Heartbreak and Lessons Learned

I toured a school for Rowenna this morning, and while I think we’ve found a good fit for next year, the failure of the current school year came careening around the corner and knocked me down.

The district has been flat out wrong about a lot of things in the last few weeks. There is most definitely an overall culture of segregation, a culture so deeply ingrained that very few even question it, a culture so deeply held that in the year 2015 a 4K student with Down syndrome not immediately entering the “cognitive disability program” is the first to do so.

But I’ve been wrong, too. I’ve been complacent. I’ve accepted no news as good news. I’ve accepted receiving papers and newsletters and artwork weeks late, some things even past their due dates. I’ve been so grateful for Rowenna’s opportunity for inclusion I failed to ask some very important questions throughout the year to make sure that inclusion was actually happening. I’ve put more trust than was warranted in her current school team.

Reflecting on the last year, there have been some red flags that would have alerted us to the possibility of their recommendations over the last few weeks.

The papers have been late because her cubby was moved from the regular education classroom to a little hook in the special education room – a move I knew nothing about until I showed up to chaperone a field trip last month. No one is taking the time to bring the daily papers and artwork to her backpack. She is so removed from the classroom that she doesn’t even have a place to hang her things.

There’s been no news because there have been no opportunities to create news. They don’t even use her PECS book properly (there’s a whole system behind those little pictures) and didn’t even start letting her try to use her voice until May, despite me sending it, religiously, since January.

I didn’t ask. I wasn’t as physically present in the building as I could have been. I didn’t make sure. I didn’t advocate.

I assumed that all the “she had a good day” reports I received meant something. I thought we were making progress. I thought she was part of the team. I took them at their word when they said they were “using” her PECS book and knew how to do it.

Today, I called to talk to the regular education teacher about Rowenna’s birthday next week and about the 4K graduation/sing. I was told I could send a treat or not, it didn’t matter. No invite to come to the class. No invite to fill out anything for a Student of the Day type activity. I was also told that we were welcome to not bring Rowenna to the 4K graduation/sing because she “probably wouldn’t participate anyway.”

They’ve been practicing this for weeks and Ro has been struggling. No one called me. No one sent a note. No one asked for ideas of how to accommodate her needs. They assumed she just simply wouldn’t come. (And this preparation primarily took place before we even broached the subject of Rowenna repeating 4K, so there’s no excuse for not finding a way for her to participate.) They excluded her completely, and told me, point blank and without shame, that we were welcome to just not come at all. Or if we did come, maybe we could just sit in the audience and watch so Rowenna didn’t disturb the program. The only class performance they have this year. The culmination of a year of learning and fun and hard work. And my kid is welcome to not come.

My heart is broken. How did I let this happen? How could it have all gone so wrong, and is this what we have to look forward to every year?

The school, the district, her team didn’t hold up their end of the bargain, but I didn’t either. I can and will do better next year. We are already off to a great start – the principal at the new school wants to meet with us again (at her invitation, whereas meeting with the current team is like pulling teeth), the teacher at the new school wants to partner closely with us, and every single person I met at the school told me they are so excited to have Rowenna come on board. They haven’t met her in person yet, but they embrace her as a unique child who will add to the school community.

I have a list started of the lessons learned this year and how we can do better to support Rowenna. I see the work that needs to be done, and she is more than worth it. Rowenna will continue to shine, but next year she’ll have an even stronger network to support her.