The best things in life are free.

Recently, I asked Brad's occupational therapist for her thoughts on treatment, short-term and long-term. Our ration of insurance-approved visits will be up in February 2010.

Short term, she's going to continue strength building, grasping exercises, fine motor exercises and the play therapy (Floortime-ish).

For the long-term, when our insurance benefit is up, her sage advice: "Play outside a lot, and have him go on a lot of playdates."

"No, really," I said.

"Really," she said.

"What about occupational therapy? Or physical therapy? Services???" I stammered. "He must need something. Look at him. He still has terrible postural stability."

"Waste of time and money," she replied. "You're buckling him up, and confining him in a car, to drive him somewhere so that he can exercise. Plus, a one-on-one service hour deprives him of play with his peers."

At this stage, I can't say whether Brad's OT is right or wrong, but her common sense advice does resonate with me. Compare and contrast to the advice of Brad's private speech language pathologist (who happens to be quite thorough). Brad's SLP told me Brad's IEP is wholly inadequate and that he needs more service hours at school. Turns out, many children in my school district with a diagnosis do get more service hours in an ABA based program - even the borderline are-they-or-aren't-they PDD kids. Brad's SLP relayed this recommendation to me over the summer, and I have ignored her advice for the very reason Brad's OT cited: more one on one service time at school deprives of playdates and freeplay with Jeremy, which I think is valuable, socially - more valuable than being holed up in a classroom.

So for the time being, I'm inclined to place more stock in the common sense approach of Brad's OT than his SLP. Am I right or wrong? Only time will tell.

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.

Recalibrated Expectations

It's human nature to have hopes and dreams for your child. I love Brad unconditionally, but I can't turn off that part of my brain that hits the fast forward button and imagines the future.

And like so many parents, Brad's diagnosis initally shattered those dreams. Then I learned about autism, recalibrated my expectations and came up a with a new vision for Brad's future. He would be different, in a good way.

The rosy outlook culminated when Brad was evaluated by his school. His teacher made an observation in his written report: "superior attention and eye contact during the 50 minute evaluation." When we met in person, he went on to tell us that Brad isn't what he expects for the PDD diagnosis.

Superior, I thought. Not "good", not "sufficient", but "superior". There it was, in black and white. He's going to be okay in school. He might not even need special education for long. My expectations crept up.

Flashforward to Wednesday of this week. I met with the school district to check in and see how Brad's doing now. The verdict: not well. There's a massive delta between his one on one performance (i.e., when he was evaluated) and his performance in a group setting.

Bam! Serves me right for having high expectations and getting ahead of myself.

He's withdrawn. Socially, he's an island, off on his own. Cognitively, he's having difficulty following instructions. He goes for the playdoh by himself when the other kids are monkeying around with each other. He doesn't attend, which is his shining strength in a one on one setting. Bottom line: he's barely keeping up. And keep in mind, this is a special ed class. His peers are, for the most part, not socially advanced.

I've blogged before that Brad doesn't melt down. And from this I've concluded that he doesn't overstimulate. I think I'm wrong on that point. I suspect that he does overstimulate, only instead of melting down or expressing upset, he withdraws and blocks the world out.

I pressed for one on one "pull outs" for OT to fill the soon-to-be void, assuming we have to stop private OT. As I predicted, the school shut me down. Something about the law requiring services "in the least restrictive environment." They're going to add Brad to the OT's informal rounds. This means she'll visit him in the classroom and facilitate in a group setting. Not what I wished for but it is something.

The physical therapist will do something similar, visiting Brad when he's on the playground with the group to facilitate his physical play. He'll also get ad hoc one on one as needed during regular class to help him keep up. His IEP is being revised to reflect these new accomodations.

So, once again, I am recalibrating expectations, hopefully to something realistic this time. As for Brad, I'm grateful that he has a great educational team that really understands and appreciates him. Onward, with realistic expectations and a realistic IEP.

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...

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?

On Occupational Therapy

By popular demand.

Children on the spectrum have a wide variety of sensory challenges. A good OT can identify those challenges and provide the child the sensory input the child needs to feel centered. In Thinking in Pictures, Temple Grandin remarks that until she experienced the "squeeze machine" she invented, she wasn't able to experience a very simple emotion - pleasure. It's a powerful testimonial. In Engaging Autism, Greenspan and Wieder also write of the sensory challenges and advise parents to integrate OT principles with the "Floortime" routine. Last, there are studies that show positive correlation between eye contact and vestibular input among children with autism. It's like finding a sweet spot, and that sweet spot can unlock the door to emotions like pleasure, but also a higher level of engagement. A good OT can do that.

Who's a good OT? One who's worked extensively with children on the spectrum. One who's talented.

