Archive for the 'school' Category

I know my rights

March 18, 2012

picture of a book with blank pages

image courtesy of Daniel Y. Go via flickr

Chloe’s special ed teacher understands.

“You don’t need that book, right?” she asks at every meeting, at the point where she is supposed to give me yet another copy of Your Rights Under the IDEA.

I don’t know how many copies I’ve received over the years, but I know how many I’ve read: zero. In case you didn’t click the link (I don’t blame you), here’s a sample.

“As a parent you have a right to be notified in writing a reasonable time before the public agency proposes to initiate or change the identification, evaluation or educational placement of your child or the provision of a free appropriate public education to your child.”

I find it hilarious that the first thing this document says is that “in the interests of simplicity, some of the rights have been paraphrased.” So in other words, that’s their idea of putting it simply. (Though I think they meant the language, not the rights, have been paraphrased, since how do you paraphrase an intangible concept like a right?)

I can do a little better: Before the school messes around with your kid’s IEP or changes anything about the way they teach your kid, they have to send you a confusing form letter with a bunch of boxes checked.

Which pretty much illustrates the real problem–even if they are stated simply, the legal rights of a special needs parents when it comes to getting your kid educated are still dizzyingly confusing.

Booklets, form letters and legalese don’t make your kid’s education better, they just give you a basis for complaining when things aren’t working.

When it comes down to it, these are the rights that count:

  1. You have the right to find the people who will be the most capable of understanding and teaching your kid. You have the right to make sure they are the ones who are in charge of her education (as long as you remember to use the words “most appropriate placement” not “best teacher” or “that school with all the iPads”).
  2. You have the right to do the research, read the literature, attend the workshops, learn the language and employ all the psychological and Vulcan mind tricks you can to get what you think is best for your child.
  3. You have the right to throw around the terms “least restrictive environment,” “inclusion,” “research-based teaching methods,” and “my lawyer” until you have sufficiently intimidated whatever bureaucrat is causing trouble.
  4. If all else fails, you have the right to be open-minded, get a third party opinion and look at the problem from a new perspective, or
  5. You have the right to sue the heck out of your school or
  6. You have the right to move to a different, more enlightened school district, city, state or country.
  7. You have the right to throw away that stupid booklet.



March 10, 2012

picture of a tornado siren

image courtesy of wonder_al via

“Pretty much all kids with disabilities are in mainstream classes these days,” a special ed teacher said to me once. “Well, except for the severe ones, of course.”

She had never seen my daughter. A different special ed teacher took one look at her and said “She’ll be in my self-contained class one of these days. I teach all the severe kids.”

What makes Chloe severe? It’s hard to pin down, but I think mainly it’s her difficulty communicating. The fact that she can’t talk or type. The fact that, in order to take part in a mainstream classroom, she would need a lot of support from thoughtful and creative professionals.

And that’s exactly what she has. Chloe is doing great in second grade (her third year as part of a regular class). She does the same homework, takes the same tests, gets exposed to the same learning opportunities as the other kids. She even had a speaking part in the school musical, with the help of a recorded message and a large button.

So while our school district tends to judge kids like my daughter pretty quickly, to assign her to the self-contained classroom at a glance, I’m happy to report that it didn’t take much to dismantle these assumptions. All the people we worked with were very open to trying something new, to giving my daughter a chance, even though she is “severe.”

So in the end, what does that word even mean?

What are they teaching in school these days?

December 5, 2011

a student completing a "school bingo" form

image credit: Neighborhood Centers via flickr

Helping Chloe with her homework sometimes takes me back to my school days…when more than one teacher accused me of “asking too many questions.” And since Chloe can’t ask questions, I feel compelled to ask them for her.

Like right before Thanksgiving, when I wrote a note on her worksheet. The assignment was to cross out words that don’t belong in an rustic outdoor autumn scene. “Considering that the copyright date on the bottom of this worksheet is 1990,” I wrote, “I assume the word ‘telephone’ is meant to be crossed out. However, these days, when phones go everywhere and are often a family’s main picture-taking device, I think a phone is quite appropriate here.”

