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Tuesday, July 15, 2008

Understanding Lady Muck

In some ways I still feel really new at parenting. I guess that is fair to say when your kid is only 5 and a three quarters (have to give her credit for all time here) and you have spent the first 4.5 months in a NICU and then 1 to 2 days average per week in the hospital for the next few years. Not that I am complaining - but if feels like lost time in terms of becoming savvy as a parent. And savvy I must get as Ellie is getting very sophisticated very quickly.

The whole incident with her giving me the cold shoulder when I came home after a week of work in the UK is a great example of how I just didn't get it. Thanks to readers of this blog I am now clued in to the emotional blackmail tactics that my five year old, brain damaged or no, can wage upon me. And sheesh - I am really blown away by it. It took me a couple of days to really get a handle on that, which feels really lame in terms of being a savvy parent. Don't get me wrong, it's an absolute great problem to have - the fact that she would do that - the fact that she is able to wage emotional blackmail. The part of me that is always routing for her unreservedly is shouting, "YOU GO GIRL!!!"

However the bottom line is: Ellie is, once again, outpacing me.

I have spent so much time getting to know her subtle ways of communicating that the more obtuse ways are throwing me. I know that sounds weird but it's true. I have spent so much time trying to quickly understand her multiple disabilities including nutritional, neurological, gastronomical needs in order to make life changing/saving decisions for her and very little time reading about what typical kids do.

Before she was born I read the what to expect books and Dr. Sears Baby Book became seminal for me. I read all about typical development. But then after the, you know the story, I threw myself into understanding non-typical development including things like IVH, PVL, Prematurity, Cerebral Palsy, Hydrocephalus, Reflux, Sensory Integration, Neuro Respiratory Therapy, PT, OT, Sign Language, Total Communication and on and on. I didn't learn about any of it because I wanted to, but because I had too. I will never forget our first meeting with the team of Doctors who treated Ellie in the NICU. I remember sitting there being asked to make decisions about her life and not understanding what the heck they were talking about. All the terms were really scary like shunts and NEC and other huge scary cliffs that preemie babies must hurtle. So Dave and I got on line, bought text books, asked each question three times to three different people (that is a really good one if you are currently in the NICU with your baby - guaranteed to get you three different answers).

When Ellie was 2 and a half I stopped reading about what she "should" be doing according to the experts on typical childhood development. Frankly it was just too painful. She wasn't sitting on her own and there are dire predictions about that fact linked to walking which now I realize are totally fallible. I gave away the what to expect books and even the Dr. Sears book to first time expecting friends. I just couldn't bear to read them and didn't want to get depressed. I preferred to take Ellie where she was and go from there with all the hope and determination in the world. I didn't need books around reminding me of where she should be especially because those books never gave her any credit or consideration from whence she came! I know that other moms of kids who were preemies and kids who had rough starts and have CP and multiple disabilities will totally relate to that last sentence. Right? It's all relative!

And for all of that, I didn't get it that Ellie's way of telling me she did not like it that I was gone for 7 days was giving me the cold shoulder. Sigh. My own stupidity is just astonishing sometimes! Total Homer Simpson moment - Doh!

No resting on the ole and getting "oler" haunches here. Now it's time to learn about typical 5 year old behavior (4 year old, 6 year old, then 7 year old, you get the picture). And now that I feel less scared about who she is becoming/where she is headed I think I might be able to read those "other" books about those "other" kids and not feel bad. In fact I realize there is allot to learn there to help me understand Ellie. As I write that it's just amazing how full circle I have come with that - not in a pat myself on the back kind of way - but in a - gee never thought I'd be hearing myself saying that kind of way. One of those moments when I have to pause and take note.

It's a good problem to have, in fact a problem that considering the way things went down I didn't know if I would ever have. I'm grateful. I would be grateful, as well, to learn the titles and authors of any books or websites you have found useful in deciphering the emotional language of young children.