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Wednesday, April 30, 2008

Experience is Worth a 1,000 Words

Yesterday Dave had to bring Ellie to her new neurologist. My last visit with him was fairly useless. I could tell he had written me off before he even met me because he was really dismissive and didn't answer my questions and only met with us for about 7 minutes. And he had no answers. I left feeling very frustrated.

So move forward one year to yesterday. I had to work so Dave had to take Ellie in, which I thought was really good considering my failure at the previous visit. We discussed what we wanted to talk to him about - mainly that we are worried that the useless shunt that Dr. Death installed is taking away Ellie's vision. Also we want to understand what her third and fourth ventricles are doing (since Dr. Death's big mistake where he allowed Ellie to leave the NICU and go home with active hydrocephalus with third and fourth ventricles blowing up like balloons pretty much taking out her cerebellum. Yep more brain damage on top of an anoxic brain injury at birth. That is a pain this mother will take to her grave). Anywhoo, we wanted to get an overview, discuss an MRI and also what Ellie's unusual ability to read and read a lot meant in terms of brain development. Ellie has like a 200-250 word READING vocabulary (she understands many more words that that at an age appropriate level for a 5 year old - maybe more but hard to tell). But in terms of words if you say them she could pick out of a line up and/or also spell out on a letter board - that is pretty good isn't it?

In the morning Dave and I were rushing around getting ready (you have no idea all the things we have to do each morning to get Ellie and ourselves out the door- it's post worthy). Dave gets Ellie in the car and comes running back in the house and grabs Globee (affectionately - Vtech's Sing and Learn Globe) and Ellie's Magnadoodle and dashes out.

That evening at dinner he told me how it went. He said the meeting got off to a slow start. After the weighing and measuring and reflex testing the doctor asked about Ellie's development. Dave mentioned that she could read and the doctor looked skeptical. So Dave handed him the magnadoodle and said write down anything you see on this Globe but don't say it - just ask Ellie where the thing you wrote down is.

The doctor wrote down "North America" Before he was even done writing, Ellie, who though she often looks like she is deep in to playing with her toys is always listening to it all, immediately spun the globe to North America and put her thumb on it and laughed. He did it again with a couple of other places and Ellie enjoyed showing off her skills.

The doctor was really impressed and said that Ellie being able to recognize so many words is unusual for a 5 year old.

He then seemed more engaged and interested in "the case" which is Ellie's life.

He took a deeper look at the last CT scan we have of Ellie from her last emergency seizure scare last year and showed it to Dave. Ellie's third and fourth ventricles are teeny tiny! Ok - they would only have gone down if there were brain growth to be pushing on them even with a shunt there has to be brain growth dynamically make what were once huge water fulled ventricles that small. Balm to mama's heart for sure! He also paid more attention and addressed the issues Dave brought up after that (some of the very same issues he sidestepped when I brought them up one year ago which of course made me think he is a big chauvinist to pay attention to them only when a man presents them - but that's the gender chip on my shoulder - I really think it was because of what he saw Ellie do with Globee).

I was so impressed by Dave's willingness to just go in there and share his joy with Ellie and in what Ellie is capable of. It's a contagious thing - Dave's enthusiasm for his daughter.

And, as far as visiting doctors, that is so how it's done. If we have to prove Ellie does the things we say she can - Fine! And thanks to her experiences at her new school she doesn't turn into a lump in public anymore and enjoys showing off a bit.

I don't know when doctor's decided that parents are constantly unreliable witnesses to their children's behavior -but I have been experiencing that more and more - the proverbial eye roll when you tell them what Ellie can do. Which really pisses me off because I am not one of those parents who want to see their kid through rose colored glasses. No way - in our case that would be dangerous, literally medically dangerous if I were to gloss everything up all the time. No. I am really fine seeing Ellie just the way she is and keeping my level of hope for her at a steady sane pace, hoping for the world for her but seeing her, really seeing her for who and where she is and taking joy in that. Because she is perfect just the way she is and wonderful in that perfection.

So, fine, next time I will just have to show them what she can do rather than tell them (and take Dave with me)!

13 comments:

Penny L. Richards said...

It's definitely been our experience that SOME doctors take Peter more seriously than me in consults. If we don't have to see them too often, and they're otherwise useful, then whatever, we just make sure Peter's present for those visits. (Also applies to some school personnel, btw.)

