Tonight was the main event: the IEP for Rowenna’s 4K year.
Honestly, I was nervous. After the surprise announcements from both of her teachers that Rowenna needed much more support than we realized, we had trepidations walking into a meeting where we thought we would essentially end up disagreeing with all suggestions. I’m also 39 weeks pregnant and in sort of a weepy, my-baby’s-almost-here state so I was a little afraid I would just sort of crumble.
Luckily, neither of those things happened.
Last week, hubby and I sat down with Rowenna’s team and had what amounted to a “The State of Rowenna” summit. We brought in a long list of questions and many examples of the work Rowenna does at school. In some ways, it was a very difficult meeting. You can prepare yourself mentally for your child to have delays, but to sit down and hear an honest assessment of those delays is draining. You wonder what you could have done better. You wonder if you’ve made the right decisions. Would more therapy, more reading, more flashcards have helped? We’ve always said we didn’t want Rowenna to be a “project” and someone to “fix,” but if we had taken that approach, would she have a different skill set? Do we expect enough of her?
And then the inevitable guilt that comes along with it: why does it bother me to hear about her delays – shouldn’t I just be brimming with pride at what she can do? And shouldn’t I be more confident about decisions hubby and I have discussed, then discussed some more?
So after this rather frank discussion (none of which was a terribly huge surprise – turns out our rose colored parenting glasses don’t shield us from much), we had a much better understanding of her teacher’s seemingly flippant comment about not attending an inclusive 4K. We also learned that it wasn’t an all-or-nothing scenario. Hubby and I came home and wrote a list of Rowenna’s achievements, our concerns for her education, and a list of goals for the coming year. I reached out to a few trusted Ds moms and got some feedback. I spoke to a few retired teachers from our local school district. And I spoke to my mom at length, thinking out loud as I often do in order to come to a point of clarity.
It turns out that our ideas were spot-on. The team came with a draft IEP, and everything they had prepared was reflected in some way in our own list of achievements, concerns, and goals. We only added two items to her goals, both of which were readily accepted. It is a strange feeling to sit at a table and have your child so accurately represented in writing, right down to her little nuances, but in many ways this is a comforting thing. Their recommendations are based on a true and full picture of Rowenna, not just a list of Rowenna’s delays.
So what will Rowenna be doing next year? She will be attending our neighborhood school (hurray!!) and split her time between a special education classroom and a 4K classroom. She will start by attending mornings only, then we will slowly add on to her school day until she attends for the full day. (Our district only offers full-day 4K and at this time we firmly believe Rowenna would benefit from this ramping up, rather than starting immediately with the full day.) Her therapies are a combination of in the classroom environment and some pull-out. She will have access to academic curriculum in both classrooms, not just the SPED room. We also discussed the importance of Rowenna being an integral part of her learning environment even though she is not there 100% of the time – we do not want it to be that Rowenna “visits” 4K.
We feel good about this arrangement and feel it fully addresses her academic and social needs. It’s a bit of a hard pill to swallow when the rallying cry of the Down syndrome community seems to be “all inclusion, all the time, and you’re doing something wrong if there’s anything less.” I’ve spent the last 3.5 years hoping this would be the most successful environment for Rowenna. But it just isn’t right now. I’d be lying if I said I didn’t feel like a bit of a failure here. Could we have done more? Worked harder? Should I have pulled on my armor and demanded that she receive all of her services in the 4K room? I guess I could have, but it wouldn’t have been right for Rowenna.
We feel the split is the best way to address her strengths as well as provide plenty of opportunity to do some serious academic work. The split is not the result of the school district forcing us, or the district saying “we can’t,” it is a choice we’re making for our family, and aside from the massive amounts of special needs parent guilt (and oh, what a precious brand of guilt that is!), we feel good about this decision. We also feel good about the idea that it’s a fluid situation, and she can spend more time in 4K when it’s right for her.
So that’s where we’re at. A good place after the sucker punches of unexpected news and a concerted effort to better understand her team’s perspective. Some tough things to come to terms with along the way, but overall feeling good that her team really does know her well and does have her best interests at heart. I know next year is going to be full of big, exciting things for our sweet girl!