12.12.2015

So much more

I really should be studying for finals. But yet my brain is swirling with so many things I'm thinking about, I might as well spill that out first to make space for all the stuff I need to remember. 

The funny thing about feelings, is that they don't hit you at a convenient time. Like when you're sitting down, not doing much at all and thinking "I could really use some deep feelings to resolve right about now".  Nah, all you'd get then is random musings about your dinner plans or a memory of some awkward thing you did in middle school and is of no significance now. But, when there is a really not good time for feelings to emerge, like say two weeks before Christmas and smack in the middle of finals that's when they're sure to pop up, like "hey I know you're really busy and stuff, but here's some emotional crap to work through. You're welcome". Or perhaps that's just how the mind works- when it's going well, it's going well, but when one thing breaks down, it all breaks down. 

I've been so busy lately. Final projects, final assignments and much more focus on therapy (through my studies) than we ever focus on in our daily life. Admittedly, it's a bit of a conflict of idealogies when you have to consolidate what you are learning through school with what you know of being an actual parent of a child with a disability- it's not as clear cut as presented in school. In our classes we are dealing with a lot of idealogies and theory while life seldom fits such a neat little box. Yes, these are all great therapy ideas and they have the potential to work really well... unless you have a kid who thinks they're a complete waste of their time and they are not willing to humour you or your brilliant strategies and good luck trying to convince them otherwise.  Would I happen to know a kid like this you ask? Perhaps a cheeky little lady springs to mind.

I also know that sometimes these "difficult" children do have a valid point. Why should they be working so hard really to try to catch up to some arbitrary goal which doesn't have much tangible meaning to them? Oh, we know exactly why, but try selling them that story. And I guess this sort of brings me to the feelings part of the whole story. As feelings do though, they are rarely linear so might not make as much sense here as they do inside my head. 

Last week, we received Sophie's IEP report. We were expecting it, but seeing pages (and pages) of Sophie's perceived deficits was still a punch to the gut. The thing about these reports is that they are based on data- I know all about data as I studied data taking and report writing extensively this semester. We were told that if "it isn't recorded, it didn't happen". However, what is recorded is very, extremely narrow. In terms of data, information is clinical and concrete- did the child (or client, as we are to refer to them) attain the target objective? What percentage of the time? Do the goals need to modified (either made harder, or simplified). 

Where is this on the report? 
There is no place on the report for supplementary information about this little client- what is she like, what does the time spent with her look like? What makes her laugh and be silly? What does her family love about her? How significant really are the deficits in her daily life? What strategies has she so brilliantly developed to go around some of them?

I read this Facebook post by one of my favourite bloggers. She examines this concept a lot and it always hits home. Especially the part about having to do it to her, and not her siblings. How awful would our typical children feel if their report cards only stated negative things about them? Yet their feelings are spared by a perpetually-positive spin on even areas they need to improve upon (my son for example "sometimes manages to be organized and remember homework assignments on time". ahem). Our disabled children of course are assumed not to be able to read their reports and so they are written for the purposes of the therapists, teachers and random bureaucrats which might happen to read them. Which might be a fair assessment, but yet is another way our children our excluded. Why shouldn't they get reports in which teachers painstakingly turn everything they do into a skill and a learning objective? I have stacks of my older kids' kindergarten reports and while they couldn't read them either, they were saccharine-sweet and encouraging. Were they meant to be encouraging for me then? Why shouldn't Sophie's report be? Questions is all I have, don't ask me for the answers. 

Of course, I know the purpose of these reports. They are a gateway between our kids and services. A concrete piece of evidence to wave at an administrator and say "look! my child has trouble transitioning 5 out of 5 days! She needs more support, her teachers need more support!"

Parents of disabled children know their kids are disabled, we know where they "lack". My hopes are not for her to miraculously stop being disabled all of a sudden. But what I would like for her to have is a place where she is seen as Sophie- a little girl, who is sometimes stubborn, often willful, who prefers to do what she wants (really, what 5 year old doesn't?) but who is so, so loved and makes her family so proud. Who has come such a long way and learned many things that might not be measurable in terms of percentages but which are a testament to her cleverness and problem solving. 

It's not just the IEP- it serves its purpose presents a quantifable summary of Sophie in an educational setting. It's witnessing the subtle (and not so subtle) differences in how she is treated compared to her typical peers- constantly measured, analayzed, evaluated and always coming up short. 

Feelings though, they're not measurable and they don't contribute anything meaningful to the situation. If I can leave a parting thought to this rambling mess is- take the reports with a (big) grain of salt. Don't let them distort how you view your child. File them under bureaucratic exercises and put those "not yet able" phrases out of your mind. You know your child best and she is so much more than what's in those reports. 





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