It was not long before our brand-new ABA company was setting up their first meetings with Jake. He called the ABA provider a “coach.” We discovered this approach addressed Jake’s strong need for autonomy. It encouraged his authentic participation. Jake always looks for details, the what, who, and the whys in everything.

Jake loves sports and ESPN, so shifting ABA to a coach theme worked even better. “Kids who are not in school have a coach” we would say. Jake liked this response and started to look forward to most days in ABA. He would repeat “There goes my coach, off to coach another kid.” It made him feel just like one of the kids. This gave him a sense of normalization.

Giving Jake this type of inclusive feeling was priceless.

And in just a few short weeks, Jake was preparing his own lunch. He was getting outside more. He was mastering new goals. Getting needed exercise. Jake exuded a noticeable air of confidence. The ABA program was individualized for him, and it was working. There was clear progress in view and he was on an upward path. Nothing is better than watching your child flourish.  

Despite Jake’s delicate progress, it was time to face the black and white meeting room. It was the first IEP meeting of the year…and here we go again. In the meeting we had to create a plan. The goal was to help Jake transition back to school. How would this work with ABA newly in place? Would they be open to collaborate? I was hopeful we could do this as a team. We had to be on a positive track. Jake had to come first this time. There was no looking back.

I was not at all prepared. I was not prepared for what would come next.

I have attended hundreds of IEP meetings in the past, and most are difficult. These meetings are hard because they are about who you love even more than yourself. These meetings are about your heart. They are about your child.

I did not expect to be talked down to during this meeting in the worst kind of way. I did not expect to be berated or belittled. This was in fact the entire tone of the first IEP meeting of the year. I spoke about the trauma that Jake experienced in the sixth grade. The school environment which was never meant to meet his needs. I spoke of the anger he expressed when being told to wear noise canceling headphones. He would say over and over “it is not just the noise, stop giving me headphones!”

Before Sixth grade began, I requested an emergency meeting. I wanted to prove public school would be the wrong fit for Jake. I made a visual chart about sensory rooms and lockers, classroom sizes, fire drills, and crowded hallways. We even visited and were accepted to a non-public school more in line with the accommodations Jake needed. I held up my less than professional chart pointing out the obvious school differences.

The school representatives quickly shook their heads in disagreement with straight locked stares. The decision was firm before the meeting even started. Representatives were in place to protect school pockets. The tall odds were stacked high. Professionals reassured the meeting room with an expected “wait and see” approach.

This in fact was a monumental failure to Jake in every way imaginable. The systems are stacked against parents a million times over. The systems win again.

The first IEP meeting of the year continued. I talked all about the regression and autistic burnout Jake experienced in the years that came before. I talked about what we had to face as a family just to have his back. How hard it was to watch his total regression. How Jake could not leave his room.

I expressed the severity of his meltdowns, and how the pandemic turned the volume up on our extreme challenges. I then explained how we ever so slowly healed, and how this took years. I did not expect to cry when they questioned in this meeting if “autistic burnout” was in his formal diagnosis. I did not expect the level of sarcasm and the nodding of their heads in frustration on zoom screens. They questioned his diet, access to electronics, medications, his sleep schedule, and other less relevant subject matter.

At one point during the meeting an unknown number sent me a text “it is OK to turn off your camera if this is hard for you.” The truth was that in fact I did not want to turn off my camera. Let them see a normal human reaction from a parent who loves her child to infinity. Let them see a normal reaction to being accused of poor parenting in front of a large and silent IEP meeting audience.

I was thankful in this moment that I had chosen to take this meeting virtually. I had the freedom to break down in the comfort of my own home after the call. Somehow, by the end of this brutal meeting, we still managed to have a documented plan.

Jake was scheduled to meet with his teacher online daily. The plan was to build up to meeting her in the parking lot. The full plan was to soon visit the classroom and then move forward to a full school transition. Our ABA coaches were given permission to aid in this transition. The team was all on board. This was my request and the only way I knew we may have a chance. I had to brush aside the remains of this hurtful meeting. I had to shake it off. This was all for Jake and nothing else mattered right now. A whole team standing by to support Jake. To make it all work. A deep breath. There would be no more looking back. Determination to walk forward.  

   After the meeting Jake’s behavioral psychologist, who also attended the IEP meeting discontinued our services. She stated that we had ABA services back in place. Unfortunately, she must recommend residential services in her latest report.

She said she could not see ABA working for Jake long term. I could see her visibly tearing up in our meeting. She had been with us for years. She knew Jake and genuinely loved him. She was the one who pushed so hard to help Jake get ABA. During the pandemic, she was the only outside support we had. I am a parent to a child with autism and invisible disabilities. I have learned it’s easier to walk away unharmed when the fire starts to rage. I almost understood her change in perspective. She was just starting her career as a psychologist. Why stand in the direct line of fire? Why be a part of an ugly IEP meeting and an over-complicated case. There was a way, an out, and a reason to escape the intense heat. It was not easy to be the target in these IEP meetings, and even not easy to be on the target’s side.  

