Mirroring of Experiences in Special Education: A Story of Transparency Part 1

Exploring Transparent Journeys in Special Education: Part 1 of the "Mirroring of Experiences" Series.

Ok, so I had said I wasn't going to write any more blog posts about special education right away. However, I thought I would expand a little more on my family’s experience. I’m sure there are people who may have felt that, as a Para, I might have been talking about specific situations that I have experienced in my job. You might even feel like the experiences I did list seemed to mirror a lot of what does happen or perhaps has happened to you and your family. If you feel that way, then I want to assure you, the experiences I wrote about, the specific ones, were related to my family and me. If those experiences seem to “mirror” what happens in special education, it is evidence that change is needed. Alas, my point of this blog is to put your minds at rest.

So, walk with me as I walk you through my life as a Special education mom.

A detailed and vibrant illustration of neurons, highlighting the complex network of nerve cells and their intricate connections within the human brain.

First and foremost, let me just touch on a few small things. Lots of people use the word “dysregulated” as a way to describe a child’s reaction to events. While I respect people’s choice to use those words, my family and I do not, and we have never used that word. Instead, we use the word “episode/s.” Let me explain why. Dysregulated indicates that a child with a disability (like my daughter’s) has the ability to regulate themselves and chooses not to. However, children with disabilities like my daughter can’t do that, because they don’t understand what is happening and why it’s happening. It's not a choice they make willingly; instead, their brain is flipping into fight-or-flight mode. So, to regulate our systems, we need to know what is happening and why, so we can respond accordingly. Children with autism or any disability that causes a child to dysregulate do not understand this. They don’t understand why the switch gets flipped or how to override it. That’s why we have to teach them and help them learn. So, for this blog and only in relation to my family, you will see me use the word “episode,” and if you do, just know that I'm talking about dysregulation.

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Second, when my daughter was in school, we were a one-income family. My husband worked 80 hours a week so we could pay the bills. I was unable to work, even after multiple attempts. Yes, we had two cars, but even then, there were times when we only had one working vehicle. So, we struggled financially, and my husband was unable to take off work for IEP meetings, so it all fell on me. Which, looking back, was probably best. I doubt the school district or the schools my daughter attended would have handled him or his temper. Because let me tell you, he is super protective of his daughter. That doesn't mean that we thought she could do no wrong; we knew some of it was on her. However, we also understood that a lot of the issues we faced were caused by the district and the schools. We disciplined our daughter, but disciplining a child with disabilities like our daughter is hard, especially when everything is deliberately working against you.

Third, my experience with the district we were in was nothing short of abuse, bullying, intimidation tactics, gaslighting, and manipulation. The things that were done to my daughter and us are something that, as a parent, I would never wish on anyone. We never received an apology, and I know we never will. We chose not to take them to court, not that I couldn't have won, because I knew we could. Yes, we talked about it, but we decided not to do so, because we didn't have the money for such a task (the reality was, the task would have been a long battle with costly attorney fees up front that we could not afford), and we didn't want to put our daughter (or our family) through any more stress than necessary. Besides, suing a school district would do nothing if things don't actually change, and that's what's most needed. Change. I want to see change happen in all schools, in all districts, in all states, in our country, for special needs kids and families.

Finally, I want to warn you now. Some of what you will read is hard, very hard. If you find yourself unable to read through that, I understand, but I don't want you to be surprised. Also, this will be a 2-part post. There is too much to include here, and I can't possibly put every specific detail in this post. I will take you along this path to a stopping point, including only the important details. Honestly, it might be best that way, you can process what you are about to read.

Now that’s out of the way, let’s begin!

My daughter was nonverbal when she was young. She didn’t begin to talk till she was about 5; even then, it was like a baby learning to talk, consisting mostly of baby garble. So much so that I had to say things to her like, “I’m sorry, honey, mommy’s ears aren’t working well today, can you show me?” Sounds strange, but it worked and helped limit the number of frustrations and episodes we had. For the time being, anyway.

A small red flag pin is placed on a white surface next to bold red text that reads "RED FLAG," indicating a warning or caution.

