The Post in which E disrespects a Founding Father

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I love history. I try to learns as much as I can about the past by reading different varieties of history books. I am an avid reader and the last 6 years or so, I have been into mostly non-fiction. I feel that reading about our past, helps us understand our today. Whenever I’m reading a political biography, a former president or political figure, I am struck by how similar things are to now. As I am reading certain situations, I think, yep that is happening today. I literally could insert names and it would be a news article from today. I’ve learned that human nature doesn’t change. We go in circles. We think we are super progressive, but we are just living the same thing over and over again with different players and different means. Alexander Hamilton might not have had twitter, but you know what he spent all his time doing? Writing letters. Sometimes anonymous, sometimes signed, sometimes set up to look like it was from someone else. They would be posted in newspapers. That’s how the political storms played back and forth. Jefferson vs Hamilton writing anonymous editorials back and forth. Hamilton’s children said sometimes they wouldn’t see him for days. He was locked up in his office writing letter after letter after letter. Not just to newspapers but to friends and such. We have always needed something to do with our hands. Knitting, cards, crossword puzzles. Now it’s the phone. The phone is incredibly addicting, but my point remains the same about human nature.

I don’t limit myself to political history. I also read books about certain disasters or time periods. I am fascinated in general by history.

I try to pass this love onto my kids. My A girl might not remember the date of my birthday, but she knows probably about 80% of the presidents and all 50 states. Knowledge is power, so they say.

The nice thing about living in PA is that there are so many historical places to visit. In the last year in a half we’ve been to Gettysburg, Mt Vernon, Philadelphia, DC and more.

When we are touring through different places I try to educate A as we go and tell her facts about the different places. I am always happy to see what she has learned and it’s fun to see her take an interest in history as well. It being one of her favorite subjects at school now. Second to Art.

When we were in Philadelphia about a year ago, we were trying to visit the US mint. We all really wanted to see it. We had already visited the firefighter museum, and liberty bell, and independence hall. When we got to the mint, unfortunately it was temporarily closed until further notice.

We started to walk back to the main historical square. Walking back we took a different road than we came. We saw a pretty church and connected to it was a cemetery. A and I read on the plaque that this is where Benjamin Franklin was buried. There was a group crowded around his grave on the other side of the iron gate and a tour guide was talking to them about Ben Franklin. If you have ever been to his grave, you know the tradition of people throwing pennies on it. I don’t really know why. I did hear that it cracked the old grave from all the pennies, and they had to replace it. But I didn’t hear why they did it, because as he was explaining it, I noticed some of the tourists eyes in the group looking down in my direction, sort of by my feet. I looked down to see what they were looking at, and I saw my son, E, stealing as many pennies off the grave as he could get. His little arm sticking through, stealing them, putting them on the ground by his feet and repeat. I was horrified. I pride myself on making sure that my kids behave in important situations and if they don’t, removing them. With the fence, I didn’t think that we had anything to worry about about so I wan’t as attentive.

I grabbed his hand away apologizing quietly to the group so I did not interrupt the tour. I tried to put as many pennies back on the grave without making too many noises or cracking it again, because that was the last thing I needed right then.

Eric and I exchanged a look of mutual embarrassment. Like in, didn’t see that one coming, E stealing from Ben Franklins grave that is. I asked Eric if we could go in the cemetery to get a closer look, but sadly, he told me that you had to pay to get in. Not one to be deterred by honesty and already taken to thievery, E let go of Erics hand and took off running into the cemetery at lightening pace. I ran after him as fast as I could. He started running toward the group gathered around B. Franklins grave and I started to run faster. I grabbed him right before he got to the pennies again, thankfully. But as I was running, I heard the tour guide say, now lets have a moment of silence for Mr. Franklin in honor of all that he has done for the great city of Philadelphia. When I grabbed E’s arm to get him out of the cemetery, he started shrieking at the top of his lungs. E clearly did not respect B Franklin or his contributions to the city. Eric had to help me with him because he was very angry, so the two of us had to haul him out while the tour group did their best to ignore this disrespectful, unpatriotic family of four.

