Monday, October 4, 2010

Outside the lines

Ben had a rough start back to school.

He missed April, May and June in hospital post-surgery, then he had to stay home the first week because of bronchitis. A week later, he got a bad cold and missed a couple more days.

He's still hobbling around and one of the reasons is that his operated-on leg is now one-inch shorter than the other leg. This is apparently a common result of the kind of hip surgery he had, though we didn't know about it in advance. We're hoping a lift in his shoe may help.

When Ben was in hospital for so long we had a bit of a reprieve from worrying about his learning; our attention was focused on his physical and emotional care. We wanted him to survive the body-cast ordeal and weren't sure if he would walk again. That was about all we could focus on.

Now the never-ending question of how to help Ben learn is again front and centre.

The other day I had a call from the school to let me know that Ben had refused to do his “art” work and had broken the teacher’s ruler in protest. Ben isn’t able to do conventional art because his hands are so weak, small and uncoordinated (though I thought it was quite impressive that he had the strength to break a ruler!). For the same reason, he can’t write functionally. In order for Ben to be successful at an art project, it has to be adapted in some way.

I was told he would be bringing home any work he didn’t do in class from now on.

So he came home with a sheet of paper where he had to colour in some squares on a grid using pencil crayons. I sat with him while he scribbled outside the lines, because he simply doesn’t have the dexterity with pencil crayons to colour neatly inside the lines.

I couldn’t understand why Ben had been given this task, knowing it was something he couldn’t physically do. He knows he can’t do it, and he knows he can’t be successful at it.

Now that Ben is home again, I have time to see all of the gaps in his understanding and communication, but it’s hard to know where or how to address them.

In the small amount of time we have every night, do I try to teach him some new signs, do simple math, work on his reading, or encourage him to practise his keyboarding? How do I work on his reading when he can only show he knows a word by signing it, but we haven’t taught him (because we don’t know) all the signs? I ordered a math workbook but we’ve had great challenges teaching Ben math before. Is it because of the approach we’re using? Or, like the art, am I asking him to do something that he just can’t be successful at?

Ben’s intelligence can be seen when he navigates a computer to find a movie on Youtube he wants to see, or to complete a mission with Indiana Jones or Batman on his Nintendo DS. But he can’t express that intelligence in traditional ways – through speaking or writing.

And he’s so frustrated and anxious now. Anxious, I’m sure, that he’s going to be asked to do something that he can’t.


I'm going to preface this by saying I'm not trying to be preachy. My opinion on schools, especially public school, is that they aren't always the best place for special kids to learn or well even "typical" kids. Teachers have to stick to a government mandated curriculum most of the time and this means they aren't allowed to care that the students in their class are behind or ahead of their curriculum. They have to hand out the assignments whether they make sense or not for that child.

This puts stress on kids, even "typical" ones. If it's at a level they they just aren't at yet, or requires skills they just don't have, their self esteem begins to fall.

We're fortunate enough that we're able to have one of us home all the time to homeschool, and for us I think it's the best option. I know it's not the right fit for everyone. The more I hear from people who have kids in school and the more I see in the schools I work in, I am glad we've decided to homeschool.

Maybe you could talk to Ben's teacher and explain that this just isn't an assignment he can do. Perhaps the two of you could work out some ideas of things that he actually can do, or better yet, things he would like to do. After all isn't art about creativity and passion?

Louise my heart goes out to you.
Personally I would lean towards developing the skills Ben shows an interest in and those that provide him with practical skills.
A talk with the teacher about setting some shared goals should help. If you really don't think he can colour the blocks and it frustrates him, what is the point? Maybe the teacher thinks it will help develop his fine motor skills?

Hi -- thanks so much for your comments.

Ben doesn't go to a regular public school. He's in a high school for students with mild intellectual disability, in a class for kids who are deaf and hard of hearing.

Some of the kids have physical disability and some don't. I expect them to "know" that drawing or colouring with pencil crayons isn't something Ben can be successful at.

I do want to go into the school but the earliest I can meet with his main teacher is the end of next week.

Yes, art should be about creativity -- and that creativity doesn't have to be "inside the lines!"

I will keep you posted. Thanks for your support!

My heart started racing, Louise, as I read this post because I felt the tension (and perhaps it's my own projection) of "not doing enough," or "something not quite right or perfect or the best for my child." I feel like much of the school setting has been those "less than" things for my daughter, and part of that is because I'm burned out and need a place for her to be and to learn (I'm not a homeschooler) that is outside of me and our home. I've never found the perfect place for her -- I haven't even found what I would consider a "good enough" place for her, but I still have her go there, to the ineffectual school; I compromise, I am disappointed. It sort of drives me a bit nuts.

I had a hard time reading this post because it brings back all the issues I had dealing with schools and the issue of "appropriate" activities. Sophie cannot colour either...she can only do something like that for a few minutes before her arm hurts. What it is about colouring and teachers, I do not know, but, damn, they don't get it. I spent a ton of time telling them that a. colouring was not an important skill b. there are at least a dozen ways to fill in a space without having to use a pencil crayon c. how about a smaller piece of paper, folks?, etc, etc, etc, UGH!! I am truly sorry for Ben's frustration...and sorrier that his teacher doesn't know misbehaviour from an a clear attempt at communication from a student.

Oh Louise, I'm so sorry! It really REALLY frustrates me when schools/teachers don't strive to set their students up for success! It's terribly unfair that Ben is being asked to do things he know he can't accomplish, and of course he's anxious because he's being punished for NOT doing those things.

I get that the teachers are busy -- is there an inclusion specialist or aide that can adapt curriculum to make it appropriate for Ben? Can you get this written into education plan? I know you are in Canada and I don't know the laws there..

I hear you on the too little time and so much to do at night problem. I met with Oscar's teachers before the school year and gave them an article on why homework doesn't work for kids with PWS, but I think it applies to many disabilities. They were thankfully receptive. We do work on some things at home (and yes, it's hard to choose) and Oscar is doing some homework (our choice/his choice) but we adapt and shorten it. I try to avoid anxiety and frustration...because that only exacerbates his behavior in other areas.

Good luck at the meeting -- I'm hoping she hears your concerns!!

Thank you everyone for your supportive messages. I have a meeting this Friday at the school and hope to learn more then.

You're right Elizabeth. Because we haven't been able to find the ideal spot for Ben, nothing ever feels like "enough."

And Mary -- yes, we do have IEPs. But in all the years Ben's been at school, I've never found them to be properly followed and monitored. In the early years, I would spend hours reading the regular curriculum and coming up with ways to adapt it and having this all written into his IEP. But after a few years of seeing so little actually followed, and so little accountability, I gave up.

I guess my bottom-line feeling is that few teachers see the potential I see in my son.

This reminds me of the days well weeks when Abby's worker kept on leaving Abby out because Abby was non verbal. Another parent told me and I asked Kay why she was leaving Abby out of activities.

Her reason" Your daughter cant talk" didnt please me. I asked no requested Abby be included in appropriate activities.

Clara(Abby's mama)