Starting School -

It was 2007 when we bought our home, and she entered kindergarten. She had an amazing teacher at that time, and yes, she had an IEP. She was already diagnosed with speech issues and ADHD, so she received support. However, as time went on, I started to notice some red flags. I saw that she would consistently switch or flip letters and numbers, even though she knew them. I questioned whether she had dyslexia. When I approached her Special Education caseworker at school, she brushed it off. At first, it was, "Oh, she will learn, that will come." Then she changed her tune, saying my daughter was just misbehaving and choosing not to do the work. I didn’t accept that, because I KNEW something else was going on. So I pushed and asked her again for advice on how to get tested and whom I should see.

At this point, the only testing my daughter had been through was with Child Find (a program offered through the school district we were in prior to Elementary), and her doctor had already considered her a behavior problem, so I got nowhere with her. Therefore, I figured the school might have some resources or, at the very least, give me a starting point. Instead, all I got was:

A young girl in a purple shirt intently studies, surrounded by colorful stationery, while a woman works on a laptop in the background, in a bright, airy room.

“She’s just lazy.”

“She just chooses not to do it.”

“I can’t give you that information.”

“I don’t know.”

“You will need to figure it out on your own.”

Obviously, I got nowhere with this, and yes, each time, the answer changed, so I didn’t know what to think! This went on till 4^th grade. Oh boy, 4^th grade. That’s when the real fun began.

When my daughter started 4^th grade, her regular teacher was out on maternity leave. So she had a long-term sub. No big deal, right? Right. That is, until December came and the sub left and her regular teacher returned. Can you guess what happened next?

(While you think about that, let me just interject that this particular situation was no one’s fault. Not the school’s, not mine, not my daughters. When I look back, I know that we saw signs of autism, but we didn’t know what it looked like then. Should the school professionals have seen those signs, or at least suspected them? Maybe, but maybe they didn’t know what they were seeing either. So, at this point, I would like to give them the benefit of the doubt, but I later changed my mind for clear reasons, and you will see why. Now that you have had time to think, let’s get back to the story, shall we?)

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Ok, so whether you figured out the answer or not, I’m going to tell you. What happened next set the wheels in motion for a long, difficult road. My daughter had started having massive episodes at school. The change completely sent her into a tailspin. So much so that she had her first suspension in December. Up until that point, my daughter was doing well. Sure, she struggled academically, but her episodes were limited to home. Not anymore.

From here, I will break our story down into points; otherwise, we may be here all week or at the very least all night. So here is where my story with my daughter gets crazy.

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4th Grade -

My daughter was suspended multiple times in 4^th grade from December to April.

We met, planned, switched her class, and still, things happened. However, I was called every day to come pick her up. My daughter tore up paper, flipped desks and chairs, threw things across the room, went after people, broke pencils, etc. What I later found in a written report was that all those things were initiated by the staff. We had agreed that when my daughter was escalated, and as long as she was safe, they were to give her space, back off, don't talk to her. We also agreed that she needed warnings for transitions and at times quiet places to work, like in the hall. The report, however, said otherwise. She was not given warnings for transitions. They offered her a space outside the room and in the hallway. At that point, they stated that they continued to get in her face, prodding her to talk. They stated that this escalated her. This was just some of the issues that they created as a result of going against everything we discussed and agreed on willingly, I might add.

The Principal told me to my face with both my mom and a district person sitting there, that, and I quote, “If you can’t discipline your daughter, Ms. Leffler, I will do it for you.” This was the first time they bullied me and tried to intimidate me. FYI, this person still works within that district.

At that point, I had had enough of what was happening. I pulled my daughter in April that year, and when I did, I was threatened that I could not do it, and if I tried, they would report me to the authorities. I did it anyway: I sent a letter to both the school and the district stating that I was homeschooling her until further notice. That was the second time they bullied me, but they never came after me.

I got an Advocate, and we got my daughter tested. Her results stated she had an Intellectual Disability and Autism.

We had one more IEP meeting; it included my husband, my mom (who had been involved and was paying for my advocate), and my advocate. It was in that meeting that I watched as the Principal played on his phone the entire time. He made it clear that day that he didn't care about my daughter or my family.

A textured background with the text "5th Grade" prominently displayed, highlighting an educational theme.