I am sure our disrespect and thievery was the topic of many dinner tables that night. Luckily they did not know that we are from Harrisburg. A and I decided that as citizens of the capital city of PA, it is our duty to be good examples to all the other cities in PA. We definitely were not doing our job that day.

Next time we go to Philadelphia as a family, we will be better.

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Bars of Soap

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Growing up, my family didn’t have a lot of money. Sometimes we refer to it as self induced poverty because the reason for it was my dad getting a PhD. He went to Ohio State, excuse me, The Ohio State University. You know they trademarked the, THE right? Anyway, he did his undergraduate at the University of Minnesota, and he did his masters and PhD at THE Ohio State University.

School is expensive in itself. Student loans, books, but also in the loss of wages. No job. We made do and as a small child I was none the wiser. Because of our self induced poverty, SIP, small things that I take for granted now, and my kids definitely take for granted, I thought were the most amazing things in the world. One example, getting a Happy Meal. This was back in the day when McDonalds Happy Meal Toys were legit. The toys were well made and you could play with them for a forever. Happy Meals in daily life were extremely rare. It could be a reward after getting your shots for school. Maybe for your birthday. The only time we could get them in excess was a road trip. On road trips, we were able to stop at McDonalds several times. Collecting variations in the current toy collection they were featuring. Our favorite toy series was the Barbie dolls. My uncle called them pin head Barbie’s because their heads were so small. There were a few variations. There were also cabbage patch dolls that were fun. Same size as the barbies and had yarn hair.

If we ever got a duplicate on one of these road trips, my mom would go up to the counter and trade it out for a different one. This was also the era when McDonalds had cookie boxes. That is a story for another time though.

Candy bars were also something special. My mom did 2 week grocery shopping. We stocked up and when we were out of something we waited until the next shopping trip. She had the meal planning and snack planning down to an art. If I went with my Mom on the 2 week shopping trip and helped her, which I usually did because as the 2nd out of 4 kid I wanted the alone time, I usually could convince her to get me a candy bar. This was the only time I really got candy. I remember that they were .25 cents. 4 for a dollar. When they went up to .33 3 for a dollar a few years later, we were outraged. Who do they think they are, charging 3 for a dollar for a Hersheys Bar? Oh if only I had known what lay ahead.

The ultimate luxury was a hotel. When I was younger and we were moving cross country, we had to break our trip down into several days. We stayed at Motel 6 at night time and it was the very definition of luxury to me. Whenever I would see those signs, I would get so excited for what was in store for me. At this point it was just three kids. My older sister, myself, and then our third sister who was just a year old. My older sister and I would go into the hotel room and marvel at the beauty. The tightly made beds. The clean vacuumed floors. The TV’s with cable which included the coveted Disney channel. Cable was expensive back then and at home we were limited to just a few basic channels. Best of all out of all the luxuries were the soaps. Not soap operas. Like literal bars of soap. The soaps with the waxy paper wrapping. The soaps that were so fancy that they had the Motel 6 logo actually imprinted into the soap. My older sister and I ended up with a few soaps each at then end of the trip. We would save them and smell them ultimately, while being so careful with them as not to break them. We never used them and I’m sure they’re sitting somewhere in a box of our childhood things in storage.

Life can be good, whether you have a lot or not. There is always something to look forward to, whether it’s the latest McDonald’s Barbie toy, a bar of soap, or maybe if you had more money, a new bike.

I don’t think I have stayed in a Motel 6 in over 30 years, but when I pass them, I can almost smell the soap in the air as I drive by. The memory forever in tact in my mind.

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.

Letting Go of Things

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Disclaimer:

With this kind of post, there is a tendency to see it as a pity post or complaining. that is not the intent. With issues like OCD and ADHD along with others, I think transparency is very important. Part of the difficulties of being neurodiverse in these ways is feeling like you are alone. I think talking about the things that are difficult for us are important.

I love a clean house. A clean car. A clean yard. You get the picture. I really like things clean. I actually don’t mind cleaning. It helps me to destress.

Having kids in general challenges that. There is a certain level of mess in between cleanings that you just have to learn to live with or you are constantly cleaning all day, doing nothing else.

