Tag

special ed

Browsing

I grew up mostly abroad.

In my schools abroad, there were never services outside of mainstream for any students. In my Chinese Catholic school in Fiji, for example, students who arrived from China and came to the school were put directly into the grade level that they belonged according to their English level – that’s why there were big, strapping 15 year old Chinese boys in kindergarten.

The first time I ever saw services for kids with disabilities was in my high school in Hawai’i. There was “special education” which was this building that was kind of set off to the side, and in which every kid who walked toe-first or couldn’t see or hear was placed. I have no memory of having any interaction with any of the people in special education, other than not wanting to be grouped with them and desperately trying to “pass” as hearing so I wouldn’t.

For me, “special education” has only ever been about that building.

Now I have a daughter with Down syndrome

My daughter is going through the pieces now of being put in that building, and I’m trying to understand all that I can about IEP’s and legal pieces and “Least Restrictive Environment” and all of the other things that I NEED TO KNOW, like, YESTERDAY.

And I’m learning.

I wrote this post on where we are now. I’m glad I wrote it because not only did I receive a lot of useful information regarding what a fair and appropriate education for my daughter should look like, but I also learned how wrong I was in “special education” being a place! Wow! SO wrong!

“Special education” is not about the place, has never been about the building or about the segregated class. “Special education” is not code for “self contained classroom” –  “Special education” is about service.

Special Education is Not a Place

Like that awesome meme from PEAK Parent Center says, Special Education is not a place; it IS supports and services brought to students through an Individualized Education Plan (IEP).

Special Education is the the framework behind any plan, work or service that is designed to help facilitate a fair and appropriate education in the least restrictive environment for a student. Full stop.

With this clarification, saying “my child goes to Special Ed” is completely inaccurate, it tells you that mayyyybe the child receives some customized support for their learning? Or maaaayyyybe that they attend a self-contained classroom? It’s not clear.

If you want to drive your point home – which I did – then it’s good to know these pieces:

  • Self-contained classroom: the segregated rooms for students with disabilities
  • Special Education: the framework through which customized support for achieving educational plans are made

 

UPDATE:

  1. “Special Ed vs Inclusion”: While I  believe in being transparent about my mistakes and learning, leaving this post uncorrected may be confusing in its inaccuracies. In the interest of keeping this post useful, I’m correcting the mistakes I made with terminology. Special Education is NOT a Place further clarifies.
  2. ABA Services: I also want to be clear that I’m not endorsing ABA services as a whole by dint of the fact that we’ve had a positive experience. Unbound Books has links to posts from autistic adults survivors of ABA abuse: I encourage my fellow Down syndrome parent community to tune in. Please read the post-note for more information.

________________________________________________________________________________________________________

With our recent move from the Lost Coast to Blue Lake comes facing the regular school system.

You see, on the Lost Coast, Moxie’s class had 3 grades combined. 12 kids and one teacher. Moxie had a full-time aid, and was pulled out of class to work with her speech therapist twice a month and a specialist for working with her one-on-one with reading and writing. It was so small there though that there was no choice but to completely include Moxie in the mainstream general education class. She was absolutely, fully included.

And she thrived.

Knowing this, and yet seeing isolation of adults with Down syndrome in the community and larger world, and knowing how I myself have felt being The Only Deaf One in any work or school situation, I thought that maybe self-contained classrooms had their benefits. Self-contained classes have the feeling of segregation which is NOT cool, and it has the feeling of unsexy “otherness”, also NOT cool, but they do give kids with disabilities the chance to know each other and develop friendships with one another.

Well, now we are living it.

Moxie had her initial IEP with the school only one day before school started. (I was running around having apoplectic fits over Monday coming and having heard nothing from the school despite checking in with them 6 weeks previously (and so forth). I finally heard from the principle on Thursday, with the meeting scheduled for the next day. Fine.) We had the meeting.

