Friday, May 23, 2008

Tough Day.. Tough Day...

Although I've been on this journey for quite a while now, these conferences still get to me. I can't rationally explain WHAT happens.. Most of the time I keep such a very tight choke hold on my emotions and I don't allow myself to get too stuck in negative, 'woe is me' type of thinking, or God forbid, have a "I'm falling apart and bawling my eyes out for more than 1 minute" session. As really, if/when I fall apart, who's going to step up and fill my shoes until I gain my composure (don't answer that.. rhetorical question..)?

I did OK this morning. Dr. Herbert's presentation was great, as always, and Dr. Walker's was very interesting too [to my disappointment he decided to NOT discuss his association with the Macaque -vaccine schedule study.. apparently results have just been submitted for publication, but not yet accepted.. but it was really nice to hear him talk about his transformation from biogeneticist focussed on single gene disease models to an 'ASD kids are physically ill" investigative biomarker researcher.

I thorougly enjoyed Barbara Fischkin's presentation - while the 'outcome' for her son is far from what you would hope for (he continues to be severely affected), she and her husband have been able to create a space for Dan in their community (he has two jobs now), and I truly think that, in his own unique way and with lots of help from a caring community, he will be 'OK'.

Jenny was.. well.. Jenny is Jenny.. 'nuf said. She made me laugh, she made me tear up a little, she made me swear with her, she made me stand up and cheer. While I certainly don't agree with everything she has to say (I think she oversimplifies a tad too much), there is no denying the impact she's had on getting biomedical treatments for autism into mainstream media.

My afternoon had a very strong remedial education/remedial communication therapies slant to it.. and it was during the RDI session that 'it' hit me.. and 'it' hit me hard. While there is no denying that Salamander has come far, we still have so far to go in the relationship development/communication to facilitate and maintain relationships/life skills department. And I realize that I have made/am making a mistake by having become Salamander's 'prosthetic frontal lobe'. I need to snap out of doing the 'filtering, processing, sorting, sequencing, etc.' for him. He MUST learn to do this himself if he is to become a self directed, confident, and competent adult. So now what do I need to do to get him there? RDI may be part of the answer...

In the same RDI session, there was talk about how bogus the terms 'low functioning' and 'high functioning' truly are, as it says absolutely nothing about the magnitude of the impact of the core deficits of autism on the ability of the affected person to develop and sustain meaningful and fullfilling relationships (and those deficits are there regardless of where you've landed on the spectrum). The following slide send me into quite a funk - this is NOT what I want for Salamander...

I am still trying to pull myself back together... Hopefully some sleep will help....

Added on May 27, 2008:

The above posted slide was picked up by a fellow blogger. She too was hit hard by it. By the time she picked it up though, I had had some time to ponder and process, so I felt further context to the slide was necessary. You can find the ensuing exchange here.

2 Comments:

At 11:39 AM, May 24, 2008 , Anonymous Anonymous said...

Petra, you are a blessing. I so wanted to be at this conference. Thank you for taking the time to share your experience. For a mom who couldn't be there, it's really appreciated. Your expert prose is an added bonus!

 
At 8:19 PM, May 24, 2008 , Anonymous Jeanne said...

Damn, that chart just did me in as well. I need to think on this. My thoughts are not good right now.

Thanks for reporting what your are experiencing, I appreciate it since I was unable to attend.

I will be at the next one. This chart just convinced me of that.

 

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