When the kids were younger, it was manageable to keep things clean. I had a system. I would clean at night time and return everything to its place. If needed, I’d pick up a little during the day. I made sure that everything had a place and then it was easy to clean up. I got a roomba and that helped with the floors.

But then E got older annd learned to get into things. He loves food, and he loves making messes. He craves the sensory aspect of smearing things. (Not just food if you catch my drift.) We lock up our cupboards. Lock up the cabinets, lock the rooms he is not in, but he still manages.

I cannot watch E every second and so I have had to learn to be okay with his messes. His trails of crumbs. His getting into my purse and tracking things out. Turning on the water. Taking things off bookshelves. It is like having a perpetual two year old but with the intelligence of an 8 year old in figuring out how to do things. He has the emotional age of 2-3 and the intelligence of an 8 year old.

He is a smart boy and sometimes when I am not looking, if I have the cabinet open to get dinner ready or something else, he will grab food coloring or crystal light packets. Something. And hide it for later. Then when I leave the room, I come back to red floors and walls. There are certain things that we stop buying, but on the other hand, there are certain things that I do want to have on hand. Crystal light helps him to drink more fluids.

We use lockboxes for keys ever since he stole my keys once and started the car and locked us out. (That’s a story for another day)

He has discovered a fondness for art and drawing. He has also discovered that his preferred medium is my walls. It’s easy to say, lock up anything that writes, but harder to do. Especially when you have a 10 year old who might leave something out for homework or forget to lock her room. Or is playing with E in her room and he grabs a marker and hides it.

I have learned that if E wants to do something he will find a way to do it. I try to then simulate the desired experience in a controlled environment. Like having E help me bake a cake, however he desires his independence and wants to do these things alone.

With the constant cleaning up after E, some things can wait till night, while others like sticky or wet things can’t, I don’t have time to do other things that need it. The car, my room, laundry, bathrooms. Some of the things I can hire a cleaning lady for, but others are more difficult.

Learning to live with this mess has been very difficult for me. In the past, cleaning is how I maintained a visage of control. It is my outlet, and it is my OCD. Without it, I don’t know how to cope.

I don’t judge other people on the cleanliness of their houses. I don’t even notice it. But mine, hugely.

I will create organization plans and schedules, how to keep on top of things. Those work for a little while. But then I get sick or am out of town, and things go downhill again, and I have to make up for it.

I wish I did not care about the cleanliness of my house. I wish I could let it go. I am trying, but old coping skills are hard to break.

With ADHD, there is a lot of all or nothing thinking. Like either it is all clean or not at all. Once my room starts to get messy, I think whatever, and then am not careful about putting things away.

I like to have time with my kids and I don’t want to pass on unhealthy habits or have A afraid to make messes, so I am learning to let things go and be okay with something level of mess.

I tell myself that there are more important things than a perfectly clean house.

So in the mean time, until I find that happy medium… Don’t judge me for dirty baseboards and messy room.

TLDR; I I hate messes but am learning to deal with them and not be a control freak.

What do you all struggle with? The hardest thing for you to let go?

A Story About Clay and Skepticism

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When I was 6 years old, my older sister took a pottery class. We lived in Columbus Ohio at the time. While we did not have a lot of money, there were some community free one-time classes that we were sometimes able to attend. Because we did not have a lot of money, this kind of thing was more of a special experience.

My sister brought a home a bowl from the class. What interested me about this bowl was that it air dried. I had seen videos on PBS about making things out of clay and putting them into the kiln. This was something I had never heard of! I made things out of play-doh but those never dried into anything tangible like a bowl. She told me about her class and explained the clay to me and how it was already dry but what would harden up even more.

Everything that my older sister did was interesting to me. I envied most activities got to do and toys that she got as gifts. This was no exception.

I was in awe. It became an obsession. I watched it in continuous astonishment throughout the day. Most of my brain believed her, but there was a small piece that thought maybe she was mistaken. Or perhaps the teacher was mistaken.

How could something like play-doh turn into a usable object.

