Wednesday, April 07, 2010

My Brain Fetish

For the last 3-4 years I have put a lot of my own brain space into gathering knowledge like the above image; mainly to help me better understand Ava's brain but I must say that the brain in itself has captured my curiosity, I find it fascinating.  I have recently been turned on to the Charlie Rose Brain Series (particularly episode 2 on neuro-vision) and would like to say thank you to Dr Boucher for her post How the Brain Sees: The CliffsNotes which brought my attention to the noted series.

In short, a vision specialist that works with Ava at the Anchor Center (JC, the TVI that I assisted with the vision+seizures=? group with) thinks her vision uses the tectal path instead of the normal optic nerve path.  Indeed it is way more complicated than I can sum up in this post but I am excited to share episode 2 of the series with those of you that still look at me like I'm speaking Mandarin when I explain some of our obstacles with this very issue.

Ava's visual diagnosis is Cortical (or Cerebral - which ever you prefer) Vision Impairment, ocular motor apraxia and strabismus.  Like everything else in our lives, if her day is good, so is her vision.  I view CVI as a catch all diagnosis for abnormal neuro-visual processing (which the processing part is talked about at length in the film); it is also a spectrum which doesn't make it any easier to understand.  The maturation of Ava's visual system has come an amazingly LONG ways since she was first diagnosed with problems.  I must say my knowledge of the subject matter in regards to our family has fortunately followed the same road.

It is the most common and most under diagnosed vision problem in the United States that is often over looked and categorized as other learning or behavior variations.  I think that what I just typed sums up a lot of the problems I was having with our home school district TVI.  If you've followed my blog or talked to me in the past few months you are well aware of Mr TVI.

Luckily we do not have the autistic (and CVI) problems with facial recognition discussed in the film; at least she does recognize those she is most familiar with.  Ava has had surgery to help correct her strabismus which may be repeated in a few years; it did help with some ocular vision also (which you need for depth perception).  I will say I am, over a year later, starting to notice the right eyeball getting a little goofy under fatigue.

I think it is nice they mentioned the motor planning topic too.  This is by far the hardest concept for me to communicate to anyone, it's impossible for me to do with any kind of logic.  Ava is just discovering "edges" and while walking must examine all she can recognize.  This is actually a strategy we use for independent walking, distraction by edges (sometime I'll post a photo of my hallway) and it works.  If you've ever seen a light box used with blind/VI infants you can imagine that concept being carried over to a walking tent - that is ideal but hard to consistently achieve in a home environment.  We do what we can with what we've got.

The film is the nicest summary I have seen that is, as Dr B said, distilled enough for the general public.  With that said, if you still wonder what the hell is really wrong with Ava's vision, you should watch - it is a good start to figuring out what you really don't understand ;)  That's how I usually feel in regard to the topic!

I will be posting some details in the near future about Ava's big $$$ swing order from SouthPaw and her new sensory diet.  Miss Beth and I are working out some fine details but it is close.  She is doing so well but she has an extremly hard time regulating when her brain has been overloaded.  Unfortunatly part of doing well and moving forward is big sensory overloads for Ava and I am still trying to recognize the pattern.  Stay tuned.

I hope this post finds you healthy and happy.

1 comment:

Anonymous said...

Thanks so much, Amanda. I found the tv series on another blog (to which I gave credit in a post titled "Train of Thought".

I forget sometimes the frustration parents feel when trying to explain their child to others (since I am usually receptive to the jargon). I agree with you that understanding goes a long way and education wherever it can be found is helpful. I think understand goes a long way towards dispelling pity, too. (Hate.pity.)

I look forward to your posts on Ava's sensory diet (a subject mentioned in my post today).