Mar 26, 2010

Cognitive Evaluation

Last week I hinted that there was some heavy stuff around the corner. I setup an appointment with a psychologist at Children's Hospital to do a cognitive assessment of Ainsley. Things have been so busy setting up my New Scrapbooking "Business"  and other things that I decided to wait until it was all over to write about the evaluation.

The first step was filling out the preliminary paperwork, the medical history and routine new patient information. There were 10+pages and that was just the beginning. At our first visit in February we just talked about the medical history and he sent me home with another questionare, plus one for her teacher. Filling it out was a lot like when you take your child to the pediatrician for a well-child checkup and they ask you 20 questions about what your child can or can't do. But multiply that x10. Click on this image to enlarge it and see these questions!

I was feeling pretty bad about things after that. We circled a lot of zeros (= unable to perform). Then we went in for testing. This is a lot like tests they do in the birth to three program or for an IEP. They have a big case full of stuff and standard things they ask the child to perform. They are looking to see how much the child understands, how they problem solve, and what types of words can they understand and commands they can follow. I was actually impressed with how well Ainsley did. And so was the doctor. Some examples of tests he did:
  • He placed two washclothes on the table, then put a bracelet under one and then switched them around to see if she could find the bracelet.
  • He filled up a cup with blocks then asked her to do it to watch what she would do to get the final blocks in (I think there was 2 more than would fit).
  • He asked her to get a rubber duck out from under a clear plexi-glass box that had an opening on one side. Then he'd move to to other tests and do it again but move the opening to a different side to see if she remembered how to get the duck out and would figure out that the opening was now on a different side. She figured that out fairly quickly, which really surprised me because of the spatial perception and motor planning involved.
  • He used a picture flip chart to ask her to point to the correct picture when asked a question, to match pictures/objects, and more.

We were there about an hour and a half.  She was so good at paying attention. She really shines in that type of environment. Even though she doesn't always understand, and sometimes can't do what is asked she always TRYS and stays focused on the activity. Amazing for a 3 year old.

I saw him again today. He graded her scores over the week and we met to go over them.  It's complex with many categories. I won't go into all that here. What it boils down to is with an average score being between 85-115 she scored 65. The cut-off for mental retardation is 70 or lower. Taken at face value this would put her in the mildly mentally retarded category. In all honesty I though she would be worse than that (Especially after circling all those ZEROS.) so already I'm pretty happy because it's better than moderate or severe mental retardation.

It's easy to confuse physical disability with intellectual disability (Think cerebral palsy.). Even as her mother, the person who knows her best in the world, I have a hard time sorting it out. But as we talked further and considered all she's been through surgically, her physical limitations (due to the cerebellum malformation) and the affect of the trach on speech it seems that she would certainly score higher if she'd hadn't needed the trach, or had better control over using the muscles in the way she wants.  That makes it difficult to interpret the test. Over time the doctor thought her test scores will improve and at age 6 he suspects she'll fall into the 70-85 range which would put her in the low end of normal congnition.  The bad thing about that is it would disqualify her from receiving services that she may still need.

The other thing I learned is that in addition to the score one has to be failing in adaptive skills. So in other words if congitively you score 68 but you function fine, live independently, have a job, relationships etc then one cannot be diagnosed as mentally retarded. Also if your adaptive skills are poor but you score high then you would not be considered mentally retarded (A lot of people with physical disabilities would fall into this category.)

I realize that no doctor can really tell me how things will turn out for Ainsley. She is truly a one of a kind unique person. But after this evaluation I feel more optimistic. We will love her and value her no matter what. And she is happy and a joy to be around. That is what we all want most for our children anyway. 


  1. Ainsley and Susan, 65 may be a hard score to see, but think of how much effort it takes to focus that long, and perform for a tester...that can't be discounted. These test scores and arbitrary cut-offs are so challenging. I think that the picture changes so much from day-to-day that you should just file this information and keep doing what you are doing. Because she is doing great.

  2. Susan,

    I read this last night, my stomach was in knots because it just brought back so many memories of Gage getting tested. I could not comment because I didn't know how to sort out my feelings.

    I can't stand them, for me they just seem unsettling and make me feel out of sorts with my feelings.
    Everytime I accept everything about him they do one of these tests and it makes me feel crappy all over again.

    I think your are doing wonderful with Ainsley, she is happy, she is sweet, and in the long run when she is eighteen I feel with your hard work and love she will have progressed to someone who it really didn't matter what that score was!

    Hugs, and just keep doing what you are doing!
    That ribbon is closer than you probably even realize!

    Please join in on Sooc Saturday!
    I'll be looking for you!

  3. Hmm, I have to agree with Erika these tests are not the end all be all. But I can certainly see your dilemma in the numbers because you want her to get the maximum benefit from services available to her. Sounds to me like she did GREAT and not only that but you are right about the Trach hindering her speech therefore the assumption is she doesn't understand.

    I know when Austin had his EI testing last Fall I was really irritated because the tester was not speaking loudly (she had a very soft voice) or to his face all the time. I felt that he was probably a little confused by what she was asking him to do since I always make sure he is looking at me when I am asking him to do something or explain something.

    In the end Ainsley has done so many new things this past year that I am sure no one thought possible...those new things require brain power. And she's got it!!