5th Grade -

We started 5^th grade in a new school, with an Affective Needs (AN) program. That teacher never did anything to foster teamwork. We would all agree on things willingly in IEP meetings. I would go home, prepare my daughter, and send her to school, only for the teacher to do the exact opposite of what we had discussed and agreed on. My daughter started to elope that year. Twice. The first time, she crossed a busy street and ended up four blocks from our house. Thankfully, the school's Principal followed her to ensure her safety. That was the same Principal who stepped in when he found out that his teacher was deliberately setting my daughter off by not following what we agreed on in our meetings. This was the same teacher who also told me that my daughter didn’t have a choice; she had to learn Common Core math their way, and then made me feel stupid because I couldn't understand it. Spoiler alert...this teacher is still within the district.

Promoting awareness and understanding of mental health is crucial for fostering supportive communities.

Mental Health Holds -

By 6^th grade, my daughter had already been in and out of a residential facility for mental health holds because her episodes had increased at home, and I was the target. I hated having to do those, but when she slipped into one, it was next to impossible to bring her out of them. Her eyes would glaze over, and it was like she wasn’t even aware. When she came out, she was always so upset. The only thing that usually worked to bring her out was her dog. Our dog, Dakota, never had any training, yet she knew when my daughter needed her. Sadly, that wasn't always the option.

"Whimsical watercolor design highlights the '6th Grade' experience."

6th Grade -

In 6^th grade, we asked for out-of-district placement. This was not working, and I knew that. We couldn’t afford to place her in a program outside the district, so we were at the district's mercy. Unfortunately, they said no. Why? Because they felt it was too restrictive, not inclusive, and that they didn’t feel she needed it. School started, and things went downhill further. We asked her to transfer classes before or after the passing period. They said no. Her first day, the sensory overload was too much. She ended up in the office, I got a call, and then I was told that they would have her pass between passing periods, because THEY felt it was the best thing for her. (Sound familiar?)

Sadly, the damage had been done. With all the times she was sent home, she began refusing to go to school. She hated school. She didn’t feel like she fit in or belonged. When I could get her to school, she was sent home. I would walk in to find tables and desks flipped. Her hiding under a table, paper everywhere. You name it. I saw it.

A child sits hunched against a wooden fence, seemingly lost in thought or emotion, surrounded by a mix of grass and fallen leaves on a quiet, weathered path.

This was the same year that the special education teacher asked to come to my house with the resource officer to “talk” to her. They lied. They came to talk, yes, but they agreed to leave if she still refused. That’s not what happened. Instead, they literally dragged her out of my home. I will never forget that. I was crying, my daughter was screaming (my daughter who has an aversion to touch, by the way). The officer had her by the wrists, and the teacher had her by the ankles. My daughter was hanging between them as they walked up and down the stairs in my home to the officer's car. I watched in horror as they drove away. They told me not to follow. I even watched as she got the back passenger-side door open and ended up hanging out of the car, head down. The officer stopped, pushed her back in, and child-safety-locked the door. I regret that day, because an hour later, I was called to pick her up.

Then, at an IEP meeting, my daughter attacked me right there in front of everyone. No one moved. No one said or did anything. My advocate was the only one trying to help me, while I was screaming for her to get off me and for help. Afterward, the district said it felt it was in her best interest to receive an out-of-district placement, as if it were their idea. (The second time this happened.)

Unfortunately, my daughter ended up back in a residential facility, this time from November to February.

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This is MY story, these are my experiences, but I know firsthand that there are parents in our special needs community who feel the same as I have, and it's time that we demand that these issues be fixed. One family is wrong, multiple families, and that's what we call a system problem.

With that, this marks the end of Part 1. Part 2 will be next. I’ll share what happened at the residential school, including when she eloped in a dangerous area. You will also hear about the legal steps that were taken, as well, and don't worry, if you have read my other posts, then you know how our story ends. So I promise some positivity will come from this.

Until then, if anything I said in here resonated with you, then I am so sorry. No family should have to experience this. Mirrored experiences do happen. While the specific details might differ, the outcomes of these experiences do not. The resulting outcomes are always the same for many families: distrust, betrayal, bullying, intimidation, dismissive behaviors, and, overall, the feeling of being trapped.

K. M. Leffler