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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.  

Ugh.

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.

Development. 

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. 

Cisipride.

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.


17 comments:

Sherry C said...

That was a great post your such a fabulous mom. I agree with you about the labels I hate them and can sense people setting the bar low for my daughter and it is totally heartbreaking. Just stating my daughters diagnosis sets the bar low even though know one has heard of it as it's so unique. I want everything for her just as you do for Ellie. Ellie is doing great I love reading about all her signing i look forward to even that kind of conversations with my daughter. My Ashley right now is just communicating with her eye, smile and pecs and she will be 4 next month.

Anonymous said...

Hi,

I’ve been reading your blog for a while, but I didn’t dare comment before. (I’m shy.) Just wanted to say that I really appreciate the chance to read about your life and Ellie’s. I’m studying special education, and have been reading plenty of wonderful books, but they are often rather academic and dry and forget about the human perspective completely. I also have a 17-year-old brother who is mentally retarded, but while living with him does give me a little perspective, without your blog and some other blogs as well, I would still get a much too narrow a view about what some of the special needs described in our study books really mean for children and families. (I hope that sentence makes sense… English is not my first language.)

May I ask what sort of books the books Ellie is now interested in again are? And how good are her reading skills? I recall, when I was six or seven myself, that I wanted my mother to read me long books with only text and no pictures. I could comprehend them fine. I was able to read at the time, too, but the long books with lots of words were still too difficult for me to decode, so for my own reading I picked picture books with little text.

My brother learned to read at the age of 12, and for a while he also wanted to read really easy books. I don’t know what sort of books Ellie had three years ago, but, well, if they would be easy to read books, then perhaps she is honing her reading skills as well? That could be the case even if the reading consists mostly of you reading the books aloud to her, since then she would be able to read the words and listen you to say them aloud, thus confirming for her that she did read them right.

Sorry for rambling.

Nettle

BusyLizzyMom said...

Ellie is so beautiful, she is going to be okay. She is wonderfully intelligent and the fact that all her thoughts cannot be expressed must be hard. Is there any other organization that help fund a communication device? It may help to give Ellie an even stronger voice and help to show those who do not slow down enough to listen to her and learn from her.
I so hate the MR label and am amazed that it is still being used. I live in Canada and I cannot even remember it being used as a label, there are so many other terms that can be used that do not carry the attached stigma. For once Canada is actually ahead of itself.
Glad to hear Ellie no longer needs her Cisapride, as you know it is a pretty strong med with unwanted side effects. To have one less thing to do on your list is even better.

Laura said...

It's a shame that children have to be labeled with stereotypical terms to recieve certain community services rather than the services being based on their individual strenghts and weaknesses.

Anonymous said...

I'm on a train with bad Internet but wanted to let you know that I worry about the same things with Moo. He has this thing where he plays with dumps toys and watches the wiggled a bit too much. I then have all these things go round in my brain about regression. Maybe we just worry too much?

Melanie said...

beautiful post. Just wanted to say a couple things. I also hate the MR term. Can't stand it. Ellie is such a smart girl, I have always read the blog and thought just that.I get inspiration from her and hope that Daniel does as well. I got teary reading the I love you while getting gas part and just cried. That is so sweet. I'd take that over having the adult conversations anyday, cause I'm betting those kids don't say it or appreciate the parents,and I think Ellie gets that, and is telling you "it's ok, we'll be fine, now smile and read me my darn book!" Books- I have typical children also and I can remember them being older but they just had little books that were their favorite that were so not age appropriate. Sometimes we just revert back and visit the ones we found fun when we were younger. Give me a Mrs. Piggle Wiggle Book these days and I'd be in heaven. :)

Ellen said...

Hi. Ellie really is coming along! And even though it makes my heart ache, too, when moms with typically developing kids talk about their typically developing behavior, I've learned to just focus on Max—who's also 6—and what he's able to do. That is awesome that she can sign "I love you." How wonderful is it to see that?

MR is a lousy label, but once Max was diagnosed with cerebral palsy, I stopped caring about labels because that label sounded so horrible and Max definitely was not so horrible. I say, make the call to MR for the sake of Ellie, and forget about the awful label.

Ellen said...

Hi. Ellie really is coming along! And even though it makes my heart ache, too, when moms with typically developing kids talk about their typically developing behavior, I've learned to just focus on Max—who's also 6—and what he's able to do. That is awesome that she can sign "I love you." How wonderful is it to see that?

MR is a lousy label, but once Max was diagnosed with cerebral palsy, I stopped caring about labels because that label sounded so horrible and Max definitely was not so horrible. I say, make the call to MR for the sake of Ellie, and forget about the awful label.

Catherine said...

