Wednesday, January 03, 2007

Check one: Don't Know, Don't Care, Doesn't Matter

I'm doing my best to complete the next round of paperwork for Bud's appointment with the new child development clinic, which has been moved up to February. As always, I'm struggling to figure out how to use a standardized assessment to describe my delightfully nonstandard son.

The assessment that's giving me the most trouble is the "Child Behavior Checklist for Ages 6-18." It seems to be designed as a general, global assessment tool, and is not specific to ASD. It asks me to respond to questions by checking the box by the answer that best reflects my view of Bud's behavior. The problem is, the boxes it provides are entirely inadequate.

The assessment starts by asking me to list the sports and activities that Bud enjoys, and indicate how well he does each "as compared to others of the same age". The boxes are marked: Below Average, Average, Above Average, and Don't Know.


I list some activities, though if I really want to describe the things Bud likes to do I'll need more than an inch-wide space. Then I start checking boxes. For most of the activities I check "Don't Know." I'd like to check the box marked "Differently From," but it doesn't exist.

I move on to the next question, which reads: About how many close friends does your child have? It's followed by boxes marked "None," "1," "2 or 3," and "4 or more."

I have no idea how to answer this. What does this mean? How are we defining "friend"? How are we defining "close friend"? Does physical proximity mark the difference between the two? Is a friend "close" only if we spend a lot of time together? I think about VTBudFan, whom I haven't seen in about five years, but whom I consider a very close friend, and I rule out proximity as a defining feature. So, what are the defining features? A spiritual connection? A mutual understanding? Just a feeling?

How can I begin to assess the depth of feeling that Bud has for the other children in his life? Or theirs for him? We don't have playdates with the children from school; Bud is not interested in having them. Yet, there is genuine affection between Bud and Kelly, Bud and Lily, Bud and Sophie, Bud and Michael, Bud and Clay... Bud and a number of other friends at school. How can I - why should I - try to qualify and quantify? It is what it is - and what it is, is wonderful.

I scribble a note in the margin, leave the boxes blank, and move on to the next question.

Compared to others his age, how well does your child:
Get along with other kids? Worse, Average, Better
Behave with his parents? Worse, Average, Better
Play and work alone? Worse, Average, Better

I resist the temptation to tear the paper in half. I breathe deeply, pour another cup of coffee, and take them one at a time.

Compared to others his age, how well does Bud get along with other kids?

Well, that depends on what we mean by "get along." Does he initiate play? Not really. Does he have sustained conversation with them? No. Does he engage in games with complicated rules and turn-taking? Not without a lot of assistance. On the other hand, he has never once (to the best of my knowledge) hurt another child's feelings. He has never been mean. He has never been aggressive. He has often been kind. He makes other children laugh. He makes them feel good. Children want to be around him.

So what answer is that? Average? Better?

I scrawl another note and move on.

Compared to others his age, how well does Bud behave with his parents?

How do other seven-year-olds behave with their parents? I have no idea. Frankly, it seems to me that there is no universal standard of "behavior" that parents use to assess their children, and "good" is a slippery, subjective classification for it. There are a lot of unreasonable parents out there. I've seen them in the grocery store, yelling at children who seem perfectly well-behaved to me.

So, I wonder, is this question asking about Bud, or is it asking about my husband and me? Is it asking how well-behaved Bud is, or is it inquiring about the extent to which Bud's actual behavior matches our expectations for his behavior?

I decide it's the latter, and I check the box marked "Better."

Compared to others his age, how well does Bud play and work alone?

What exactly is our goal here? Are we seeing the ability to play alone as a goal-worthy outcome? He's autistic, for goodness sake. Of course he can play alone. And work alone? What am I being asked to measure? Willingness to work alone? High. Productivity when working alone? Varied. Task-orientation or focus when working alone? Depends on the task.

I scribble again in the margin and leave the boxes empty.

I finally reach the end of the "compared to others his age" section of the assessment and I breathe a heavy sigh of relief. I hate the "compared to others his age" section. It runs counter to my entire philosophy of parenting. In Bud's early years, I tried not to compare him to others his age. Now it doesn't even occur to me to try. I compare Bud now to Bud yesterday, and to Bud a week ago, a month ago, a year ago. And by that standard, he is More, Better, Advanced, Above, Beyond.

In the next section, I'm asked to assess Bud's performance in academic subjects: Reading, English, or Language Arts; History or Social Studies; Arithmetic or Math; Science. The boxes read Above Average, Average, Below Average, Failing.

Seriously? Failing? What would it feel like to check a box marked "Failing" when assessing your own child? I will never know. I scan for a box marked "In Progress." There isn't one.

I plod through several additional pages of more of the same, and I do my best to answer honestly within the rigid boundaries that the assessment provides. At the end, I have a document that reflects some shadows of my son, but captures none of his essence.

I'm reluctant to stick these papers into an envelope and let them be the only representations of my thoughts about my son that this clinic has on file. If I really want them to understand my assessment of Bud, maybe I should send along the URL to this blog. Or maybe I'll print out a few blog posts. Like this one. Or this one.

Or this one.


Wendy said...

I SO feel your pain. I'm filling out gobs and gobs of paperwork and checklists for an appt C has tomorrow with a neuropsychologist. I'm putting it off though because I don't know how to answer half the questions. I know my son better than anyone in the world and I'm asking other people how *they* would answer these inane questions.