We agreed to have Moxie in a regular 1st grade class with a full time aid there, helping her. I met the aid. She seemed nice. I made recommendations, namely, that Moxie use a visual chart/calendar, that “Supporting Positive Behavior in Children and Teens with Down Syndrome” be read and applied.

School started.

I started noticing a lot of things like Moxie hanging around line, not really knowing what to do. Her aid’s consistent absence or lateness. The fact that the aid’s own son is in the class seems to be a distraction for her (the aid). I noticed Moxie being outside of the class a lot (I live very close to the school and pass it often). Her homework being left in her bag, undelivered and unchecked.

I was concerned and took it to the principal  and she said she was on it.

Then we met to finalize her IEP and it was suggested that instead of Moxie meeting with the special resource teacher (as she had been, to work on reading and writing as she had been doing on the Lost Coast), she should be in a self-contained classroom so that she could be with her friend. “She’s really happy there,” it was explained to me, along with suggestions that we try it and that we could always change it later.

I went along with it, and then just last week, I was told that she is in her general ed class only 56% of the time.

I was mulling on that, as well as the fact that I know Moxie to be capable of handling a lot of the work in 1st grade, with the assistance of an aid. The better the aid, of course, the more Moxie will succeed, because the consistency and the one-on-one explanations are what Moxie needs.

I tuned into some of the Down syndrome Facebook groups (so grateful for these groups!), and felt my gut kind of expand out – what’s going on right now just doesn’t feel right.

It feels like Moxie is being shuffled around, and her aid isn’t living up to her job.

It feels like people love Moxie (of course they love Moxie, everyone loves Moxie) and they always talk about it with me with this element of surprise, or that I should be pleased (and I roll my eyes while trying to be polite, because duh, EVERYONE loves Moxie. question is, does she love YOU?) and they tell me things like she is “happy all the time” which makes my teeth clench and then I know for sure they are spending precious little time with her.

Because she is NOT happy all the time, and if they got to know her, they would know that.

The Regional Center connected us with ABA services this summer* (please read post-note) and they have been beyond fantastic. I mean, WOW. they work with Moxie one-on-one with behavioral skill development and it’s fabulous. They come to our home twice a week and the school once a week (for after care). Moxie adores the person who works with her, and learns far more there than she seems to at school.

Moxie also has a respite worker who is cut from the same fabric as her ABA behavioral specialist. Bright, fun, engaging, young; these people are making a real difference in Moxie’s education and Moxie constantly asks about them.

So, this brings me round to wondering if it’s better to homeschool with supports? Or try and get Moxie fully included in school with a aid who is On It? And how can I even go about requesting a change in her aid, if the aid technically has not done anything wrong, only has been absent and late a lot, and has not followed through with our plan?

Oh wait. Did I just answer my own question?

____________

About ABA:

ABA has a horrific reputation in the disability community for abuse. Here is a collection of posts and information on it, from survivors of ABA.

I did not wander up to ABA services and knock on the door. That’s not how we were connected at all. I was just starting my divorce process and needed childcare. I could not afford childcare. My kids had been accepted to a good camp on scholarship, but Moxie needed to have an aid come with her on account of her bolting. The Regional Center recommended ABA services to help with that while she was in camp.

I went along with this because I figured that they couldn’t do the horrific things that I had read about while they were surrounded by all the people in camp. No way! They had to be on their best behavior, and it was only for a week.

Well, Moxie really bonded with one of her specialists, and then when the kids were accepted to another camps on scholarship, I continued with the ABA services, having them present when she was at camp.

She currently sees the same person that she has seen throughout, and they work together during the after-school program (which will not accept Moxie without an aid with her, and they will not provide an aid; up to me and I have a very limited income). She also comes to the house on the weekends and that’s when I see her at work.

I have talked to other families in our area and they have NOT had the same experience with ABA services as I have. I strongly suspect that we simply have the therapist who is young, bright, really empowering and positive. To me, she seems way more in line with “A-Ha Parenting” than what I’ve read about ABA.

