Unexpected, Unanticipated

It’s been a strange few days.

I write here for…well, to be frank, I write here for myself. I process through writing, but I make Ro’s story public in hopes that every once in a while it speaks to someone else.

I write my truth here, though sometimes it is scary to share and other times I worry if the right (wrong?) person saw it, I may cause some pain.

Causing pain is never, ever my intention. If you have read something here and it hurt, I hope you can take me at my word that it was never my intent. Not to put too fine a point on it, my hope is to always cultivate something good here, though I suppose some growing pains are part of the territory.

I rarely speak about my blog “in real life,” and I rarely meet someone who wants to speak to a specific post. So imagine my surprise when I was called to the principal’s office (yes, literally) to talk about my blog and the things I’ve written in the past month.

Seems I’ve made a bit of an impression. I don’t regret the things I’ve written, and I still hold them as my personal truth, but I did not mean to cause personal harm.

I won’t be going into detail, but I will say this: in the course of their trying to explain, I believe I’ve seen yet again how deeply ingrained these beliefs about disability are in our current district. I understand and respect what was said during the meeting, but I’m not sure we left with a mutual understanding.

There was something said, though, that caused me to pause and think. One of the people at the meeting explained that there was some concern about how I would react if I saw Rowenna not fully participating in the end of the year program, and that was why they tried to make it seem like it was ok for Rowenna to not attend. Other parents have had varied reactions to seeing their children not completely engaged in the program or seeing their child leave the risers altogether and refuse to participate.

It struck me as odd that they thought they needed to manage my response in this way. Throughout the year, when presented with the possibility that things may not go as expected with Rowenna, my response has typically been a resounding “meh.” It doesn’t upset me if Rowenna is given a chance to try something, and for whatever reason her response doesn’t look like her peers’ responses. For me, it’s important that she is given the chance to try, and that the team brainstorms ways to help her succeed.

But I stepped back and thought about what my response would have looked like 3 or 4 years ago, when things were still fresh and my relationship to disability was something entirely different. I thought about what it might be like to be a parent whose child wasn’t born with a diagnosis, or a parent whose child’s diagnosis still feels big and scary. And maybe it made sense that the school was trying to help my reaction – a reminder to myself that I need to ask more questions when people say things that sound a bit awful.

After a successful dress rehearsal in front of the school, we decided to let Rowenna try the end of the year program. She spent some time happily standing on her spot on the risers, smiling and clapping as her classmates sang. She spent some time sitting on the risers. She spent some time walking in front of the risers, heading to the corner to dance and smile. At no point did she seem disengaged – she was quite happily participating in the way that seemed to make sense to her. Her classmates took this all in stride.

And if I were to be brutally honest with myself, if something like this had happened when we were newer to it all, I probably would have been wrecked. I own that. There was a time that seeing this would have stopped me in my tracks, made me cry, made me mad. There was a time I wouldn’t have believed that down the road this wouldn’t bother me at all. There was a time I would have nervously glanced around and wondered what other people were thinking.

But that just isn’t the case anymore. I watched my girl soak up that experience with the biggest, goofiest smile on my face. I delighted in her delight. I was proud of how she walked in with her class and wore her mortar board throughout the presentation. And when she accepted her 4K diploma, I wanted to jump from my chair and crow “that’s my girl!” When someone came up to me later and told me she so enjoyed watching Rowenna, I believed it because I know it’s true – there’s just something about her.

Not exactly the reaction the team was nervously trying to manage.

It struck me that it’s probably more common for schools to be working with parents who are brand new to a diagnosis. Parents who are possibly experiencing a wide range of emotions about an unexpected path. Parents who haven’t yet had the gift of time.

Those fresh reactions coupled with a district culture of segregating students with disabilities make for some awkward situations, it seems. It is clear they aren’t quite sure what to do with me, this mother who believes fiercely and unapologetically that her child belongs. That if her child dances off stage instead of on, it’s ok. So perhaps I was a bit harsh in one of my posts, and certainly I should have asked more clarifying questions. All that came on the heels of a month of being led to believe that the school wants nothing to do with Rowenna, and I admit that my reaction was a bit hot.

So I’m left to wonder: what now? How hard do I push, and in what direction? How do I cultivate a positive relationship with the district that results in long term changes? How do I meet the district where they are, and respect that place, while still pushing for necessary changes? How do I speak my truth now that I know I have an unexpected audience?

Lots to think about, and so much hope that we will have a great plan in place after this week’s IEP meeting.

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3 Responses to Unexpected, Unanticipated

  1. barbara June 9, 2015 at 8:54 am #

    My son is 24, with Down Syndrome. So I have been out of the school system mind set for a few years. And fortunately my district was much more accepting of Dylan for most of his school years. But there were times that I turned Mama Bear on them and pushed hard. After each of those incidents, I always took the time to let his team know that I was sorry I came across harshly, and that I believed we COULD work TOGETHER to give Dylan the best possible outcome. I never apologized for what I said, just my manner of saying it. And it helped smooth out our relationship over the long run.

  2. Pam June 11, 2015 at 10:45 am #

    What’s concerning about the reaction of the school is that they seem unable to react in a constructive way to how your daughter might engage differently. It’s as if it makes them uncomfortable. Honestly, who cares if she doesn’t sing or sit still. She’s participating. She’s a part of the group. And if other children are given the message–by their teachers–that this is just how Rowena participates it won’t be a big deal to them. I am in a school district that does inclusion incredibly well. I’ve seen the difference between what you’re describing and what a school district that understands how to effectively include and educate children with disabilities. From what you describe, it’s quite a large gap. Keep advocating and pushing. It may be uncomfortable for them to hear they are not doing things as well as they should, but things won’t ever change if they don’t hear that message. Perhaps you might be able to convince the principal to visit a school that does effective inclusion?

  3. Valorie July 11, 2015 at 9:40 pm #

    I can SO relate! At our son’s PreK program, my husband/Chase’s Daddy, had to go up on stage with him. My Mom and I sat in the audience and loved every moment of it. Chase participated to the best of his ability and my husband looked adorable up there with all of the little ones. :) However, when it came time to get his certificate–I completely fell apart! Chase was going to have his open heart surgery 3 weeks after graduation and it struck me that THIS mighty be the ONLY graduation for him! It even made his teacher cry! God is SO GOOD, Chase came through the surgery with flying colors–we were sent home 4 days after OHS! Fast forward to today and he has done a # of programs–some great–others not so much…He had a 5th grade “promotion” and did well, but was completely ignored when they called his name and he was not given his certificate like the other kids. We won’t be back to that school, so they didn’t care…inclusion was mostly non-existent for him. Now we are getting ready to jump into middle school…we shall see what happens then! Thanks for your post!

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