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.
She is so bright, so capable, so smart.
But Jesus! Even if she wasn’t.
How dare they.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.