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Waiting

D watching cartoons in his usual fashion...upside down..lol

Diego and I have been reading a social story about waiting.  Diego has a very hard time with this and I figured that it was time to try to tackle it.  So yesterday Diego had to wait and while waiting, he repeatedly (like every 2 seconds) said “look mom I am waiting patiently”  and bit his fingers until I got him what he wanted. 

There are a couple of you, at least ,that read that above line and thought of Smockity Frock’s rant. 

Yesterday as he repeated that line over and over again, doing his best to wait, I thought of it as well. 

Once I gave Diego what he wanted I went to my room and cried. 

I thought of that sweet little girl in the library doing everything that she could to wait patiently, her grandmother doing her best to encourage this progress, and that nasty witch ( yeah I said it) that judged from afar. 

I wrote about how I felt about that situation when it happened, so I won’t give it much more emotional energy.  Instead I will write about how proud I am of Diego for trying so hard to wait patiently. 

We haven’t mastered it and I might add “quietly waiting” into the social story, but I will be damned if he didn’t give it everything he had. 

I admire his perseverance so much. 

I think that some days he keeps ME going. 

There is a very significant development on the school front and I will write about it once it is all worked out.  I also got a call that the neuropsych moved up Diego’s evaluation to September 15th, and Diego’s team at Children’s told me that she did meet with them about D. 

At least she is keeping her word.

I also feels good to know that she is taking everything I told her much more serious than she had a year before.

*Kanye Shrug*

On to other developments…

When Diego’s microarray came back, it showed that his balanced translocation was indeed balanced. 

But when I received the actual report a week ago, it contained four different chromosomes with  “copy gains and losses of unknown clinical significance.”  

For some reason (mother’s intuition???) this just didn’t sit well with me.  There had to be info somewhere about these “copy gains and losses of unknown clinical significance.”  

So being the OCD queen that I am I found  a website called Genophlyx where you can look up each chromosome abnormality and see what studies are associated with them.  Two of the studies connected a loss on Chromosome 1 q44 (which Diego has) with Agenesis of the Corpus Callosum.  The symptoms of such are commonly misdiagnosed  as Asperger’s, ADHD, and  Psych disorders.  A lot of time kids with known  ACC are also co-morbidly diagnosed with an autism spectrum disorder and there is some research possibly connecting the two. 

So we are off to MRI land September 15th to see if this might be the case. 

The only thing that changes if Diego has this, is that I may finally get some help from our regional center.  The regional center can’t argue an MRI, the way they are  currently arguing the psych reports. 

Have I mentioned I hate San Diego’s Regional Center??

Probably 🙂

I will update as I get info. 

Next blog expect a school update 🙂

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About sonidoinquieto

I hate writing bios *bio pending*

8 responses »

  1. Shivon, I hope that MRI show something that gets you what you need without your having to fight for it. Keeping fingers crossed, can’t wait to hear about the school developments!

    Reply
  2. I used to love watching cartoons upside down 🙂

    Reply
  3. therocchronicles

    Good for him for persevering at waiting! And good on you for writing a social story, I need to get better about that!

    Hopefully you’ll get some answers soon. I look forward to reading about the school update. I’m getting more and more uptight about the start of school in a couple weeks. yikes!

    Reply
  4. Fingers crossed that you get some (better? clearer?) answers from the upcoming tests/evals. It always amazes me that professionals want to slap labels on our kids without confirming that there’s no underlying physical pathology which might explain things. *shakes head* Of course, it can cut both ways…Nik’s documented brain damage was the basis for his recent MR diagnosis. Never mind the whole language and visual impairment thing, doc, you go right ahead and ignore the two cornerstones of your tests. Yessiree… *sigh*

    Reply
  5. WOW!
    How did you find out about all of this Shivon? It sounds fascinating!

    Reply

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