5.25.2010

Maybelle and preschool--this one less theoretically exploratory

We just found out today that Maybelle was accepted to our first choice preschool, Trinity Montessori.  Due to this blog's diverse readership, I won't--at this time--explain our thoughts about the fact that it's a church school.  Instead, I want to explain what made this school our top choice.

In my first blog post about the preschool situation, I said we hadn't decided.  I was really pleased with how well the administrator at the school I blogged about listened to what we had to say, and I got a sort of activist buzz that made me think we should go to this school and help diversify it.

Love me some jelly on toastIn the time since then, I've reconsidered.  Here's the deal:  Trinity Montessori already has two students with Down syndrome who have been there for a few years, so when we told the staff that Maybelle has Down syndrome, they said, "Okay!"  No concerned faces, no questions about whether she'd be able to keep up, no suggestions that we put her in the infant room or hire a shadow to follow along behind her.  It's as if we told them that Maybelle is left handed, or prefers to wear t-shirts with monkeys on them, or makes a mess when she eats jelly on toast.  Their tone was very much, "Yep, we can do that.  Can't wait to meet her!"  They took us to the classroom where Robert and Joe--both of whom have Down syndrome--are students, and we saw that these two kids were fully included in their classes, doing exactly the stuff that the other kids were doing.  No shadows, no weirdness, no iffy vibes.

I do love the activist buzz, and Biffle, Maybelle, and I are going to have lots of activism to be involved in.  But as a friend who has a child with a disability reminded me yesterday, we don't necessarily need to seek these activist opportunities out.  Sometimes it's nice just to relax, knowing that the people taking care of our daughter know what they're doing and don't need our coaching.

I'm just thrilled that we got a spot!

5.21.2010

Thoughts on "What Would You Do?"

There was a spot on 20/20 this week that I watched online today.  The spot, called "What Would You Do?", features actors in a check out line at the grocery store who verbally harass another actor, playing the bagger.  The point is to see what the actual shoppers at the store think and do when they witness this harassment happening.

Although I think they were trying to do something good by making and airing this spot, I have some problems with it.  Obviously it was very painful for me to watch the shopper actors harassing the bagger actor, even though I knew it was acting.  It was particularly painful watching the silence and even complicity of other shoppers, who didn't realize this was acting, and didn't necessarily think it was a big deal that an employee with Down syndrome was being verbally abused.  This was the point of the show:  to demonstrate that ordinary people in the world will witness injustice and do nothing.  Not necessarily a surprise, but a huge bummer to see documented.

But another, subtler, problem is how the show celebrates shoppers who spoke up.  While I am very glad they spoke up, there was a way in which these shoppers--like the woman at the end, who's introduced by the narrator saying, "No one responded with more eloquence than this woman"--talk about the employee but don't fully humanize him.  I agree with everything the woman at the end says (she, in fact, does say that every human being deserves education, a job, a chance for a meaningful life--all stuff I'm fully on board with), but she doesn't include the bagger as a participant.  In a lot of the show he becomes a kind of "it," a poor powerless victim who needs support and advocacy.  Very few people make eye contact with him, or look at him at all, even if they're speaking in his defense.

The one guy I thought challenged this framework wasn't even in line.  He comes up out of the middle of the store, tells the harasser to leave, and then--most importantly--comes and stands beside the bagger and talks with him.  He says, "Sorry about this guy, man.  You doing okay?  You're doing a good job."  He clearly sees the bagger as a fellow human being with whom he can and will connect. Turns out this guy's sister has Down syndrome.

Another blogger who posted about this show wrote, "Even the smallest baby with Down Syndrome is born with a backbone."  I love this quote, and the show made me sad because it was set up in such a way that the bagger actor didn't get a chance to demonstrate that, to step out of the victim role. 

5.19.2010

It's good to be reminded of what you believe

Believe it or not, I'm rereading Girl Zines because I'm being interviewed tonight, and I was afraid that--given how long it's been since I wrote it, and how much has happened of late--I might be rusty on the details.  I just hit the following sentence:

Indeed, that's one point I want to stress:  challenges to the realm of the symbolic matter, even if they don't immediately result in changed material conditions.

I'm having this lovely moment of feeling, Yes, that's exactly what I believe!  That belief is at the heart of some of my plans for writing about disability, and Maybelle.  Just thought I'd share the surprise of being reminded--by myself--of a core scholarly tenet of mine.

5.18.2010

Alison at Girl w/Pen again

Just wanted to alert you to the fact that my latest post is over at Girl w/Pen.  It has nothing to do with preschools, although disabilities and the brain tumor do show up.

I also wanted to let you know that at least one more preschool post is in the making, this one addressing some of the fascinating observations and questions offered in the comments to Preschools, #2.

