Is My Cape Fluttering

Our original path of diagnosis for K3 led us from the very helpful Dr. M who referred us to the university and a lovely neurologist who, having insufficient documentation to make a diagnosis, referred us for testing at an autism center which is an off shoot of the university's autism testing and treatment center.

I spoke with the doctoral student who will be evaluating K3 and several items came to light...

• We don't just need a diagnosis, but actual testing scores for IQ etc, if we hope to become eligible for state services.
• The state disability folks in my county refer kids to her already for testing. She's likely good at her work and her report will carry a lot of weight/be indisputable.
• After a long phone conversation, she indicated that she wouldn't be surprised that K3 likely has autism but that isn't sufficient for state services. She will need to be retarded as well. It is the combination of autism and mental retardation (low IQ) that makes a person eligible for state services.
• They don't take insurance. We will have to pay out-of-pocket for K3's evaluation and testing. A minimum of 10 hours of intake and testing and the same number of hours in report writing plus the closing session with us, two additional hours. payment for individual testing days will be due at each of the 4-5 appoints needed.

I've talked to The Old Goat about all of this and yes, he is (as always) the voice of reason. We have to do it, we'll worry about the money later.

I talked to K2 about it and her eyes glazed over.

I finally talked to K3 about it and she got that panicked look in her eyes. Other than the initial 1.5 hour intake where it is her and I, the rest of the testing is solo. I get why I cannot sit next to her during the testing, but that is her coping mechanism when someone asks her something and she doesn't understand. She turns to me or looks at me... she knows I'll help her.  To do the testing alone makes her feel very anxious.

While I'm fairly certain autism is the correct diagnisis for my little K3, I'm a little worried about the IQ. While she's had 3 tests so far during her life, she was much younger then. None of them showed her to be in the "average" range of intelligence. I feel angry and defensive just writing that.

It is a swirling vortex of feelings... I've spent her entire life prepared to thrash anyone that called her stupid... and now, I'm hoping that she'll test "below average" again... so that at least she will have state services after The Old Goat and I pass on to our rewards.

Life sure has a funny way of helping you see things from all sides...

Today I am digging deep, using up all my inner resources...

Today K3 and I are off to our second visit with the neurologist, who appears to really know his stuff, to get the official diagnosis on her disability. Gah.

For those not in the know, TOG and I got pretty defensive in her K-12 years after multiple contentious discussions with her school district. The labeling game sucks but you must allow a label in order to get special education services. However, it must be the right label, which gets her services but doesn't allow the school to move her out of acedemics and into "living skills." In jr. high, we finally took her to a childrens neurologist and asked for a diagnosis that the school could not dispute that we could use until graduation. I can't remember what it was, but it served us well. No more icky meetings about her destiny, just mostly appropriate services every year by well meaning special ed teachers (bless their hearts).

Now, after The Accident, in order to be granted guardianship, we must show that K3 has a significant impairment, defined by an adult diagnosis. Further, that impairment may entitle her to some level of state services over the next year or two at least.... something I never thought she would be eligble for given our state's budgetary constraints. But our state has made additional dollars available to students graduating in 2009/2010 and a good diagnosis will make her eligible. This would be a huge move, taking her out of school services for the first time in her life, but services through independent vendors who must show progress are of higher quality than the school district who is not required to do anything but keep her busy until she ages out at 21.

Sorry to be so long winded... I'm just stressy. I'm taking the time off today to go to the neurologist. Time that is pretty scarce as I have a grant due at 5:00pm today (mostly written) and another due on Monday (half written). Did I mention that I hate writing logic models for grants. It is my least favorite part of grant writing!

So... thanks for letting me dump. If you can take a moment to send some good vibes our way... so appreciated.

Yours in stress, tension and anxiety...

AG