"It's like taking the rock jerk that the Fly is and . . . take him to his logical conclusion, which is when he's fat and playing Las Vegas."
-- Bono, on his MacPhisto persona
Like A Song: Please
March 12, 2014
[Ed. note: This is the 83rd in a series of personal essays by the @U2 staff about songs and/or albums that have had great meaning or impact in our lives.]
When my son was born, I made a solemn pact with God to protect this precious new life with every fiber of my being. We already knew when he was born that there might be issues, and as it turns out he was diagnosed with a mild form of high-functioning autism. Fortunately for us, we live in an area where we have some of the best experts in the field, including therapists and service providers. I stepped away from my career to be able to devote what was needed to assist him through his developmental delays. We did what the experts told us to do. We followed their plan to the letter. We partnered with early intervention service providers and with the local public preschool program. When it was time for kindergarten, we were told that he had progressed to a point where he could attend a mainstream, fully integrated classroom.
So you never knew love
Even though the educators had all the information at their fingertips, we found ourselves in a tailspin within three weeks of the start of kindergarten. Those working with him in the kindergarten program at this new school did not have adequate training or prior experience with children like our son. When he was still building his trust with new grownups, understanding new authority rules and grasping social skills, he was subjected to his first unwillful seclusion by a teacher who should have understood his disability.
An unwillful seclusion is when a child is held back and secluded in a room against his will. This violation broke any trust that our son had with his teachers in the school environment. Through meeting with the school administration, we found their story changed depending on who you spoke with. We demanded a team meeting where everyone responsible for our son’s IEP joined us at the table to discuss this situation. Our son had never been subjected to such a protocol, nor were we aware that this method could be used. Apologies were issued and assurances given that it would never happen again.
Those were hollow assurances, as over the next several months, he was subjected to longer and more frequent seclusions. The more I searched for answers and questioned the school’s authority, the more evasiveness I encountered.
And you never felt wanted
By the end of November, we had a certified behaviorist (BCBA) consulting with the family and the school district to produce a Functional Behavioral Assessment (FBA) and a Behavior Intervention Plan (BIP). This is the stage where families who have been down this road call it alphabet soup because everything has an abbreviation. As our son’s trust continued to erode, he developed symptoms most closely related to post-traumatic stress disorder (PTSD). He became anxious about school, showed trepidation about stepping onto the school property. His drawings used dark colors with the good guy in a box, his eyes crossed out, and large stick figures pointing at the box with mean faces. He cried about school. He couldn’t be in a room with a closed door, and was overcome with fear once he got to school and wouldn’t walk into the building.
As we kept digging for answers, we discovered that he was being removed to a room that would be classified as a scream room or a timeout room. There was no furniture, no outside light, no rug, no padding, nothing on the walls or anything that could be deemed calming. Worse than that, I found out that he was being locked in the room.
You had to win, you couldn't just pass
I couldn’t understand how this was able to happen. Believe it or not, it’s perfectly legal. School districts hide behind the notion of general safety, and if the child has a behavioral outburst (which most younger children on the autism spectrum do from time to time when things get overwhelming for them) the student would be forcibly removed out of general safety to a room such as this. The kicker is that parents do not need to be notified when such a situation occurs in the school environment.
In the U.S., education is a state’s rights issue, so the federal government does not like to get involved as much as it should. Currently, the U.S. Congress has stalled the Keeping All Students Safe Act (HR 1893), which would enact minimum standards to protect children like my son from these seclusions or physical restraint. The states would then take these federal recommendations and integrate them at the state level. Unfortunately, lessons in history indicate that politicians believe the federal government should not dictate to the states how to handle their education system and the states are not taking a proactive approach to protect these developmentally delayed students. If you do an Internet search for “scream rooms” or “seclusion” you will find that this is a universal issue across the U.S. Advocacy groups and families are fighting hard to stop the use of scream rooms, with very little being changed.
So you never knew how low you'd stoop
While on a family vacation, we were notified by the school that our son would not be welcome back to school until we met as a team once again. During this meeting, we were informed that he was no longer welcome to attend the school and the district tried to force us to agree to remove him from the least restrictive classroom environment. The school knew we were on a dream vacation to Disney World, and to receive a phone call with such devastating news stole whatever joy we were having. For the rest of that vacation, we were on the phone to behaviorists, lawyers and advocates to see how we could preserve whatever rights and legal protections our son had.
So love is hard and love is tough
Our son’s time in first grade has been one of constant transition. After the school district requested a period of time for in-school evaluation at an out-of-district school over 20-miles away from our house, the decision was made that our son could go to his districted school, which was the school he should have been going to at the start of first grade. Throughout the fall, I kept replaying the previous year: September trust capsizing and going down the drain; October talks still going nowhere; November, December – are we just starting again?
Please, please, please
So love is big, it's bigger than us
After 19 months, there is a bit of light at the end of the tunnel. Those who were pivotal in this disagreement are no longer employed by the school district. The new people working in those roles are showing much more understanding and compassion. However, that precious time in our son’s life was stolen. The child-like innocence was stolen from our son by the treatment he suffered at school by adults. Our family’s ability to trust the educators in our town is severely compromised. A lot of healing has to happen.
“Please” resonates with me as a mother angry by a system that caused such unrest within my family, broke my son’s trust and compromised that solemn vow I made before God. We followed what the experts told us to do, and yet we still found ourselves in this situation. I know our family is not alone in this as I’ve heard from countless families who have been down a worse path than we have. As difficult of a situation we found ourselves in, it pales in comparison to others’ stories. “Please” demands an emotional outcry. I’m a mother with a sharp pain in my heart, and the song allows me to own that anger that causes the pain. It also challenges me to get off of my knees and change the system so other families don’t have that pain that I do. Please just do the right thing.