Oh, Dearest Mother, Sweetest Virgin of Altagracia, our Patroness. You are our Advocate and to you we recommend our needs. You are our Teacher and like disciples we come to learn from the example of your holy life. You are our Mother, and like children, we come to offer you all of the love of our hearts. Receive, dearest Mother, our offerings and listen attentively to our supplications. Amen.



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Subject Topic: LogoBoy's piano recital and a nice story Post ReplyPost New Topic
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Taffy
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Posted: April 28 2007 at 11:11am | IP Logged Quote Taffy
As I've mentioned before, LogoBoy is my special needs boy with a diagnosis of PDD (autism). I thought some here might be interested to hear how his piano recital went - I just blogged about it and you can read the story here.

I also found this uplifting piece about dealing with the "experts" and our special needs children. It's called Saying Yes When the Experts Say No.

Cheers,

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Willa
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Posted: April 28 2007 at 1:32pm | IP Logged Quote Willa
That is a really good article.... very affirming.   I have been thinking a lot recently about the part that a mom's intuition -- gut, I guess -- plays into decision-making.

My most painful experience in ignoring my instincts was when Aidan was in Early Intervention.   He had a G tube because he was unable to eat by mouth -- sensory issues The OT took a very strong behavioristic approach where she'd confront him with sensory things, eg swiping his mouth with food. Plus, he was in a feeding group which was for the purpose of teaching the kids to eat by role modelling.

These measures had exactly the opposite effect from what was intended.   The food swiping simply grossed him out and made him fearful.   He would gag and retch. The feeding group was a loud undisciplined display of a bunch of other kids who were also violently aversive. It reinforced his anxiety.   He picked up on a subtle but real "pushy" "you don't measure up" tone in the whole environment (I picked up on the same thing) and it made him withdraw into spaciness and sullenness.   Then he would act out -- avoid eye contact, ignore the therapist, try to run out of the room -- and we found ourselves in a negative spiral where the acting out made the therapists try to be more assertive in response to control his behavior.   

Today, now, I think I would have the courage to trust my instincts, but back then, though I did try to mediate the experience for him, I didn't communicate assertively enough what I saw his reactions were. I hadn't had a special needs child before and I distrusted my own intuition in comparison with their expertise.    When we transitioned from EI to other (and very good) therapists, it took them almost a year of basically "deschooling" therapy in order for him to develop trust again.   Fortunately they were very good about being patient and working with the clues that he and I gave them.   He is remarkably cooperative now within his limits of attention span, etc.

Boy, I probably should have blogged this since it's getting so long!

I loved your post about LogoBoy's piano recital. I bet you are right that once he is used to the procedure he will be able to deal with the stress and it was neat that he was able to play through the anxiety and do a good job. Bravo!!

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Taffy
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Posted: April 28 2007 at 2:12pm | IP Logged Quote Taffy
Willa, I liked that article too. I've had MANY times when I've disagreed with the "experts", the most pronounced times are when they try to forecast LogoBoy's future and prepare us for all that he won't be able to do. As if they know! GRRR... We all know that, even if our "special needs" children take a different path from the norm, there's no limit to how far they can go with the right kind of help.

Sorry for the rant. I know what it's like to doubt yourself too. I do it all the time!

Don't feel too bad about not intervening in Aiden's feeding group sooner. We are on a steep learning curve after all!

And THANK YOU for your kind words about LogoBoy's recital. I wish that I were the one who was thinking he should play concerts more - unfortunately, I was so stressed from the experience that I was thinking that it would be his last performance for quite some time. I wish I were made of sterner stuff sometimes.

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Chari
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Posted: April 29 2007 at 1:03pm | IP Logged Quote Chari
Lovely story in your blog.

Your boys seem sweet.......they are blessed to have YOU as their mother!

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Taffy
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Posted: April 29 2007 at 4:03pm | IP Logged Quote Taffy
Chari, YOU are sweet! Thanks for your kind words - they've made my day.

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Chari
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Posted: April 29 2007 at 8:49pm | IP Logged Quote Chari
Taffy ......now we are even


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