It was already the first week in April when the school personnel worker visited our home. The personal worker had legal authority to drive kids to school. They were also able to check on families and lead other truancy measures. She brought along Jake’s teacher to encourage him to come back to school. I knew this process was just another check off their checklists. It was another check mark to document their efforts. Jake walked outside to talk with his teacher at my surprise last-minute request. Jake was caught off guard enough to agree to mask. I walked Jake outside quickly, as to not lose the momentum. He agreed to go back to school during their face-to-face conversations on this day. He nodded. He masked. He smiled when they said there would be candy at school. He chose skittles. He answered all their predictable questions. He answered politely to politely exit the conversation. Jake was frozen in a typical moment of masking. The masking that creates the “He is fine the parents are to blame conversations” He agreed to it all. He agreed up until the moment they drove away. We talked about school that night and the next day. We again turned upside down and sideways just trying to grab hold of their weak attempt at a re-launch. Jake would not and could not go to school. Not this way. Not with bribes. Both sides were all too lost in the games by now to e know what to do next. How do we face this once again? How can we?
The same pupil personnel worker dropped off IEP documents and meeting notices later that week. She also talked to me about the options. She spoke in a reassuring voice. “If the stress is just too much, you can always disenroll Jake. You have the option to home school.” The scope had spun so completely out of control. Accountability was too busy pointing fingers to face forward. All sides on every team stood frozen.
The next IEP meeting was set for a Friday in mid-April. At least I knew what to expect this time. I was ready to roll up my sleeves and face the regular walls of misunderstanding. Here we go again. I waited for the inevitable meeting to begin. A sharp voice entered the meeting after all the formal introductions. “Mom, are you still being paid to NOT have your child in school”? I paused for a moment, then explained that I am not legally able to be paid during school hours as per the autism waiver. She then shouted, “Can you believe the mom is asking for help while she gets paid to be the help? Have you ever heard of such a thing?” She was talking to the meeting room as if I were not there. I explained once again that I had a career, a full-time job, yet had to step back to focus on caring for my child with extreme high needs. I explained once again that this was not a devised plan. This was not a choice. Parents do not make this choice.
I took a bigger deep breath and told my overplayed story once again. The story of how we tried so hard to get Jake to school this year despite a tighter, firmer, and now rushed plan. How ABA was ruined by school and all the unnecessary pressure. I let out all the overplayed, brutally honest words.
It was too late by the time the overdrive of the meeting kicked in. The school staff that had accommodated Jake so well this year had suddenly changed sides in the IEP meeting room on this day. The school principal chimed in, “And we cannot have our teacher leaving her students in the classroom to help one child at the side door. We cannot have our teacher leaving her students to go to one student’s home in the middle of the day!” The special education representative then threw her right hook, “And by the way, you have to attend a truancy panel meeting next month, it is already scheduled at the board of education building” They were throwing out all their best punches all at once. I tried to grip my dented armor. “In addition, we will go over a tool today to determine if Jake’s primary disability is even autism, as it seems he may have a primary emotional disability” I intuitively knew this was wrong and started to text my lawyer feverishly. I also knew why the motive was to switch his primary to Emotional. Anything to be off the hook to provide Jake fair services or to admit accountability. Then came the biggest stone throw of all. “And this meeting is a working lunch. This meeting will last all day because we must respond to the department of education complaint that YOU MADE…YOU FILED THIS COMPLAINT!”
This grueling meeting was in fact four and a half hours long.
They tried. They tried to move his disability to emotional but failed in the questions they legally had to ask the team. My mommy guard was up, and I was throwing punches in their faces right back. Left then right. In the very next conversation, they said we do not have any proof that he has anxiety at all in school. “When he is here, he is fine” they said. “The parents are not giving us access to Jake or their house. What is even going on in their home?” My head was spinning by now. Were they trying to prove Jake had an emotional disability or no disability at all? This meeting was based on feuding sides, not Jake. I knew this. I was was a seasoned professional of their games.
It was ugly. It was sharp and cold. Still, and just like all the meetings that came before, there was a plan. The plan based on spite and fear. This time it was even more rushed and even more intimidating. The fear rushed in. It was another plan miles away from what I knew was best for Jake. Another plan about them vs me. This is the harsh reality many parents of children with invisible disabilities must endure. The parents that sit with anger as their normal. The parents who still protect. The parents who cry in silence. I am far from alone.
Choosing to Pivot
It was the following Tuesday morning after the brutally long meeting. The behavioral expert, which the school system hired was waiting at my front door. To my surprise, she arrived with the special education representative who led our horrendous parent-blaming IEP meetings. This was another check off their checklist.
