First Big Project

When I started being a stay at home mom I said I would take a month vacation… guess what? Times up!! Once I got my routine organized I began thinking about what I should do first and came up with 4 projects that really excite me, but my first priority was to schedule every possible future appointment for Natalia. Being used to track people down on the phone, but that only took 2 days of phone calls. So now what?

My second main concern for Natalia is her communication skills (in case you’re wondering her borderline Prolonged QT Syndrome is the first). Natalia is around the 3 to 4 month level in her communication skills, she coos and sometimes screams vowel sounds to get her point across. She still uses primarily the aaaaa’s, no consonants yet. Although most of the time I understand her queues, I can tell there is a level of frustration when there is something I don’t get right away. She’s started to pull her hair softly when this happens, or gets very worked up. Now, there are a few reasons for her to be at the 3 to 4 month stage, one is that she has some hearing impairment. To address this we’re waiting for her tubes to be placed in her ears at the end of March and after that she can have the much waited for BER & ASSR. All this is needed to proceed with hearing aids that will ultimately help her hear well.

Now, I’m not fooling myself, I know all too well that this is no guarantee that Natalia will magically start talking when all this is taken care of since one of the characteristics of Cornelia de Lange syndrome is the absence of words to communicate. But she will have a better chance at understanding her surroundings and I’m sure that will make a huge difference. Fortunately there are other options to help our kids communicate, like sign language. So there is my first big project: I have enrolled in a college course: American Sign Language for Infants and Toddlers, I start the April 1st!!! It’s a 2 hour once a week 3 month course focused on signs that target communication with infants and toddlers with or without hearing and speech impairment. I’m very excited!! It’s been a while since I finished my Master’s so I think I’m quite rusty in the study department. But the level of motivation I feel is almost overwhelming. I can’t wait to start!