That reading demo is SO COOL, though! Reading and geography, really.

Kathryn said...

Penny, yes - I agree that is what has to happen with some of our Doctors - Dave just has to be there too. Luckily the two other key doctors in Ellie's world - her pedi and GI doc are not like that at all. It sucks that you are dealing with that with school officials too. We had that in Ellie's old school - Dave's presence seemed to make everyone behave better....ah the joys of having a you know what.

Yes - seeing Ellie whip around the globe to show where Ireland is or where the arctic ocean is, is a gas. She gets so excited to show what she knows that she does it as quickly as possible - it's so cute.

Anonymous said...

Dear Kathryn,
Just wanted to tell you that your post today really made my day. I love reading about Ellie and your family and you are always an inspiration -- a really joyful inspiration.
Thank you so much for your blog!

Kathryn said...

Anon - thank you so much for your very touching comment. I am glad you are getting something from reading Ryn Tales!

Brooklyn said...

Way to go Ellie! I wish you lived in a world wher you did not have to PROVE them wrong but I am so glad you did! We love reading your blog and just wanted to say hello and tell you how proud we are of you!

Laura said...

Professionals have a hard time recognizing twice exceptional children like Ellie. (i.e. children that are extremely bright in certain areas and very delayed in others). I can't wait to see what Ellie will have to say when the schools find the right communication methods/devices for her. I'm sure it will be a lot.

Bird said...

Oh, man, you guys are my inspiration today. Charlie's vision is so lousy that I don't know if we'll ever read, but he is WITH IT! He hears everything and anticipates and interacts. I will find a way to get more info into that brain of his.

Thanks for the info on the ventricles. Charlie's ventricles shrunk up nicely after surgery and I felt certain this was a good sign!

Gosh, I am just feeling so good after reading this. Your little angel is our Rocky!

Bird said...

OH Gosh, I forgot. . . my hubby is a former AF officer and he gets stuff DONE! He just puts on the voice and nurses are hopping about following his orders. I hate that it's that way.

I think the doctor was just impressed with Ellie's globe-ability. Want to share any tips for educating your special needs child? Did you do the big, red word flash cards or some other method?

Kathryn said...

HI Bird,

Yes we did do the Doman big red letter flash cards starting when Ellie was just about a year old actualy 9 month adjusted. Dave was home with her and he made them up. we also printed out big black and white symbols for her to look at. We also played classical music and worked on making basic sounds for her to imitate - like bababa, lalala, dadada etc. We tried to provide all the things she should have been doing at that age but wasn't so we did them for her. We also did massage with her and worked on sensory stuff like different textures and temperatures using water.We continuted to do some kankeroo care as well. WE just kept her moving from thing to thing all day - when she was tired she would sleep then we made every play activity something geared to develop her brain. It was exhausting and the house was a mess but it seems to have helped her a lot considering where she is today. come to think of it we still act this way with her but now it is punctuated by rare moments where she will play on her own... baby bootcamp!

Your hope for Charlie will make all the difference. It really will.

BusyLizzyMom said...

Kathryn,
She is such a smart girl and you and Dave and of course Ellie should take all the credit. I find those who stereotype can never see anything more than what their preconcieved notions are. Ellie I am sure has changed the Dr's way of thinking and hopefully will see how much our children are capable of. I look forward to the days when Elizabeth's Dad takes her to appointments I do send him with a big list of questions. I do think that he his dealt with differently as he is not the stereotypical anxious mom.

Anne said...

HI, This was a good post. I like how Ellie's Dad as teacher taught Ellie an important lesson about self advocacy in the neurologist office. Truth is our kids need to demonstrate their iq's in order to get the respect they need. I don't like that they have to jump through this hoop . That Ellie is learning early to do so is awesome!!!
Her reading ability is awesome too. We also saw early reading ability and have been grateful for the technological age we live in. Ellie's receptive vocabulary is going to translate into a really neat writing ability.
With lots to say.


Anne onegirlfriday.blogspot.com

akakarma said...

How cool is that?! Neurology is a funny practice with a lot more unknown than known. I also have my hubbie take my daughter to alot of her appointments and really never considered that Dr's respond differently to men.... Hmmmm. We just do it because of our schedules. I think it goes best when we both go together. Your little girl sounds wonderful and so do you!

Karen said...

Ellie, you rock! You taught that doc something that day1 :)