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Terri Mauro

Whose Job It Is to Care

By March 28, 2012

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Stop Sign"You're not concerned about LaKay."

That's a line from the transcript, on the Ams Vans blog, of a conversation between the mom of a five-year-old with cerebral palsy and the special-education director who doesn't think it's safe for the girl to use a walker at school after one fall in the parking lot. But while it might seem to most of us reading this that it's the school that doesn't care about this child's progress, according to the transcript that line was in fact said by the special-education director to the mother -- apparently, in the school's view, not wanting your child to fall is a greater measure of parental concern than wanting your child to walk if she can. (As if learning to walk for anyone doesn't involve a large amount of falling.)

I'm well familiar with that attitude, having come up against it when I wanted my daughter to move into an inclusion class years ago. The child-study team was absolutely certain that she would fall if pushed into the mainstream. They told me it would destroy her. Her issue wasn't walking, and the choice for us was not between a wheelchair or a walker but between a self-contained class where she was encouraged to be dependent and a mainstream class that would force her to learn and grow. Still, the message was the same: I wasn't concerned about my child. If I was concerned about her, I would not allow her to fall. If I was concerned, I would make things as easy and safe as possible. Forcing her forward was thought to be more about my ego-tripping and misplaced ambition for her future than on concern; the concerned individuals were the team members worrying about this poor fragile spirit.

Well. I won that fight. And I suppose my daughter did fall a lot, and she was certainly the one who got hurt over the years of struggle and growth, not me. But she's walking now. She's driving a car, she's going to college, she's looking forward to work more mainstream than any that child-study team ever imagined for her. In the long run, I think removing excess support was the best thing for her. It certainly did not reflect a lack of concern, though it was perhaps long-term concern instead of short-term concern. In the short term, sure, you don't want the kid with a walker falling, you don't want the kid with anxiety issues crying and unhappy. And maybe we can excuse schools a little for thinking short-term, because that's all they have our children for.

But man, that means parents have to be the bad guys, doesn't it? We have to be the ones believing the kid can walk, and pushing the school to allow the walker. We have to be the ones believing the kid can think and learn, and pushing the school to push. (And also, the ones making sure the pushing is appropriate, resisting when the school decides to take away the wheelchair and the walker both and make it impossible for our child to get around at all.) One of the most frustrating things I see now, as my son prepares to graduate high school, is how many of his friends from self-contained classes are suffering from years and years of unambitious goals and safe planning. In keeping them from falling, the school has kept them from rising. What's that saying? No pain, no gain?

Here's hoping little LaKay gets to keep her walker. And the rest of our kids get to walk, and run, and fly.

Photo by Brendan Smialowski/Getty Images

March 28, 2012 at 4:22 pm
(1) sylrayj says:

I wrote an email to LaKay’s school superintendant. I mentioned that not only are there health issues from being confined to a wheelchair, but there is also motivation and self-esteem from being mobile. I said that I know they want to consider the long-term effects of promoting independence in LaKay, because that’s what good teachers do.

I can only hope that they are able to look to this girl’s future. My fear is that they’re afraid of a lawsuit if her walker should collapse while in the care of school staff, thus they will do what they can to make sure that cannot possibly ever happen. What a world…

March 30, 2012 at 11:13 pm
(2) John Pagano says:

Really good to read something from someone with some positive long-term results. My son has cerebral palsy, and we’ve been faced with similar situations and decisions. It can be tough, and I think LaKay’s situation is just heart breaking. It seems to be an extreme case of the school erring on the side of safety and thinking too much about possible insurance claims, as opposed to what’s best for the student, and that’s a shame.
One thing that’s help me in the IEP meetings I’ve had is to try and be as objective as possible, and have some kind of documentation to back up any points I have that may differ from what the rest of the team is suggesting.
Ultimately, it’s all about encouragement and growth, and that should be universal for every student, special needs or not.

May 11, 2012 at 11:13 am
(3) specialchildren says:

Bringing documentation to an IEP meeting is a great idea, John. For parents who want to do that, I’ve gathered some resources for a bunch of different disabilities, and have particularly tried to locate printouts from schools and other educational authorities, since they may be more convincing to IEP team members than those from more general websites. You can look up your child’s disability at http://specialchildren.about.com/od/specialeducation/a/schoolprintouts.htm to see what I’ve been able to find.

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