Pop

Hear that? It’s the sound of my balloon bursting.

Until now, we have had an amicable relationship with our school district. We felt very in sync with their suggestions for Rowenna, and we loved her placements for the last two years.

We know many children who have various diagnoses, and many of them did an extra year of preschool before entering kindergarten at age 6. The law in my state also allows for children to begin school at age 6.

So it never crossed my mind to ask our district if Rowenna would be forced into kindergarten simply because she is turning 5. And it definitely never crossed my mind that the district would try to tell me it’s “illegal” to have her do an additional year of 4K to work on more foundational skills before kindergarten.

I mean, here I was, wrongly assuming placement would be based on need and best fit – not the district’s cookie cutter policy that they are trying to pass off as state and federal law. I was wrongly assuming that I could hold the district to their word when they said decisions would be made as a team, with hubby and I as the head of that team.

I hadn’t originally planned to blog about this year’s IEP process because we were expecting it to be wonderfully mundane, a formality. Unfortunately, instead of a one-off post about the end result of the process, I will be blogging as we go along in order to share the full picture.

This morning, I met with the elementary special education placement coordinator for our district. She and I had previously had a rather awful conversation about Rowenna’s placement for next year. Citing that Rowenna “won’t be reading” by the end of next school year, she would be placed in a special education program reserved for students who require a high degree of support.

Read: self contained classroom from which Rowenna would have to “earn” her escape.

So here’s where I pause briefly to make this disclaimer: I have no issue with a self contained classroom if it is truly the best method for educating a student. What’s right for my child might not be right for yours and I completely support your decision, even if it looks different than mine.

However, it’s not what Rowenna needs right now. While she has difficulty initiating play, she thrives on observing and then doing. She needs peer models to do this.

I toured a regular education classroom at our home school while the district representative pointed out all the ways the room would be challenging for Rowenna. (There are so many kids! They know all the days of the week! They are singing!) All I saw was a thriving room full of little bodies doing hard work, a place where Rowenna might succeed with the right kind of supports. A place where she should have the chance to try.

We followed that with a lengthy discussion wherein it became incredibly apparent that the district doesn’t intend to support Rowenna at all. Under the guise of innocent sounding phrases like “individualized instruction” and “what’s best for Rowenna,” she painted a picture of a program where Rowenna spends the day with special education students while being “allowed” to leave that room for things like lunch or music.

Here’s the thing: there is no “allowing” in public schools for regular education students. Can you imagine? Can you imagine what would happen if a teacher said to a parent how lucky their child is to be allowed to remain with her class the entire day?

The standards set forth for students receiving special education services are enormous and unjust. My daughter is expected to show perfect behavior, perfect patience, and perfect mastery. Mistakes are counted against her as signs she needs more special education. Weaknesses are used as signs that she shouldn’t be with her peers. She is being denied a chance at kindergarten due to the potential that she may not be reading by the end of the year, even though regular education students are not denied education based on such potential.

We then went to tour the proposed placement. It’s a tiny room, tucked back into a corner of the school. The class has children from kindergarten to third grade and just one special education teacher. This teacher is expected to modify curriculum for 15 students across 4 grades, using some of the most in depth IEPs in the district. There are 4 paraprofessionals in the class as well, but they are not always present as some accompany the handful of students who do spend a few hours outside this classroom.

I wanted to throw up. This is the best they can do? This is “what’s best” for Rowenna?

What do they think of my child if they think my vibrant, sunshine girl will thrive in segregation?

The district representative scrambled to explain and justify while the staff I spoke with confirmed my worst nightmares, the things the representative said just weren’t true about the program. Rowenna would spend her time in this room and not with her peers. “Pull outs” to a regular education room would be brief, if they happened at all. Recess is segregated. Lunch is segregated unless Rowenna can prove she can “handle” lunch with her peers. The teacher was checked out and looked exhausted. (And I say that with nothing but love and understanding – teaching is a tough gig sometimes, and they gave this class to a brand new teacher. Completely inappropriate, and yet another sign that the district is simply warehousing these kids out of the way. There’s nothing wrong with being a first year teacher, but this set up requires a bit of experience, in my opinion.) There is no way for her to get out of this situation unless Rowenna can prove she is entirely “at pace” with her peers, a standard only held to special education students.

All this under the pretty trappings of “specialized instruction.”

If a school can’t get recess inclusion right, I can’t hold out much hope that they will get anything else right.

