"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Monday, October 8, 2012

Report from Visit with Neuropsychologist

Prior to the visit last week to the Neuropsychcologist, the school did a few assessments of Katya's level of functioning.

Their assessment was, to put it mildly, bleak. For those of us who love Katya and interact with her each day, and see her strengths, it was hard reading. It was hard to see those assessments in black and white. Even though we KNEW that is about where she would come out at on standardized testing, made to be given to kids who do NOT have her disadvantaged background, it still stung.

For a few hours. Then, we made up our minds to realize that NOTHING had changed. Katya is still the same smart, funny, life-loving little gal that we know. She's the same gal who makes us laugh, and the same one that we marvel over each week. The same little girl who sometimes makes us go want to bang our head a few times against the wall, and the same one who makes us weep with laughter one minute, and with sympathetic tears the next.

Katya is the same little gal who rushes around with the broom and dust pan cleaning the floor, the same one who builds exquisite Lego creations, the same little gal who loves beauty and goes out to pick wildflowers, making sure to make the stem lengths the appropriate length to put into the vase she loves to use that sits on my kitchen window sill. The same music lover who takes piano lessons and is making excellent progress, and same gal who is doing 48 piece puzzles on her own.

She's still the Katya we know and love.

So, when Paul and I arrived at the appointment after driving nearly 2.5 hours to get there, we were much interested in what the Dr. had to say.

She led off by telling us she had been reviewing the records that she had access to. She said that first of all, as we probably know, there is little to no info on similar cases to Katya's, and that for that reason, no one has really any kind of an idea to tell us what to expect for the future for Katya.

She went on to say that to her it is a miracle that Katya was alive after 7 years of un-treated craniostynosis, and that even if she WAS alive when we got to the orphanage, she would never have expected to hear that Katya was up and on her feet, running, laughing and fairly functional as to her self care skills. She said those things are a miracle, and that even kids with cranio issues treated in a timely manner often have mild to moderate mental disabilities, and so it's not a surprise to her that Katya tested as showing "moderate intellectual disabilities". To her it was most surprising that Katya can be as functional as she is today, and that she clearly shows some very good abilities in some areas.

However, the Dr. went on, Katya's whole story is unusual enough that she does not feel like any assessments done on Katya right now are a accurate picture of her life long term. She said at best, it is a small snapshot of Katya's life RIGHT NOW, "today"  . . .and that over time, as we have multiple snap-shots, we may be able to put together a better picture, and a better understanding, of what Katya's life may look like as an adult.

Paul and I feel comfortable with that approach, and agree that it is a wise way to consider the situation. We further felt confirmation that this is the Dr. we wish to work with when she explained that she typically has trainees attend to much of the testing of a child, with her providing oversight and stepping in as needed for evaluation and interpretation. But with Katya's case being so unusual, she said, she did not feel comfortable handing her over to trainees, and plans to conduct all the testing herself. Paul and I (of course) heartily agreed with that after having seen how unprepared "trainees" were to cope with Katya's case at Johns Hopkins Hospital!

So, plans are rolling to get Katya a complete assessment. The Dr. said that we are at a good point out from surgery in terms of brain healing/recovery time to do a full-scale assessment and get an idea of where she is at  NOW.

My invitation for questions is still open even though (to my surprise!) I did not get any questions yet! Maybe someone will have some tonight. ;-)


Claire said...

What is Katya's favourite song?

Can we see some more pictures of her lego creations please?

Leah said...

What are your hopes for Katya's future?

What are your fears?

What skill would you most like to see Katya develop?

I see from the video you posted that you wear a head covering. Is that to do with your religious beliefs?

What are your honest thoughts on Reece's Rainbow?

(Yup, I know these are some tough ones! :P )

PS -- Love the blog! Katya is an incredible little girl, with an incredible mother.