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… the Post in Which I am a Defenseless Turtle at the IEP/Transition Meeting

… the Post in Which I am a Defenseless Turtle at the IEP/Transition Meeting

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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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Down Syndrome Changed Our Lives. Here's Why.

Saturday 23rd of June 2018

[…] all the therapy that was recommended to her, and I could have swung with the school district when I went in for the IEP. I could have turned into a […]

Mark Leach

Sunday 17th of February 2013

Having been through several IEPs at this point, I sympathize. While our most recent one went smoothly, we were blindsided at the one last year--and that was our fifth! You would have thought we'd be prepared. If you have access to a local support group, I have found it tremendously helpful to bounce ideas off of them before going into an IEP. For our early ones, we were accompanied by a staff member of our local group--they understood the jargon and could translate for us. Plus, having the expert with us, the team didn't try to steamroll us into the pre-ordained slot. I love your transparency and authenticity--it is a sad consolation that many parents have shared your experience, but hopefully that provides comfort in knowing you're not alone.

anne

Sunday 17th of February 2013

hi. i wanted to tell you that so many of us moms with special needs have had experiences just like yours with the whole eye rolling, sly glances , shrugging of shoulders etc. i have 4 special needs kiddos ranging in age from 6 to 15. they all have ieps. one child my daughter shravie is 10 - she has cp, intellectual disablity, and is mostly non-verbal - my school district insisted they would be able to provide education for her in district - i knew in my heart that she needed a special needs school - i actually sat in iep meetings and said to the eye rollers, " what is with the eye rolling?" they were soooo embarrassed!! i ended up needing to get an attorney and a letter from my daughters neurologist stating why she needed the specific school for kids with cp and id and apraxia. in the end i got what i thought is best for her and she is so incredibly happy since the move from a classroom with typically developing kids where she just could not manage to her present "life skills" class. she was crying every day for a full school year in the regular class, she was getting pushed and bit by those classmates that simply did not have the issues that she had - she went through a periods of 3 weeks of flat out refusing to get on the school bus because she was so unhappy and frightened by what was going on in her regular class. - you as your babies mom know exactly what your daughter needs - dont be afraid to write the school district a letter requesting another meeting and go back and fight for what you know is right for your girl. tell them about themselves a little - i also cried during a few meetings with my daughter - the first time i was horrified but after that i just said to them " do you see these tears? they are not tears of weakness, they are tears of absolutely knowing what is right for my daughter and frustration that you all will never get it not having a child with special needs" they dont know what to say when you talk from your heart - i think because they are heartless... in the end you will get what you wann.... anne

jisun

Friday 15th of February 2013

Ok, so I can't pretend that reading this wasn't a little hard for me, since I have a wee little baby and we aren't in the scary world of IEPs. But somehow, I'm grateful that you're so pissed off about it, because that means you'll win the fight for what your little girl needs. How could you be prepared for people to treat you as lesser? No one can be prepared for that.

Adina

Thursday 14th of February 2013

I am so sorry. :( I went into the meeting for my Sophie (who is 7 tomorrow) already knowing that we would be homeschooling and literally tuned the entire meeting out. I smiled, nodded, took the paperwork they offered and got the hell out of there.

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