Hello out there after a little posting break. A break that did not really feel like a break and was not intended to be a break per se. Per se – that is a funny word – no? It’s from the Latin and means intrinsic. You can look it up here. Sometimes I use words completely appropriately with no consciousness regarding what they really mean. They just sound right and work for what I intend to communicate. Does that ever happen to you or am I just some freak of nature? Though if you answer yes to both you would not be the first…Anyway back to the point. The unintended part is simply because we have been balls to the wall dealing with a ton of tedious yet critical things to do since we got home from our Thanksgiving trip. It’s my karma for getting pissed off at the lame ass mothers ignoring their kids whilst shopping. As you can see I have learned nothing.
It’s great getting away from home and the enormous TO DO list that shouts through the ethers at me there. Our latest get-away was to the country to spend Thanksgiving with friends. All emotional yucky family quagmire completely sidestepped in favor of the sweetness and light of hanging out with old friends, at least from my perspective. I don’t think that was how Ellie felt.
My dear friends, whom I have not celebrated the holiday with since the birth of their first child eight years ago, now have three children. They are all great kids and all really sweet with Ellie. There were a lot of people around us for the couple of days we were there and from Ellie’s perspective a lot of competition for Mama’s attention. She kept a trained eye on her toys and the other kids especially when they were interacting with Mama. She also started vocalizing way more than she ever has at home with me. I think the picture speaks a thousand words. Notice how her mouth is open and she is working hard to be heard over the person who had the audacity to speak to her Mama.
I have noticed she “talks” more to Dave than me. I think it’s because up until this weekend, I had her body language and many of the sounds she makes worked out. To others watching Ellie and my interactions it probably looks like I am a bit psychic the way I know what she wants just by looking at her. Being trained to watch the body language of executives in order to keep strategic planning sessions on track, makes understanding Ellie's body language easy. Let's face it, her hidden agendas are way more genuine. Though, I must say her needs are becoming increasingly complex. Lately she will often reach for the pen of her Magna Doodle and put it in my hand and want me to write what she wants. I think Ellie might think I am psychic, just like many kids think their parents are omnipresent and omniscient. I think I will not so easily dispel this notion for her as it could come in handy in the teen years.
With all the festivities and visitors at my friend’s the environment was filled with the cheerful sounds of laughter and talking and cooking. To get heard above what she may have experieinced as a bit of a din, Ellie quadrupled the volume and quantity of her vocalizations after just a few hours of being there. It was great in the sense that she was expressing herself. One of her weakest areas is in expressive language and it’s probably partially my fault because of the pseudo psychic thing I mentioned above. During the Thanksgiving meal, however, she was vocalizing more and more and insisting on being heard. I wonder if she was around other kids more often if she would be speaking. Many of these new and loud vocalizations sounded suspiciously like whining and were putting my overloaded host over the edge to the point where he had to take a nap. I felt kind of bad about that, though he was really gracious about it and assured me it was not because of Ellie's new found voice.
What I really felt bad about was the fact that I didn’t know what the heck she was saying. At least she was vocalizing about lots of something loudly. All mothers of preemies can appreciate the lung capacity she has gained in order to do this. I attribute that to the many thousands of hours we have spent doing the Scotson Technique Neuro Respiratory Therapy with her. At Advance they never tell you about any side effects – which this new loud vocalizing seems to be. When Ellie was in the NICU and surviving day after miraculous day we used to say, “Give us your worst!” I think she is holding us to that.
I try to be careful not to reprimand her for whining when she might not be. I am reminded of our friend Francesca and her mother. Francesca has CP and is a couple of years older than Ellie. She has made amazing progress. Her mother said to her one day, “Francesca, stop whining!” Francesca replied, “Mommy, I wasn’t whining, I was singing.” How bad did her mother feel?! Yikes. Is that what it’s like for Ellie?
I think about that all the time when Ellie is vocalizing. I take each utterance as a communication though sometimes I do lose it and say, "Ellie enough!" That does get her attention and gives me just about 10 seconds down time. I don't do it too often though for fear that I will send her the wrong message. I want her to know I support her attempts to talk and communicate - Express Away! I have noticed when I answer her correctly she gets really excited and when I try to converse with her she gets more susinct in her attempts to talk.
I imagine that being mute is incredibly isolating. People make assumptions all the time about Ellie because she can't speak. They think she is stupid or talk over her and ignore her. Right from the beginning even when she was unconscious we would tell her what was happening to her and try to explain. We consciously decided to take it for granted that she was in there and conscious and on some important level needed and wanted to know what the heck was going on around her that she had no control over. If you are mute, it's very difficult to get control. Even with this attitude at times I have to consciously remind myself that she is not just babbling or whining but trying to make sense to me. Where do typical whining episodes of a small child fit in to that? I yiyiyi
It's clear to me that I need to crack the code. I need Ellie's Rosetta Stone. If anyone knows where I can get it, do let me know.