5.14.2010

Preschools, #2

"If justice requires it, we must bend all our efforts to make sure that it is done, even if it proves costly."  --Martha Nussbaum, Frontiers of Justice

In her comment on my last post about preschools, Jims said,
The walking requirement is really odd. What would these schools do in the event that they have prospective students who will never walk or whose walking ability will always be limited?
What an excellent question!  One I myself considered as several different preschools objected to the non-walking Maybelle being in a class with 18 month to three year old kiddos.  The walking prerequisite is rarely specified in writing in the preschools' paperwork, but it's generally voiced as you're getting the tour--and I will specify that it's voiced after we've let the staff know that Maybelle has Down syndrome.*  "Yeah, the kids need to be able to walk," the staff will tell us.  One place even said, "You can see that they have to be able to carry their own stuff around."  A common refrain was, "We just don't have the resources to carry the kids around."

Walking with RachelNot having the resources.  Jims' question came to my mind on every single tour we did:  what if Maybelle didn't have Down syndrome but were a kid born without legs, or with lower-body paralysis?  Would she simply be excluded from this school?  Would she have to stay in the infant classroom through high school?  Study for her SATs while around her, little sweet-faced infants gnaw on their pacifiers?  I never asked these questions out loud (in part because I was trying to make a happy parent good impression), but I strongly suspect that the answer would be, "We just don't have the resources."

What does the need to walk really mean?  The kids have to be able to get around.  Aren't there many, many ways for kids to get around?  In a wheelchair, for instance, or, in the case of a certain member of our household, by very eager and enthusiastic crawling?  These schools demand a certain kind of kid, a kid with a certain kind of skills.  This kid, and those skills, are defined as "normal," and "normal" doesn't require extra resources.**


At one of the schools we toured, I was very happy to hear about a program they've instituted to include children on the autism spectrum in each of their classes.  In fact, I was delighted!  This piece of information immediately put this school on the top of my list:  not only are you believers in full inclusion, but you are actively making an effort to make this a strength and a contribution of your school!

The person giving us the tour said, "Yes, and you'll see that in every classroom the child with autism has a 'shadow'--an adult assigned to help with his or her special needs."

I thought, well, okay.  The kids I saw didn't seem to need all that much extra adult attention, but couldn't hurt, right?  "And the shadows are staff members of the school?" I asked.

"Well, not really," our tour guide said.  "The families of the children with autism pay the salaries of the shadows.  That's one of the requirements for their kids to come to the school."

Ummm...so these parents are shelling out somewhere in the neighborhood of $950 a month for their child to be in one of the best preschools in Charleston, and then they're paying the salary of a full-time nanny for their child, as well?  I was appalled.  I am appalled. The more I think about it, the more appalled I become.

And this wasn't the only school with this policy--at least one other school we toured also had a "shadow" program for their kids with disabilities.  These schools have obviously decided that the resources needed for kids with disabilities are full-time adult caregivers, and that the people responsible for providing these resources are that child's parents.  These schools didn't, for instance, decide (like our #1 and #2 school choices) that shadows are unnecessary.  They also didn't decide that, if extra care is needed, they'd charge every family in their school a little more so that the cost would be shared.  They didn't decide that it's the right of every child to receive the best education possible, and that the responsibilities for this right should be shared.


I get that the schools we're examining are private schools, so they've already decided that it's not the right of every child to receive that excellent education--only children from financially comfortable families.***  I also get--hurray!--that our public schools are required to provide individualized support for Maybelle and every other child, no matter what needs they have.****  But the thing I'm wrestling with here is justice.  Not resources, but justice.  Resources are squishy, fluid, can be defined and directed in many ways.  Justice has a little more stability, and is far more important.  It is the right thing for our educational systems to treat all children as worthy, and to question how their resources can be used best to meet the needs of each individual child in a classroom.

*The fact that it's not in the paperwork and not mentioned initially suggests to me that these schools haven't necessarily considered this normative standard they're imposing on their kids.  It must just seem obvious to them--"Of course all 18-month-olds can walk!" 
**When Biffle and I attended Buddy Camp last summer, a camp for kids with DS and their friends who don't have disabilities, there was one kid there who did, in fact, require the attention of one adult the whole time.  And guess what:  he was one of the typical kids.
***Rest assured that I'll have another post about this.
****I know, although not yet from personal experience, that the public schools don't always do the greatest job of working with kids with disabilities, but the fact that it's their mandate is certainly worth celebrating.

5.08.2010

Preschools, post #1

For the last couple of weeks, Biffle and I have been touring preschools in the Lowcountry.  Starting this fall, Maybelle will be going to preschool, and we want to find the absolute best place for her.  This process has been revealing to me.  I've had a lot of thoughts, so I suspect I'll have more things to say than just in this post.

