Thursday, October 22, 2009

Little Monkey's diagnosis

Remember Little Monkey? The sweet little angel baby with the skull problem who, 30 months ago we thought was going to be the big medical challenge for our family? He's almost 2 now, and still a sweet little love.

His beautiful wispy curls hide the scar very well, and he's fiercely happy, which is great. He climbs well, can carry a ball upstairs (in order to throw it down, chase it, and bring it back up) and signs for "milk," "more" and "food." I couldn't have asked for a more easy-going and laid-back kid.

Which, it turns out, is sort of a problem. On Tuesday, he and I trekked out to SW Portland for his evaluation by an occupational therapist. I know you're all wondering what could possibly be wrong with him, right?

Well, to start out, he doesn't talk, not really. When we first moved to Portland, he had NO words, no signs, and could communicate at all. Now he has "che-che" (leche, or "milk" in Spanish), "up!" and "Papa!" that actually mean something. He parrots a little now, too, which is awesome (before he would just sit in contented silence). Still, at 23 months of age, he's speech delayed.

We're still trying to schedule an evaluation with a speech pathologist, but the OT planned to check on the speech thing.

He's also not eating, like at all. He still guzzles Pedia-sure like he's afraid we're going to run out of it. For days at a time he'll refuse any solids, and then he'll be willing to eat some banana or bread (crackers, bread, chex, cheerios). However, he doesn't chew, he only sucks, so if he gets too much in his mouth at once, he gags and either throws up or aspirates. Apparently, he doesn't chew because his jaw-muscles aren't strong enough. He can bite you, and hard, but prolonged chewing is hard, and hurts, so he doesn't do it. This may have something to do with his lack of speech as well, I'd guess. We were given a little tube-toy to try and teach him to chew, and encouraged to work on it with him, since the very concept seems to elude him.

Then, as the lady was looking through her list, she realized that he has a few indicators of an autism spectrum disorder (mainly his fascination with ceiling fans/wheels and his silence). The boy does LOVE things that spin, and he is super quiet, so I had known they would be looking for this. Still, when the therapist was showing him one of those hit-the-ball-with-a-hammer toys, he copied her on the first try and then looked up at her to make sure he'd done it right, inquisition all over his face.

"Well, he's NOT autistic," she exclaimed, laughing. "Good," I thought. "So what is he?"

Turns out, the answer is "complacent." I mean, he is delayed, but that's sort of expected after his surgeries, but he should be catching up. The reason he isn't? It's hard, requires a lot of effort, and he's quite happy how he is, thank you very much. "Do you know any second-born boys?" she asked me, and I laughed, thinking of Needlenoggin and Tuffy. "Do you see a difference between them and their older siblings, especially sisters?" Again, I laughed. Tuffy's sister is very driven and accomplished, with a doctorate degree and she's going to law school. While not quite as impressive, *I* am Needlenoggin's sister, and have 2 kids, work, write, do art, am a wife and a full-time grad student. I went to Berkeley.

"Yeah, us older girls are a bit more driven," I admitted. She went on to explain that he chooses the path of least resistance (like spinning toys or bouncing a ball) because he can't make a mistake with them, and they make him happy. Stacking, drawing, whatever else, all take more effort, and he can fail at them, so he chooses things he's comfortable with instead.

"He'll work if there's something he really wants" she went on, which explains how and why he gets all worked up when I won't let him open or shut a door he wants to play with, but he works for happiness; either for him or for Tuffy and I. He'll do his "besos" trick (kissing us) because we laugh and squeal and smile and say "good job", and if we're happy, he's happy. So, we have to make sure he knows how happy we are when he stacks blocks, learns a new word or sign, or does something he's not comfortable with.

After discussing how well this complacency was going to work in school and being told he'll probably need external reinforcement, like praise and perks when he does well to motivate him, the OT said something really important:

"Crazy driven people, as adults, contribute a lot to society...medicine, law, what have you. In order to live whole and complete lives, to be truly fulfilled and happy, they need to LEARN to relax, and let go of perfectionism. Easygoing people on the other hand, are happier, but can end up lazy if they don't learn to work. Your son NEEDS to learn to chew, eat, talk, etc, but he'll do it if it makes him happy, or you or your husband or your daughter happy. So make it a game, and show him that doing these things makes life better for him."

I liked that, and we scheduled my boy for every week for the next couple months. He'll be going in for a speech eval as well, probably in November, and then we came home and packed up for his neurosurgical/plastic surgery/eye appointment on Thursday.

Sitting at the dinner table, I was telling Tuffy all about the chewing games we're supposed to work on, and how worried I am. He reached into a box of crackers, stuck one half of a Wheat Thin into Little Monkey's mouth, and chucked him under the chin. "Bite," he said as the cracker snapped in half. A few more times, and my son will now bite crackers in half. In two hours, Tuffy taught him what biting was, if not that he should actually chew his food! Progress, right?

3 comments:

flip flops on lex said...

Yay for "Little Monkey"! The comments on sibling relationships/first born girls were very interesting. I am a first-born girl and sister to a second-born son. Those traits were spot on with us. Hope you and your family are doing well and thanks for sharing your sweet son. -Marie

Anonymous said...

I'm a Northern CA momma who has been following your blog for a while. So happy to see you getting settled in your new home. I'm also a special education teacher and have to tell you to do a little research on "Sensory Integration Disorder". Many of the signs that your son is exhibiting can be indicative of this. It is on the autism spectrum and can range from mild (speech delay, eating issues, etc.) all having to do with your son's senses to very severe.
My son has it and did not speak full sentences until three and had some other issues. If you live near a bookstore, pick up or browse a copy of "Sensational Child". My son spent about 18 months receiving OT and you wouldn't even notice his issues now at 9. I wish someone had told me about SID so I could have addressed it sooner for my own child.

You can also google "out of synch" child for some descriptions.

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