Again, to be clear, I have nothing against special education. In fact, I think Rowenna needs it, and that she likely needs more than even her peers with Down syndrome. But special education doesn’t need to be an address, a place for her to park every day. It needs to be a service and a way to help her navigate the world. That cannot be done while stuck inside a room without her peers.

So this is our square one. I have a lot of research and soul searching to do before we officially meet with the IEP team. And while the district representative insisted on saying the IEP team will decide the future, I have every intention of reminding them that hubby and I, and ultimately Rowenna, lead this team and make the final decisions.

I have Rowenna’s future, well being, and happiness to advocate for, and I refuse to let her down.

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8 Responses to Pop

  1. Emily April 28, 2015 at 7:32 pm #

    Oh my. Dear Mel, I hate that you have to do this, but I know you will go in with sweet and competent Ro’s best interests and advocate for her. I cannot believe that they think this is best for her. Not for a second. You got this, for Ro’s future.

  2. Beth April 28, 2015 at 9:04 pm #

    My heart is breaking for you & Ro. Sounds like this school does not know how to provide what is best for your child, and they are not smart enough to listen to you, the parents. Have you considered hiring a legal advocate?

  3. Ingrid Tischer April 28, 2015 at 10:22 pm #

    I just found your post via the Disability Visibility Project on Facebook — great piece! Realize you may already know this but your local Parent
    Parent Training and Information Center (PTI) might be a good resource for questions and advocacy help that’s free. I work at Disability Rights Education & Defense Fund (DREDF) in Berkeley and we’re the federally funded PTI for our area. Your PTI could be a resource for establishing if the district’s providing the least restrictive environment (LRE), and following the law, in general.

    Our attorneys and Education Advocates (who are parents of children with disabilities) say exactly what you do: Special education is not a place.

    You can find your PTI here: http://www.parentcenterhub.org/find-your-center/
    National special education legal information here: http://dredf.org/special-education/special-education-resources/

    Best wishes to you and your family.

  4. Susan Henderson April 28, 2015 at 10:39 pm #

    Melissa, I found your blog via Meriah Nichols. It looks like you’re already a pretty fierce advocate for Rowena, but in case you want to learn more, hone your skills, or bounce your thoughts off other advocates, I wanted to make sure that you know about Parent Training & Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) and the services and advocacy support that they provide to families of children with disabilities. You can find the one that serves you here: http://www.parentcenterhub.org/find-your-center/

    Best,
    Susan Henderson
    Disability Rights Education & Defense Fund

  5. Deborah April 29, 2015 at 12:50 am #

    I hate this for you and for Ro. I know you’re an amazing advocate – and she’s a great kid – so I’m confident that you’ll find the right spot for her. But to be blindsided like that just sucks.

  6. knapsackstrats April 29, 2015 at 11:17 am #

    Way too many of us face this horrible dilemma. I am a special education teacher and the mother of 2 with IEPs. I wish I could say that each year gets better, but as you progress through the years, you will most likely have to navigate around even larger boulders. Stay on top of her transition plan when she hits middle school. Rowenna is a very lucky kiddo. Thanks for such a beautifully expressed post.

  7. Ingrid Tischer April 29, 2015 at 12:32 pm #

    I just found your post via the Disability Visibility Project on Facebook — great piece! Realize you may already know this but your local Parent Training and Information Center (PTI) might be a good resource for questions and advocacy help that’s free.

    I work at Disability Rights Education & Defense Fund (DREDF) in Berkeley and we’re the federally funded PTI for our area. Your PTI could be a resource for establishing if the district’s providing the least restrictive environment (LRE), and following the law, in general.

    Our attorneys and Education Advocates (who are parents of children with disabilities) say exactly what you do: Special education is not a place.

    You can find your PTI here: http://www.parentcenterhub.org/find-your-center/

    National special education legal information here: http://dredf.org/special…/special-education-resources/

    Best wishes to you and your family.

  8. Erin April 29, 2015 at 8:22 pm #

    I have felt like throwing up many times on this journey. I also had my very first panic attack before a transition to kindergarten meeting. My daughter is 7.5 and in first grade this year, and we’re currently in a really good place with our team – she’s having a good year! I’m sorry your school district is going to make inclusion so difficult for you. Are you part of the Inclusion for Children with Down Syndrome group on Facebook? That’s a great place to ask questions. I also did the Inspired Advocate training with Julie Causton, which gets you access to her private Facebook group. I pin everything I come across on those groups and elsewhere – are you on Pinterest? You can find me at Erin Rowan.

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