They both entered my living room nodding their heads as they said a quick hello. The behavioral expert explained that it was best for them to not meet Jake, given his challenges of meeting new people. I could not help but smile at the backhanded acknowledgment of Jake’s disability. They said they were only in my home to encourage me. They wanted to give me a strong plan to execute. They also offered better workable strategies to help Jake go to school. I had the idea that someone was coming over to help. I knew they could not help. Conventional parenting strategies. No thank you. We have already tried this weak plan. I knew this game. Yet, I surrendered my ears to their words, there was nothing more to do. I was stuck. Both sides were checking all the boxes to again play the game. “Take his phone away, and NO TV before school. You can have five minutes on your phone, only after you get dressed. Waffles for breakfast, and we can only have waffles in school. A fast-food reward after school. Rewards and punishments listed on pages I have seen many times before. All the strategies we have tried a million, bazillion times but never ever work. In fact, rewards and punishments make it all worse. I could not wait for the school professionals to leave. The plan was typed and emailed to all the right people for their systematic documentation. That is what had to be done as a contribution to their checklist. I am not new.
The days were getting longer as the warmth of summer peaked in. There were so many days we tried and tried again as the school pressure mounted. The side to side facing fear. We even were somehow able to get Jake to school for two half school days. It took every push and pull and big lunge forward to make this happen. “The side door is ready. You can do it. All kids go to school. You must go. We will cheer. Mom and dad will be in trouble if you do not go. You must try and you will be so proud. Summer is almost here. We have a summer countdown calendar posted on the fridge. It was all the things we have tried but never work. In fact, it always makes everything worse. I was guilty of playing the game too.
On the following Thursday I was driving to the truancy panel meeting. It was held in the official board of education office. I received a phone call just two days before. They reminded me that I could still cancel the meeting entirely. I would have to withdraw Jake from school to do so. She reminded me of all the parents who made that decision in the past. They chose this to avoid the stress of this meeting. Yet, here I was. I was on my way and blaring the strongest Taylor Swift song I knew. I searched for any strength in me. I had to push aside my stress filled thoughts and be brave for Jake. This was not about me.
I entered the meeting room which resembled a real courtroom. My stomach dropped to the floor as a woman came running up to tell me they were not ready for me yet. I waited in the small waiting area as muffled voices hid behind the wood-lined double doors.
Minutes later, I was called back into the large room. The ten panel chairs were lifted, as the expected experts filled each wide chair with their framed titles below. To my right an oversized projector highlighted Jake’s absences in orange. An accumulative attendance rate of four percent was highlighted below for the visual statistics. Then a voice rang out, “Hello Mom, and will Jake be with us for the meeting today?” I wanted to laugh aloud at the ignorance of this question. Jake was not attending school which is exactly why we were all here today. Would it be reasonable to believe that Jake would be able to attend a panel meeting at the board of education office? This was a real question. One deep breath, and I sat down in my chair next to the empty chairs lined up beside me.
I told the endless story once again to strangers. The story of how we tried, and we tried again. The story of the trauma and the unmet needs. The story they will never quite understand. I answered all the questions about Jake’s mental health, physical health, and all the lit-up boxes they were required to check off in between. Their heads nodded with an artificial concern. When the meeting was over, I waited for the shuffled across the room pen to sign the official “it is all on you now “documents. “Here is the plan which is our final attempt to get Jake back to school. We have made more than enough efforts. We do not send parents to court anymore, we will just send a letter of disenrollment.” The meeting was over. I had lost. The head of high schools walked into the room as I was signing. She wanted to see the result. Or was she just arriving late? One last smug look over her shoulder as I signed. The fight was over.
I left that day with the beyond defeated feeling of not being able to do this anymore. I could not face this one more day. How could I set myself up to be stomped on one more minute? How could I go to one more pointless and already stacked against me meeting? How could I put my entire family through this torture? Who in their right mind could face this type of treatment? Who could stand up in front of a humiliating crowd of confused faces? Who could stand up this way repeatedly. What price did we have to pay to defend our children’s rights?
I walked away from the red brick building with heavy tears filled with relief. I walked away with tears filled with full-blown anger. I threw down the invisible white towel in the parking lot that day. I was completely done with the fight. As I walked to my car, a police officer lifted his hand to offer a casual wave as he strolled by. A reminder that life still goes on.