ReadingBiffle and I have discovered we are big into the Montessori vibe.  This isn't much of a surprise, really--we're the ideal Montessori family.  We love free-form education, geared toward the strengths and needs of each individual child, following children's lead in becoming independent people of their own, and this seems to be what Montessori schools are based on.  The school we toured last week was our third Montessori.  The staff seemed great, the school was wonderful, the kids were happy.  But being the parent of a kid with a cognitive disability has made me aware of a lot of things that probably wouldn't have even crossed my mind to investigate before Maybelle came along.

While the staff at this school said that they were fine with a child with Down syndrome becoming a student at their school, they didn't have any other students with Down syndrome.  The administrative person who gave us our tour wasn't completely sure that Maybelle would be a good fit for the toddler class, since Maybelle doesn't walk and all the typical kids in the toddler class--18 months to three years old--do.*  This woman suggested that it might be best for Maybelle to start in the infant class when she starts preschool in August, so she showed us the infant classroom.

This was an adorable room, and just as in the toddler rooms, the kids there seemed happy.  But it was immediately clear to me on looking at their faces that these are babies, and Maybelle is not.  They had sweet, vacuous baby smiles--their facial expressions were different than Maybelle's.  They had stuff to play with, but it was mostly squishy, simple stuff.  This was what I recognized at once:  although many of the folks in the infant room are at the same level of physical development as Maybelle--sitting up, beginning to learn to pull up and walk--she is cognitively in a different place than they are.  We know that Maybelle is and will be both cognitively and physically delayed, but her cognitive development is really rolling along quickly.  She's communicative, through sign language and vocal speaking.  She is incredibly curious.  She is doing what her occupational therapist calls "impressive emergent reading."  She needs to be in a classroom that will encourage her intellectual and physical development, not in a classroom that is geared toward where she's most delayed.  She needs to be with the toddlers.

We met the person who runs the school.  He seemed...nervous.  Uneasy.  To my great relief, he went ahead and voiced these feelings rather than just pretending that he was fine, because he gave us the opportunity to talk.  We told him what Maybelle is like as a person--how social she is, how hard she works, how much attention she pays to the world around her.  I told him how strongly I felt about Maybelle being in the toddler classroom.  We told him why the Montessori model is a good fit for us.  He asked us questions:  is Maybelle learning to walk?  Does she crawl or just sit passively on the floor?  Can she play by herself?  His questions made me think that he doesn't know a lot about kids with ds, so I was glad that he went ahead and asked them.

And the thing that meant the most to me about this school visit was that he listened, and he believed what we told him.  Although the administrative person who gave us the tour had suggested that Maybelle (unlike the other toddlers at the school) might have to come in and be assessed**, by the time we left the meeting with the head of the school, he said he didn't need to meet Maybelle, that if we wanted to enroll her, we could.  He seemed much more relaxed, and I felt a little bit of an activist rush, like there is room in this school for Maybelle to help folks to understand and appreciate a different kind of diversity than they currently have.

We still haven't made our decision about the fall.

*I will have more to say about this whole walking prerequisite in a later post.
**Notice the potential double standard.  This wasn't the only place where we ran into this.  I will have more to say about this later, too.

5.03.2010

Things you need to know about contraception

To cheer up your Monday, please check out some of the videos made by a CofC WGS scholar and activist.*  I particularly love the videos called "Male and Female Condoms--Have You Met?", "Condom Love," as well as the classic, "Emergency Contraception."  Since I know a lot of different folks are reading the blog these days, I'll give you the advance warning that this student is knowledgeable, confident, and has a healthy sense of humor, and those qualities come through in the videos.  Be prepared to learn something.

*Just fyi, these fabulous videos were not part of her official course work.

5.02.2010

Ylabal Ylabal PPHhhhtttTT!

This morning we ate breakfast at the Waffle House. Alison and i have discovered The Ween likes food better in restaurants. Could be because of the fat content, could be because she likes the social atmosphere, but it's probably most likely due to her happy association with home as Place-To-Eat-Jelly-On-Toast, and she doesn't want to change that. At the Waffle House, on the other hand, she tried some hash browns (scattered and smothered), sausage, waffle, egg and napkin. She liked them all. At home they'd all be on the floor.

Anyway, it was a loud, busy morning at the Waffle so we had a fairly long wait time. Maybelle amused herself by playing PPhhhhtttTT!, a game we all know in which you stick your tongue between your lips and blow. Alison and i sitting across from each other in the booth talking, The Ween beside us in a high chair playing PPHhhhhttt!, when i kind of became aware of Ween experimenting with a lot of new variations, i.e. she was going as long as her breath would hold out, she would make them short and loud, she would blow softly and then finish with a loud flourish. It was when she added the "Ylabal Ylabal" to be capped off with PPHhhhhttTT! that i got really impressed. Her comic timing might just have rivaled Trey Piepmeier's.

We sat lamenting that we didn't have the Flip video camera before we realized that we could shoot it with Alison's phone. By that time, however, Weenie Bean had moved on. With a little encouragement though she gave this less inspired, but still moving, encore performance.

video