Tuesday, April 03, 2007

Lost in normal

Before other concerns dwarfed the everyday a couple weeks ago, we had our second meeting with the speech pathologist. She wanted to finish up a few tests and to listen to Scooter’s voice again. She had another pathologist and a student observe the beginning and videotape the first part of the session as she played with Scooter. After his part was done, she ran us through the report she had drafted at that point. As far as his language is concerned, everything falls within the bounds of normal.

Now ‘normal’ is actually quite a broad range on the bell curve, covering something like the 17th percentile through the 83rd.

Scooter’s grammar receives the lowest score, right at that lowest point. Interestingly, he missed several questions that required him to differentiate various forms of ‘he’ and ‘she.’ I had noticed this at our first appointment and have since observed that he does not seem to understand the difference at the most basic level; that is, he doesn’t seem to make a distinction between boys and girls.

His receptive language is the next weakest, at around the 37th percentile. He does fine with simple commands, but loses content once you add more than one adjective or subordinating clauses. That, and he got bored with the test and started pointing at every picture on every page.

His expressive language is dead average. 50th percentile.

Our speech pathologist will start speech therapy proper sometime soon. Her primary focus will be his pitch and prosody; he has a tendency to get high and squeaky, which she feels is impairing his intelligibility. She pointed out that without the pitch problem, it’s unlikely he would qualify for therapy.

To be honest, I wouldn’t mind his voice coming down an octave or so, but I don’t know what greater impact it might have. For all of my son’s apparent ‘normality,’ the tests don’t measure the way that he thinks or the fact that the way he tends to express himself does not match the conversations of his peers. They don’t capture the fact that, in my opinion, his language comes nowhere near to matching his obvious intelligence. But at least we will still have him in therapy. Our foot is in the door.

And we have been wedging our way in further.

Via the speech pathologist, we now have a referral for an occupational therapy evaluation and a developmental pediatrician. Both are given “per parental observation,” since she didn’t get to witness a meltdown or his off-balance run. We will get in for the OT evaluation in May, but it is likely that we won’t have a chance to see the pediatrician before leaving the area; not only is there at least a year-long wait, Scooter also doesn’t raise enough red flags.

Frustrated that our near-enough normal son might fall through the cracks, we have turned to a private clinic in addition. After coming to expect to wait for months on end (so that the May evaluation sounded amazingly soon), it was a shock when they told us they could schedule us for the next week. And so we will be headed there this week.

I have great hopes that they might be able to help us put together the rest of the puzzle. Although they do much of what we’re slowly getting to through official channels, they also deal with issues of sensory integration. Trillian and I both think this is the missing piece, as all of our reading in the area has really struck a chord.

Now, if you’ve had a chance to read my interview of Bub and Pie, you may notice that my final question suggests a bit of what I’ve been thinking about in regards to all of this therapy and such that we’re hoping to get lined up. And while I don’t have the energy at this moment to wax poetic about how much I love my son’s quirks and feel at least some trepidation that I might lose something I hold very dear (or the tangent, how much I see of myself in him and the fear that we will lose that or that I will realize just how messed up I am). But rest assured, those words will come.


Anonymous said...

Why was it a shock that dishing out dough for something that should cost nothing will get you in there as fast as you want? I understand wanting to do everything you can for your son, trust me, I do, but I worry that trusting private clinics to do the job simply means that some other kid will fall through the cracks.
But then again, you are American. Paying for something that Canada offers for free must feel natural.

cinnamon gurl said...

That comment above seems a bit scathing. It seems natural to me that if your child needs services and it looks like he's not getting what he needs from the state you would do anything you could to get the services elsewhere.

I find it really disturbing that kids who need help, even if they fall within the "normal" category, can't get it.

I'm Canadian and I'd pay anything for services that I think my son needs. Anything.

Lisa b said...

I loved your question about the special quirks that make up your child. I think I have mentioned before that I have worked with students across the autism spectrum. I am a huge believer in the theory that to some extent the traits are inherited so I find it so touching when you write about how Scooter's traits remind you of yourself.

AND I'm with Cinnamon gurl. We all want what is best for us and our kids. I think it is unfortunate that not everyone can afford to pay for services but would not hesitate a second to pay for something I felt my child would benefit from. Lots of Canadian's feel the same way. So does OHIP by the way - I was going to be sent to the US for a procedure when it looked like it could not be done here in time.

Mouse said...

I saw the first comment this morning, just before I had to leave the house. I decided to leave it for the time being, expected that Trillian at least would have made a choice reply by then (though she has told me she decided that would be unwise since I run a fairly clean blog here).

I've started to respond a million different times and realized that I have many, many things to say on the subject. So it will be my Thursday post. (Today being Wednesday and all, I've already got my environmental post started.)

Mad Hatter said...

I wonder why people feel comfortable hiding behind anonymity? I think we (i.e. those in my corner of the blogosphere) all want and believe in universal health care. No question about it. The system is broken, though, and waiting lists are almost unbearable. What needs to be addressed is a broken system. Picking on individual people for wanting to do the best for their families is nothing but mean-spirited. That someone would dismiss your concern for your son by chauvenistically blaming your nationality is enfuriating.

Mouse, I am glad to hear that Scooter is getting some attention. I feel for your conflicted state vis a vis wanting to help him and wanting to preserve his wonderful traits.