Wednesday, January 12, 2011

The Mysterious Boog

I've had so many requests for a new Boog blog that I eventually had to come out of cyber-nation (get it, get it...okay, so I like puns) and think of something to write about. He's doing a lot of great things lately, mostly gross-motor related, but the mystery of it all is what's weighing on my mind lately.

He walks now! He climbs stairs and ladders and furniture. He spins in circles. He's *this* close to figuring out running. He's using the potty without protest a couple of times a day (though with a lot of help, mostly because he can't get his pants off by himself). He's about to friggin' graduate from PT because his therapist runs through several new tasks a week that he aces no problem (there's nothing funnier than the nonchalant expression on his face when you cheer for him. He's like, "Oh this? This is no big deal," or possibly, "Yes, clearly I'm awesome. I don't need your applause to confirm that.").

So, clearly he's made massive progress in the past couple of months. However, he is still no closer to talking or doing apparently-extremely-important-but-seemingly-inane fine motor tasks like stacking blocks, hitting things with a hammer, or rolling cars back and forth, and no one has any idea WHY.

The geneticist has basically cleared us after our third round of testing. The micro-array is still on the table as a possibility, but she didn't seem terribly hopeful that it would tell us anything significant.

We've actually stopped seeing the neurologist out of sheer frustration, because every time we go the only things he does are: 1. Suggest we put Ry in day care, as if he is only severely speech and fine motor delayed because he doesn't spend enough time with his peers. 2. Try to discourage us from having more children, and 3. Stare pointedly at my boobs. In my current pregnant state I fear another visit would just result in an overwhelming incidence of actions 2 and 3, so we just didn't schedule the most recent follow-up.

We were supposed to see the behavioral psychologist who specializes in autism for a follow-up in October, but when I called to make an appointment, I was told by his secretary (a woman who I have come to loathe, possibly through no fault of her own) that he had no openings in the current scheduling quarter, and she put us on the waiting list. Fast forward to three months later, and the Boog's still no closer to getting in to seeing him. I do occasionally see him at the Co-op and have considered mildly kidnapping him for a parking lot consultation. Regardless, though, he seemed pretty convinced last time that autism was not the issue here.

His therapists are mystified. They're all fantastic and have managed to find ways to get through to him and motivate him, but they seem no clearer on the actual cause of his delays than I am.

Here's what we know:

1. He definitely has SPD, which manifests itself mainly in underresponsiveness to most stimuli, oversensitivity in his hands and mouth, and overresponsiveness to certain textures. This alone, though, is unlikely to cause such severe delays.

2. He has good receptive communication skills for a child with expressive skills as severely delayed as his are. He can understand a LOT of what's said to him, what's going on around him and he's a surprisingly good problem solver.

3. He has the ability to communicate verbally and non-verbally, but seems to use it only intermittently. He has produced around 10 signs with regularity for a few weeks here and there over the past year. He also intermittently coos, babbles with several different consonant and vowel sounds, and has even said around 5 words during some of these verbal periods. The thing is, the communicative periods generally last a few weeks and then they disappear for a month or two, so he never has a chance to make much progress. However, during the times that he's non-verbal and not using many signs, he's no more withdrawn than at other times. He still pays attention to speech directed at him about 50-70% of the time (which is normal for him), plays the same games, gives all his hugs and kisses and signs of affection, he just regresses to more primitive forms of non-verbal communication.

4. When MOTIVATED, he can do just about any fine motor task he sets his mind to. He loves this game his speech therapist plays with the stacking rings, so he freely hands them to her when instructed to and follows the command to put them on his head (speech therapy gets pretty wacky when you have a kid as challenging as the Boog). However, despite the fact that he hears the same commands pertaining to other objects just as frequently, he will not follow those commands.

Also, he recently solved a mindbender puzzle intended for ages 8+ that involved manipulating one metal piece through another. Lest my doubtful readers think I'm being one of those psycho "my baby is 3 months and reading and feeding himself" mothers, I'd like to point out he's able to replicate those actions whenever he encounters the puzzle. However, he just will NOT put small blocks in a cup when directed to.

5. He is definitely on a slightly different plane from other humans, if you get my drift. He pays attention to things that other people routinely ignore, such as other people's hands and his own, things that are a certain shape or color or texture, a ticking clock, a shiny doorknob, etc. In fact, these things frequently distract him from his therapy tasks as they are SO much more interesting. Part of this visual distraction may be due to his motor nystagmus, and part of it is almost certainly due to his SPD. He does, however, also pay attention to things that other people do like people's faces, television, books, pets, babies, new items in his environment, etc.

6. He does not have Fragile X. He does not have any of the well-known metabolic disorders. He does not have auditory neuropathy. He does not have any chromosomally-linked genetic disorders. He does not display symptoms of many other major genetic disorders such as Angelman's. He is probably not on the spectrum. He was not born prematurely. He was not exposed to drugs or alcohol or large amounts of any known toxins while in the womb. His lead levels are normal. An MRI of his brain came back clean. He is not malnourished and never has been.

So, that's where we are. I'm planning on harassing the behavioral psychologist's poor secretary again soon to see if anything arises down that path. It is still possible he is autistic, but the psych seemed to think it was a long shot given the Boog's social nature and his motor problems. Other than that, I'm not sure where else to go. We've pretty much exhausted the medical route (and our savings account).

It's not a problem not knowing what's going on with him...except when it is. It's human nature to seek answers, to seek labels, to want to categorize. It provides us with comfort, and an illusion of understanding. I love the Boog. I think he's the most fantastic kid ever to walk the planet and I find his differences intriguing and challenging. Nevertheless, it would be nice to be able to say when people ask, "Oh, he has such-and-such," because as long as he's different, they will always ask.


  1. You should just make up some complicated sounding term for whatever is going on with him (most people will just pretend they know exactly what it is). As an ex-elementary teacher I must say it's great to see parents so on top of it, especially with a kid so young. Maybe having a sibling will cause some talking :)

  2. he IS quite the mystery, isn't he?
    a marvelous, magnificent mystery :)

  3. I'm so amazed by Rylan and was just giving my husband the basic feel of this post. His conclusion is that Rylan is an eccentric genius that just can't be bothered by anything that doesn't interest him.

    Wouldn't it be funny if one day he just started talking in full sentences with an advanced vocabulary? I wouldn't put it past him.

  4. Haha, Adrienne, I try not to think along those lines for fear I will be drastically disappointed if he turns out to not be an eccentric genius, but honestly, some of the things he does are just so wackily inappropriate for his age level that you've got to wonder...

  5. I love it, Christine! Dylan and I casually refer to it as "Boog Syndrome" (which, amusingly, can be shortened to B.S.) or "Boogitis". Maybe I should just start telling people that's what he has going on.

  6. I was just thinking the same thing as Adrienne. Rylan has always struck me as a Boog well beyond his years ;) What an amazing, interesting and sweet little boy you have... you're one lucky mama!

  7. I'm so glad you posted this in full detail of what is going on with your precious boy! Thanks for the update!

  8. I love your posts Megan :) I like how you explained more on Ry's condition too--he is so lucky to have a mama like you :)