Good luck! :)

kirsten said...

ugh. i would be wary of a place that sent out that checklist! i would definitely send/print this post. when i took my kiddo for his first appt i wrote down everything i could think of to describe him. all the tiny quirks, everything. i took that in. i figured if they didn't want to read it i would at least have it to remember what to tell them. turns out she did read it and loved the info - as did his preschool when he started. you've been through this before, though, i'm sure you have it all under control.
stupid checkboxes...

for what it's worth said...

I used a form 4 years ago when we were applying for support for one of my student's. While it by no means was perfect, it was much more comprehensive and allowed for deviations to the typical a) b) c) answers, like the one you are doing now.
My girlfriend who is a PhD. in Ed Psych and a wonderful principal, used the same feedback test recently with a number of student's in her school when applying for extra funding and support. School goes back in up here next Monday. I will call her and ask for the actual name of it and see if we can't get you a copy asap, if you're interested. Most of the tests we get in Canada are written in the US and recognized in both countries.

mcewen said...

Oh I'm so glad I'm not the only one who gets completely bogged down in those. I'm always 'move on to the next one, come back to that one later.' It's all so subjective and you know that as the 'care giver' your [my] answers are inevitably skewed. It's not just that you're trying to give the right answer, a helpful answer, an accurate answer, an answer that directly conveys the complexity underlying the most simple of questions.....I'll stop now.
Cheers and lots of luck

Mamaroo said...

I hate those assessments. I always struggle through them. I leave a lot blank. Like you, I just want to attach my own description. My words can not even do justice to who my boy rally is.

gretchen said...

Argh! I have always been terrible at those checklists. I always rate my son too "high" because I think he is perfect in every way!

I asked his teacher if she thought some of his behaviors were related to sensory needs and she said she would ask the OT. Then they sent home a sensory profile for me to fill out- I am putting it off.

Kristina said...

I haven't had to fill one out in a while----I often start circling two boxes or writing in asterisks or adding another of my own....

bethduckie said...

I recently rewrote my parent report for A's Annual Review.(UK) the last one I wrote was 5 years ago and it was in pretty dire need of an update.

Reading that, it reads a little like your form and my responses seem cold and clinical, yet I was praised at the time for writing such a thorough and accurate report.

I like my recent one better but I am concerned it will be misused to not give A the assistance he needs. On the other hand, I dont like what I have written on the old one... 5 years ago I had very different ideas about autism and some of them were not that pretty.

With the parent review, there was a form that most parents use but it was also acceptable to write your own report, which I did... 13 pages. *grin* I'm wondering if this would be an option for you.


VTBudFan said...

OOOH, I feel famous! :) (Has it really been 5 years?!)

I like the idea of writing in your own boxes on that damn form. I hope the people there would be responsive to feedback about what it is like to have to try to fit a whole amazing kid into those little checkboxes.

By the way (this is way off-topic, but...) we are eagerly awaiting your review of the "Love" album! I just loved Get Back!

Daisy said...

One of my pet peeves is the oral interview. I am hearing impaired, and I'd rather fill out these things on paper instead of having to ask for repetition and make sure I get the questions right.

Moi ;) said...

This is a place you should avoid. They are clueless about autism, or they wouldn't have given you a test like that in the first place.

Do you Have to go to this place? Or do you have a choice?

The wrong place can actually set you back - he loses progression time, you lose your own time. Is there any way I can help? I am good at snooping out this kind of thing. ;)

Anonymous said...

Actually these types of forms are the very typical way of gathering information from the parent. There will be lots of other assessments done that take into account what Bud CAN do, not what someone THINKS he can do in relation to his same aged peers. So don't worry that much about this one assessment. It's only one part of a big picture.

I admire your time and effort you put into the assesment. I have parents who don't want to take the time to even read it, so they go down just marking something, anything, just to say they are done. While it is only one part of a big picture, that still isn't very helpful.

In my opinion, what you have done is the MOST helpful. Just recently, I had a student's doctor send me a behavioral rating scale. The child is almost 7 and in kidergarten for the 2nd year in a row. Of course at this time he can do somethings average or above average when compared to his classmates. However, when you think about his age, and in comparison to same aged peers is very far behind. So, I, like you, chose not to mark and box and made notes all over the place. When I was done, this doctor had herself 4 pages of handwritten notes and about 5 stickies stuck all over it, and only about 1/2 the boxes marked.

The good thing is this child's behavior improved greatly after I turned my info in based on the issues we were having at school. His mom says he was not placed on medication. I hope he wasn't and that he started acting more age appropriate and is now getting down to the bussiness of learning. But it does leave one wondering.....

Good luck! You are doing the best you can!!

mom-nos said...

Thanks for the offer, Moi. I actually have a lot of confidence in this clinic, despite my frustration with this particular piece of paperwork. Bud's visit isn't one to assess whether or not he has autism - that's not in question - so a specific "autism assessment" would probably not be especially useful. I think they're using this tool to make sure they're not approaching Bud with tunnel vision, and over-attributing everything to autism, if in fact there are other issues that need attention. As the child psychologist we saw a couple of years ago said, "Just because you sprained your ankle, doesn't mean you don't have a headache."

Em said...

My wife and I have completed so many of these stupid forms. They never accurately reflect our son. It's not possible to do that in a multiple-choice format. And I've even given up on notes in the margin. I need more room. Now I write a page and staple it to the form. Let them read that!

MOM-NOS said...

My apologies. I need to disable comments on this post, because it is getting innundated with spam. If you'd like to comment, please feel free to use the comments section of any other post!