The gift of unfair and inequitable (Day 146)

Little Lily with her walker. 

Lily has had an IEP (Individualized Education Program) since she was in preschool. So for the past 12 years, Mike and I have had to manage the entire process of evaluations, meetings, accommodations, implementation, revisions, enforcement, begging, pleading, explaining, frustration and educational management. 

It's hard for someone with a child without an IEP (or a 504) to fully understand the emotional toll this entire process--aimed at providing our daughter with a fair and equitable education--takes on us as parents. Truly, there is not much fair and equitable about the whole process. 

But, then not much of life is fair and equitable, is it?

And before I continue on, I want you to know that Lily's knows I am writing about this and there is nothing secret or shameful about her IEP. We were long ago humbled by that brain tumor and if anything, Lily's ability to be honest about her struggles is one of her most beautiful qualities. Show me the teenager who has to tell a teacher she needs extra time on a project because she lacks the stamina to write for long periods of time? Or the teenage girl who plays a high school sport and has to tell her coaches that she cannot run down the bleachers because of her balance issue post-tumor. 

I only know one--and that's my kid. We are proud of every piece of her--IEP and all. 

Anyway, a typical IEP meeting process for Lily looks like this: a spring review meeting, in which the teachers discuss her performance and how the accommodations in her IEP worked. In the early years, when I still had a little ego left, I'd leave these sessions irate and defeated. In preschool and early elementary school, Lily was still recovering from her brain tumor. She was still catching up on the physical developmental milestones that she missed because she had brain surgeries and radiation. 

I used to say at every meeting that I wasn't sure what they expected. How many skills did they expect Lily to master while also trying to get back lost time?

But, then I toughened up. My questions became statements. And my requests became expectations. 

After the spring IEP session, the summer (a blessing!) arrives and then when the new school year starts, I always had to check in with all of Lily's teachers--from the classroom to the art room to the gym class--and make sure they understood her IEP, her accommodations, our expectations and that we'd be watching. 

I used to feel like a psychotic helicopter mom, demanding teachers come to a meeting with me, but the one year I decided to back off a little, in 7th grade, there was hell to pay. So many things in her IEP were not followed. So many teachers did not seem to understand that Lily was so much more than that piece of paper. 

And there was the tendency that has existed at every school she's attended, to place Lily in the "IEP" track of more supported, basic, slower paced classes. 

Which is absolutely the last thing my exceptional daughter needs. And there is nothing wrong with needing more supportive classes, but that lumping in was absolutely not individualized, nor was it fair or equitable. 

So we fought for her. And then, slowly, Lily began taking on the fight for herself. She demanded French 1 in 8th grade, instead of a study skills class that did not serve her. Two days after emergency brain surgery to revise her shunt, she asked for a meeting at school to switch her first marking period schedule from having PE to having health class, because she was not allowed to participate in PE for 6 weeks. We zoomed for her end of 8th grade IEP meeting and she laid out what she wanted for high school--college prep classes, electives and of course, French 2. 

 In 9th grade, when her scheduled arrived with non-college prep classes, no electives and no French, Lily was devastated. 

Again, she was slotted  in an IEP track. Again, not fair or equitable. 

But, I advocated and everything was changed. 

Lily performed this year--better than ever before--in advanced and accelerated classes. It is not that it was easy for her--and she certainly leaned into her accommodation of having extended time when she needed it--but she did the work and she did her own advocating. She failed sometimes, but then she'd get back up and try again. It was hard, but she wasn't drowning, she was learning.  I had no idea how much of her own cheerleading and communication she did until we had her IEP meeting yesterday. 

Lily did it all. And you know, it isn't fair or equitable that my daughter had to endure a brain tumor and then be a teenager forced to face, acknowledge and publicly communicate her struggles. But, it is a gift. 

Lily learned early on to be humble and honest about her needs. She learned that everyone will always have something---some struggles that hold them back--she just got her struggle from the starting gate. 

She's strong and so determined to break down barriers, remove misconceptions and to just be a high school girl. 

And isn't fair. It isn't equitable. But it is a gift to see her rise up, show up and grow up. 


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