Think Like an Advocate
Updated: Oct 10, 2020
All parents encourage, support, and love their children. When learning that our child has a disability, a delay, a challenge….there’s an emotional process for many that mirror the Grief ladder: Denial (Not my child!), Anger (Someone’s responsible for this!!), Bargaining (OK, if I look at it this way or OK if I change his diet then maybe..), Depression (I can’t organize myself to make lunches, never mind help my child with this problem right now) and Acceptance (Time to put on my big girl pants and get to work!). While parents make their way through these stages at their own pace-and, every family is different-the advocate gathers facts, data, and history, reviews reports and finds legal backing, and helps to navigate a path so the child can be in a position to reach his/her fullest academic and social potential. I am a parent, and I am an advocate, and the hat I wear when facing teachers or administrators changes depending on a few different factors. Sometimes it’s time to think like a parent, but sometimes it’s time to think like an advocate.
I have been advocating for my son since he was in preschool. He is 16 years old now, so that makes 13 years. The path and process seemed clear in my eyes, but it wasn’t always clear to his teachers. I was his one to one home therapist. Using ABA, I taught him letters, numbers, and colors. Combining ABA with Orton-Gillingham, I taught him to read. In preschool, however, he struggled. He struggled to make friends, following directions, and with behavior. It was the most frustrating and emotion-provoking thing. I had never felt such pain than when one of his teachers told me that my son was not like other children. He was difficult to manage, and his progress lagged behind his peers. Umm… excuse me? What other child could read at 3? What other child knew the things Anthony did? But Anthony was the one who could not get along with any other child. Anthony was the one hiding under the desk when the classroom environment got too hyped up. Anthony was the one to even destroy classroom material or even hit a child because he was too overwhelmed by his environment. When confronted by his teachers and administrators, I was emotional, humiliated, and even scared.
As the years went by, I continued to advocate for my son. The journey has been a long and bumpy road. Each year was a struggle as I challenged each teacher and administrator to provide the right supports. When I was faced with TEAM members' disagreements, I put away the tissue box, put on my big girl pants, and provided the TEAM data, laws, regulations, and teaching strategies. Despite his many disabilities, he was a productive, functional member in his classroom, and he learned grade-level material. Unfortunately, there came a time when this was not the case. At the start of 8th grade, nothing was working, and he became so disruptive that the school had to call the police and ambulance. I will never forget when I made that right turn and saw all the red lights flashing in front of the school. I stopped my car, grabbed my phone, and took a picture. I couldn’t believe this was happening, and the sight of it all was too overwhelming. I felt I could never explain this to anyone to express my horror. I thought a picture is worth a thousand words… It Turns out I didn’t need to take that picture as that memory is forever etched in my brain. Despite my horror, I parked my car, went into teacher/advocate mode, and started asking questions, making decisions, and taking control. It was not easy, but it was all I knew.
After the second ambulance call to the school, it was time to think of the next steps. This time I didn’t need to take a picture. I just had to put on my advocate hat. I will admit this was hard to do. After seeing Anthony for the second time in that hospital bed, I left his room and broke down in tears. A nurse and the school psychologist looked at me like they didn’t know what to do. They had seen me as the one calling all the shots. I knew, though, at that point, what the next steps were, and I tried so hard since he was in Kindergarten to prevent this from happening. But the time came, Anthony needed a different school.
Finding the right out of district placement was hard and came with its own struggles. There were many rejections from different schools, but we finally found the right fit. It is still heart-wrenching to hear how my son is difficult and how he functions below grade level. I guess the difference is that I am at peace with his diagnosis and functioning level and accept that he may never graduate high school. It took me a long time to get there. And no matter what anyone said, I had to get there on my own. It definitely is a take it one day at a time kind of situation with Anthony. I cannot think too much into the future because things can change, good or bad. It has happened more often than not. The times we thought he was on the right path and things were going so well, then a total 180, and we are in the hospital, and he is being tied down to the bed in restraints because he cannot calm down. The ER doctor injects him with medicine to calm him down, but guess what? The injection has an adverse effect and makes him more agitated. The doctor stating I don’t understand, the dose I gave him should have knocked out a grown man as my son is as hyper as ever. Nothing is what it should be. This shouldn’t be happening to a kid in middle school. But it was, and we had to deal with it.
The ER visits were the worse. Sleeping in a chair alongside him in my day-old clothes and unwashed hair. Informing the doctors on how to care for my autistic son. Most doctors listened. One did not and almost injected him with the same medicine that he had an adverse effect. This is far from what I envisioned when I was pregnant with him. Nothing could have ever prepared me for what I have endured as his mother. To see him struggle with every aspect of his life has been so heart-wrenching. Life isn’t supposed to be this hard, especially for a kid. So you can see how the emotions, humiliation, and being scared out of your mind can sneak up on you when dealing with your child’s disability. Well, let’s face it, when it comes to Anthony, I will always be emotional and scared out of my mind. I am just better at it than I use to be because when I am confronted with teachers and administrators, I think more like an advocate than an emotional parent. Don’t get me wrong, I still am the emotional parent and keep the tissue box handy just in case I shed a few tears during IEP meetings. I am just much smarter at navigating it all.