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.
How rude and devastating. From what I’ve heard and read, IEPs and their meetings are a kind of industry/warfare all their own, requiring major girding of one’s loins. Sounds like 1) the people in that meeting were on the edge of or in the midst of burn-out and 2) all of their supervisors need to see this entry. People in perceived positions of power either don’t know or have forgotten the effects of non-verbal communication. ((((Hugs))))
I’m so sorry it went as disasterously as it did. Seriously, this is partly why we homeschool, no IEP’s. Then, once you get something like you want on an IEP, you have to personally enforce it with lawyer threats. HOW is this a positive situation for children? If the school is supposed to do it, they why don’t they just DO it? Why the lawyers? Just a horrible situation, all the way around. It’s an Us-against-Them mentality from the immediate get-go, why the “meet in the middle” crap…. aren’t we past all that by now in this day and age of proven strategies-why not just USE them?
Meriah, Moxie’s Transition/IEP meeting sounds very much like ours did with Finn. Night-fucking-mare. Horrible experience. And just like with Moxie, they basically decided on placement as soon as they saw the words “Down syndrome”; there was nothing individualized about it. I’m so sorry you experienced that. We ended up declining everything they “offered” except speech therapy, and found our own typical preschool where Finn is thriving, despite those fuckers who didn’t think he could do well in an inclusive setting. I’m sorry, Meriah – know how much it hurts and brings up anger.
I’m so sorry it went so bad! After hearing all the bad comments about these meetings I went to manolo’s meeting prepared for the worst! I even assisted a conference about how to plan successfulls IEPs, it helped me a lot. First, Let me just say the my son is on a special needs school around kids with special needs. That said, the small time these people spend with your child doesn’t make them an expert on what your child can or can’t do! That is why I requested (and I’m sure you can do this two) that they give me 3 options for placement for my son so I could go to the place and observe what they do, how the kids were and so forth. Every time ill go to a new school I would ask my self if I could see my soon doing good in this room, with these kids, doing what they were doing etc. it was a very difficult decision but I the end I know I made the right choice. It was my choice not theirs because I know my son and I know what he’s capable to do and what he can’t do right now.
I know Moxie is amazing! I see it on your blog your pictures, they don’t know! I’m sure you can make the best decision for her!
I’m sorry you’re hurting so much today. That was awful, and you’re completely justified. I believe that God entrusted your beautiful little princess to you for a reason, and that there’s an obvious reason that he didn’t entrust her with THEM. You are perfect, and are her perfect advocate and mother. Keep your head up! PS: Good for you for doing what’s best for M. with school. I love that your decision isn’t made lightly, but that you’re invested in making the right choice by M., no matter how “un-orthodox” it might seem to people. You’re amazing!
I’m so sorry, I feel like crying with you because I can understand how you feel. We had a meeting like that shortly before Cate started Kindergarten. I thought it was going to be a quick talk to prep for the year but when I walked in there were 5 strangers who all seemed to think Cate’s IEP was wrong(“those” teacher who actually knew her must have been mistaken about typical class placement)and needed to be redone. I am lucky to say that it actually turned out alright in the end and we had a great first year at that school once I fought the fight. It just took them getting to know Cate to see her potential. I hate it that your first experience with your school was a completely awful one. Those people need to learn some flexibility & to see potential. One thing I will say though is Cate thrived in a self contained pre-K, the teacher did all the right things to get her ready for a typical kindy classroom. The focus on language & speech in the classroom was huge for Cate. Don’t neccessarily write it off until you’ve been able to observe the actual teacher she would have with her kids. The teachers make all the difference in any situation I think. Too bad we have to fight with IEP teams – keep advocating, you are an AWESOME mom.
The school district comes to these meetings just to tell you what slot they have already decided that all 3 year olds with DS will go into. They don’t know about Moxie or any other kid. They just know what the school district has designated at “the” placement for 3 year olds with DS. And their bosses will punish them if they don’t get a parent to agree that their pre-assigned box will fit your kid. An IEP is NEVER about what’s best for Moxie. That’s why it feels so hard to do them (and it is so hard).
My daughter has cerebral palsy and no cognitive impairments but at every single IEP some staff person, who’d actually met her, said “I don’t think it’s realistic for her to be in regular education”. With me sitting there in my wheelchair (my daughter also uses a wheelchair) they said that. As if I would agree with them.
I came to think of them as I would used car salesmen. They have a limited set of choices and they want me to agree to the choice they made before I ever came into the room.
Forget them. You know what Moxie needs. You are the only person in that room who knows what works best for her.
As for bringing the kids – hell, yes. If they insist on daytime meetings then you bring the kids. You are there because you are a parent – that means you have kids.
When I brought my daughter, I would tell her how the game was played – that they would say mean things about her to get me to agree to put her into their preassigned box. She and I would choose our ‘treat’ before we even went into the room so that when things got hard, we could look at each other and know something good would happen after we left the room. I also brought headphones so she didn’t have to listen to their horrible spewing.
You are a great mom and advocate. Just know that it’s just a game to the school district. If there is something you want from them, then deal with them. If not, ignore them.
Thank you SO MUCH for this, Corbett.
