Friday, December 07, 2012

I haven't posted here in 2012, which is rapidly coming to an end, so I'm doing so now mostly to keep the account from going dormant.  Working full time prevents me from dedicating as much mental energy to mind-fucking (excuse the language, but it's MY blog) what I did wrong in the past and will surely do wrong in the future. 

The girl is wonderful and joyous.  First grade last year was miserable, but so far second grade is going great.  She's in a class that is a better environment for her, and we've started her on some medication that seems to be helping with her impulsiveness and inattention.  She loves Angry Birds, My Little Pony, and watching YouTube videos of people putting together Lego projects.  She could do a search on YouTube before she could consistently write her name, if you want to know the truth.

We had a trauma when we learned her developmental pediatrician had moved out of state, and the hospital where she had worked had not found a replacement.  The other hospitals in town have, literally, months-long waiting lists to see developmental specialists, and we discovered this at a time when Susan was having daily crisis-level behavioral meltdowns.  The insurance company referred me to a clinic 3 hours away as the nearest one taking new patients.  Total nightmare. 

I put out a call for help on the special needs parents' listserv for our state, and fortunately got a referral there to a private clinic in town.  The child psychiatrist there was able to see her within a few weeks.  They don't take insurance, which is why they don't have a waiting list like everybody else, so we have to pay out of pocket and apply for reimbursement from the insurance company.  We are very lucky that we have the means to float this kind of expense.  It's an example of how much the current health care system is failing that necessary care for children is rationed according to parents' ability to pay.

Interestingly, the new doctor doesn't agree with the autism diagnosis.  He says she's PDD-NOS (pervasive developmental disorder - not otherwise specified), which is a fancy way of saying we don't really know anything.  It doesn't actually matter, we use the word "autism" describe a lot of behaviors nobody really understands because it's a convenient and descriptive enough to be useful. 

Topic change here - I'm not bothering with transitions.

She is very good at the decoding aspect of reading - recognizing the words that letters represent - but weaker in reading comprehension.  I think some of that is the way comprehension is assessed. Typically the reader is asked to make inferences from the material, and inference is not something most autistic kids do well.  Example:

Read the following passage: "Ann was excited about her party that afternoon.  She couldn't wait to blow out the candles and open her presents."

Why was Ann excited?
A. Because it was her birthday
B. Because it was morning
C. Because she was 10 years old
D. Because lit candles are on fire.
Susan would have no trouble reading the words of the sentence, or telling you that Ann was excited, that Ann was having a party that afternoon, and that Ann liked to blow out candles and open presents.  She understands the literal meaning of what she reads.  She would have a hard time with the question though, because it requires making the inference that the party is for Ann's birthday.  Susan would probably pick D  as the correct answer, because it is the only option that states something identifies as fact.

Here she is with her favorite toy Theodore the chipmunk, who was tricked out with a princess crown for her birthday.