With ABA coaches and school now in communication, and after all the official online privacy signatures, we could finally face school as a team. A fully engaged team behind Jake was what we always needed. I had to take a long-awaited fresh breath of air. Jake was now meeting online with his teacher for about thirty minutes a day as per the plan. It was a step in the right direction to celebrate.  

I still had to wait until the very last minute to prepare him before each school session. It was just the way it had to be done to avoid his cycle of overthinking that sent him into Dysregulation. When Jake had time to let his thoughts ruminate, his nervous system would win. It was a science, a strategy, a meticulous method, and it took a great amount of patience. After each call we would high five and celebrate big. Jake genuinely loved to make us proud, we knew this well. At the same time, Jake was still working with his ABA coaches on his daily activities and getting adjusted to this new customized program. We were taking it day by day and seeing a wide level of growth. The plan was ever so slowly moving forward like a smart chess game. Each move had to be done with thought and with meaning. Jake was first online, and soon he was going to the school parking lot to meet his teacher. He was making enormous strides in our view, and he was proud that we were proud. I just knew we were finally walking in the right direction, or so I hoped with my heart and soul. We were walking slowly with an open mind and a big team to support us. There was room to be grateful.  

I started shopping for new shoes and clothes for Jake. I was excited to have a high school student. It felt good, right, and normal. It felt unreal after all these years of struggles. Could he make a friend? Could he go to the prom? Could he take a driver’s education class in the future? Jake was really going to school for about an hour every day. It was only an hour, but he had come so far in such a short amount of time. It was a start. It was possible. It was within our reach. Jake could really do this. There was nothing I prayed for more. 

The Fall… 

Crisp folded leaves, a zip-up hoody, and a brand-new backpack. We even got Jake the “Hey Dude” shoes with mini footballs we heard were cool. We had a professional team of people behind Jake, and they were kind people. They were on our side. The school was going out of their way to make it work. The communication was key. Jake would arrive in the morning for an hour, and he entered through the side door which was an easier walk to his classroom. The side door was also closer to the parking lot. This accommodation made sense for him and made the entrance less intimidating. The communication from his teacher was more than exceptional. She would always email the proud details of his day.  

Our ABA therapist at home cheered for Jake both inside and outside the school environment. Not all days were perfect. Jake missed a week due to snow and sick days, and it was difficult for him to return. There were days we felt like we were starting the year all over again. It was not a linear transition. Not easy or predictable. Yet, the daily schedule and school habits were building slowly and in the right direction. We were gaining ground with support in the home and in school. Before long we were gathering again for the next planned IEP meeting. I was looking forward to talking all about progress. I was looking forward to discussing what we had done as a team, despite some expected challenges. I was looking forward to sharing the details of Jake’s success and how far he had come. We had truly remarkable things to talk about. It was only the beginning.  

The tone of the second meeting was dramatically different. In the early part of the school year there was a deadline set to disenroll Jake from school due to his excessive absences. My lawyer and I filed a complaint with the board of education to protect Jake from this disenrollment. We had to protect him, especially since the transition plan was now underway. I very quickly found out that we would have to pay for filing this complaint. More mocking about home routines, a suggestion for night school, and a few more sucker punches to start off the meeting. Was this kind of behavior a widespread practice in IEP meetings? Was this our board of education’s poor choice of representation? I honestly could not believe that this person led special education for high schools. This person was meant to stand for children with disabilities and high needs. Instead of collaborating with kindness and professionalism to help, she was pointing fingers, being sarcastic, rude, and disregarding the genuine issues. I felt intensely in this moment for all the parents who had to suffer through this type of unfair meeting. I felt for the parents who have no idea that they are in line just waiting to face this kind of humiliating treatment. I felt for the parents who did not deserve to be treated in such a way for any reason. I felt for the parents who already have more on their plates than they can carry. Parents who must use up vacation and sick days to attend IEP meetings not in their favor. My thoughts were racing in a million directions. I was at times even silent with disgust. It was hard to even describe the level of disrespect and the words being thrown in angry opposition. Still, and somehow, by the end of the second meeting, there was a modified and cookie-cutter new plan. It was now in fact, their plan. Everything changed.  

Jake would have to enter the side door by ten each morning. There would be a ten-minute window for him to enter. If he missed the window, then access would be granted only to the front door. When he entered the school building, he would and must stay the entire rest of the day. The special education representative shouted over and over during the meeting “Who is taking Jake home? You are not answering my question! Why is he not staying in school? And to clarify, Jake’s ABA therapy company will be for home, not school! Private companies are not allowed in the school building!” The transition plan had to move at a faster pace. Their pace. This had everything to do with submitting a complaint to the state and I knew this. The plan had to be buttoned up tighter. The attendees in the meeting were all victims of the system wearing plain blank stares. My lawyer was speaking all the right words, but the words were rebounding back to her without any meaning. There was no room left for listening.  

What about Jake? This was all I could focus on. What about Jake? Was this even about him anymore? Who is considering Jake and his rights? Was it fair to him to move full speed ahead just when we were gaining some precious ground? I knew there was no way to hold the rushing water back. There was no one left to defend the speed of the plan. The gates were now wide open. This was not about Jake.