Friday, January 14, 2011

Boog Mush

Okay, I'm not usually a fan of sappy blog posts, especially sappy blog posts about kids, and super-especially sappy blog posts about kids with special needs. You know the kind: "And as I saw Jimmy taking his first step, a great swell of joy burst in my heart. I heard music as if from a heavenly chorus and I knew that everything would be all right." Ick, right? Those are the kinds of blog posts I come away from thinking, "Gosh, I think I was right when I was childless and thought all mothers got lobotomies with their epidurals."

Parenting is such a humbling experience. I'm about to write one of those blog posts.

Blame it on the pregnancy hormones. Blame it on a Pandora station I've crafted so carefully that it seems to know exactly what I want to hear at any given moment. Blame it on the fact that I spent half the afternoon reading "magical" Bradley birth stories, if you will, but rest assured, my entire brain is fully far as I know...

This requires a little bit of background...

So, we've been playing this game with Ry at speech therapy and during our at-home therapy practices that involves those rainbow-colored stacking rings. It started with Ashley, Ry's ST, trying to get him to take off the stacking rings and put them back on and somehow morphed into this mess of silliness that he finds hilarious, which includes Ry taking the rings off one-by-one and handing them to Ashley or myself and then Ashley or myself putting the rings on our heads and saying, "Ah, ah, ah-choo" and nodding our heads so the rings fall onto Ry's tray, at which point he CRACKS UP. Don't ask. My kid is twisted.

Anyway, so this game was 100% responsible for Ry learning to hand things to people. The problem is that he has never been able to carry that lesson outside of therapy sessions or practice. The only time he's ever handed anything to anyone to initiate a game has been when he's sitting in a booster seat with tray and we've brought out the rings and instructed him to take them off and hand them to us...until today...

This afternoon, I got Ry up from his nap and we went in to the living room. He was reading a book on the floor and I was nursing my billionth pregnancy headache on the couch with a glass of water. Suddenly, he turned and saw his stacking rings. He abandoned the book (this alone is a huge deal, I've rarely ever seen him abandon a book, especially a Dr. Seuss) and grabbed the rings and started taking them off the post and then (amazing thing #2) putting them back on! He's never ever put things back where they go before. He's Mr. Destructo. He comes into a room, pulls it apart to find the thing he wants, and then he leaves with that thing.

After he'd taken the rings off and put them back on a few times, he grabbed the blue one, stood up, walked across the room to me, and PUT IT IN MY HANDS. To put this in severely-speech-delayed kid terms, that's a request to play. He had never done anything like that before. We're generally lucky if we can get him to look up when we say his name while he's playing alone. He has never sought anyone out to play with an object before! I obliged by putting the ring on my head and saying "Ah, ah, ah-choo" and knocking it off. He cracked up. Then, he chased down the ring, and brought it back and put it back in my hands!

He did this again and again, much to my amazement. As we finished the game after about the 10th repetition, and he started to walk away from me, stupid Pandora started playing "Upward Over the Mountain" by Iron and Wine and I lost it. It's a song sung by a son to his mother, and despite its clearly much more mature subject matter, I've always associated it with me and Ry. For those of you who haven't heard it, I'll copy the lyrics here (oh Lord, song lyrics, too? I feel like a 16 year old girl writing about her boyfriend...this is the epitome of sappiness...), but you should really head on over to, look under music for the album Creek Drank the Cradle and listen to it. It's beautiful.

Mother don't worry, I killed the last snake that lived in the creek bed
Mother don't worry, I've got some money I saved for the weekend
Mother remember being so stern with that girl who was with me
Mother remember the blink of an eye when I breathed through your body

So may the sunrise bring hope where it once was forgotten
Sons are like birds flying upwards over the mountain

Mother I made it up from the bruise on the floor of this prison
Mother I lost it all of the fear of the Lord I was given
Mother forget me now that the creek drank the cradle you sang to
Mother forgive me I sold your car for the shoes that I gave you

So may the sunrise bring hope where it once was forgotten
Sons can be birds taken broken up to the mountain

Mother don't worry I've got a coat and some friends on the corner
Mother don't worry she's got a garden we're planting together
Mother remember the night that the dog had her pups in the pantry
Blood on the floor and the fleas in their paws
And you cried 'til the morning

So may the sunrise bring hope where it once was forgotten
Sons are like birds flying always over the mountain

So, there I was sobbing like a big, pregnant baby over stacking rings and song lyrics and to tell you the truth, even the cynical realist in me didn't care. It was a tiny moment, but it was huge for me. I felt this weight lifted off at the first "Mother don't worry". Sometimes we're going to carry him broken, and sometimes he's going to fly on his own, but he's going to be all right.

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.