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  #1  
Old 01-09-2009, 10:36 PM
For little Elza's Avatar
For little Elza
Family Member
 
Join Date: Nov 2005
Posts: 408
Default Diagnosis - Classic Autism

We waited 3 months to see the developmental specialist pediatrician. I was prepared, I had my copies, I went in with dd and had the 2.5 hour consultation. We had already been through DDD in Arizona and early intervention, but this was the real deal.

Diagnosis - Autistic Disorder, Allergic Disorder, Sensory Integration Disorder, Feeding Disorder, and Sleep Disorder

Instead of telling you how I really feel about everything, let me say this for her. I wrote this poem as a response to people saying, "I am sorry" when they hear her diagnosis.

Don't feel sorry for Jaunie
by L.M. Colombe (me)

for Jaunie Marie

I spin in circles
I don't hear my name
I do the exact opposite
as you want me to do
I hate loud noises
and sunshine in my face
I watch t.v. right up to the tube.

I am Jaunie Marie
I have autism
But don't be sorry for me
I can run, jump, and chase
and kick a ball
I can climb, play soccer, and swim

I just can't talk or
make my muscles do
what my brain
tells them to do
right when you want me to

My mother is grateful
because I told her
"Lie-luh-loo"
with a kiss.
She is happy that
I called my big sister
"Ky-lleee" 10 times in a row
As I walked backwards
up the tornado slide
Just last week

My family knows me
For who I am
So don't feel sorry for me
Help me
Talk to me
Understand me
Don't stare at me
Just know that I am
Just a little me - just
a little different than
Your little you
maybe

But I am me.
Don't say you are sorry
For me or
Sorry for my mom
or my family.
They love me.
I am Jaunie Marie.
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  #2  
Old 01-15-2009, 09:45 AM
ruthann8's Avatar
ruthann8
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Join Date: May 2007
Posts: 911
I love your poem. You have a challenging road ahead of you. It is ok to feel remorse or sadness, it is natural for you to feel that way, you may even feel very angry. Now that you have a diagnosis you can move forward and take the steps needed to help her. I have yet to work with an autistic child or adult, but I do work with the mentally/physically disabled and they live very happy and fulfilling lives. I read this thread when you first posted it but I didn't know what to say, so it took me awhile. If you need someone to talk to you can pm me. I wish you the best.
  #3  
Old 01-16-2009, 10:31 PM
For little Elza's Avatar
For little Elza
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Join Date: Nov 2005
Posts: 408
Smile Poems are hard to respond to

Thanks so much for your kind and caring response. I know that poetry can be hard to respond to (I come from an English teacher background), especially when it sounds kinda intense.

But I appreciate what you said and the words you shared. Thanks so much! Your daughter is beautiful and nearing 1! How cool! Best wishes for a great 1st birthday!
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  #4  
Old 01-17-2009, 01:49 AM
JeanLynn81's Avatar
JeanLynn81
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Join Date: Jun 2006
Posts: 3,333
Oh boy. You drove me to tears, and that is certainly not an easy thing to do! And this not because I feel sorry for you or little Jaunie Marie, but because I connected to that poem on such a deep level. I thank you for writing that because it reminded me that as mothers of special children, we shouldn't feel sad everyday. Other moms can brag that their two year olds are using the potty. We don't have that. BUT...we learn more than anyone how to appreciate the very small things.

The other day, Alyssa and me were saying hi to our two fish, Moe and Larry (r.i.p. Curly the snail). And as usual, I'm saying the words "Look at the FISH in the WATER" (a sentence, like many, that I have said 500,000,000,001 times)...then out of nowhere, Alyssa says "Ssshh...Ara"...and let me tell you I could have just died happy right then and there! Yes, I know all first words are special to all moms, but I had been waiting well over two years for any consistent word to stick. (And I know you know what I mean by that..she always says something once, then I never hear it again ) Imagine my surprise that she put two words together! Oh my..and now she says it everytime. Its so precious.

Anyways, sorry. I know this is your thread and not mine to brag on. But I just wanted you to see that you are not alone in this everyday struggle to come to terms with having a special child. I am right there with you.

My daughter has speech problems (and lot of frustration when she can't find words), and pretty much everything you have listed for your sweet baby girl. She is about the same age too.

I really want to stress how thankful I am that you shared that poem with us...with me. It is just lovely.
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  #5  
Old 01-17-2009, 11:22 AM
brieanniepannie's Avatar
brieanniepannie
Family Member
 
Join Date: Oct 2006
Posts: 455
What a beautiful poem, thank you for sharing.
About the diagnosis.. Yes it will be a challenge, but you know what? With the right programs and such she can be a very successful person. My brother was diagnosed with autism... they said he would never walk, talk, or function as a human being. And that was true until we brought him to an incredible specialist up here. With some special programs through his school and physical therapy and medications (i know some people are against them, but they really worked for him!) He is a very successful person! he is 20 years old, he will be 21 this year. He drives, he graduated 3.6 gpa, all mainstream classes, excelled in 3 years of German.. he is an incredible person! he also has sensory integration disorder and ADHD... we used to "brush" him because he would physically feel pain whenever even clothes touched his skin.. so we would "brush" him and it would help tons!
Sorry to ramble.. I just wanted to let you know that there is hope and nowadays there are many successful treatments to help them live as normal lives as possible!!!
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Brieanne, 24
mama to Mikael Thomas [[8/23/2007]]
and newest addition, Tyler Jordan [[10/21/2009]]

  #6  
Old 01-17-2009, 04:42 PM
vanaden's Avatar
vanaden
Family Member
 
Join Date: Jan 2008
Posts: 711
This is beautiful! You are a strong woman building a wonderful foundation for your children. What a special mom you are and how lucky your babies are to have you! God bless.
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  #7  
Old 01-18-2009, 09:20 AM
lene_hope
Family Member
 
Join Date: Jan 2009
Posts: 9
I am in tears..........What a beautiful smile.....and "Lie-luh-loo" too!!

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