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This is an anecdotal piece about¬†Moxie, a 7 year old with Down syndrome in 1st grade, and our journey this past academic year in school changes and IEP’s.

7 year old Moxie started school in Blue Lake, California this academic year.

It was a huge shift for her, going from the Mattole School on the Lost Coast with 98 students, k-12. Her class there had 12 students with a combined 3 grades, and she had known her classmates, teacher and aid for years. She was comfortable.

Everyone knew her and believed in her capabilities.

Blue Lake was a much bigger school, with over 100 students from kindergarten through 6th grade. Each class for each grade had over 20 students, and they had a classroom that was specifically for students with disabilities.

Moxie started off in general education at Blue Lake. Her IEP from Mattole was used (which called for 100% inclusion). She was, however, swiftly pulled from her general education class and put into the “special” class. The larger portion of each day was being spent with the segregated class and something like 20% being with the general class.

I was confused when I realized what was going on.

I didn’t want to make waves as I knew we were not going to be attending the school for long, but I also didn’t want my daughter to be placed in a segregated class.

Furthermore, nothing about the rationale made sense to me: she was reading only slightly below grade level, was completing all “regular” 1st grade assignments with only minor modifications.

What exactly was going on?

I called a meeting with her general education teacher which turned into a full-blown IEP meeting. I was armed, chock full of the wisdom of fellow parents from the Down syndrome community in the Facebook IEP group (oops, I was going to link the group here but I am a member of around 5 IEP groups and don’t remember which I posted in… ūüôĀ ). I had my binder, my STUFF READ. I was dressed in black, ready for business, yo!

But as soon as I entered the room, the principal said, “Meriah, we were wrong. Moxie belongs in the general education room.”

Talk about taking the wind out of my sails…. So, I just sat down and signed all the documents, and we agreed that Moxie would be in her general education class except for pull-outs for speech therapy and some one-on-one resource work with reading and math.

That worked great. She was doing well and very happy, and then we moved to Hawaii.

I was VERY nervous about this shift, because I’ve only heard negative stuff about schools here and students with disabilities. Added to that, I grew up here! I’m deaf! Of course I remember how kids in my own schools were treated; it’s partly why I never wanted identify as a person with a disability!

I was in big conversations with schools, trying to figure out what school would appreciate my child the most. Where would she be most likely to be accepted? Embraced? Encouraged? It was tough, and honestly, none of them seemed fantastic.

I chose the one that seemed the best overall fit for both Moxie and her siblings. The school – like most all schools here – is huge, with over 600 students. It aims for full inclusion, but does have the segregated classes. It doesn’t have a lot of resources.

I chose her school though, because it has a strong and large Pacific Islander and Hawaiian population. I chose it because it is mellow. I chose it because I like the way the parents hold their children and I like the way that the mothers walk slowly with their kids to school. Their flip-flops shuffle easily and their pace has time.

I thought that the vibe would best embrace Moxie.

2 months in and it’s… interesting.

There have been some great things and some not-so-great things. The not-so-great likely stemming from the school’s unfamiliarity in working with¬†a 7 Year old with Down Syndrome in the 1st Grade. Namely:

Not-so-great is the absolute astonishment with which educators tell me that Moxie is “really pretty smart!” – and the tone that they have that indicates that they think they are telling me something I don’t know.

Not-so-great is also finding work in her folder that is incorrect, yet was not reviewed and re-done. Not just once or twice either.

Not-so-great is the nod that I see her teacher giving her classmate, that indicates that her classmate is helping her, and that Moxie is seen as someone to help; not as a full contributing member who is also capable of helping others. I don’t see the equal there.

Not-so-great is her special resource teacher telling me that they are really just focusing on the social with Moxie; that it’s really not “that important” that she do her homework.

BUT THE GREAT abounds too!

moxie 7 year old with down syndrome in 1st grade writing

Moxie’s speech has shot off – she has become a real chatterbox with millions of words. She’s hilarious, and she’s able to express it! (see the YouTube video at the end of this post for some Moxie-fun!)

She is reading and writing – and improving with both every day.

Her peers absolutely love her and it shows. She is very popular. Walking down the hall with her is what it feels like to be a rockstar, with every person saying, “hi Moxie!”, “hi!” She is welcomed. She is embraced.

She is enthusiastic about school – she loved going in the morning and is often pissed off about coming home. She adores her teacher, the class aids, the intern – everyone.

________________________

Overall, I think it’s good – because the things that are harder to come by, work through or resolve are the things that we find easily with the school, and the things that I think we can fix are the things that need some fixin’.