I couldn’t get the thoughts out of my head. I would play a little bit and then come back to this bowl. I’d touch it softly when no one was looking to see how far along we were on the process.

When you are a child, time goes on forever. This story may have spanned a few days, but because I was younger, I don’t remember exactly the timeline.

What’s important is that I just didn’t think it was hardening and I was beginning to think that one of us had been duped in this situation. I even felt a little bad for my sister. Poor, naive, going into this pottery class so excited to make her masterpiece. The teacher was an art major, but of course as a child, we always know better than anyone else. It was definitely a possibility that she was wrong.

After being warned off of touching it a dozen or so times, over the span of a few days maybe, I lay in bed at night thinking about the bowl. I wanted to believe in this magic, but my belief was fading.

My sister and I had bunk beds. I was on the bottom. She was on the top. I was pretty sure I could sneak out after she was done reading to check on the bowl. I needed to do it on my own without people telling me to stop touching it or to get away from it.

Our bedroom was upstairs right by the staircase. The bowl was downstairs on the dining room table just off of the staircase a bit. I checked on the top bunk to see if my sister was asleep. She was. In the hallway, I listened carefully for my parents. Were they still awake? Not hearing anything, I made my way downstairs. I checked on the bowl again. Finally in peace assessing the masterpiece. Again I was disappointed.

Since no one was around, I decided to test its strength. Pretty sure they would thank me for this later. I picked the bowl up off of the table and raised it high above my head. With force I threw it down on the ground. It made a huge breaking sound because turns out it was dry.

My parents and my sister came down to see what was going on. They looked at me standing guilty by the table and the bowl broken in pieces all over the floor. My sister was devastated. She already saw me as the obnoxious little sister and let me tell you, this did not help things at all.

My parents were so confused. What in the world? Why did you wake up in the middle of the night to come and break your sisters bowl? I didn’t know really how to explain it except with the truth. I wanted to see if it was dry. I don’t remember the rest of what happened. I am sure I was duly punished, but there was no replacing my sisters bowl.

Whenever I complain about my sister being mean to me as a child, this story inevitably comes up along with a few others. But, I can’t blame her. It was pretty weird of me.

POST NOTE:

Later in life, I was diagnosed with OCD and incidents like this made a lot more sense.

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!

The Incident

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To start with, both of my kids have terrible teeth. So do I. Isn’t that the way it goes? To add to this, until recently, E has not let us anywhere near his mouth in terms of brushing. Other special needs parents can commiserate. Teeth are one of the last things on the long list of things to take care of with a child like E. I have taken E to the dentist for his 6 month check-ups to get him used to the idea of the dentist. He has responded well but hasn’t let her do much in the way of an actual checkup. One day, after E fell asleep in the car, I noticed his teeth. The ones he never lets me get a close look at. They were rotting through. The next day at school, his teacher called me to tell me that one of his molars had chipped. E is a grinder. Whenever he gets excited he grinds. The dentist and I had talked about needing to put E under to fix his teeth that I was sure were deteriorating, but we wanted to wait a bit longer until there was more obvious damage. I knew it was a thing we had to do most likely, it was just a matter of when.

We chose a day. I wasn’t too nervous about it. E has been under before. Two different times for minor procedures. Procedures that took under 30 minutes. This was going to be about two hours. The dentist wanted to x-ray, do a cleaning, seal his teeth that didn’t need fixing and just get a general idea of what needed to be done. She said that she could restore the front teeth but those fillings often don’t adhere as well and need to be fixed later. Wanting to avoid going under again I told her to just pull those. E has done a lot better with doctors lately and I wasn’t worried about the waiting time before the procedure as much as in past times. E did well leading up to the procedure. He was scared when we took him back to the OR, but he let them put the mask on, and fell asleep pretty quickly.

