Treading Water
When my son was in 5th grade, he slumped into a deep depression.
My husband told me he wanted our son pulled off all medications during summer vacation between 4th and 5th grade. Desperate to "prove" to my spouse that our son really did need his medications, I actually agreed to take him off his medications. The result was catastrophic. Our son slipped further and further into depression and overwhelming anxiety. He refused to do any work at school. He refused to participate in class. When we went to parent-teacher conferences, his teacher told us she was at the end of her rope, not knowing how to help our child succeed in her class. He was supposed to be working on a history project with several classmates, but had simply put his head down on his desk and refused to do anything to help on the project. I informed her that he was no longer on his medication. She said she felt he needed them and would we reconsider. But my husband stood firm: No medications.
As we approached the holidays, the school contacted me to ask me to attend a meeting two days before school let out for Thanksgiving break. I told his dad and he said he couldn't make it, so I went to the school alone. The meeting was held in a first-grade classroom. I remember how incongruous it was to have a group of professional adults having a serious meeting while sitting in chairs designed for six-year-old children.
They told me that they felt it would be better if my son no longer attended a regular public school setting, that they were referring him to a specialized program for kids with emotional-behavioral disorders. My mind swirled. My son didn't have an emotional-behavioral disorder, did he? The room was spinning. What did this mean? Would he ever be able to come back to the mainstream setting? Had they truly done all they could to engage him? They assured me they had, and that the teachers didn't have the time to invest great portions of their day to one student. I knew this was true. Of course it was true. Teachers teach groups of children. If one couldn't or wouldn't keep up, then that child had to be moved to a different setting. But I couldn't help but feel as though I had failed him. I felt like I had not stood up for him enough, that I hadn't fought for him hard enough, that I had simply fallen down on the job. Where was this "specialized program"? They told me it was in another community forty-five minutes away. How would he get there? The school district had to provide transportation for him. What is the new program like? Will he be safe there? What kinds of issues do the other kids have who attend it? They couldn't answer any of those questions for me. It was the Tuesday of Thanksgiving week, and they didn't want my child back after Thanksgiving break. Wednesday was to be his last day there. One more day, and he would be cut off from everyone he had known since first grade. I cried inconsolably. My husband was not there to lean on. I was on my own in this. And I wasn't sure how I would get my son through it when I could barely accept it myself.
We got through Thanksgiving. My son was not happy about changing schools. I pleaded with his dad to allow our son to go back on his medications. If he was on his medications, he wouldn't be so depressed and anxious all the time and maybe we could get him back into the public school setting by Christmas. But his father was vehemently opposed to medications of any kind, and he would not agree to put him back on them. I cried myself to sleep for weeks, months, it felt as though I would never run out of tears.
But something miraculous happened. Because my son did not have an emotional-behavioral disorder, his behaviors were far less severe than the other students who attended the specialized school. He became a leader, and the other children looked up to him. Since the school was designed to address the behavioral challenges of the children who attended it, academics were secondary, which made it easier for our son to excel there. There was never any homework, something he struggled with greatly in the mainstream setting. The teachers there loved him and praised him and boosted his confidence and made him feel like he mattered. The teachers at the mainstream public school did these things as well, but they had twenty-three to thirty kids in their classes, while the teachers in the new school had just eight, and each teacher had two assistants in the classroom with them at all times - resulting in a very low student:teacher ratio. There were some children who attended the new school who exhibited dangerous behaviors - one broke a window with a chair one day, another stabbed a teacher in the neck with a pencil on another day. There were always stories of the antics that went on there when my son arrived home each day. But the meetings with the staff at this school were so very different from the meetings at the mainstream school. Instead of hearing how he was disengaged and unwilling to do his work, we heard about how engaged, willing, and interesting he was in the classroom, and how all the other kids looked up to him and respected him. He still had plenty of struggles, but he was excelling in this new environment.
He also started to adopt some of the colorful language used by the kids there. To hear my eleven year old son use the word f#@k was shocking. Swearing is low on the list of priority behaviors the staff at this new school spend time working on with the kids, so most of the kids swore frequently and loudly. Swearing was not normal in our home, so to hear my son using these words was a difficult adjustment. He also began to dress differently, wearing his pants low on his butt, so his underwear were clearly visible above the waistband of his pants. And he started wanting me to buy him skateboarding shoes, which are flat-soled and terrible for growing kids' feet. He started wearing sweatshirts, but only wanted zipper-front sweatshirts that are often called "hoodies". He liked clothes that had skulls on them. This was so different from how he had always dressed before that it was difficult for me to agree to allow him to wear such attire. But after going to the school several times, the reason was clear: He wanted to dress like all the other kids at his school. He wanted to fit in.