I can’t lie and make this not happen; I mean, we DO receive ABA services and it’s fantastic. But I think our situation is REALLY NOT TYPICAL.

I was like a snarling mama cat, clamouring for full inclusion until just recently. That is, for NOT having Moxie in a “special ed” classroom, in a classroom set aside in which all of the other children therein also have a cognitive disability.

Moxie learns by imitation, I thought, what sense does it make to put her in a room full of kids that are where she is? 

Right? I mean, since she really is a learn-by-watching kind of person, how is she going to learn to talk when she is around other kids that are mostly nonverbal?

And that might definitely be so. It very well may be. Because, like I said, she really does learn by watching.

But I applied my own deafness to this picture. I thought about how I felt, being the ONLY DEAF KID in every.single.classroom I have ever been in, bar none. The ONLY KID who couldn’t hear, then the ONLY ADULT who struggled through a thousand class sessions, millions of minutes focusing on lips, lips, lips, zonking out over lips, lips, lips in this endless quest to get it right, get it down, hear through watching.

I’m not going to lie: it SUCKED.

I got a taste of how awesome it can be to have a friend who is the same as me when Katherine came to work for my program at UC Berkeley. She and I were, I’m sure, completely obnoxious at work parties when we would “converse” with one another completely by lip-reading, emitting no sounds whatsoever.

It gets lonely when you are the only kid – or adult for that matter – that sticks out in some way.

You feel your difference. Hence, I suppose, the appeal of all-girls schools. Or black colleges.

And now, I think, for special ed classrooms.

***

I think for me it’s more important that Moxie has friends and she feels included, confident and strong than it is that she be all academically stimulated. This is surely a luxury on my part, that feeling, since it stems from my training and background as a teacher. I know I can give her at home what a classroom may lack, academically speaking. Even if it’s the learn-by-watching – she has two brothers, remember?

I want Moxie to know deeply and surely that her extra chromosome is a wonderful thing, bringing with it a bunch of uniqueness that is marvelous!

I want her to embrace who she is, love the gift to the world that her presence brings. I feel that pushing her one way or another – into a room with a lot of other kids with an intellectual disability or into a room with a lot of other kids without an intellectual disability – is not what I want to do. Rather, I want to feel out makes the most sense in a given place. Take each school and classroom on a case-by-case basis.

I want to see what she wants to do.

***

Perhaps that is the sticker; the stone in my wheel. The feeling that a lot of schools would not let Moxie see what she wants to do, or would not value her own opinion. A lot of schools won’t let individuals with a cognitive disability – or their parents for that matter – decide what is best for themselves. Education is not so much about encouraging beautiful minds anymore as much as it is about dollars and scores.

I’m distrustful of any system that wants to segregate anyone. I think the best and most logical conclusion is to integrate everyone. Because really, with all skills present in a class, with all types of individuals, with a full spectrum of intellect and variations in learning styles at play, kids are really going to grow. They’ll be pushed further by helping one another; they’ll see the strengths in those with cognitive disabilities, not just  a societal-defined weakness. They’ll learn that Moxie might not talk as much as they do but she can teach them a thing or three about getting what she wants. Like all people – ALL PEOPLE – she has skills and contributions that she is bringing to the table.

The question is simply if she will be allowed to contribute or will she be a token inclusion in her class?

***

There we go. A flawed system and an imperfect world. What I want does not yet exist and if I choose to send my daughter to school, my choices right here, right now, are a segregated “special needs” classroom or a “mainstream” classroom in which Moxie would need help in the form of aides and such.

I have no answers that are solid but I do know that as much as I loathe segregation, I want my girl to feel accepted and valued. If she found that in a special ed classroom and not in a mainstream one, well, then, I’d think about it.

A special ed classroom is not out of the question anymore.

_______________________________________________________________

  • originally posted June 18, 2013

pin it!

The Case FOR Special Ed: when does a contained classroom make sense? If ever?

SaveSave

Font Resize
Contrast