I think this will be my last post explaining the origins of the Boog, and then we can get on to our everyday life full of Boogisms (recent highlights: tantrum-throwing, what fun!, and Speech? Finally?).
While we were quite aware from the beginning that the Boog had some medical difficulties, we only became aware within the past year that something behavioral was going on as well. We take the Boog to a group pediatric practice, which confused the issue somewhat.
When I took him to his 9 month appt., the soft-voiced, perpetually frightened-face female doctor said, "Oh dear, he's falling behind developmentally. Therapy might be in order, let's talk about it at the next appointment." Of course, at the next appointment, we saw the crotchety, pipe-smoking (okay, I don't really know if he smokes a pipe, but if I someday find out he doesn't, it will be like finding out there is no Santa Claus) veteran doctor who said, "Nah, he's fine, but you should feed him more meat" (have since deeply pondered why this fellow was the one I initially listened to...perhaps it was the imaginary pipe...).
Eventually, though, we saw the hunky, hunky male NP who also happens to have 2 or 3 young kids of his own, and he began to gently point out the Boog's oddities and their possible causes. The Boog was around 15 months old at the time and he didn't consistently respond to his own name, he wasn't walking, he stared at shiny objects and lights, he didn't speak, he could spend hours "reading" the same book over and over again but he looked at the words instead of the pictures, etc., etc. The NP suggested autism or a similar developmental delay disorder, gave us a referral to Early Intervention and a neurologist and lots of kind words and sent us on our way.
Thus began the months-long process of diagnosing and finding therapies for our odd Boog. The neurologist ended up being a rather pompous, though amusing, man who did nothing but stare at my chest throughout the whole appointment and then suggest more expensive genetic testing. We were eventually able to discover that this testing would really tell us nothing useful, and we declined to spend $6000 to satisfy the pompous boob-gazer's curiosity.
Our Early Intervention coordinator, on the other hand, proved to be a warm and kind, if slightly absent-minded, fairy godmother-type. If I based a fictional character on her, she would be baking cookies all the time and constantly losing her spectacles. She was able to connect us with the most well-respected child behavioral psychologist in Tennessee, as well as set us up with services with the Boog's own personal Mary Poppins AKA his first EI teacher, and after a long, bitter struggle with some very crabbypants administrator types, speech therapy, occupational therapy, and physical therapy at the Children's Hospital Rehab Center.
The behavioral psychologist we saw is a renowned expert on autism. He also, I was surprised to discover, has very long hair, and touts the benefits of organic food, veganism, and filtered water (my kind of guy!). We saw him basically to confirm what in our minds we thought we already knew: that the Boog was autistic. However, after two meetings and extensive testing, he had something surprising to tell us: he didn't think the Boog was autistic.
It is difficult to imagine the ridiculous disappointment I felt at learning my son was not autistic unless you have yourself screwed up your courage and done hours of research on a certain condition only to discover that all that energy could have been used to...well...probably play the Sims and make up cookie recipes in my case.
Anyway...after a few seconds of stunned silence, I said, "Well...what do you think is going on with him then?"
The kind doctor then explained that while at first glance many of the Boog's symptoms mimicked autistic symptoms, he didn't actually fit most of the classic patterns. For example, the Boog, while non-verbal, was very social. He frequently smiled, laughed, looked people in the face, responded to language in a number of non-verbal ways, and just generally seemed to be present and engaging with others. He also pointed out that many of Ry's odd visual behaviors could very well be caused by his nystagmus, a theory which our opthalmologist later backed up. So, the Boog stared at bright lights because they were easy to see and focus on when his little eyes were dancing back and forth.
He then said, "There is definitely something going on and it has sensory and motor components." He suggested apraxias as possibilities, and then asked us about the Boog's sensory reactions.
Immediately, a scene popped into my head.
When we got our Christmas tree in 2009, the Boog touched it and began gagging. I thought this was odd and slightly amusing (mean mommy) and mentioned it to my other mommy friends, but no one else had a child who had reacted that way to an object. Every time the Boog touched the tree, he would gag.
I mentioned this to the psychologist and, in that cliched lightbulb-over-the-head way, he said, "I would have him evaluated for SPD!" This wasn't the first time I'd heard of SPD (sensory processing disorder). One of the TEIS evaluators had mentioned it as well, but in passing.
I went home, did some research and HOLY COW! Every single piece of literature I could lay my hands on on SPD read like it was written about my child. He had trouble with feeding - certain textures and temperatures bothered him to the point of gagging and vomiting. He gagged when he touched certain textures. He sought certain kinds of movement, sounds, sights and avoided others. Eventually, this diagnosis was confirmed by his OT.
So, that's it: our journey to the SPD diagnosis. The doctors and therapists warn us that there is a possibility there are more conditions co-occurring with the SPD. In fact, the Boog is going to be tested for auditory neuropathy in a few weeks. However, for now, therapy tailored towards managing SPD is working wonders for our strange little Boog!
But we're thinking about foregoing the Christmas tree this year ;).