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Thursday, February 12, 2009

Glasses, Development, No more Cisipride, and "I love you"

It seems since graduate school, which I entered in 1997, life has been a constant game of catch up. There have been virtually NO moments, since 1997, when I have been on top of my to do list. This has got to be that middle life stuff I so despised in my parents. They were just all about work all the time and stressed out.  I can remember completing a task that was the last task and I was done.  My day was truly free. That was in 1996. I remember it was a sunny day in LA and I went for a run on the beach and then meandered to Trader Joe's and went to bed early. I can't even run any more due to my crappy knees.  


Today I took Ellie, finally, to her optometrist. He's great. He's actually the head of Optometry for Children's Hospital Boston. He probably thinks I  am an idiot though. I took her because for the last three months, Ellie has been throwing off her glasses. Whipping them off seconds after they go on. And as I understood it, she needs her glasses to help her eyes focus due to the CP. We were there from 10am until 12:15pm. Ellie patiently looked at cards and pointed to the little stripy boxes getting more and more obscure. She endured the drops that make your eyes dilate.  At the end, Dr. Hunter told me that her vision has not changed and that the power of her lenses need not change either. It came down to three explanations:

1. the fit was too tight
2. her ability to focus has gotten better so she doesn't need them like she did
3.  she's getting attitude.  

On our way out we stopped to visit the guy who sells the frames and he gave her glasses a work up. Fixed the little flaps that sit on the top of her nose, widened the side bits so that they didn't sit as tight, tightened and glued down the screws that hold in the lenses. He was great and so patient. Ellie was really tired at this point but has not thrown off her glasses since. So it was the fit. Dah!  Dave and Ellie and I all have glasses now but we are all new at this. I am glad it was just the fit and we will check that first next time. Does this mean her head grew ? I hope so.


Where are we?  I don't know anymore. There is no marker no road map. She seems to be coming along. But lately I have had the misfortune of moms from that other world, where your kid comes out at 40 weeks and sits at x number of months and walks around a year, and eats and talks, etc. make comments to me about how surprising it is to have such adult like conversations with their six year old. They always, end these musings with a "ya know?" And I just say "mmm".  Ah, NO I so don't know. But what can you say? It's great to see their evolving relationship the awe that comes with these comments. I don't want to spoil it for them by making it about something else. So I sort of just agree. "Ya, that's amazing."  It is amazing, but in truth I have no idea what that is like. 

Ellie, in my warped and tired brain, is finally, officially six. Her due date was Feb 4, so there is no clinging to five any more. She's six and not having adult-like conversations with me.  And recently she has gone back to reading some of the books she did two or three years ago. What is up with that?  I feel anxious about this and don't know how to make sense of it. I don't know other kids that closely to know. My sister's kid, who will be 6 in March is doing complex craft projects, using a microscope and wanting me to teach her oil painting. 

There are benefits I can get through the Massachusetts Department of Mental Retardation. Yep they actually call it that. DMR. Nice huh. Progressive. But they give you money for stuff, like augmentative communication devises, etc. But to get those benefits you basically have to declare your kid is MR. MR. Mentally Retarded. Yep they still call it that. 

I haven't been able to even call them. Several people have given me their number. I haven't done it. What is MR anyway? Is anyone really MR? I worked with juvenile delinquents who had IQs of 70 - which was considered MR. But what I found of them is that you can do a lot with that. And Ellie. Ellie, she used to be able to do things that kids her age couldn't, like know her alphabet at age 2 and all her colors and shapes. But now, those same kids are having "adult-like" conversations with their mothers and we are reading books from a few years ago. 

I am not surprised. Not really. But seeing the gap widen - and it was probably always this wide or wider - just harder to see - is difficult. I am not in denial either. I want to see Ellie as she is. But what I don't want to do is label her something that fixes her in space and time and arrests her development. I think labels are THAT strong. I want to keep the bar high on her and keep hope and believe she will move forward at her pace and her time. I really don't want to label her anything. It's so final and I don't want others to label her either. I can sense a low bar being set for her miles away. The dismissal of possibilities stinks like a poppy diaper filling up a room. I can't stand for that. So it's not that I don't notice these differences, but I just can't live in them. They are only helpful in giving me ideas about things to do with Ellie to teach her about the world and maybe create a new neuro pathway via experience.

Today, after reading Jacqui's post, I showed Ellie what a letter was and where the stamp went. We will have to do that again to make it stick. I need to bring the world to her that a typical 6 year old could access though I am not sure of all that is. We recently started a ballet class that was inspired by Ellie. She looks really cute in her pink leotard and ballet shoes. Pictures soon to come. She has navigated that new setting beautifully and it's part of the bring the world to her paradigm. 


Ellie is still off it and none the worse. I have to say I have really noticed the difference. When I am in the market I can consider bringing home grapefruits without shuddering. I can give her herbal teas without wondering and worrying. And having one less med to give her four less times a day is a huge thing.  Sometimes its the small things.

Another new thing she has been doing, spontaneously, versus being coaxed, is signing I love you. The sign for I love you is tough for Ellie. All the open handed signs are and in this one you have to keep your middle two fingers down and the other three up. It takes her about thirty seconds to make it using two hands. And that's a long time in communicating and when you are six. Yesterday, Ellie signed it to me when I was pumping gas and tapping on the window to amuse her while I did so. Moments like that sustain me. They really do. It was like since Ellie was born. It would be a look she would give me, or a nuzzle, or just a sense that she would emit into the ethers. The message is always, "It's going to be ok mama." 

I am not sure what ok is going to look like, but I trust Ellie.