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On Advocating for My Daughter With a Disability and the Abusive Relationship With Our School District

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When I was younger, I used to mull over past relationships with that natural urge to figure out what went wrong and how I (or they) failed. It’s human nature to want to identify the dissolution of a relationship and assign blame or chalk an experience up to mismatched timing. However, as I got older and settled into an established relationship those concerns slowly drifted away and my focus and emotional health shifted towards other areas of concern. As the parent of children with complex medical needs, this often meant advocating, fighting, and sometimes wallowing because let’s face it — arguing with every single so-called authority figure gets old.

I used to call myself a skinny punk with a problem with authority, now despite my gradual shift into middle-age, I find myself still fighting authority and it’s exhausting. From school administration to medical “professionals” to therapists and the occasional know-it-all mom who wants to tell me how to properly parent (we all know that one crunchy mom who swears breastmilk will fix the world), it is pretty clear that the system was not created to fit my children.

The other day, however, I realized something rather significant, but also incredibly unsettling despite its validity. For the past several years I have been in an abusive relationship with our local school district. At this point, you might be pulling back a bit, but any parent of a child with a disability is likely going to pause and relate to what is coming. As the parent of a 2e child, the school district and I were never likely to get along, but my local school district took it to a new level.

Like the start of most abusive relationships, the district was charming, helpful, and seemingly effective at first. In fact, the only difficulty was slowly transitioning my child into their care, but we made it. That should have been the first sign that the onus was on my child to adjust not on the district, but I looked the other way. The second sign should have been when I started complaining about the way certain services were being utilized, taking a child with high sensory needs out of recess to do OT (which despite my constant complaints only focused on handwriting) seemed extremely counterproductive. Once again, I looked away. So much so that I let my daughter scream and pass out in the “rocketship” playhouse from exhaustion while trying to assimilate, but I thought I was doing the right thing. Because they told me so.

Unfortunately, our relationship eventually shifted from a series of red flags to an all-out assault. An epic IEP battle ensued in which they proved they were not above manipulation and threats to get what they wanted —which had nothing to do with the best interests of my daughter. They denied her medical diagnosis, out of a 500-page medical record took the one quote that supported their purpose to include in her ETR, and effectively ended our school relationship.

Even more enraging, like a typical abuser they had no problem gaslighting the situation to make me look responsible. They had no problem repeating in the ETR several times that parents were given a choice, and I was unwilling to take it. What they failed to mention was the choice I was given was to opt for my daughter’s medical well-being or her educational well-being.  It was nasty, it was wrong and I thought it was final. Realizing that the school district and I were not meant to be and that they clearly did not have her best interests in mind, I withdrew my daughter and began homeschooling.

Naively, I still thought there had to be accountability and culpability so I took my complaints to the SPED director and walked away feeling I finally had closure, but I didn’t. Every time the preschool came up I felt that same deep ache in my gut, an ache I haven’t been able to shake. Last year our early interventionist accidentally wrote the name of the school psychologist on my younger daughter’s paperwork instead of mine (we ironically share the same last name) and I was hit with a wave of shaking anger, tears and panic.

Then came part two of the equation — I went back to them. Like most abusive relationships, I eventually returned to the district to tactfully explore if they could be better the second time around with my second daughter. I rationalized that if I could just get a new evaluator (which seemed fair given our contentious history), perhaps the district could provide her more effective intervention. My error was in assuming the SPED director was any better than the individual administrators I worked with prior, I was wrong.

At first, we exchanged emails and he stated he had no issue with her being screened by a new official. Everything seemed great, I forwarded the email exchange to my early intervention coordinator who would help with the transition and we waited for her birthday to come along. As we got closer no one was contacted, so I reached out again and was told that actually I had to not only work with the same administrator, but she had to sign off after screening my daughter for her to see another evaluator.

Suddenly the same pit in my stomach was back — and it only deepened when my EI coordinator told me she had never heard of such a practice before. Confirmation that the district from the top down was clearly unbothered by accountability and/or responsibility. It takes some gumption to change your story in an easily documented email chain — but here we were again. Only this time I am even more furious. Getting duped by an abuser the second time stings, but it’s not just about me. Think of your worst heartache in the world, now think about your kids and consider that it’s their loss instead of yours. The rage is almost unbearable.

Unfortunately, I cannot escape this abuser because every year I am forced to write NOIs to the superintendent of this district. Forced to receive school bulletins sent to the community that brags about inclusion and diversity — which I know is a straight lie. Only if you acquiesce to their demands. Forced to attend Girl Scouts in their buildings and to have to smile as the young children I know tell my daughter all about what they did in school, while I die a little inside every single time.

“It’s their loss,” I commonly repeat to myself like a mantra to help reduce the pain and agony I feel inside, but it rings a bit hollow when my daughter mentions the “big fight” that led to her being homeschooled. The rage I feel when she tells someone that “Miss Amanda” was like Hans in “Frozen” — she pretended to be nice but wasn’t. Five-year-olds should not be forced to deal with the fallout of educational politics, but here we are.

I’m not sure yet how to channel that loss, how to fully heal from the abuser whose presence is spread throughout my community and life. I know I am not alone, however, as there are thousands of 2e parents online reeling and spinning from similar abusive relationships with their own districts. I don’t have a magical answer or solution that will hold districts accountable for their callous actions and ability to hide behind deliberately vague verbiage.

What I do know is that my daughter is now finally receiving the very best individual education protocol — and that will have to do for now. To everyone else still fighting an uphill battle — I just want to say that I see you, I am you and I am cheering you on.

Photo credit: Tonktiti/Getty Images

Originally published: August 26, 2021
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