Thank you for sharing your beautiful Ellie with us. I always like reading your posts about her.

Children always backtrack at times. Mine were not classified as special needs and we had times when they back tracked a lot. They would check out books from the library that we had at home or they had read before. Usually very simple books when I wanted to move ahead. All of us moms want our kids to move ahead. They scoot back even when they are moving ahead.

Since you know that your little girl is going to go through life according to her own calendar, don't try to make a time line for her. Think of her as an ethereal soul who will move through time in her own way. Make each goal as you see it as a next step and do not worry about what other children are doing.

With "normal" kids, moms are in a rat race of sorts because they are expected to keep up with the norm. You don't want your child to be behind, fail a grade, be immature, unprepare for the next phase of life that is on a tightly constructed timeline. One gift of having a special child is that you can flow through the time space because you have to do so. That is part of the magic.

Much love to you and Ellie.

Anonymous said...

Hi, I'm the mom of a 3 1/2 year old and he also will often go back to books he liked when he was much younger. Even though he's getting new interests all the time he still often reverts back to old toys and books despite my efforts to get rid of them. I won't even get in to the whole toilet training drama-it's truly one step forward two steps back sometimes. A couple of things occurred to me for Ellie-can she get one of those talking machines like Schuyler on "Schuyler's Monster" has? That might help her communicate more of her thoughts to the world. And the second is, can you arrange play dates for her, opportunities to interact with friends her own age. Kids can learn so much from their peers. Just a few random thoughts. She is a beautiful child!

C. said...

Warrior princess and warrior mom! You are an inspiration to any parent. Keep up the fight, Ellie is so worth it.

Bird said...

I don't think I could say it better than it's said here: Ellie is SO smart!

I've seen children of all ability levels read books of all kinds. I know that for myself I sometimes read a Trixie Belden book because it reminds me of a simpler time. Charlie is much younger than Ellie, but I notice regressions here and there--and they don't stick.

You and Ms. Ell are an inspiration to us here in bloggy land. I understand that we all get down from time to time, but she is wonderful and good and smart and you know that.

Jodi said...

Those "I love yous" sustain me as well. Nice post.

Kathryn said...

It's great to hear about typical adults and kids going back to old favorites. I worry about Ellie regressing though sometimes my gut tells me she is getting something new out of a book either a concept or word she is trying to learn.

We already have an adapted key board that can talk for her but it is large and takes a lot of her physical energy to use - as her hypotonia (CP) makes it hard for her to move. we are looking into other voice output systems but the process through the school is painstakingly slowwwww - way tooo slow. i wish we could be more aggressive about it. To that end we are meeting with an expert in this are this week. I can't wait. I really feel that the bar is set kind of low on Ellie in this area at school. I have seen when she is challenged she develops new capacities - NOT the other way around. But I have failed to influence that at her school in this one area. I have influenced it in other key areas. But it's a constant battle even at a school of the high caliber she is in.

I know too that some kids can only blink - and for all that Ellie can and does do I am grateful. AND she is making gains all the time.

Thanks to all for the kind and thoughtful comments and suggestions.

Anonymous said...

hey,

Here's another label for Elle....which i personally prefer! It's Elle - my gorgeous amazingly talented and inspirational godchild :) Tell her, I'll read all her baba books to her in 3 weeks time.

Love yiz lots,
Aunty Sue Sue xxxx

23wktwinsmommy said...

Hey,

As a fellow Massachusetts resident I wanted you to know that they have passed legislation to officially change the name from DMR to the Department of Developmental Services.

Here is an excerpt from an article dated July 9, 2008

The title of the Massachusetts Department of Mental Retardation will be changed through a provision of the state budget passed by the legislature. The new name will be the Department of Developmental Services.

State Rep. Michael A. Costello, D-Newburyport, left, a longtime proponent of the change, praised the move as an empowering action for one of the state’s most vulnerable populations. Costello has filed legislation to change the name of DMR during each of the last three legislative sessions.

… “The word retardation is used as a commonplace pejorative throughout society, and it’s really common sense that the word should not be associated with one of our state agencies,” Costello said. “The change removes a harmful stigma and should empower those whom the agency serves.”

Costello said he is hopeful that Gov. Deval Patrick would sign the measure.


Not sure what has happened since, but I'm a member of SpedPAC (special ed parents advisory committee) and we were told by the Dir of Special Education that the name has been changed. Not sure why the Department's website still uses DMR though? Anyway, thought I'd share that with you since I just heard of the change at last week's meeting.
I know labels are tough, but if you can get assistance for Ellie I'd say go for it! We all know what amazing abilities she has!!!

Kathryn said...

Wow - that is so cool - I hope they keep going in that direction and change that horrible name.