Thursday, May 27, 2021

A Follow-Up About Respect (Day 147)


Before I begin on my long follow-up to last night's IEP blog, I just want to say a few words about the picture I included at the top. This is a picture of Mike, Lily and me. Lily has a little mallet in her hand and is the ringing the gong at the end of proton radiation. She had finished 6 weeks of proton radiation--30 treatments in all. For each treatment, Lily was sedated and then placed on a table with a mask on. The proton beam radiation was delivered to her tumor bed. 

She was 17 months old in this picture. I had no idea if she would live or die. I feared the only graduation she'd have would be at M.D. Anderson Cancer Center in Houston, TX--a graduation from radiation. 

I want you to keep this story in mind as I write more about her IEP and the respect my daughter deserves--and it isn't just her--it is all the kids who have been through things that are outside the range of "normal" for childhood. They are just children, who are forced to face adult things--illness, difference, injury, mental illness--and they deserve more than just a fair and equal education. They deserve our utmost respect. 

I want to clear one very important misconception: an IEP is to support students who have individualized needs that are causing them not to perform their best academically. This does not mean that they are students who are behind in subjects or failing or getting bad grades. In fact, I really don't think grades have much to do with it. It is truly about success in learning. In our house, I like to see a "good" grade; but what I love even more is to witness my kids working hard, learning and figuring out how to continue to improve. And if you get all As, where is the room for improvement?

That being said, as I mentioned last night, challenge and failure are normal. Drowning, however, is not normal or acceptable. IEPs stop the drowning. But they should never take away the challenge. 

In middle school, one of Lily's accommodations was that she could have shortened tests or assignments, if the teacher decided Lily was already showing proficiency in topic, she could shorten the test so Lily was still taking the assessment, but not need extended time. Two teachers just shortened all her assignments, Lily was getting As and Bs and then we were told "those weren't her real grades."  This did nothing for her and simply took away her chance to learn, be challenged, fail and succeed. 

These teachers  truly believed they were being kind. But, they did not respect Lily. Kindness is one thing; respect is something else entirely. If they respected her, they would have pushed her. If they respected her, they would have given her the grade that was her grade (if she does D work, she gets a D!). If they respected her IEP, they would have taken more time to understand it, implement it and work with us. 

What I am about to say comes my specific point of view and it not meant to be a blanket critical statement about teachers. I know teachers have endless things on their plate and such a short window (especially in these pandemic years) to teach the kids they have. And in general, my kids have had really, awesome, loving, talented teachers. But we've never had one year in which I did not have to ask the teachers to read Lily's IEP and point out the specific nuances it contained. 

Of course, this is a failing of our system and protocols--teachers are not in the classroom in the summer and those IEPs don't necessarily land in their hands in a timely fashion. So, I am not blaming anyone specifically, but I think it is important to fully disclose this to those who haven't walked this path. Our system fails the kids who have parents who think the teachers can know everything. The teachers, no matter how incredible, are only capable of addressing the things they know about. So, I work hard to make sure they always know. 

I do struggle with the patience needed to get through the start of the year with tense feelings and conversations--because every year is the same. In the end, everything has always worked out, because my daughter has truly good teachers. But the process, the push, the pull and the confusion, it is extremely frustrating. 

I don't know if the system can do better. But, I do know that I keep trying to do my best to educate, advocate and give grace. I work really hard to make sure teachers know I respect them and their classrooms. And my daughter does not need kindness or favors. My daughters needs to be respected enough that she is challenged, believed in and pushed to better than her best. 

I believe my daughter can do anything--and not because I have blinders on--but because I've witnessed her do things she was never supposed to do and succeed. 


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