My practical advice for the newly diagnosed: if your child is under the age of 3, you're covered by your state's zero to three program, e.g. Early Intervention. What I learned through this process is that you may also qualify for an OT benefit through private insurance, if your child is covered by private insurance. We use a private OT, and my husband's insurance covers the benefit. So if the OT assigned to your child through Early Intervention (or other zero to three program) can't find that sweet spot, it might be time to interview some one new and you may have an untapped resource (private insurance) at your disposal.

We're fortunate in that Brad's OT not only has experience with children on the spectrum, she's certified in Floortime. As for what works for Brad, he benefits from procieptive and vestibular input. He works with the exercise ball and the sit and spin. Weather permitting, he works on our jungle gym - mostly the slide. She does all sorts of exercises with him. But what makes her extra effective is that she integrates the Floortime principles with the OT. She tries to engage him, using high emotional affect, following his lead to an extent and attempting eye contact when possible. She finds that sweet spot.

Compare and contrast to Brad's developmental therapy sessions, which are hit or miss. He goes through long stretches of persevating, zoning out and repetitive speech, in spite of the therapist's best efforts. Recently, we had the developmental therapist do a joint session with the OT, so she could learn how to get him to the top of his range. As a result, we've already seen an improvement in the quality of the developmental therapy sessions.

My two cents.

"Ho-hum"

The Out of Sync Child explicates the nebulous condition referred to as "sensory processing disorder" ("SPD"). By way of background, sensory processing disorder is not an official diagnosis. Lucy Jane Miller, an authority on the topic, explains:

It's hard to get funding for research because it's not in the DSM, but we can't get in the DSM without the research. It's a catch-22.

The Out of Sync Child sets forth the three general profiles of children with SPD:

1. Sensory Overresponsivity: The Sensory Avoider - "Oh, no!"
2. Sensory Seeking: The Sensory Craver - "More, more!"
3. Sensory Underresponsivity: The Sensory Disregarder - "Ho, hum"

Brad fits the "ho, hum" profile (described in detail below), almost to a tee:

The child reacts less intensely to sensations than do typically developing children. This sensory disregarder needs a lot of stimulation just to achieve ordinary arousal or alertness. His response to the world is "Ho, hum."

The child may be withdrawn and difficult to engage. Or, he may be so gifted and creative that he does not notice sensory stimuli because he is self-absorbed and preoccupied with intellectual pursuits. Determining the underlying cause of a child's problem is essential, and a therapist's art and science are required to figure it out.

The sensory disregarder may apper to be a "space cadet" or "out to lunch." He may be passive, lack initiative and unable to get going. He may tire easily and seem sleepy, and as a baby, he may have slept and slept and slept.

Source: The Out of Sync Child, p. 72

Underresponders often have sensory-based postural disorder, described below:

Postural Disorder causes the child to have poor posture. She may have low musle tone and be "loose and floppy." She slouches while sitting or standing and slumps over the desk and dining room table. This droopy child is beseiged by the "gravity monster." The reason may be the inefficient sensory processing of vestibular and proprioceptive sensations about where her body is in space and what it is doing.

According to Dr. Ayres, "The major symptoms manifested by children with this type of dysfunction....are related to the fact that man is a bilateral and symmetrical being." When a child has not developed a sense of two-sidedness, Postural Disorder may interfere with nature's plan, which is to keep upright and ready to spring into action, using both sides of the body together or separately as needed.

The child may have a problem with bilateral integration, the neurological process of connecting sensations from both sides of the body. The result is poor bilateral coordination, the ability to use both sides of the body together. For instance, she may struggle to gallop, skip, or pedal a bicycle.

She may have difficulties positioning her body and maintaining her equilibrium. Getting into different positions, such as kneeling or stretching to her tiptoes, without tipping over may also be a challenge.

Often the child will have poor ocular (eye movement) control, affecting binocularity - the use of both eyes together as a team. This will hinder depth perception, body movement, motor planning, and reaching for objects.

Source: The Out of Sync Child (pgs. 75, 76).

Brad presents with the symptoms of postural disorder, although I did not notice them until a skilled occupational therapist brought them to my attention. He has weak trunk strength and he's floppy. However, these symptoms have decreased with therapy. (He receives occupational therapy three times per week, and we do daily exercises.) He still drools. No sign of pedaling, although he is only 2.5 years old, so that may not be significant. His bilateral coordination is weak, as evident when he completes a puzzle or the shape-sorter.

As an aside, perhaps the apple doesn't fall far from the tree. I have terrible depth perception, and low muscle tone. (Of course, I haven't been to the gym in a decade but that's a different story.) However, what ever sensory issues I have never interfered with acquisition of language, as I believe Brad's issues are.

So I think the "ho-hum" label is a keeper for Brad. After all, I've never been one to avoid a label or the doctors/therapists that apply it.

Is your child "ho-hum"?