Category: Blog

The Legend of Estes Park

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There was a story that my uncle used to tell my cousins and I growing up. It was a horror story. Excuse me, it was THE horror story. This story included everything that nightmares are made of.

This story was usually told in Estes Park. You see Estes Park was also the location of this story.

We stayed at a cabin there in the summer sometimes. At night when we were about to go to bed, the story would start.

It was often told when we kids were cuddled up in bed, brave, obviously because we were together. The story included a flashlight on my uncles face with the lights out and usually ended in one of our legs being snatched or grabbed at. Or the flashlight battery “running” out. There were a few times that this story was told closer to the actual location of the story. An old abandoned cabin. The scene of the crime. Or part of it. The last act anyway.

This story starts like all stories do, on a dark cold stormy night. There was an engineer working on some machinery after hours at a factory. The company that he worked for was all about safety and the first rule was, never be alone while working on the equipment. The story is fuzzy after all these years, but I believe the equipment may have required two people. One to press the emergency shut off if needed. This man was of course above the rules, and was working alone that night. The machine that he was working on was a special kind of press that compressed things into cubes. Unfortunately for this man, he got stuck into the machine. Being dragged in and his head being pressed into a cube.

When they found him the next morning, he was alive, but unfortunately had a cube for a head. He was terrifying to look at- they screamed as they saw what was left of his features. One big gaping hole where his mouth used to be. The company knew that this could not get out. And this man was too terrifying to look at, so they devised a plan. They found an old abandoned cabin and chained him to the top floor. If you enter the cabin and listen very carefully, you can hear the chain dragging on the floor upstairs. This was how Cubie came to be.

This story was best told on the drive where we had to pass by his cabin. My uncle would start the story a mile or two away from the cabin and we knew what was coming. We were terrified but also exhilarated with the fear of it all. He would start slowly and calmly, like any old story, but as the story progressed, so did his voice. His timing was impecccable really because we would end up right in front of Cubies Cabin right at the part where he would tell us how he was chained up on the top floor. At this time, the car would all of a sudden stop working. The headlights off. The engine killed. Screams filled the car as my aunt protested telling him to stop scaring us. In the light of the day, we would see the cabin and sometimes even go inside of it. We couldn’t see Cubie though becuase the stairs to the top floor were boarded off.

This story was the ultimate thrill. My Goosebumps books had nothing on Cubie.

When my two oldest cousins and I were early teens, we were on a camping trip for our church. We three shared the tent with three other girls. When it was late and we were telling ghost stories to freak each other out, my cousins and I pulled out our Cubie story. Telling it as masterfully as we could, we were shocked to not see them trembling in fear. They were not horrified, they were not afraid. They just started at us blankly. Maybe they went into a catatonic state based on the pure terror of it? ‘So,’ one of said ‘what did you think?’ One of the girls answered, ‘Wait… so I don’t get it it. Is his head just a cube then?’

It was in that disappointing moment that we realized not everybody is sophisticated enough to understand the true horror of Cubie. That day I learned that the world is divided into two types of people. People that understand the complexity and horror of Cubie, (my cousins and I) and the rest of the world.

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Switching Schools

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About a month and half ago, we switched E from the autism unit within the local school district to a private autism school. The process was horrible. I have wanted to write about it in order to bring attention to the different struggles of getting a fitting placement for a neurodiverse child. The school systems in general are built for a specific type of learner and the others fall to the wayside. Take myself as an example. As an undiagnosed teen with ADHD I just barely graduated from high school by adding different internships to replace failing grades of other classes. My problem was I never remembered assignments or very much underestimated effort and time needed. The seeming contradiction to a student like myself who was just barely surviving high school is I was actually very smart. I was invited to the honors ceremony because I placed in top 5% nationally for ACT score. The school system is not always kind to those outside the mold. Not blaming teachers, but the system as a whole. Testing, funding, availability. Since I graduated, there have been more charter, stem, magnet schools available in addition to vouchers for private schools. I’m all about the progress but there’s still a way to go.

I have put off recounting this terrible experience because I honestly was not sure how I would abbreviate it into a blog post. There’s just so many details. It’s hard to know what to include and what to exclude to get the point across accurately without running on. In addition, I get heated when talking (or writing) about it, so emotion blocks my ability to recount it in a clear manner.

I’ve decided to give a little background and let my two letters to the district SPED director mostly tell the story.

Here it is:

After talking with different people on E’s team various times- school nurse, teacher, school counselor, principal- and having an official meeting, E’s educational needs were still not being met. I called around different autism schools to inquire about placement and pricing. One of them told me that the district can pay his tuition if his needs are not being met with his current placement. I looked up the PA Parent Guide to Special Education, and found that to be true. It stated that in order to do so, have them pay, you must officially request the alternate placement for your child and the district has 10 days to respond with evidence to the contrary or place him with a new school. 

