Jenny has demonstrated more improvments with producing voluntary sounds. She also is getting better at using a key board. She reads e-mail (if it is in a font large enough to see), but has only writen a couple. She wrote an e-mail to her mom two days ago that took 2 hours. It was less than a typical paragraph, but difficult as could be. She cried and wailed out of frustration but refused to quit until she was done. I have decided that we have not done as much as we use to do, so Jenny is aware that things will be stepping up. She agrees that she has not improved as much since we have been getting out more, and therfore not been home to do vigorous therapy. I am trying to include movement/therapy in all activites of her day.
Right now, Jenny is sitting next to me and working on her augmentative “speaking keyboard”. She did not know what to say, so I told her to write all the things she wanted to tell me, but never was able to. That was a huge mistake on my part. I realized I opened the flood gate of complaints that no man should ever open for his wife. “The tilt table is boring.” “The kids watch too much tv.” “I hate the therapy ball because it makes me drool and the spit gets on my hand.” It goes on from here for quite a while. She gets a kick out of watching me cringe as she hits the “SPEAK” button, and then laughs as I muster the strength to say, “good job Honey, keep typing.”
We did have another tube party to celebrate getting her last tube out. Like the trache party (where everyone had to wear a trache except Jenny) everyone had to wear tubes, except Jenny. It was a huge morale booster. She has been feeling like a burden to the family and a failure as a mom. After the party, she has been more positive about her contributions. She wants to be active in discipline, affection, and day-to-day raising of the kids. Little does she know (or want to realize), but she plays a huge role. The kids fight to see who sits next to her at dinner. We now have a schedule. Anytime she is on the ground doing therapy, she is attacked by a kid with love and hugs. If the kids are misbehaving, one ring of her bell can bring the kids to a stop more than what I do. They start defending or bring there conflcits to her right away, before and/or after she stops them with the magic bell. Even though I am a child therapist- she has taught and reinforced to me that parents over lecture their kids and there is sometimes power in her silence that allows the kids to work out their own problems (with occassional redirects by the bell). If she is not actively participating in the role of a mom, than I don’t know who is. Because of the great mom that she has always been, she does not feel like she does enough- but she never thought she ever did enough.