Friday, February 29, 2008


I read a great FAQ at, so with many thanks to the author for posting the info about her kiddo, I am going to do the same...after all, so many of us our looking to find out, "Is there someone else like my child? What works and what doesn't?" I've so appreciated the bread crumbs, I am happy to leave a trail, too, if it helps.

What is the rooster's diagnosis?
Check back late March and maybe we'll know something, but if you want me to armchair quarterback, I'd say the rooster has pervasive developmental delay. Or semantic pragmatic language disorder. Or kind of a mix, with a scoop of ADD thrown in maybe. Hey, my degree is in journalism -- you better wait until late March.

How did you know something was wrong?
Gut. Things just never got any easier, and the reasons we gave ourselves (he's a newborn, he has colic, he's had so many colds, he has the terrible twos early, now he's two, it's really the terrible threes) stopped being good enough when we really watched him with other kids his own age. The rooster was born hard. He took 32 hours of labor, four of pushing, and two vacuum assists. The nurses came running with our boy a few hours later to let us know he was keeping up all the other babies and pounding down formula like a frat boy at a keg party, so they were kicking him out. (I went on to breastfeed him for six months, the formula was because neither of us had had any nutrition in over 40 hours so they felt he needed some.) The rooster has never slept well, has never had good muscle tone, and has suffered a slew of issues his doctors refer to as a "constellation." Among them he struggled with torticollis (head tilt), strabismus (lazy eye), hypotonia (weak muscles), chronic upper respiratory problems (vast quantities of boogers, and a cough that made doctors suspect, before ruling out, cystic fibrosis). We visit the doctor so much they ought to give us our own parking space. Also, the rooster has been delayed - though often not by much - with milestones, he shows some very mild sensory integration issues (do NOT take this kid to a barber unless you know your wrestling holds) and his language is, to be purely scientific about the whole thing, WEIRD. Call him on the phone and try to chat with him if you think you can come up with a better description.

Do you think vaccines caused the rooster's problems? I am going with no. Can't handle the regret of anything else. I reserve the right to revisit this, though because I'm woefully underinformed.

What interventions have you implemented? When he was tiny, we got him OT and PT for his torticollis and hypotonia. That helped with sensory stuff too. He responded well. He's had nebulizers for the respiratory stuff and more drugs than Robert Downey Jr., but he still always seems sick, and the doctors have run out of ideas (except for one, which is a whole other blog I need to save for later). He had eye surgery in January, and for the first time in his LIFE, he holds his head straight up. The IEP was today, and they offered lots of choices, all crappy unless I quit my job and drive him hither and yon, so we're in "recess" while we figure out our plan.

Is anyone else in your family like the rooster? No. I don't know of any neurological issues in my family or my husband's. But I didn't really know my father or any of his family, and my mom only describes them as "impossible" so who knows. Really, it would shock me if anyone else seemed much like the rooster. We have met with zillions of "ists" and I always ask them, and his teachers, "Have you ever known anyone like our rooster?" After the awkward pause, they usually say something along these lines: "Not exactly. Well, no. Not really. I mean... but... no."

You work at a great school. Can't they help?
Yes, and no. They help a lot. My colleagues are my support system. They love our rooster. They just can't figure out how to teach him successfully. As the school district folks put it at our IEP meeting, "He is not functioning in the classroom. His severe pragmatic issues especially stand in the way." In other words, rooster does not sing along to the songs, he needs a lap to sit on if he has any chance of making it through any amount of circle time, no way is he going to follow verbal directions, if you let him out of your site he might do something unsafe (like climb a ladder belonging to the maintenance crew), and the kids have no idea what to make of his attempts at conversation. That's a lot for a mainstream school to handle, even for a faculty child.

Is there any good news?
Well, you know I'm not a fan of "bright sidedness" but I tell you emphatically there is good news about our boy. He is gorgeous, in my unbiased and humble opinion, with a smile that makes you want to giggle like Elmo. Give him a book and he can sit for up to 25 happy minutes, making up the story by himself if you won't read it to him. Many times when we despair that he simply cannot learn to do something no matter how much we practice (like ask or answer a Wh question), a week later he proves us wrong. He loves us and he says so in words, in bear hugs, in sloppy drooly kisses, and with squeals of delight. He's finally starting to get along with Peaches, and sometimes they play together happily before the crying starts. Though I fret a lot about his behavior, when you take him to a place with loud upbeat music activity, such as the drum circle we attend, he gets all blissed out, and he behaves beautifully. For about 45 minutes. I'll take it. I live for those times - for his rare successful outings, his relaxation, his ease. There are no "normal" days for us -- each one is a surprising new challenge -- but I treasure them all, and despite blog evidence to the contrary, I am very grateful - because whoever he is, whatever he's "got," in the end he is my precious rooster.

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