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Wednesday, July 30, 2008

3 Beautiful Things All About Ellie - of course

1. I accidentally tickled Ellie behind the knee when removing some adhesive from the latest and last (for now) round of casting. She laughed and then put her hand on my ribs and tickled me back with a big smile on her face. How did she learn that? Now one of her favorite things to do is tickle Mama and she does it just when I am most in need of a laugh.

2. Ellie especially likes the blanket on the couch. It's purple and cool to the touch as it's smooth cotton. She insists on having it over her when she falls asleep on us even if it's hot out!

3. Ellie's big hiccuppy belly laugh when the duck finishes baby van goat's painting.

Saturday, July 19, 2008

Disability Blog Carnival #41: Death Becomes Her

Excellent carnival by Retired Waif. (apologies for lameness in not posting this on the 14th!)
Check it out!

Where's Mama's Ellie?!

Botox Day, keeping spirits high before the procedure. Big girl watching her videos in the car.
At the fairy party in May, checking out the fairy flower crown making station with Dada.

Notice the puckered lips? Hungry girl biding her time with the Wiggles before dinner!

Thursday, July 17, 2008

Parenting a Nonverbal Child

Sarai asked me some interesting questions in her comment on my blog, "Understanding Lady Muck". They were such good questions I wanted to answer them with a whole post.

Here is what she asked:

"Your blog makes me think a lot about how difficult it would be to parent when you have a aware but non-verbal child, especially your first child, so you have no point of reference. How much I take for granted, not just the obvious things!!

I do wonder how Ellie's awareness but not able to verbalize influences everything. So she has "typical" (there's that word again) five year old feelings, but not typical ways of being able to express herself. How DOES she express her feelings? Do you have a word board for "happy" "surprised" "angry" "frustrated"? Do you just go by facial expressions, and suggest the name of the feelings for her? Does she use sign language to tell you? Sorry for questions and not suggestions."

These are well timed questions as I have been beefing up my communication skills because of all the work I have been getting. One of the resources I have been using is the Toastmasters International website.

One of the things they stress in their online literature is how important body language is in communication. In some communication theory, the heuristic is that there is the "message" which is the words you actually say. And then there is the meta message which conveys your true intent or tone and that is all done in the body language including the pitch and volume of your voice as well as your posture, facial features, direction the eyes are looking. There is a ton of research on this. Malcolm Gladwell talks about some very, very interesting aspects of this in his book Blink, which I highly recommend.

When I teach executives to be mindful of their meta messages as well as their words I tell them that the meta message accounts for 70% of what we communicate and the words a mere 30%. Anyone who is married knows this intrinsically. You don't even have to hear what your spouse is saying when their body language tells the tale perfectly.

OK - I am actually going to respond to Sarai's comment now that I have shared with you all the things Sarai's comment made me think of.

First I would like to tell you Sarai that you have hit the nail on the head with your remark about Ellie being our first child and having no point of reference. This is sometimes good and sometimes bad. The good is, I don't know any different. Sure I see the differences when I go to the pool and the other moms are chatting away while their 5 year-olds are running around like wild things. But at least that reality is not in my face every day. Ellie is our normal. The bad side is - I worry that, because I have not parented a typically developing child, I don't expect enough of Ellie. I may not push her hard enough. I may be missing things altogether. These thoughts scare me on a regular basis.

You ask how does Ellie express her feelings? That one made me laugh - if you could only meet Ellie (and keeping in mind what I wrote about the message and the meta message) you would have no doubt what she is feeling most of the time - at least on the big things. Ellie is actually really good at getting what she wants across. Her body language is really, really well developed. That said, with the subtler things it's a bit harder for others to read her and when she meets someone new she clams up and takes away all data that might be there when she is feeling safe.

My friend Rick always accuses me of reading Ellie's mind but the truth is I know her cues and she knows I know them. We communicate through a series of looks she gives me along with what would sound like little consonant-less words that have very clear meaning for me when combined with a look and an arm or a whole body lean toward what she wants.

We did use the Mayer-Johnson picture symbols when I first began teaching her the names of emotions. We used the picture symbols along with signs and words spoken and written and exaggerated facial expressions. I would drill her using pictures of babies with different emotions until she had them down. And then when she was having a particular emotion I would say, "Oh look Ellie, that's your happy face!" And I would mimic her happy face and also have her look in the mirror.

Once she learns things we can then move to asking her yes or no questions having her pick our hands (one signing yes and one signing no). Are you sad, yes or no? Are you cold (said signing the word cooooollllldd, yes or no (signing the word yes with the left hand and no with the right hand and bringing both hands very close to her so it's easy for her to chose which one she is, yes cold or no, not cold. Recently she has been able to make a fist and she will do so to sign yes. She loves doing it too - so awesome.