Another thing to be noted is that E was supposed to have an aide due to his seizures and behaviors. I was told time after time, they were still looking for someone. Here is my letter to the district requesting new placement:

I would like to reconsider E’s current placement at [district] Autism Classroom. 

While I have been grateful for everything E’s team has done for him and the accommodations made, I don’t believe at this time E is getting an appropriate public education. I wish to place him in a private autism school. Specifically, [A School or B School] based on availability. I have called them both and explained E’s challenges and accommodations needed and they are both willing to work with those. I am asking at this time that the district pay his tuition. Stated below are the reasons that I don’t believe E is getting the proper education that he needs.

E has epilepsy. He has partial seizures. These are characterized as staring spells and often repetitive behavior. He can have many throughout the day, varying in different lengths. E is currently on medication for seizures and as we get him up to therapeutic doses, we hope that his seizures can be reduced. However, they may never go away completely, or get below the 3 a day amount that they are sending him home for at [school]. His plan of care from the doctor has not been properly followed. If the plan of care was followed, he would not have missed a day because of his seizures. There have been two instances where E has started to choke because he was eating when a seizure started. Other than choking hazard, his seizures don’t present anything that validates him being sent home from school. Many kids with even higher frequencies of seizures are able to stay at school. E needs to be at school. We did not have issues with this at his former clinic in Ohio. E has completed at best, 7 full days of school since his start date in November.

E has some pretty serious behavioral issues. His meltdowns can be long and can get aggressive. He started having meltdowns around the 2:30 mark at school, and they suggested that we have him go home an hour early to avoid this. I don’t mind doing this if needed, but in another placement more effective for E’s behavior, this would not be necessary. He requires a BCBA on staff all the time. There was an instance at [Elementary School] when they were trying to try on a harness for E for the bus. He had a major meltdown that went on for over an hour. They had to call in a BCBA from the district to help diffuse the situation. I am grateful that nobody was hurt in the hour or so leading up to the BCBA coming. E has broken my nose on 3 separate occasions during a meltdown, and I have sustained many bruises and blackeyes. It is not safe for the staff or for E to be at school without a BCBA on staff. 

E requires one-on-one instruction. He requires a very individualized plan for learning. This helps him not just with his behavior, but it helps him learn things easier. 

E’s VBMAPP scores have gone up a few points since starting [Elementary School], this is a big drop from his rate of progression that we have been seeing for the last 4 years in his last setting. This age is so pivotal for children on the spectrum, in terms of progress. I know that he is capable of achieving more than he has the last little while. 

I am extremely grateful for his team and all the help and effort that they have put into E. I just don’t believe that the resources they have are able to accommodate E at this time.

How can we move forward in enrolling E in a private autism school? 

Thank you,

Annie

I received an email back from the special ed director asking if she could call me the next day and talk about the email. In the meantime, she must have contacted his team to find out what was going on. However, the SPED director had been in on all the meetings, so this information/request from me couldn’t have been too much of a surprise to her. 

The next morning when dropping E off for school, the school nurse cornered Eric and started to berate us. Saying, she has tried everything to help us, but I don’t seem to want to be helped. That I have sat on my butt and done nothing to help them better help E. She accused me of not giving E his seizure medications. She told Eric that I must not care very much about helping my son. When Eric told her that he was unsure what she was talking about with some of the paperwork, she told him that he needed to step up and be a full time caregiver. There was more said, but these are some of the main points. In addition to this, she had this conversation about my son’s private health information in the hallway with people walking in and out going to class and such. Major HIPAA violation. I had just about everything backed up with some type of paperwork so her lies didn’t hold much water in the legal scheme of things on my end, if someone were to question my parenting. I had seen the nurse act in this way before. Extremely defensive when a situation caused her to look bad. Her forgetting that E had Celiacs when we were talking on the phone on one occasion despite the paperwork filled out. “It was the other nurse’s fault for not making her aware.” Blaming E’s doctor for his “unacceptable behavior” – That being his plan of care for E’s seizures. She thought that she should be using his seizure stopper medicine after 3 minutes and sending him home after 3 seizures instead of his doctors orders. This was a bit of a pattern with her.

This is the email I sent to the SPED Director the morning of the encounter after Eric told me what had happened.

This morning when my husband was dropping E off for school, the nurse pulled him aside and had a conversation with him about E care that became quite confrontational and completely unprofessional.

Last week, E was sent home early for seizures. I talked to the nurse and we discussed several things. 

Upping E’s medication

Seizure stopping medication

Permission forms that allow her to speak with our doctors

The possibility of having medication on hand if E misses a dose at home.