I guess it was more of  an observation than a question.

This evening, we read a page from a book that came home in her backpack. It has a big eagle on the cover, and the first page explains that “the people who started this country wanted freedom for everyone.”

“Well, that’s certainly not true,” I said to Chloe, and explained that it took 85 years before the United States managed to abolish slavery. Then I tried to explain what, exactly, “freedom” meant.

“I guess one of the most important freedoms we have in this country,” I said, “is the freedom to form our own opinions and explain them to people. Not everyone has that freedom.

“And that’s the most important thing you can learn in school—how to think critically and form your own opinions. Unfortunately, they don’t usually teach that until maybe college. And then it’s often too late.”

Chloe can’t do much for herself, but I’m determined to make sure she can think for herself.

Special needs parents: our own worst enemies?

October 29, 2011

through a glass door, a wheelchair is visible

photo courtesty of Tom Watchel, via flickr

Once, I heard a woman say that she was asking her son’s school to remove the post between their two front doors to accomodate his wheelchair. “The other day, his pinkie got stuck against the doorframe,” she said, cradling her own finger. “It made a mark.”

Now the idea of this kid’s little finger jammed against the door is painful, but wait–this was a front door to a school, wide enough for a wheelchair, probably wider than most of the doorways in their home. Why was his finger getting jammed? And what about all the other doorways he would have to go through, every day for the rest of his life?

I can relate to this story, because it happens to Chloe all the time. Going through doorways can actually kick her dystonia into gear and make her throw her arms out at exactly the wrong time. But was I asking our school to spend thousands of dollars replacing their doors to accomodate her? No.

At the time I heard this story, my husband was teaching at a public school, trying to help high school kids who had trouble reading. For many of these kids, financial, emotional and societal obstacles stood between them and an education, but was the school going to pay thousands of dollars to make it easier for them to get through the door?

News flash: schools don’t have a lot of money, and, for teachers who see dozens or even hundreds of needy students every day, a demand like this must sound frivolous. And this could contribute to the fact that special parents don’t always have the, uh, best relationship with their public schools.

Now don’t get me wrong, I believe in equal access: wheelchair ramps, special equipment, accomodations on homework and tests, all that good stuff. My husband and I demanded the school hire a full time paraprofessional without a twinge of guilt, because that was the only way Chloe could fully participate in a regular classroom.

But I think the low tech solution is often, maybe even usually, the best, and many parents never look for the low tech solution, if they think they can force someone to pay for the expensive one.

I used to press my fingers against Chloe’s arms as we went through doorways, until I realized that we had a great “teachable moment.” Why not use this as an opportunity for her to take responsibility for her own body? Now, we always tell her to pull her arms in when we go through a doorway. It took a lot of practice, but now she does it almost every time.

I don’t know anything about this woman’s son. I don’t know if he has the physical or mental capacity to move his own arms out of the way as he goes through a door, but it’s possible that no one ever thought to ask him to do it, and maybe someone should.

From watching Chloe, I know that kids with disabilities will put up with a lot if they don’t think they have a choice. Someone who doesn’t know he has the power to move his arms will just take the bruises and scratches, until another person figures out how make them go away.

But if you can empower him in that situation, even just by talking about it and helping him hold his hands out of the way, he just might start looking for other places where he can make choices and demand the things he needs. And isn’t that what equal rights are all about?

The Chloe Effect: Whence the Awesomeness?

September 30, 2010

the sun shining on a sunflower

image courtesty of Lυвαιв via Flickr

On Tuesday, I went to Chloe’s school to help her aide with her new swing.  The swing, which was generously donated by her grandparents and took about 7 months of public-school-style red tape cutting to get, appeared on the playground last weekend, and on Monday, all the kids were talking about “Chloe’s swing.”  Apparently, there had been a school-wide announcement about the swing, because one kid informed me that “the principal says no one except Chloe can get in the swing because it costs $600.”