Often times I look back at situations in my life and I think of the person before the situation. The person who has no idea what is going to hit her. What I thought would be a very routine procedure, and it was in a sense, no complications, turned out to be a traumatic experience for the both of us. I remember waiting for him to wake up and thinking, the worst of it was over. He might be a little grumpy, but I would take him home and we could watch a movie and lounge for the rest of the day. Turns out I underestimated the situation quite a lot. A typical five-year-old, I could have prepped for the surgery. I would have been able to explain what would happen. He would understand that teeth fall out, and they grow back. I would have been able to explain why he was hooked up to wires and most importantly, I would have been able to adequately comfort him. That is what kills me the most with these situations. I feel helpless. I have no idea what is working for him. If I am helping him, if I am making the situation worse. I don’t know what he needs from me. I do my best anyway, trying to guess what he needs. It’s such a hard thing as a parent, to see your child in so much distress and not be able to do a thing.

They told me in the recovery room that he would start waking up slowly and may get a bit squirmy and grumpy. After 40 minutes of waiting, I asked the nurse when he would start to wake up. He said it could be up to an hour. After he left the room, E sat straight up. For 10 minutes he just sat there rather catatonic. I thought the worst was over. I thought I had lucked out and he was going to be fine. No grumpiness. However, right at the 10 minute mark, he seemed to realize what was happening. He started grabbing at the wires, he started screaming and trying to get away from everything and nothing. For his privacy, I’ll won’t go into the details of the behavior. It’s sufficient to say, he was very upset about everything. He was feeling funny about the anesthesia, his numb mouth, the blood, the cords, the new feeling in his mouth. It was a long 30 minutes of trying to calm him down and keep him from severely hurting himself. I almost asked if they could give him a sedative, but I thought that once we got out of there and he knew we were going home that he would be okay. In the past that has worked. This time he was too agitated, disconnected, and out of control to be able to realize what was going on. He wouldn’t sit in the wheelchair so they had to wheel both of us out with him on my lap flailing and screaming. A few years ago, I was very aware of E’s movements when he was in this kind of state. I anticipated his moves more and acted defensively to avoid getting hurt. It didn’t work all the time, I still had my share of split lips, black eyes, broken nose, etc. This time not as trained as I used to be I took my eyes off his head. We were about to leave the hospital, and I was keeping my eyes open for my sister who was driving us home. Right at that moment, he hit his head back at me full force straight toward my face. There was a huge crack and everyone around me stared in shock, not sure what to do. I told them I was fine, because I didn’t really have any other options at this moment. I just wanted to get E in the car as quick as I could. With the help of 3 people, we finally got him in. My sister dropped us off at home and the meltdown continued. I couldn’t take my eyes off of him for more than a second or he would try to harm himself. Out of all of his meltdowns, this was the worst. Adding to that, he is a lot stronger than he used to be. With my nose in so much pain, I had to sit there and try to hold him and keep him safe. I had no idea if this was making it worse or better for him. I just was trying to do anything I could to help him and keep him from harming himself. I had Eric come home from work early and help me, but his work is an hour away, so I still had to wait. When E calmed down enough to look in the mirror he was so upset. He kept asking for his teeth back on. I was heartbroken for him, not being able to explain in a way that he would understand what had happened to his teeth. I finally was able to take advil once Eric got home, and he took over for me. I shut myself in my room for the rest of the day. My nose was hugely swollen. It took me about 3 days until I felt I could parent again. His behavior currently is not as bad as it was that day, but he’s still had an increase in self harm and meltdowns. The third day after the surgery, he started to have a meltdown. I felt like I was up to the task again to help him. I was nervous about it, but I tried to comfort him and help him. I started showing him old photos on my phone and he started to calm. After a few minutes, he turned to me and said, Mommy big hug? I gave him a huge hug and he stayed that way for a full minute. I felt like maybe I was adequate as a mother after all.

He doesn’t understand the situation still. He still asks me to put his teeth back on daily and then tries to take my teeth off when I say later. I still have pain where he hit me. The black eye went away, the swelling has subsided some and I went to the doctor for an x-ray. The doctor confirmed a break but didn’t think that it needs to be reset. He thinks the crookedness is because of swelling. I guess we will see. If I’m still having problems in a few weeks, I will go to an ENT.