That evening I received a call that there had been a positive COVID case in E’s class and that he needed to stay home until Tuesday. Tuesday morning, E was having several seizures by breakfast. I contacted his teacher and she talked to the nurse who said it was best to keep E at home. 

The nurse tried to contact me twice yesterday. E was having an extremely hard day and my daughter had an appointment. Unfortunately because of this I was not able to get to my phone.

The nurse accused me of not helping my son, not doing anything in response to her requests. Those are things that she should have brought up with me instead of getting angry with my husband when I was not there to even respond. My husband works 12 hour days and is not always 100 percent up to date on all things. 

Because E was not at school for the last week, I have not had time to implement any of the prior listed things at school yet. 

In response to them.

I talked to E’s doctor the afternoon that I had to pick him up early. We upped his medication that day. We talked about the rectal medication for school. Since the appeal is in progress, he cannot prescribe the rectal medication. We should have the answer on the appeal by early next week. In addition, E has not had a seizure over 5 minutes that has required the medication as of yet. 

I signed all of the permission forms for her to contact his doctors. I called the doctors office in Toledo and left several messages. I have not heard back from them either. I intend to bring medication to school for E in case he misses a dose. As this being E’s first day back, there was not an opportunity to comply yet. I am waiting on the pill grinder in the mail. Since E did not miss a dose this morning, I did not see the danger in not sending this.

We try to give E his medication every morning and night. He sometimes does not comply and spits it out when we are not looking. We are doing our best and these accusations of non compliance on our part are offensive, untrue, and completely unprofessional.

I bear no personal grudge toward any of E’s team and have been very happy with how willing they are to help. However, things are not working and he is not able to stay at school. I understand being uncomfortable with the seizures, which is why I have requested alternative placement. 

The plan of care was implemented over a month ago. Mid December. Stating that he does not need to be sent home unless he has a seizure over 5 minutes. These are orders from his neurologist. The only non compliance in this situation that I see is from the nurse. 

Annie

I don’t believe the SPED Director actually read the email because when we talked on the phone, she stood up for the nurse and the school saying that they were right to be frustrated at our non compliance. I repeated what was listed in the letter. And then again over and over again when she kept going back to the nurse’s accusations. She told me she was not convinced that the school wasn’t providing him with what he needed. She said there were more severe kids than E in the district and their needs were being met. I argued with her for over an hour on the phone. She told me that the attendance record said E had only been sent home early 5 times. I laughed out loud because I thought it was a joke.  Once I realized it was not, I said “That’s not true”. She said, “So you are saying that the school is falsifying records?” She also said that the school claimed that they called me merely to tell me about the seizures and that I insisted everytime on coming to get him. I can tell you straight out that is a lie. I could go on and on with this, but after over an hour of bullying and gaslighting, she had to comply with the law and offer an alternate placement. 

A parent should not have to go on trial if they feel their child’s needs aren’t being met. I was treated like a liar and nobody stood up for E through this. There was no mediation offered, no parent rep. They wanted to manipulate me into staying so they didn’t have to pay the bill for E’s tuition. The funny thing about it is, if they were compliant with providing an aide for him, a LPN is required for a child with medical issues such as his, private school would actually be a lot cheaper than paying for the LPN.

It should never be this hard to place your student in the correct environment. The district did not want to do what it takes to meet E’s needs. Instead of trying to, when he got hard, they would send him home. They often sent him home because of a fever. When I would take his temperature at home, he never had one and was fine and energetic the rest of the day. Sometimes they would send him home for throwing up. When I asked the circumstances of his throwing up, they finally conceded that it was actually when he would shove his food in his mouth and then choke on it triggering his gag reflex making him throw up.

Their pride was threatened when I requested the change. Is a child’s progress or rather, hindrance of, worth saving face?

This story, while unique to me, is not uncommon. Sometimes you literally have to fight for your child’s future. 

E’s new school is great. They have never called me to pick him up early. They meet his needs and his behavior is improving at home. For the first time since we left Ohio, I find him coming home with new knowledge and new skills.

This was terrible to go through, but I am grateful that we did not back down. People often ask me why I don’t get angrier with these situations and say those things we’re all thinking. A few reasons. I don’t want to waste my time and energy stooping to their level and hurling insults. I won’t let them bring me down to their level of rude behavior. Another reason. They want a reaction. This justifies their behavior in their minds. They can leverage that. I want to have a clear mind and know what I want to say. Acting on the anger, clouds up my reason. Lastly, this is not the first and it won’t be the last. I want to be an example to my family of how to stand up for yourself and handle bullies.

Feel free to comment with any stories you have had trying to get the proper placement for your child!