We also use the magnadoodle quite heavily to write down choices for her to pick from. We have three around at all times and often use all in tandem to get to the deeper meaning especially around making more complex choices. For example, she wants a toy but also wants to sing a particular song on that toy with mama or dada and fast or slow. This is a four layer choice sequence which is typical of our day.

That said when she is sitting on my lap we converse using spoken words on my part and some signs because those are harder to do when I am holding her. She will grab my hands meaning she wants to make a choice. Often we just interact like that if the magnadoodle is out of reach or we forget we need it. We joke using musical riffs. Sung notes that were originally part of a toy that became jokes in our exaggeration of them. She sings when she is falling asleep and has recently taken to using her voice to mimic these little musical riffs of 6 to 7 notes. I sing to her too to help her conquer scary things like brushing her teeth or walking in her Pony. Music goes a loooooooong way with Ellie. I have to be part mama, part Pied Piper.

Lately, she is getting really sophisticated in her expressed communications. Now she will pick up the pen of her magnadoodle and want me to write what she is thinking. This is hard because I can only guess. Luckily her school speech therapist is onto this and we are going to start the process of getting Ellie hooked up with some sort of voice output system.

When we are at home, communicating with Ellie is made easier because it's all in context. The context is familiar to the three of us and our conversations revolve around her toys, her day, her meals, games we play, songs we sing, etc. That said, now that Ellie is 5, it is increasingly challenging for us to expand her world in the ways that she would chose on her own without our help. It's an uphill battle in that I am always a step behind where she is. She is the leader here and Dave and I try to keep up.

As you can see, our day with her is very intense in that when she is awake, in order for her to play or do anything we have to facilitate the communication in the ways described above.

Overall Dave and Ellie and I have our unique ways of communicating like any family. Is it any harder than communicating with a child who can talk - probably. With some ingenuity and in the last year high level help from her school Ellie has taken her communication up several notches. As parents our personal mission is to bring the world to her until she can go get it herself. And so it is.

I hope this answers your excellent questions Sarai.

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.

Sunday, July 13, 2008

Fair Play to Her

OK - so am feeling better since Friday when I returned to my cool as a cucumber Ellie. In fairness she was really tired and in the middle of her dinner/video/go all around the house routine (don't ask) when I returned. But on Saturday, all she wanted was mama. I was there when she woke up because I am still on UK time and she was delighted. When Dave would pick her up she would want to come to me. She wanted to play every mama and Ellie activity and each one only once and for a shortened time. It was as if she wanted a little taste of all the little jokes and games, songs, and books we do together because she had not had them for one week. So, especially in light of Sarai's comment on my last post, I can see she did miss me in her own way and that is fine.

Once again, Parenting, i.e. the ultimate exercise in getting one's head out of their own dark places and seeing someone else as they are, not as I would be. Lovely exercise really, ongoing as it is and as hard as it is a times.... ;-)

Saturday, July 12, 2008

Back Home

Thanks to everyone who commented on the last post. Your comments have now been published. I was in the UK all week for work and found that my blackberry would not let me publish your comments and was too cheap to hop on an Internet cafe computer at 1 pound per 10 minutes which is roughly $2 for 10 minutes.

Pictures to follow. Dave and Ellie got on so well without me was a bit disconcerting... ;-)

This is one of the ways I definitely notice that my kid is NOT typical. When I can leave for 7 days and not have them really show any emotion that I am leaving, am gone and then am back. I would ask to talk to Ellie on the phone and she would intone messages to me and that was great. But there was no disruption to her that was really visible (and thanks to Dave who did a great job looking after her on his own even through the third set of casts that she got on Monday). So her calmness speaks to that and that is a good thing don't get me wrong. But emotionally for me there is a but...

I guess that I am assuming that a typical 5 year old might be a bit more vocal and obvious about the fact that mama is not around and that their emotions would be high at the actual point of departure and the point of return. A typical 5 year old would be able to talk to me over the phone. At 5 almost 6 if your kid is typical you get to have conversations with them. But there was none of that. And you know what, that hurt. Not that I want her to be sad, but I would like to be a blip on the radar - even a tiny one. I would have liked her to at least be asking Dave for mama or for her to want me in particular when I got back. But no.The moment I walked in she indicated that she wanted me to help her change her video. At first I thought she was requesting to sit on my lap (which made me feel like she did miss me) and then realized that she was pointing to the magna doodle on the chair that had video choices on it.... sigh.

It's the little things sometimes that are the most painful. And my heart is a bit crushed to not even be a blip on her radar because the entire time I was away from them, though I got on with things, it was really hard. I really missed them both. Mama's can have needs too though this whole thing with Ellie has been an exercise in putting my own needs aside. I find the other-centeredness of parenting to be really freeing though I am not totally without ego or need.

Is this why people in middle age become so decrepit? They are just valued for their workhorse capacities and not much more? Versus the petulance of one's 20's where beauty and love are the main themes? If so, I can't wait until I am 80.