I am currently taking part in a year-long advocacy training program called Texas Partners in Policymaking. With each new speaker/trainer we have had, I have learned more and more that the things I fought for have been the wrong things. You know that moment when you hear something that just makes you feel like you're being punched in the gut? Yep, that is what I have experienced repeatedly these last few months.
I have made, I fear, terrible decisions for Koby's education. I have made damaging assumptions about his, his peers', and his possible teachers' capabilities over the years, and I have allowed him to be segregated away from the general school population for too long.
I cannot rest until I make it right.
Koby is a nine-year-old, fourth grade student. He began public school education when he turned three and has been in structured classrooms that serve autistic students during his entire school career.
He has been placed in classrooms with knowledgeable, loving, encouraging teachers every year. Our family has come to love and cherish these teachers who so often become very present in our personal lives. So, from the get go, let me say that I am NOT at all blaming them or saying they are not fantastic educators. They have all been awesome!
It is the system that I am finding fault...and I place the most blame on my shoulders because I have sat in meeting after meeting and supported the decision to keep him where he is. I have been his most powerful advocate, and I advocated him into isolation from his neurotypical peers.
Koby has spent almost all day, every day in these classrooms. I consider them to be self-contained because with the exception of lunch and specials (art, PE, computer, etc.), he stays in his classroom with a very small number of peers. And his participation in lunch and specials is fairly recent. A diagnostician (whom I admire and respect deeply) corrected me when I called it self-contained, but I stand by my statement because, for Koby, it is apropos.
When Koby began school, he was not potty-trained, he had little language, and his behaviors were fairly severe. Aggression, long meltdowns, and destruction, which lead to restraints or the clearing of the classroom were very common occurrences.
Over time, his language exploded, his behavior stabilized, and fewer meltdowns and restraints occurred. He still has bouts of aggression and destruction, but they are not like they were before. Perhaps, and very likely, the structure and stability of his structured classroom setting helped.
I have come to learn, however, that being away from his peers for his entire educational career is not preparing him for life after school. As one of our speakers, Patrick Schwarz, so deftly said, "There is no self-contained Wal-Mart." He reminded me that Koby, like everyone else, belongs everywhere. Koby deserves to be a real member of the school community, and the school community deserves to have Koby among them.
We aren't preparing Koby to interact with them, and we aren't preparing them to interact with Koby. We will all be together in the community, and that training needs to start now!
Academically, Koby is nowhere near the level of his typically developing fourth grade peers. Unable to read, write, or do math, he is much more like a beginning kindergarten student. For years, the school has used a sight word reading program with him, but he has not retained any of it, and though he loves books, he, sadly, cannot read a word within them.
In the last few weeks, he has started to learn some basic addition and subtraction. If it is single digits, and no higher than ten (when he runs out of fingers), he has been doing well!
He is ecstatic and proud, and so am I!
But this is as much math as he has ever learned or mastered in his life.
Koby has been tested for an intellectual disability twice. Both times, his scores fell into that range, but both evaluators believed that his autism was to blame, not his intellect. They believe that his communication deficits, instead, have impacted his learning, and they feel that over time, his score will rise. So, he does not have that label currently affixed to him.
I don't know why Koby is so far below his peers. It doesn't really matter if it's autism or an intellectual disability. The reality is the same.
Either way, I can't help but wonder if he would have learned a bit more in a typical classroom, with plenty of supports in place, surrounded by his peers.
This is the essence of my guilt.
So, I have been actively taking steps to fix this wrong.
I had no idea where to best begin. I know that because he has not learned any of the prerequisite skills of his peers, it would be a disaster to drop him into a fourth grade classroom. He would have no meaningful learning, and frustration would certainly lead to an increase in meltdowns, aggression, and destruction.
So, my idea was to let him participate in learning activities with kindergarten students. My theory was that if they were doing a reading or math lesson, Koby could participate and start learning the skills and classroom behaviors that he has not yet mastered.
I asked the principal and special education teacher for an informal meeting, where I shared this unusual idea. I called it a grand experiment. To my delight, I was not laughed out of the school. I was asked some probing questions that I had to admit I did not have an answer to. The meeting was positive, though, and we closed it with the plan to reconnect by phone after the principal could do some more exploring of the topic.
After a few more conversations in the coming weeks, it was clear that my vision was unlikely to happen.
A second meeting was called, and this time, the attendees were a general education teacher, the principal, two diagnosticians, a behavior/autism specialist, and me.
We spoke for a couple of hours, and I shed many tears in sadness, frustration, and guilt. My desire to end Koby's segregation is complicated by his current placement, age, and overall limitations of the education system.
All participants agree that it is time to give Koby more opportunities for inclusive education with his peers.
We disagree on the best way to go about it.
I was told that there is no way to let Koby participate with younger students' learning. It does not matter that socially and academically, he is on their level.
The prerequisite skills have to be taught in the structured classroom, and then they want him to go to the general ed classroom afterward.
I made it very clear that my long-term goal is for him to be with his peers, not in a classroom on a faraway hallway.
The current plan is to take him in to spend a little bit of time with a fourth grade classroom during science class. He enjoys science, so it seems like a good place to start. The general ed teacher will have to collaborate with the structured teacher to find ways to include Koby and to help him be able to express his understanding of the lesson in ways that do not involve writing.
More emphasis will be placed on his reading and writing skills, and the autism specialist said she would explore different reading programs to use with him to see if a better option is available.
I shared several resources with them all while I was there in hopes that they would benefit everyone as we begin this journey.
We have scheduled an ARD to put this plan into place formally.
So, where am I now? I'm still frustrated and dealing with extreme guilt. I do not believe I am being successful in my current advocacy for him, but I am not giving up.
It may take time, a very long time, but I will fix this wrong.