Monday, October 25, 2021

5 Minutes of Advocacy (Day 299)

Tomorrow is parent-teacher conferences for my high-schooler.  I have 5 minutes with each teacher. 

And I am riddled with anxiety and filled with plans to somehow avoid attending; even though I know I would never miss these conferences. 

My emotional turmoil is not because I think my daughter is anything but smart and lovely and brilliant. It is because I know there will be things that pop up surrounding her past diagnosis, more recent shunt failure and current performance in school. I know the teachers will be whomever they are already--a mix of lovely, tired, frustrated, kind, difficult and complicated human beings. I don't know how much the teachers really know about my daughter--this is the first year in a while that I haven't written to every teacher and explained my daughter's complicated and extraordinary history. 

She requested to do that; and she should. She is 15 years old now and this journey through childhood cancer and schooling is her journey. It isn't mine--not really. Even though somedays it feels like mine; that's just me mentally hijacking the lift of it all. I have a role in her education; but in the end, it is her lift. 

I am not the one who has to find her way through high school. I've already done that. It's her turn. 

And I am so emotionally and mentally exhausted from the constant work managing her education and her IEP; that a huge part of me is ready to hand her the document and say "good luck!" But, of course, I would never leave my child drowning in that sea of papers and explanation and communication and rules and rule breaking and confusion. I've been drowning in it since the beginning. And if my daughter reads this--I want her to know how worth it she is and how I would not change anything because to do so would be the change everything. 

I'll drown over and over and over again if it means my daughter is given an equitable chance at an education. 

But, it should not have to be this way. 

The educational system is broken in so many ways. Children who need accommodations, like my daughter, often receive them, but it is a constant cycle of communication and meetings and procedure. The annual move up to a new grade presents an endless annual cycle of problems--new teachers don't have the time to get up to speed on the new students and their educational plans. Sometimes the accommodations are written so specifically that they reduce children to a "how-to" list that takes away the ability for teachers to meet them in flexible. human ways. But, then if that specific list does not exist, children can be lost and left to struggle needlessly, when simple,  but critical interventions like extended test time and printed materials could make all the difference. 

In the end, the law requires school compliance; but the expectation is always on the parents and student to advocate and make sure the IEP or 504 is followed. No matter what the legal requirements of special education--what happens is reality is endless advocation, communication and follow up. 

For our daughter, things have always worked out--because we worked. It is this work that is so exhausting and so demoralizing. Now, as our girl gets older and wants to take the lead, the weight falls on her in a way that is unmanageable and inequitable, as compared to her peers. She needs something printed--she has to ask for it. She wants an accommodation--she has to specify it. She requires extra time on a project--she carries the burden of asking and advocating. When she does not ask, she is asked why she did not or we are told, "you just have to ask!"

All we do is ask. The burden is endless. And what teenager has the skills to endless advocate and hold adults accountable for their non-compliance or their innocent ignorance? The mental energy this all requires takes away from the mental energy needed to be succeeded at academics--part of an endless cycle of fighting for equitable access and then getting it, but being so exhausted from the fight, that she is unable to take everything due to her. 

I don't know what the solution is. But I do know this is a heavy burden for parents, like me and more so for children like my daughter. I don't think one group is to blame; but the holes and breakdown in the system are everywhere.

And 5 minutes is not enough time to explain this all to a teacher--I think is at the crux of my anxiety. I have 5 minutes to explain, advocate, communicate and establish a relationship with a teacher; who will not be her teacher in another few months. Just 5 minutes to change the world for my child. 



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