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.
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??
I will update as I get info.
Next blog expect a school update 🙂