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… 🙁 ). 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’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: 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.
For More on Moxie Learning:
Moxie Having Some FUN!
Meriah is the deaf, single mom of 3 kids (one gifted 2E, one with Down syndrome). A longtime career counselor, teacher and disability advocate, she loves helping to create community and empower parents, people with disabilities (and of course, parents with disabilities).