I’m not sure really the purpose of writing this is. Not for sympathy. That is usually why I avoid writing about certain things. I don’t want the pity. I know that I go through hard things and this was difficult, but I am overwhelmingly grateful for all of the blessings that I have. For my healthy children, for an amazing dentist, for amazing nurses that helped us through it. For family, for friends. Things could always be much worse than they are and I am grateful for my situation. Writing this is mostly cathartic. And a little bit about sharing my story. There are a lot of things that happen that I choose not to share. I share tidbits here and there, but a lot of the really hard stuff I don’t. My life is so much more than autism and I like to celebrate everything. When I do share, I like the humanity of sharing my stories and hearing other people’s. We live in a culture of everything being perfect for the internet. Everything is curated for social media. That’s not life. Life is real, full of good and bad. Hard and harder. Joy and happiness.

Spleen Groupies

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After Thanksgiving, I was tired. I thought I was just making up for lost sleep from the prior week with family in town. But, no matter how much I slept, I couldn’t overcome my fatigue. I would bring my kids to school and then go back home for a nap. I would then sleep until my alarm would go off at 2, to start getting ready to pick the kids up. Even after all this rest, at 2 pm in the afternoon, I still was so tired. I could have slept even longer. This went on for several weeks.

I was tired driving. The drive to my sons school, 30 mins there and 30 mins back was dangerous. I would fade. I was worried about falling asleep at the wheel. At the gas station one afternoon, pulling in, I misestimated the depth of the turn and hit one of the poles. I started having my husband take the kids to school for me because I felt it wasn’t safe for me to be driving. He usually has to be at work an hour before we get the kids to school, so he had to miss meetings in order to do this, but I didn’t really know what else to do.

One afternoon, I woke up and I could not get out of my fog. As I was walking around the house trying to wake up, trying to find a way to get out of this fatigue, I remembered something. Like almost from a past life. I am anemic. My blood must be low. I have a blood disease.

When I was 19, after years of fatigue and sickness, my body started to shut down. My mom took me to the hospital, and it was a good thing she did, because my body was dying. Upon admittance to the hospital, I was told, another hour and I probably wouldn’t have made it. I didn’t need to be told this. I knew my body was shutting down. I could feel myself fading, and I had to make an effort to continue. 

After many months of testing, I was diagnosed with a blood disorder. Spheroctyosis. This means that a large portion of my blood is misshapen. Instead of the flexible disc like shape the red blood cell should have, mine are like over inflated balloons. At the smallest nudge, they are destroyed. My body had tried it’s best to overcompensate for this up until my hospitalization, but it stopped. A case of mono made my body weaker. This caused me to catch just about every typically benign virus under the sun, and in my weakened body, they were in essence killing me. My body was not able to produce blood to make up for the deficit any longer. 

When they first tested me, they thought my panels had produced false positives. They didn’t think it was possible to have that many viruses in your body. Steroids helped my blood to produce in rapidity. My body was finally able to heal and fight the infections. My spleen was removed several months later. A spleen helps to fight sickness by destroying misshapen blood cells. My blood cells were being destroyed, because even though they were healthy, albeit fragile, they were not the correct shape. These were the ones that actually made it to the spleen and were not destroyed just bumping around. 

Luckily, not all my blood is round spheres. Only about 75%. Without a spleen, I need many vaccinations to guard me against certain infections. But without my spleen, my blood cells are not constantly being destroyed. 

I have lived fairly healthy since my spleen was removed. Even without my spleen, my body still has to work hard in order to produce extra blood cells. They are still destroyed in my body, just not as much. 

It’s funny because after living so many years healthy, my mind has almost forgotten that I have a blood disorder. All of the memories seem as if they belong to another life. Except for when I smell medical tape. I was at the doctors office waiting for my physical when I smelled medical tape. My heart started beating rapidly. My watch was going off to warn me about my spiking heart rate. They took my blood pressure. Normally having such low blood pressure, that I black out when I stand up, it was rocket high. The body remembers where the mind forgets.

My blood disorder is rare. 1 in 250,000. My kind is even rarer. It is usually genetic. Mine, is a spontaneous mutation. That occurs in 1 of 5 cases. 

