It is not uncommon for autistic children to fall through the cracks with the education system. It should never be like this but it is. It happened to two of my sons, N and Bug and my niece B. I am explaining what happened here and how I handled it in hopes it helps someone.
N is my 10 year old son. He was diagnosed as autistic when he was three. His dad and I did not know whether or not he was autistic at first because he masks so well. We never pressured him to, he just did. He went to a typical Jewish preschool and did very well. Since he did so well in preschool, naturally we put him in typical kindergarten.
We had put him in charter schools because of how public schools in Florida can be. Charter schools are like private schools but they receive public funding. Normally there is no tuition.
He started kindergarten as a funny, quirky 5 year old. When they did the fast assessment he was asked his colors and he answered,”You know what they are.” They thought he was funny. On his first day of class he was given a worksheet. N said no and handed it back. When the teacher said he had to do it, he wrote the word “no” and gave it back.
After trying to force him to conform, N started to become aggressive. This school did not believe behavior is communication. (This was at a time I was just starting to be involved with the Autistic Community. I still had a lot to learn.) He was suspended from school 7 times in kindergarten.
Soon after that, we had a meeting at school. I brought up his autism diagnosis. Since his grades were not suffering, he was not eligible for ANY supports. We are unable to homeschool so this is what we were stuck with. So back to the class with no supports.
Next day, he overheard his brother Bug having meltdowns in class. His first grade class was across the hall from his. He heard his brother being refused movement breaks or his ear defenders. N got up, “I will be right back.” He walked across the hall and yelled at Bug’s teacher to read the IEP. Was so proud of him for doing it.
We had another meeting with the school. They said N cannot be going across the hall and yelling at his brother’s teacher. Our response was to have the teacher follow the IEP. If he hears his brother in distress, he will come to his rescue. I raised my kids like that, to always look out for each other.
Soon after this meeting, he was starting to struggling in class with reading. I was able to call a meeting for supports. Since he does not have ASD eligibility, a medical diagnosis would not help him. His neurologist had to LIE and write an ADHD diagnosis letter so he would get the SAME supports.
After we handed in the letter from the neurologist, we had a 504 meeting. At this 504 meeting we wrote a 504 plan. For those not in the US, a 504 plan are different accommodations for children who do not qualify for an IEP. He also has VUR so he also had unlimited use of the bathroom in the 504 as his urologist did write a note for this.
His teacher was trying to follow his 504 but was not equipped for him. She lied and said she had worked with autistic children in the past but it was clear that she did not. She allowed other students to bully him. We requested ASD eligibility testing (again that’s what the Palm Beach County schools call it).
After months of testing, they said they cannot offer him any more supports and he was not autistic. How would the school know? They really dropped the ball and failed him.
After this whole fiasco at this school, we changed charter schools. Before I pulled all my children from the old charter school to the new one, I called the assistant principal to give her a rundown of my children, as they are not typical. I told her what happened with N. She was appalled. The assistant principal set up a sensory bin in her office for when N felt overwhelmed. Little did I know, this lady would be my family’s biggest advocate.
The assistant principal handpicked all of N’s teachers. When he was aggressive, she would call us to pick him up because she knew he was overwhelmed. They NEVER suspended him from school because he knew he was not doing it to be spiteful. This was around the time we brought him to a psychiatrist and he was diagnosed with OCD. We put him on different medications and he was a much happier child. Seeing him happy made his dad and I really happy.
Soon after this, he was thriving with his teacher. They added more supports to his 504 plan. He did well until third grade. He was struggling at school as he was slowly demasking himself as we encouraged it at home. This new charter school suggested ASD testing. I explained what happened and they said they would test him anyway. They said it couldn’t hurt and it’s true. They added more supports to his 504 in the meantime. It was more supports than allowed by the district but they always did what was better for the student. I really appreciated that. The testing took about one year.
Just a few weeks ago, we had his eligibility meeting. School psychologists came to evaluate N in different areas. They even forced eye contact which I was not informed and I blew up at the psychologist. Probably not the best choice. My husband took over. I had to take a break. He was deemed eligible for services. I was ecstatic because he would not be left behind. We wanted him to be in the proper environment and it was a shame it took this long to get him the proper supports.
We had an intake meeting at the school where Bug and A go to. It is a charter school for autistic kids. We have in their IEPs that ABA is never allowed. Bug threatens to tell me if they try ABA on him. Makes me proud of him. Anyway, we had the intake, the principal said he is “way high functioning” and it would be too restrictive for him. They told me of an inclusion program in the elementary school around the corner from us. It seems like a great program and he starts on Monday.
Bug was diagnosed when he was 3. His diagnosis lead me to mine. As soon as he had his autism diagnosis, we brought him to the IEP evaluation program in our school district called child find. After a lot of evaluations, they classified him as developmental delay. That was enough for him to go to the preschool program at the charter school for autistic children. In our area, a lot of autistic children at that age get classified as developmental delay until being re evaluated right before kindergarten.
