Wednesday, February 9, 2011

The assessment

I met with the psychologist yesterday. She had been doing some testing to see whether Ben was capable of academic work -- at his own level -- as we try to find a better school placement for him.

She used multiple choice, picture-based tests. The first test showed a picture and four different spellings of the item (e.g. glass, glase, glas, glash). He scored at a Grade 3 level.

She then did a reading comprehension test where he had to read a sentence, then turn the page and identify the picture that best illustrated the sentence (e.g. "It is a surprise to see a bus bringing chickens to school."). He scored at a mid Grade 3 level.

His overall score for single-word vocabulary had fallen to a Grade 2, although he knew a number of more sophisticated words in certain areas (e.g. hatchet, mammal, constrained). This score had dropped from when he scored in the average range at age 9.

He did poorly on language tests where he had to follow concepts and multi-step directions because of his poor memory. He simply can't hold information in his head.

The psychologist was pleased that he's retained his ability to read since the school has put no focus on it for three years -- she thought he might have lost it.

She feels he has a mild developmental disability but that in certain areas he scores higher, in the slow learner range. She feels his multiple disabilities make it hard for him to access his potential.

She does think he should be focused on reading, writing and numeracy -- on academics at his level.

I managed to get to the end of the session before I cried, thinking that he is about to turn 17 next month. It was then that I asked: "Is there anything else we could have done to help him?"

I know there isn't. I know we did everything we could. The only thing I regret is not following his schooling more closely in the last three years.

To us, I said, he is precious and unique, with eclectic and quirky interests.

"He seems happy," she said.


That last bit - priceless.

How good(!) that he was finally assessed for his ability to read, and that he had not lost his ability to read.



You're not going to believe this, but Ben's learning difficulties are similar to my own. The only difference between me and the psychologist is, I know how to help Ben --I'll even climb your 29 steps to it!!!


It's funny, but as I read your words, I felt elated -- until I got to the end and saw that you were crushed. I don't know what that means other than it's all about perspective. And I don't mean the comparison of your son and my daughter, either. I think it's more a perspective that Ben is actually reading and that though his progress might be stalled, it seems as if he could take off again! There are so many amazing reading apps on the iPad -- is there a chance that he could use that? Please don't beat yourself up over the "lost years." The brain is an amazing and mysterious organ -- much can be learned and gained in a lifetime. But you know that (and I know why you were upset). I just want to cheer you up a bit --

Thank you everyone for your wonderful comments!

Elizabeth -- a part of me was elated too. Considering everything, it's a miracle that Ben is able to read.

I hate any kind of testing because it's always about comparators and testing against the "norm." It certainly doesn't get at the spirit of a person.

Assessments do help from time to time and I'm glad your son had his. They are hard to listen to though aren't they? Remember don't let these (normative) tests define who your son is, he is so much more than a score on a piece of paper, written up by a stranger. :) Your support and belief in him will take him many places. That's truly what matters. Keep smiling, you're amazing.

Honest and moving. My younger brother, Willie, has autism. I know that place between wondering if you could have done more and simply being proud of him for who he is. (He’s the inspiration for ‘disability as opportunity’ at:

I appreciate your sharing; thanks again.

Thanks for sharing this, Louise. It's comforting to remember that our kids always continue to learn. That's great that Ben has some solid reading, spelling, vocab skills so he can continue to learn and thrive. And good for you for advocating for him.

Thank you Lou and Amy and Caroline! Your support is greatly appreciated.

I encourage everyone to hop over to Caroline's blog for a fascinating sibling perspective. She is also a program director at a L'Arche in Washington:

Louise, I know you know that knowledge and learning styles and how well one functions in test mode are different things. What's important is figuring out how to help Ben learn about what interests him. As for the ability to hold information in his head, he didn't forget how to read---- quite a bit more significant and useful than retaining test instructions. If I'm cooking from an unfamiliar recipe I swear I have to look at each step about a million times, even though I read it just a minute before, so I can relate to Ben's flustery state of mind during testing.

I always really liked neuropsych assessments...It was nice to see my progress from one assessment early on, to another a few years down the road. At the same time, it can evoke a whole much of other emotions too. It was hard to hear that my "cognitive profile of strengths and weaknesses has remained fairly consistent across two separate neuropsychological assessments, although she continues to make gains in her cognitive functioning..." They explained that it basically meant that even though I made significant improvements, my strengths are still strengths, and my weaknesses are still weaknesses. As much as I was happy with the progress shown, the other stuff she said was still hard to swallow. I've always had this "fix it" mentality that I can't shake, and like you, wonder if I really am doing everything I can.

The good thing about Ben's assessment is the psychologist's recommendations! If she recommended an academic program at Ben's level, I think it's great that it will be in writing for your quest for a program change for Ben.

The psychologists last comment....

I guess we all ask the question "is there more we could have done", it's a killer. I think there are always different roads we could have taken or take, but it's not the same as more or better, just another way of getting to where you are.

I can't help but think that if Ben has learned something in the past but forgotten some of it, that he can get back to that place, and probably quicker than the initial learning. Does Ben like comics? I remember you saying he likes Star Wars (I like comics myself, there are not just for young children!).

Hoping you find the right school placement soon.

(love the photo, Ben seems so absorbed in what he's doing)

Hi A -- Thanks for your kind message. I think Ben enjoyed the testing this time, until it was the more complex language stuff that he finds difficult. I have to say, though, that when I see some of the IQ testing, I'm just glad that no one's testing me now!!!

Hi Irene -- Thank you so much for sharing. I wonder -- wouldn't it be similar for most of us as adults, that we would pretty much maintain our profile of strengths and weaknesses over time? I guess I think of big changes happening in childhood. I think it's easy in our culture to get swayed by the "fix-it" mentality -- that somehow we're never enough wherever we currently are. But I think of all of the things they can't measure in psych testing -- things like who you are as a person, having travelled the remarkable journey you've been on. How would you compare the person you are today in terms of compassion, wisdom, strength and perseverance with the person before your brain aneurysm and rehab?

By the way, I spoke to the folks at Mary Ward. There is a wait list for next year, so it doesn't look very hopeful for Ben. But I'm hoping to go for a visit. I'm very grateful to you for sharing this program with us!!

Hi Emma -- Good point! I guess we could all benefit from appreciating where we are right now.

Yes, Ben does like comics. And in the pic he is doing a secret message. I make them about things he's interested in (e.g. tapirs or Harry Potter).

Great to hear from you and hope Dimitri is well!

You wont believe it but the tests Ben did was the same one I had my daughter do. She was below Grade 1 in all tests except vocabulary where she was mid grade 1.

Still, I was impressed she was able to do reading, spelling, writing and basic maths as she had severe brain damage.