He dressed like a gangster for the next five years. A mother should never have to see her son's buns poking out of the top of his pants once he hits his third birthday.
The kids were not allowed to socialize with one another outside of this school. Part of the reasoning behind this was that these kids have many challenges they are dealing with, and the school doesn't want them to lean on one another for support in their bad behaviors. They want them to leave their friendships with classmates at the door when they leave school. My son did befriend a boy, though, and they did spend some time together on occasion outside of school. My reasoning for allowing my son to break the school policy was very simple: He had no friends. This child was a nice kid from a good family who had behavioral problems. I spoke with his father several times and he was an involved and vigilant parent and I knew if my son was at his house, he would be monitored and the kids would not be able to get into trouble.
And they didn't. For awhile.
Eventually, the other child's behavioral issues escalated and I was no longer comfortable allowing my son to spend time with him outside of school. They had only hung out two or three times so I didn't view it as a huge loss, but to my son, it was the end of the world. He felt the other child was his "best friend". This made perfect sense given that he was also my son's only friend. And the two or three times they had hung out together was two or three times more than he had hung out with any other child outside of school in the previous four years combined.
One of the biggest issues I had was that my son was highly impressionable. His vocabulary had become so colorful that I started calling him Leif Erickson because he swore more than a pirate. He also started acting out with behaviors we had not seen from him before. He was observing these behaviors by his classmates and then emulating them. We spent a lot of time patching holes in walls and replacing doors during those years.
In seventh grade, it was decided that our son was ready to return to the mainstream setting. He would be in middle school, and he would be reintegrating in the middle of the school year. He was still not medicated. I met with the middle school IEP staff and his new case manager. She was perfect for a middle school special education case manager. She was stern, a little gruff, and she wasn't a tiny woman. She was ready, willing, and able to take on whatever behaviors her students dished out. I liked her immensely from our first meeting.
My son didn't want to leave the special school. But the decision was not his to make. It wasn't really ours either. The staff at the special school had decided that he didn't belong there, that he never had belonged there, but that there hadn't been anywhere else they could have sent him. The lack of school settings specific to kids with autism spectrum disorders is severe and pervasive, and not just here - but everywhere, especially in rural areas like where we live. We have such limited options and we shouldn't have to send our son to a school designed for kids who stab teachers in the neck with pencils when the mainstream school setting can no longer meet his needs. But that is the choice so many parents are forced to make every day. And the ones who suffer, in the end, are the kids.
I am always hopeful that our political leaders will finally get serious about the mental health crisis we are facing in this country and provide funding to ensure the needs of people across a broad spectrum of mental health disorders are met. But my hope has been slipping away as the sand keeps slipping through the hourglass, and our kids are slipping through the cracks, one by one by one, forced into educational and medical settings that are not specific to their needs, that are more harmful than good in many cases, and that don't consider the rapidly changing emotional state of kids who would struggle even if they weren't challenged by mental health of neurobiological disorders.
We need to push for higher spending on mental health services and resources. Not tip lines or pamphlets, but providing incentives to encourage people to become child psychiatrists/psychologists (did you know that there is a national shortage of both?), more inpatient placement options, and more facilities for children who are a danger to themselves or others and need a long-term residential treatment program. We also need more schools that meet the needs of kids with specific diagnoses rather than a "one size fits all" approach that we seem to be currently employing. Kids with childhood schizophrenia and kids with major depressive disorders or autism or bi-polar disorder all have unique needs that can't be met in a setting where kids with all diagnoses are tossed in together like some diagnostic salad. Telling parents to take a child who is having serious rage issues home and "call 911 if he gets out of hand again" is creating a situation where we are doomed to have more families torn apart in a bloody tirade. This is simply unacceptable in a country that continuously calls itself "number one" and which boasts of its greatness all around the globe.
Until we address the burgeoning mental health crisis we have here, we have not earned that title. Not even close.
