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In all chaos there is a cosmos, in all disorder a secret order. ~Jung~

“Doesn’t she understand that I cannot make her potato stop shaking?!?”

This was recently said by a resident that I work with about an autistic patient that was being seen in our clinic accompanied by his mother. 

My heart broke, stomach nauseous, and my body boiled from the anger. 

I cried when I got home. 

He walked away before I could respond and right now I find myself looking for the appropriate words to address his ignorance. 

Because I have to.

I am so angry and hurt about his horribly unprofessional and cruel comment.  In my experience with him, he has always been very professional, so it really came as a surprise.  I understand that as a training hospital we are to teach these residents how to do everything from managing time to compassion.  I am just not sure that anything I say right now will be effective , it will only be fueled by anger. 

We saw the neurologist on Weds and she changed D to Risperdal.  I knew she would, and had prepared myself accordingly.  We discussed D’s MRI and there are still a lot of variables.  One of which is that it is showing a dilated peri vascular space which is further impairing D’s visual motor/spatial skills, that was about all that she would speculate.  She is going to take it to a case conference with a pediatric Neuro Radiologist, and see what he says.  If the Neuro Radiologist thinks it is more than a dilated peri vascular space then we will have to obtain an MR Angio to look at the blood vessels in Diego’s brain.  She said that it is nothing acute so that is good, but so many questions and possibilities still linger…not good for my anxiety level at all.  I am going to wait until after the wedding next Saturday to start the Risperdal, as the last I need the day of my wedding is an even more disregulated Diego.  My sister, who is phenomenal with him, is assigned to him the day of the wedding.  I am so lucky that she ‘gets’ him 🙂

The regional center could no longer screen me out and I have an orientation appointment for Nov 18th, after which will be the eval.  The case manager at the Regional Center has made it quite clear that if the assessment shows Asperger’s we are screwed.  Forcing me to play ‘the game’ (which I will not explain, but some you know what it is)…and that  is fine.  I think it is ridiculous, but hell, it is what it is. 

We did have a breakthrough in what has been a cloud of disregulation and chaos.

getting ready for bed

D: “Mom, I need a snack.”

Mom: “But D, you just had one aren’t you full…”

D: “Nooooo my tummy doesn’t want it, my mouth does.  It wants to chew.”

Hello sensory need, and he recognized it!!

D has quite a fixation with bubblegum and it really seems to regulate him. 

So I gave him a piece of gum to chew for 15 minutes and he was good!! 

YAY!!!

When things like this happen, I feel less like a hamster spinning my wheel and more like we are getting somewhere.  It was such a great feeling,  and I can only hope that as time passes the episodes become more frequent.

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About sonidoinquieto

I hate writing bios *bio pending*

3 responses »

  1. Was sending you good vibes this weekend! Any questions about the new med, just ask…

    Reply
  2. Take that moment and run with it. It’s great that he recognized what he needed AND told you. That’s very cool.
    good luck with the wedding. I will be thinking of you!

    Reply
  3. Sucks about the potato comment. AWESOME about D recognizing his own bodily cues and needs! I don’t know many ADULTS who can do that! Hell, *I* can’t do that. LOL.

    Reply

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