Hi Meriah,
I don’t know if this is helpful but I’ve been pestering our current therapists with questions to try to figure out how the preschool transition works. From what I gather, in our district anyway, there are no typical preschool classrooms because the district only offers preschool services to kids with special needs. So if I want to send Ollie to a school with typically developing kids I would have to find a private school and set it up on my own in addition to the services they offer through the school district or instead of those services. They told me if I don’t want to send him to the public preschool I do have the option of just bringing him for whatever therapies I feel he needs and then picking him up right after or forgoing all of those services. To me it doesn’t make sense that they told you Montessori wouldn’t be a very good fit for her because I don’t see how it’s their call. That would be between you and your chosen school. Anyway, I’m sorry they had such a bad attitude and made all those inappropriate judgements. I was upset after our transition meeting too.
Ugh, Mari, that’s why I REALLY wanted to touch base with you and Mimi. This just really knocked me over.
The only inclusive preschool option for Moxie is Headstart – other than that, it’s exactly as you say – we’d arrange it and pay for it and they’d provide support. That seems like the smartest option.
Did they put Ollie in a box all pre-labeled too?
I’d really love to get together soon. xoxo
Hello Meriah!!! I’m from Argentina and I speak English is not that well but for what I understood: this people didn’t give u any option to choose what to do with your girl education, I want to know how is there in America? Here in Argentina we fight for inclusion, and is a law that they can do kindergarden in a normal school and if they need an extra teacher to help them they will have it, plus the state give them the choice to have a job in the state, or get them works. My husband is from New York, and he doesn’t know to much about how is there. I will love to know if why happen to you happens in all the states?
Camila.. Kisses from Brian (husband), Vincent (son) and me (wife)
Hi Camila! It’s nice to meet you.
I love Argentinian empanada, beef and chimichurri. I just wanted to tell you that right off the bat.
🙂
About the services… services here really depend on where you live. It’s different in each state, and it can even be different within a state. With my state (California), we do have choices. For example, with my daughter (who is 3 years old in May), she can receive services in a classroom with other kids with disabilities OR she can attend the public preschool which is called Headstart. Headstart where I live isn’t a very good program. It IS a good program in some other areas of California though – it just depends on your area. I wouldn’t send Moxie to a Headstart though.
So… it would be the choice between the classroom of other kids with disabilities or a private preschool which we would pay for but the state would pay to have services provided at. So the state would send someone to work on therapy with Moxie at her private preschool if we chose that route.
Things change with the age of the child. This is just how it is in our particular area with the particular age of our child.
How old is your son?
sorry for the delay (sorry for my english too)!
Hello Meriah! thank u for flattering our argentinian food 😀 jejeje
Vincent is just 5 months old 😀 soon to be 6 months… we think is better for him study here in Argentina, but my husband in the future he wants to come back to his state (New York) so i wanted to have an idea how it would be. I believe that in a few more years things are going to change a lot, people are trying to integrate that extra chromosome in the society and that is the beginning of something good, for more opportunities.
Give a big huge and kiss to your beautiful daughter from my family!!! 😀
SALUDOS Y GRACIAS!
that made me really sad. i’ve had lots of meetings like that. one time an audiologist was trying to give ben a mental age by asking what tv shows he liked. he should have liked glee, but he still liked toy story. a nice teacher in attendance piped up: “i like toy story too!”
xo
{{{{HUGS}}}}, Mama Bear. No words of wisdom over here. Just hugs.
Meriah… You go after what you want… Crying is just power leak… Whatever you do it will be okay and Moxie will be wonderful! Fuck’ em!
What a bunch of jerks. It’s clear that they don’t know Moxie. And thank goodness they are not going to be deciding for her. Our only option for typical is private too (or Head Start, which I’ve heard is impossible to get into). Not sure how we’ll pay for it. Cora’s current therapists don’t want her in a contained special needs classroom, but we’ll have to see what the evaluators say in a few months. I’m sorry your first experience doing this had to suck so much. I’m sure that whatever you choose for Moxie, she will benefit from it.
Okay, I haven’t had the chance to read everybody else’s comments, so I may just be repeating what they’ve said–but I LOVE the idea of tears as “power leaks” (go, Starrlife!), and I had a couple of things I wanted to stress.
–YOU are in charge. You can decide to put Moxie in a Montessori school (where Maybelle was for her first preschool and may well be for her elementary school) or any sort of inclusive preschool of your choice.
–The transition to school services doesn’t necessarily mean you lose the therapists you’ve been working with, if you like them. We’ve kept the same speech therapist and occupational therapist for Maybelle–she has an OT and SLP at school, but we still visit with Beth and Diane out of school. It’s very helpful for me to have those allies, folks who’ve known Maybelle since she was just a baby. And folks who know the system and can guide me.
–LRE. That’s federal law. They have to put Moxie in the least restrictive environment. I hope you don’t have to bring a lawyer in to make that happen, but you can.
–And finally, you and Moxie are going to change the world. People are loaded with all kinds of cultural baggage and stereotyping they don’t even know they have. You two are going to help dismantle that stuff, and that’s huge, powerful activism.
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.
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.
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
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.