Preschool was amazing for him. He thrived there. He was so comfortable at school, he decided to poop in the toilet for the first time at school. We never pushed him so he just announced it and he went. It was great for him.
He went through 2 years of preschool since his birthday is in september and the cut off date for the district is September 1st. He needed those two years. It was great for his mental health. They sent home a letter asking about ABA and I had to sign off on it. I had no idea that my traumatic therapy was called ABA until Emma was advocating against it and a lot of memories came back. I said absolutely not. I was invited to watch cameras in his class to be sure. That made me feel extra comfortable.
Before we knew it, it was time to evaluate for ASD eligibility as he was ending preschool soon. After much testing, they found he was not eligible and his main classification was language impaired. He was written an air tight IEP. They put in EVERY accommodation and service they could think of. I was against him being mainstreamed. But my protests did not matter. I had no choice. I was scared and nervous for him.
His first day of school was Roo’s second year. Roo and Bug have a very close relationship. They are only 14 months apart. Roo walked Bug to class every day. There was a time where Roo was in the hospital for a bad electric shock. The first thing that came out of his mouth was “who will walk bug to class?” He was more concerned for his brother than his own health. Roo was 7 at the time.
Anyway, Bug’s first teacher was a special ed teacher. She never worked with an autistic child and Bug was never in a typical class before. They learned together. Bug and this teacher developed a special bond. She was a great teacher for him and we had zero issues while he was in her class. In fact, after that year she was resource room teacher because Bug inspired her to do it. She was great at that.
Then came first grade. The school didn’t move Bug out of that physical classroom to keep things the same for him because he does not do well with change. It was time to meet the teacher and she did not want us to tell her how she needs to interact with Bug. She never looked at the IEP until the 3rd week of school. We found this out, we had a meeting with the teacher to go over the IEP.
N must have heard us talking about this at home. The next day we had a phone call from the school letting us know that N went to Bug’s teacher and yelled at her about the IEP and went back to his classroom. Their classrooms were across the hall from each other.
This lead to another meeting. This time Bug’s amazing kindergarten teacher was at this meeting. She was at every IEP meeting until he left the school because she understood him SO WELL. We went over the IEP again. The teacher complained that N went into the classroom just to scold her. Bug’s kindergarten teacher said “well you need to be following the IEP.” We went over the IEP again. The assistant principal wanted him held back because they did not know how to test him. His old teacher did and that went well.
Then we found out that Bug’s teacher took his ear defenders away. This was a scout night and he really needed them. I had to take time I did not have to go and get them from the school. This prompted me to meet with Bug’s old teacher and we arranged ASD eligibility evaluations.
A few months later, testing was complete and we had an IEP meeting where the eligibility was changed on his IEP. As soon as this was over, I called his old school and they took him back without thinking about it. When he had the intake meeting, all the teachers and paraprofessionals that worked with him before were so excited to see him. He turned to me and said “please tell me I never have to leave this school again. I love it here and I don’t want to leave.” This made me cry and of course I told him yes.
After he started again, they did diagnostic testing. Bug was one grade level ahead with his reading. Showed that assistant principal at that old school she knew nothing about Bug. This is his 3rd year back and he couldn’t be happier.
B is my niece who is 2 months younger than Roo. She went to a daycare for free VPK for preschool and had speech therapy through the school district due to her cleft palate. Around 4 years old she was diagnosed with autism. She was diagnosed late because we did not know if her speech delay was due to her cleft or due to something else. She did well with typical children so we placed her and Roo in a charter school in the same class. Roo would often deescalate her and know what she was saying as it was hard for others to understand her.
The teacher that Roo and B had was not a good one. She would often lie about B’s behavior and Roo called her out on it. They kicked B out of the school 2nd day and we had to scramble for someplace to put her. We registered her for the local elementary school because we were unsure on what to do.
They put her in a class with a special ed teacher but it was a typical class. They had different accommodations for her that weren’t allowed at school. They called it a B plan. She started to become aggressive. I mentioned she had an autism diagnosis and special ed contact told me a medical diagnosis meant nothing in school. While this is true, she refused to evaluate her.
At this point we were picking her up every other day from school due to behavior. There was even a time they called CPS on us because she escaped from school. When they got to our house, they were confused and went to the school to question them why she wasn’t kept safe. They were still refusing to evaluate her.
I tried calling the county, no one wanted to talk to me. Fine. I called the state department of education. An hour later I got a call from the county that I did not need to call the state. I said obviously I did if they weren’t giving her a fair and adequate education and ignoring my pleas for help. Four months later, she was evaluated. She made ASD eligibility. Bug was already in the charter school for autistic children, so because she had a sibling, they made a spot for her.
She thrived at that charter school. She could not be happier. They gave her all the supports she needed. She learned a lot. I only had to pick her up from school twice in the 4 years she was there. The only reason she left was because she went to live with her mother. She was dealing with mental health issues where she wasn’t safe. Her psychiatrist said she needed to be the only child so it was a logical choice.
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