It was a Friday and the last day we really tried. I woke up more motivated than ever to get Jake to school. I was determined for it all to be different this time. I had to rewrite our story. Jake had to be pushed harder. We tried with all our might. But just like all the days and every day that came before, Jake was not doing well. He was more than not doing well with the piled-on pressure. We had a well-organized, prepared, and structured morning routine. The chess pieces and careful moves were pushed to the background. We were pushing to make this happen now. Jake was screaming and yelling out like he was in pain. He was throwing all the items in front of him. Jake was extremely dysregulated and standing by the front door, frozen. He was unable to communicate or find any kind of breath to take in the chaos he felt. He was in a full panic. Then, and over an hour of struggling later, Jake was somehow, finally in the car. The door aggressively slammed shut. He was swinging at the steering wheel in a hard to describe distress. Parents who understand these moments, really do understand. It is heartbreaking and truly indescribable.
The night before I received an email from Jake’s school. “Jake will no longer be able to come into the side door, it is too disruptive.” It was a kindly worded email, and I understood the rationale from a safety and staffing perspective. Yet, it was just one more thing, and the same difficult path. There was nothing more left to do. I showed Jake this email in preparation. Jake knew he had to walk into the front door, just like all the kids. We struggled in the car to just drive him to school, as the tension was running high. We were all wrapped in tightly, holding in the tears, and shoulders up.
I walked out of the car with adrenalin in front of the school. I knew we were already extremely late. I walked with a confident speed. My husband yelled out from the car as I walked past. “What are you doing?” he said in a firm and louder than normal tone. “I’m walking into Jake’s school to get his teacher to help get Jake into school.” My husband said again “What are you doing?” His voice was crumbling this time into his hands. “She has a classroom of kids! She is teaching a class! She cannot just leave her class!!” he pleaded. It was just not fair, he was right. I turned around and faced the front of our car. What were we even doing? And what about next week and all the days to come? Are the expectations to traumatize our son? Are the expectations to fall apart? I felt the air come out of me hard. It was all in one big let-it-all-go and trembling exhale.
We did not have many words on the drive home that day. The only word we said at one point was “pivot” we had to pivot to find a new way.
There would still be one more IEP. How could I ever expect it to be different. One last call to document that they had tried it all for their records. One last call to parent blame. One last sarcastic comment for the stands. One last “this is a home issue not a Jake issue.” The judgments were stacked on top of the judgments every day from the start. The odds were never actually ever in our favor. But I knew the truth. I knew that we had chosen a better plan. A better plan for Jake. A plan that was customized to his individuality, his future, and his happiness. I did not let their empty threats take us all down this time. This time it was different. I was holding on to a new beginning and choosing peace.
Peaceful mornings felt like summer vacation after we let the turbulence fade. We chose peace in the face of uncertainty. We chose to do what felt right and to follow our gut. We chose to pivot.
It was not long before ABA found us a new coach for Jake. She was the perfect fit, and I could tell Jake was in the right individualized program for him. He was exercising with big yoga balls and making up new dances. He was taking walks outside, learning new games, and practicing his writing skills. They were finding new ways to increase his confidence and to do more. He was facing reachable challenges and getting to know himself with trivia questions that made it fun. There were a lot more smiles on these ABA summer days. This time the smiles were genuine. Small accomplishments filled us all like rays of heeling. We were letting the current guide us this time, and we were locked into the grateful. The pink summer moon this year was a reminder of all the growth and happiness underway. It also symbolized the beauty of what is still to come.
And lately, we are choosing to ride in a raft along the current. We tossed away the small paddles that were never fully capable of rowing upstream in the first place. We stopped pushing hard for the things that would never work.
We spend our days cheering for Jake’s wins as he walks towards reachable goals. There is fresh positivity in the air. The judgements, the should haves, the what ifs, and the overlapped meeting notes have been left to sit on the sidelines. The truth is, they will always be sitting there somewhere.
This is not a story about unschooling, or why we chose behavioral therapy. This is not a story about how to parent a child with disabilities or navigate through a tough education system. This is a story about a child who deserves the world and even more. This is a story about the power of inclusivity. This is about having respect for the authenticity in others. This is about an amazing, growing, and ever evolving human with indefinite potential. It is about knowing what is right deep in your gut, then being brave enough to follow it.
A simple reminder that what is right will not always be the obvious answer. There are times when you must brave more than one storm to find the peace you were always destined to follow. A reminder that sometimes the IEP is more about you vs. them than what is best for your child. A reminder that sometimes the scope can be too far lost to ever be found. And sometimes the answer is only found because of all the storms, and after all the rain.
