Monday, March 28, 2011


Our little guy is constantly amazing us with what he comes up with. A few weeks ago his OT brought a scooter to the house, the type from elementary gym where you either sit or lay on it and use your hands to maneuver yourself, hoping Rhys would lay on his belly and push/pull himself around on it. Well, he was more interested in using it as an obstacle to climb over, than figuring out how to move. Yesterday he was laying on it and suddenly starting pushing himself around on a circle. Cody and I walked into the kitchen to eat dinner and here he comes! While on his stomach he followed us by pulling himself. It was really remarkable.

We've also been working for literally months trying to get Rhys to scribble with colors, but he's always more interested in tearing paper than drawing. He got a magnadoodle for Christmas so I hoped that would help, but he didn't really care for that either. So imagine my surprise when he recently started writing on the magnadoodle, knowing which way to hold the pen. Not only that, but he started erasing it! This may not seem like such a big deal, but for Rhys it is. Cognitively Rhys is much more advanced than what his communication/motor skills demonstrate, so it's very exciting for us to see him figure out how to do these seemingly simple things.

On a different note, I think we're seeing some of the negative side effects from Rhys's baclofen. We were very positive the first few weeks because we didn't see any of the decreased appetite, moodiness or sleepiness we were warned about. So we really thought we were in the clear. We increase the dose by one-half a pill per week, and though we aren't positive yet we're pretty sure that the most recent increase in his medicine has made him a total fuss bucket. I am talking extreme irritability for no reason whatsoever. I called his doctor to discuss it with her and we are now going to decrease his dose back to where it was prior to the bad behavior. If he goes back to "normal" we know it is the baclofen. If it doesn't change anything we know we are in trouble! No seriously, it will not be good if he stays this cranky so we are really hoping it is the baclofen because dealing with his behavior on a regular basis would be miserable for the whole household. Once the dose is decreased (and hopefully the screaming stops) we will then determine if the response from the medicine is adequate enough to help Rhys, or if we need to switch him to a different medicine.

Regardless of what happens with the baclofen we are requesting a behavior consult for Rhys via ECI. Why? Because Rhys has always had a certain level of whining and acting out (though nothing compared to what we've seen the last week or two) due to his frustration associated with the delayed motor/communication, and we've always struggled with a way to appropriately deal with it. It is very minor all things considered, but since Rhys doesn't learn skills at the same pace as his typical counterpart he still hangs on to this whining/throwing/screaming as a way of expressing himself. He is very opinionated despite not speaking clearly, and he'll definitely let you know what he likes and doesn't like. We've worried about the transition when he starts school next fall, simply because we don't want him whining the whole day when he has to do things he doesn't care to do. Hopefully this behavior consult will give me and Cody some instruction on how to respond correctly and not reinforce Rhys's bad behavior.

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