That’s where I am, as I prepare this weekend for Moxie’s IEP meeting, in which we’ll be taking a look at what we’ve been following from Blue Lake (which followed Mattole), and I am supremely grateful to the Kansas City Down Syndrome Guild for this amazing IEP compilation that I’ve printed and prepared for the meeting.

moxie 7 year old with down syndrome in 1st grade reading

Moxie: A 7 Year Old with Down Syndrome in the 1st Grade

This academic year isn’t over yet – we still have a few months to go, and I know they will be important ones. The IEP that we will be setting next week, after all, will most likely be the one that all future ones will be based off of in some way or another.

I am nervous.

I am scared.

I want to do the best possible thing for my child, and to ensure her success and her place in school, in the world.

Moxie: A 7 Year Old with Down Syndrome in the 1st Grade

For More on Moxie Learning:
Moxie Having Some FUN!

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

 

“We All Belong”

“We All Belong” is a powerful short video that explains, educates and empowers. It helps us deal with disability segregation in school, which is something that most all of us in the Down syndrome community face at one point or another (even us with disabilities, as I talked about in this recent post on Moxie).

 

We Belong

“We All Belong” was produced by the Northwest Down Syndrome Association, located in Portland, Oregon. Even if you don’t live in Portland, theirs is a great organization to tap into for resources, ideas, and inspiration (like the “Kindergarten Cohort”! Brilliant! I want to know more!).



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.

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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.

So I’m sitting here with a sleeping Mac in my lap.

I’m crying over him, big fat tears plopping all over his legs.

I’m trying to figure out why exactly I’m so upset.

The administrator’s parting comment over Micah reading Rumpelstiltskin (the book he brought along to read on his own during the meeting) rings in my ears, “ha! no delay there!

– at the time, in the room, I turned to her with my jaw open and that was right when Mac spat up a few mouthfuls all over me, Moxie was running out and I had to go.

My automatic response anyway is never a good one. It usually involves a lot of cussing and bitch slapping, so it’s probably a good thing I had to run out after Moxie, drenched in spit up.

*****

Let me backtrack so you understand what I am even talking about.

We met with Moxie’s Regional Center caseworker. The Regional Center is the organization that funds the services that Moxie receives that are not covered by insurance. The only service we have really been receiving for the past year has been Speech Therapy (- Moxie is mostly non verbal). The Regional Center only covers therapies, etc, until the child is 3 years old – at which point a given “case” is handed to the local school district and an “Individual Education Plan” – IEP – is drawn up.

Well, Moxie’s going to be 3 in May. Her case is being transferred.

I’m not honestly sure what our situation is going to be, come May. If we will still be here or if we’ll have left already. I’m not sure if I’ll be homeschooling or if preschool seems to be a good option for Moxie – I’m just not sure about a lot right now. So I was going to the meeting more as a way of keeping all options open than as a means toward achieving a pre-desired end.

I didn’t draft up questions about…anything.

I didn’t have my guard up or armour on as I simply assumed were going to have a quick conversation about next steps. Moxie’s Regional Center caseworker was, as I mentioned, present. I like her, and had relaxed in our comfortable relationship.

And so, like some kind of (frazzled) shell-less turtle, I arrived with all 3 kids in tow. Moxie was sleepy, having been woken up from a nap and her spaced-out look that tends to make the features associated with Down syndrome more pronounced was in full force. When we walked in, I apologized for bringing all the kids and stated that Moxie was pretty sleepy. One of the ladies gave her this…knowing¬† look, this look that just screamed, “yeah sure, your kid has Down syndrome and you are trying to make it seem like she’s just sleepy.”

Boy, did my hackles rise.

From that point on, it was the little things. It was the small looks (please remember: I am deaf. Small looks for me are not what they are for the non-deaf). It was the side glances, the shrugs. As far as what was actually said, well,it was the need for Moxie be tested, assessed and evaluated, to be plied upon with therapy like therapy was water and she was traveling the Sahara, dehydrated. It was their suggestion that Moxie go to a “special needs” classroom as opposed to an inclusive class, their insistence that a Montessori school would “clearly” not be a good choice for her because of well, “you know…the role playing.”

I was then the recipient of the “sure, whatever you want” responses, all the while shrugging and rolling their eyes at me.¬† I was kind of glad I was feeding Mac while all this was happening because I swear to God, my hands were twitching by the end of the hour.

I was patronized and treated like an ignoramus.¬† But worse was how they clearly felt about my Moxie.¬† How dare they treat my daughter like so much a disease. How dare they try and push her into a tiny, isolated box of “special needs.”

How dare they treat her like she is stupid?

She might have an intellectual disability but she is far from stupid. That in and of itself is raging ignorance, to confuse her disability with stupidity and I wanted to blast that through their narrow little minds.

****

It was horrible and I was not prepared. I was completely unprepared.

Mac’s still sleeping here in my lap. Moxie just came in. She picked up my sling in the living room and was trying to put her doll in it to carry it around and… I’m sorry. Tears are filling my eyes again.

photo(7)

She is so bright, so capable, so smart.

But Jesus! Even if she wasn’t.

How dare they.

 

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