Because my case was so unusual, and because I was being treated at a teaching hospital, my case naturally excited my doctor. ‘Would I like to donate my spleen to research he asked me excitedly?!’  ‘Sure..’  What else would I do with it? 

He wrote a paper about my case, and informed me regularly just how interesting my case was. 

At appointments, he would make sure that I took notes, so I could understand everything about my rare illness. In my being a normal human being, I looked away from his paper once, and I was scolded properly for not caring about my illness and taking responsibility to learn about it.

Six months post op, after the paper was written and published, I was at a follow up appointment. ‘Can the Dr bring in a student?’ the nurse asked me after taking my vitals. I don’t mind, I told him. Bursting through the door shortly after was a very excited student. ‘I am so excited to finally meet you!’ She exclaimed as she shook my hand. ‘I have heard all about your case! Your spleen, I can’t believe it was really 8 times the normal size. Do you know how rare your case is? I can’t believe I am actually meeting you, we just have heard so much about your.’

I sat kind of stunned as I realized I had acquired a fanbase. And an apparent groupie, who had somehow convinced the doctor that she would be useful at this appointment. She wasn’t. I guess I can’t blame her though. It was an interesting case. My spleen was 5 pounds. It had displaced my kidneys. She I am sure went on to become a very successful doctor. 

To follow through on my original story though, lots of b-12 shots and folate later, I am feeling less tired. An appointment with a hematologist scheduled, and it’s amazing how something that was dormant for so long feels like it never left me.

The Change.

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I think it would be interesting to be a doctor that diagnoses autism. A family comes to you in a very vulnerable place. You give them the dreaded diagnosis and they go home and learn how to deal with it. The next check-up, the parents that you met last time are just a little stronger. Then the next time, and the next time. You see these changes happen. Until 1-2 years later, and they are no longer the person that they were at the initial appointment. It is a metamorphosis process of sorts that you are forced into as parents of children with special needs. No one asks for this life, but you take it and you adjust, and you become the person you need to be. Out of necessity. It would be hard to give the person the diagnosis, and know that you are drastically changing this person’s life. Obviously, the doctor is not actually the one changing their life, but it is the onset of their new reality. The actual diagnosis.

I would never want to go back and live that 6 months following diagnosis again. It was a dark, confusing, hard time. When I see parents about to get the diagnosis/ ones who just did, my heart goes out to them. I hurt for them knowing what is to come. I give advice, but nothing I can do can change what they are going through. You just have to step aside and watch them change into the person that they need to be. As they learn to do autism their way. Don’t get me wrong, I love the community in the autism world, and I don’t know what I would have done without people’s help along the way. Those who answered my questions about therapy, behaviors, self-care. But nothing can take away that stage that you must go through to be the Autism Parent you need to be.

I distinctly remember a meltdown that E was having one night. He was out of control. Literally. I don’t think he had actual control over what he was doing anymore. Nothing would get him to calm down. I was holding him in his room in the dark trying to get him to go back to sleep. He was flailing and trying to move everywhere. I was holding him as best as I could to keep him safe from himself. I could not comfort him. I just sat. I held it together at first, but then he wriggled a bit from the position I was holding him in and head butted me in the lip. Hard. My lip was split, swollen, and bleeding. That instant of sheer pain destroyed the barrier that was keeping me together. I sat there crying, holding my son, pleading with a higher power to help me know what to do. I thought in that moment, I cannot do this. I am not strong enough to handle this situation. I wondered why I was given a child like this. I felt claustrophobic, wondering if there was a light at the end of the tunnel. My husband came up to check on the situation. He took E from me and had a turn trying to calm him down. I went into my room and cried and cried and cried. I felt like a failure, unable to calm my own child. I thought it impossible that I could stretch any further without breaking. But I did. The wounds heal into a sort of armor, and you get up and you do it again and again and again. You get used to people staring in public when your child melts down. You get to used to the comments of others, strangers and sometimes those close to you even, about your parenting. You get used to having to dodge your child’s aggressive behaviors as if you are in a boxing match. You get used to functioning on 3 hours of sleep in a 24-hour period. You get used to filling out paper work and going to countless appointments. Strong people are not born strong. They are made.