Tuesday, March 11, 2008

My kid IS weird

Today was part one of KayTar's autism evaluation through the district. I think I feel a bit differently about these little evaluations than a lot of other parents. Generally, people seem to be uncomfortable with the idea of their child be judged or graded for defects or deficits. Many parents shy away from labels and limits, they don't like to watch their children be scrutinized. But me? I love it, in a strange way. I love watching KayTar and the evaluators interact. I love listening to her answer questions (in sometimes hilarious ways, "Where do you sleep?" "IN A BOX!") or throw out her little quotes and watch the evaluators react ("This bowling ball is CHEAP!"). I love the way she always, always gets them to smile and laugh (The SLP told me that if she had her at home she'd never stop smiling). I love the way she charms them. And honestly, I love having my suspicions confirmed.

KayTar is one hot mess of a puzzle, not only medically, but also behaviorally. She is not a neat and tidy package of anything. As her mother, I observe a great many things that the general public misses, even trained professionals miss these things if they don't interact with her for adequate periods of time. I'm constantly dissecting things, researching things, wondering about behaviors and patterns...my brain is always processing some little tidbit of information I've gleaned from her. It can be tiring and a little maddening, too, especially when so many other people miss it at first glance. But to sit in these meetings (which I am an observer for, not a participant) and see her do the same things for them and to watch them catch on to it, without me saying a word, is like one 4 hour long sigh of relief. They get it. They get her. They see the problem areas, the lack of understanding and comprehension, the inability to tell stories or join in socially, the way she tricks people with her speech, and so on. They know how she covers her deficits and they know how to get her to expose the problems. It is an amazing process to witness.

She did a great job today, she was exactly herself. She did well at the things she does well at (above age level for quite a bit of stuff) and she showed deficits where deficits are. I never felt like she behaved out of character or failed to do something she really can do, which means it was successful. I won't know anything solid for quite a while. We go back on Friday for a "play test". Today was formal evaluation testing, the next session is more play based. Then there is the home visit, then the Big Meeting, which is when we should know. I did ask the SLP, "So, did you see what you expected to see?" and she said "Yes." So, I suppose that is a good thing. I'm anxious to get the results, not because I'm afraid of what they might say, labels tell you nothing you don't already know, but because I am so curious about what they'll categorize it as. I'm pretty sure they won't call it KayTarosis, but I think it has a nice ring to it.

25 comments:

Aliki2006 said...

I'm glad the eval went well--as it sounds like it did.

And, also, I know EXACTLY what you mean. Exactly.

Katie said...

Weird is a good thing, just ask Lulu ;)

Glad Kaytar was herself today, that's the best you can ask for when it's eval time if you ask me!

flutter said...

I am fairly certain she would charm the hell out of me, too.

Becca said...

I'm so glad it was everything you hoped for... and that it wasn't episode day.

furiousBall said...

weird is the best. viva la weird!

Oh, The Joys said...

I think it has a good ring. As ever, I am in awe of you, friend. xo,OTJ

Kristin said...

I'm so glad the eval went well. I always get nervous for those kinds of things like, "He does it at home!" Or, "he really does know all his colors, he's just pretending he's shy".

I think KayTarosis has a VERY nice ring...seriously, whatever is "up" with her sounds pretty darn unique. Who do we talk to about this official name? :)

Bea said...

I was nodding vigorously through all of this - I have felt exactly the same way. It's hard to wait for the Big Meeting though.

motherbumper said...

Weird is the new cool.

Beck said...

She's funny - and I find evaluations oddly charming, too.

Julie Pippert said...

I think validation, insight, understanding...it must be such a relief.

And I can vouch that KayTar is that special and endearing.

natalie said...

Oh, my heart is racing! I can't wait to hear about the eval!!

And I'm glad today was 70...69 was TOTALLY stressing me out. Don't tell H. He might have liked it. (SO SORRY...we're in complete baby mode and I can't get IT off my mind! H is in heaven!)

dawn224 said...

Sweet! Kaytarosis :) lol

Janet said...

This bowling ball is CHEAP! That would charm me, too. Although I already find her bewitching.

cinnamon gurl said...

You have such a great attitude. I'm glad she was herself. I'm sure there's nothing worse than having your child behave atypically for an important evaluation.

Lisa b said...

Kaytarosis it will remain for me.
It is so important to find good people to help. I am glad the assessment went well.

~aj~ said...

KayTar just sounds like such a joy to be around. If she's such a sweet/happy girl for strangers, I can't imagine how much fun she must be at home!

Glad today went well. Hope you get some good answers!

Don Mills Diva said...

You have such a great attitude about things - you really were meant to be that special little girl's mommy.

nomotherearth said...

that picture says it all - breathtaking.

Please post about the play-based eval and keep us updated.

Christina said...

When you talk about the mystery that is Kaytar it always makes me think of this famous quote and how that's what you're doing here- living those questions:

"...have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer."

Rainer Maria Rilke, 1903
in Letters to a Young Poet

painted maypole said...

kaytarosis... just think of all the medical books her name could be in!

Hetha said...

I've been offline for about a week and have had lots of catching up to do here...so happy to hear that the eval went this well. I do know exactly what you mean about the labels as we're looking forward to an eval of our own next month. The docs and therapists always amazed at how receptive I am to the labels, but I think of it the same way that you do. When your own family members think that sometimes you are just nitpicking or over-reacting, it's so nice to have things confirmed by the professionals.

Karianna said...

See, while you felt that KayTar's eval was a good representation of her (YAY!) I've found that doctors only see the "stressed out" version of my son. And so, while that might be great and knowing "what he is like at his worst," it doesn't show any of the POTENTIAL or any glimmer of "what he is like when he is comfortable."

At the age he was diagnosed, they saw a screeching, sometimes hyperattentive, sometimes nonattentive little boy with zero impulse control and serious difficulty following instructions.

They figured that minimal language during the evaluation meant that he only had minimal language, and so forth. Thus, their prognosis was bleak in comparison to what I knew to be the case.

I could have never said "They get it. They get [him]" But I am SO GLAD that you can say it about KayTar!

Hooray for KayTar for being her accurate self! Fingers crossed...

Anonymous said...

If they do give you a "label", will that count as a diagnosis that could potentially help with the insurance issues or does a MD have to have their name attached to that too? I know that here in WA, its very hard to get proper coverage without a diagnosis. We also have the issue that when a child is diagnosed with Autism, lets say many companies don't provide coverage for that. I know that Microsoft has insurance coverage that includes Autism and a few other smaller Companies around here but not enough.

I hope it all works out for you. Kaytar is amazing, and you were just the angle intended to raise such a special girl

Christine said...

i'm glad it went ok!

i've never had the kids tested, but it wouldn't worry me or make me feel weird if we had to--if there is something that needs attention i'd rather have it addressed then ignore it.

Running on empty