole story.

Update: The DCD label was included in Brad's "impression" report; it was part of his official diagnosis.