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  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.

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  1. Yes, you answered your own question. Here we are frustrated in the public setting because ABA professionals are not available or allowed… but if you have the “right” insurance and can afford private school, then you can have a BCBA as your para at the cost of your insurance…. not quite fair.. Wonderful for those in the “right” spot so I do not want to take that away, but so inequitable, showing the haves and have nots just how big the gap can get it is very hard to take. We are out of the system now, having aged out at 21years… So I am working on ‘systems’ change tying not to get too cynical.. maybe I just answered my own sentiment too…
    Thanks for being you and expecting all you can for your Moxie

  2. Kelly Cooper says:

    Hi:) our Gracie is 12 years old and started 6th grade this year. She has been in the general education environment since preschool and has had the help of her very best friend, Grace since kindergarten. She was starting to feel the irritation of being shuffled around last year, but was still ok. We had been really happy with it until just recently…when she moved to junior high. We were thrilled to get a spot at an arts integration charter school. She was so excited to be in dance class at school!
    However, the daily challenge of getting her motivated to go to school was pretty bad. She absolutely did not want to go. My husband and I sat down to have a heart to heart with her one night and that’s when it all came out….she said “I don’t belong at that school” and when we asked why not, she said “I’m not good enough”. This broke our hearts, as you can imagine. She’d never expressed anything like this before. She is loved by sooo many people and has always had great self confidence. I immediately scheduled a meeting with 2 of her 7 teachers the very next day. They seemed at a loss as to why she was feeling that way and proceeded to tell us how she’s been hiding out in the bathroom during math class. They really didn’t take the time to figure out why. I shadowed her all day the very following day….it was eye-opening. So much of her time was spent sitting in these classes where she didn’t have any help. She didn’t completely understand the class discussions and therefore was not participating. I knew, right then and there that she knew that she wasn’t fitting in because she simply didn’t understand what the other kids were doing.
    Since that day, she has been homeschooled.
    She’s been so much happier:)

    1. oh boy…. thank you so much for sharing. It’s heartbreaking, but so glad you found a solution. How is homeschooling going? Would love to learn more.

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