As an adult, I can imagine that an insanely expensive and very attractive piece of playground equipment that is designated for the use of one student only could lead to envy and resentment, but what has happened is the opposite:  Chloe’s swing is exciting precisely because it is Chloe’s.  The fact that the other kids can’t use it just makes them all the more excited to see her in it.  On Monday and Tuesday, kids I had never even seen before came up to me to ask “When is Chloe going to get in her swing?”

And when Chloe did use her swing, she had an audience.  Thirty kids crowded around the swingset to see the launch of the Chloe Swing.  Of course, after a few minutes, they realized that it was just a swing, and it’s not very exciting to watch someone else swing, and they wandered off.   A few of them, I’m sure, were keeping an eye on her, though, because as soon as she got back into her wheelchair, they wanted to be there.

The thing is, Chloe is insanely popular at her school, and although I think my daughter is pretty cool, I can’t exactly understand the awe and adoration she inspires in her classmates.  Before she started school, other kids were usually a little uncomfortable around her, not sure of how to interact.  But at school, she is always the center of a pile of kids, like a cupcake left too close to a beehive.

Maybe it’s the novelty of her wheelchair and her communication device, I thought at first.  And, when these things are around, they are pretty popular.  Everyone wants to push her wheelchair and play with her device, but they also want to stroke her hair, hold her hands, and ask her questions (her close friends all know how to use hand signals to talk to her).

When adults meet someone with a significant disability, their first reaction usually seems to be some mixture of pity and admiration, superficial emotions that dissolve once they get to know the individual as a person.  But these kids don’t seem to have either reaction toward Chloe.  They just accept her and love her.   But the degree to which they do these things is, frankly, a little strange.

When Chloe answers a question in class, the whole class applauds.  I don’t think this is because they are surprised that she’s gotten the answer right.  Instead, they’re just impressed by everything she does.  They know that reaching out to pick a card with the right spelling word is hard for her, a real feat of strength a determination.

But also, I think they can be so openly approving of her because they don’t see her as competition, the way they might see each other.  Chloe is kind of in a class by herself; she does what they do, but in a completely different way.  She can’t argue with them, or steal toys from them.  Nothing she does could make them look bad by comparison, because she’s not like them.  Their relationship with her is refreshingly uncomplicated.

That’s not the whole story, though, because I guess I have to admit that Chloe has some kind of effect on people.  I’ve resisted this idea for years, because it sounds dubious coming from me.  After all, what mother doesn’t think her kid is the most lovable creature in the world?  But the evidence is building: the nurse who took care of her in preschool and cried when Chloe moved to another school.  One of her former teachers who says she still dreams about her and forgets that she’s not still in her class.  The adults at her school who regularly stop me in the hall to talk about her.  They are just as smitten as the kids.

I don’t know how the Chloe effect works.  She has a nice smile, I guess.  And when she laughs she bounces up and down in her chair and that’s cute.  Strangers often comment on her eyes, but don’t a lot of kids get accused of having nice eyes?  As her mother, I guess I’m somewhat immune to the effect.  After all, she can and does argue with me.  When I show up at her school, I get a “mom, you are cramping my style” glare.  Because I understand her the best, I get to see more of the less saintly, “regular kid” side of Chloe, which is an incredible privilege.

Last year, I worried that her star status at school might spoil Chloe, but now I have to admit that’s just the way things are for her.  It’s wonderful that her classmates treat her so well, but it’s a little disturbing to see her set apart from them, even if it is because she’s up on a pedestal.  Hopefully, as she gets older and more able to communicate, more and more people will see her as a “regular kid,” with all the complications that go along with that.

Peekaboo article

September 8, 2010

I’m kind of cheating this week and just posting a link to something I already wrote…in college that’s called “self-plagiarism.”  But I figured the few readers I have who are not already my facebook friends, and haven’t therefore already been inundated with my latest article, might find it interesting.

So here it is


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