She can build a birdhouse. At her school, hat’s part of science, not vocational training. But think: if she wants to become a photographer, she’s got skill for juryrigging light boxes and props.
This has been a challenging few weeks. We are scrambling to find the right fit for Amelia as her middle school is expected to close down in June, and it was only formally decided towards the end of last month. If you know anything about me, you know that I’m a huge advocate for inclusion. Research* has shown that inclusion provides:
- more academically robust programs for children with learning disabilities
- more success in school
- better outcomes for independent living and holding a regular full time job
- benefits to the classmates of kids who don’t have learning disabilities
On Tuesday, we went to tour the possible new school. We visited the local public school that Amelia can attend because they are better equipped for learning, instructional and special ed support. Of course, we brought Amelia.
As we toured the school – Amelia excited and running through the halls and the workout center – I felt a wee bit uncomfortable. The reps were speaking “down” to my 13 year old – and Amelia didn’t help, she was sucking up the cutesy talk. In fact, they kept forgetting that she is in 7th grade, and kept talking like she was in 5th.
Then we entered an empty classroom and met two teachers, who were talking about all the subjects. I was extremely confused what they were talking until the teacher said, “And then at lunch and specials, if they can, they join the others.”
We were officially touring the special ed room for grades 6-8.
Lord, please help me through this visit.
Amelia has been included in high percentages since grade 1. That’s SEVEN grades of 80-95% inclusion. Now, this year has been…crappy, let’s just say. There isn’t anything I could have done to improve this year for her because of the merry mess that was made of the middle school. That is not a topic I can freely discuss but suffice to say that she’s not honestly being included this year and there’s no way to work around it, either.
But the last 6 years? YES. And guess what? With that came better improvement in behavior, grades, and performance.
So when you ask me she is going to sit in a room with other kids with disability for grade 6-8 for most subjects and practice addition, or tell me that she’s not able to sit in a higher class, I’m gonna get fired up.
As I was standing there, heart pounding, taking breaths, begging Jesus for the peace that would be BEYOND human powers to settle in my heart, I was listening to the answers to my apparently nutty idea that she be fully included ACADEMICALLY. IN ALL CLASSES.
Vest and headphones adaptations for art class, same project as the other kids.
YEA, I know, nuts. It’s only been years and years of her classroom experience.
The question came, “Well, what level is she at? What program is she doing? In reading? In math? What are they…”
Now hold on, hold on! We’re on a tour, not an IEP meeting! So I said, “Well, I don’t know all those answers but we can find out. Either way, she’s been included from the start and I still want that. Are you saying you can’t provide inclusion? Are you saying this classroom is our only option? Because this doesn’t look like inclusion to me.” (I’m paraphrasing but that’s close to what I said.) The response? A bit of confusion and a promise that we work as a team, and it’s whatever I want, but unhappy faces all around me.
I didn’t intend to fight it out this early in the game but there you have it. I’m not going to hide behind politeness and shrink away from my beliefs. My daughter’s future hangs in the balance.
I had to work really hard not to cry on the drive home. I *immediately* emailed our inclusion expert, who had come over for training on Sunday, asking him to detail scenarios for me. He reiterated to me all the laws and terms and rights for an IEP, encouraging me that Amelia has actually done well this year in spite of everything. He is pleased with her progress, which gave me confidence.
And he reminded me what I knew: that it’s my right to ask for full inclusion and see it through until my daughter gets it. End of story.
And during training, he said two things that really blew my mind.
- I told him that many, many parents tell me: “Well full inclusion is great, but it’s not for every kid. It’s not a good fit for my kids.” He compared that to Stockholm syndrome: parents are beat down by the system they have decided to see the “up” side of a system that is actually less beneficial for their kids (according to research).
- He also told me that there are 6 levels of inclusion. Levels 0-2 cover “adaptations,” where kids are learning the exact same material but the delivery or adaptations are in some way different. Levels 3-5 cover “modifications,” where kids are learning different materials (i.e., learning time in 7th-grade math class rather than probability). He told me that he’s worked with MANY kids, and only for the most developmentally disabled would he consider modifications over adaptations, even that was extremely rare. In other words, most kids CAN learn the same materials if you adapt it properly.
If you think about it, you can make anything easier to learn, even if you are doing certain “hard” topics. And the really hard stuff is a choice you make in college and not all of us are suited anyway to study what we’d like. (Don’t ask me about my misadventures in physics, which I love but I don’t think that way.)
His opinion is that right now, neither of my kids are being pushed to their full potential because let’s face it, you need to PUSH kids and current school politics has unsettled the entire staff. I know I wrote about “The Loving Push” by Temple Grandin and Dr. Moore, which advocates for pushing kids with autism in order to help them succeed. But teens? They all need to a push, don’t you think?
Amelia is no different. We need to kick that bar way up. She can have an excellent life. NO ONE is going to rubber stamp “Down syndrome” on her head in order to fast track her to a group home and a life lived on SSI, not on MY watch.
But I’ll admit, one of my biggest sins is in play here. I’ve gotten comfortable, and part of that is having found a school “home.” Problem is, they got comfortable too and right now, neither of my kids is being pushed to their full potential. I’ll take the blame for that. I know I should be more on the ball, even though this IEP negotiation stuff reads to me like learning Latin. I know I’ve made choices I no longer think was the best options – but hey, I did at the time. No mama guilt, just live and learn.
As for my kids, I’m working to find time to plan more for them, weekly. God is prompting me.
In fact, I think God planned to have me right in the line of fire of all the crap that has happened at school. This has taken place so that I can overhaul what my kids are doing. My Zoe is top of her class – TOP OF HER CLASS – in 4th-grade math! We need to capitalize on that, don’t you think? Being good at math opens so many doors in life and career if you ask me.
Yet still, there is that little voice in my head that wonders if this is “too hard” for them.
And THEN I saw this today. Be prepared to be blown away:
If a girl with NO LEGS can be a world-class gymnast and do basketball on the side, then Amelia can learn to love math and master whatever she wants to do. We need to stop being soft. She is a hard worker and extremely resilient, I just need to find the way through to fire up her passions and make sure she knows that sometimes the work is not so much fun, but the destination is worth the boring parts.
The problem comes when people “look” at Amelia as a “Down syndrome girl” and believe that she cannot do more. She can do hard things. I know there can be a comfort level for kids at a pullout situation, but the time for socialization as my main reason for inclusion is passed. She is no different in terms of friendships and fears than any other 13 year old. She makes friends fast and struggles when one turns out to be something unpredictable, like a false friend or a bully. It’s time to work on academics so she can achieve her dreams and leave the life skills programming to me and her dad.
It’s time for me to step out of my doubts, fears and comfort zone and take my kids’ education to a better level. I’m not letting this opportunity pass us by!
*See the science on the benefits of inclusion:
