This mother of a mentally ill son is sick of hearing moms at the playground complaining about their “crazy kids.”
I cringe every time I hear another parent declare, “Oh, my god, my kids are crazy.”
Let me tell you about crazy.
From the very beginning, things were not right with my son. While in utero I almost lost him three times. It was like he just didn’t want to be here. Today, I know his soul was guiding him on the right path, but the desire for motherhood and modern science had other ideas.
As an infant he never slept. Seriously, no infant ever sleeps, but he didn’t sleep but little 20-minute cat naps at any given time. When he was 13 weeks old, I was so sleep deprived, so that during his monthly, “I’m not going to sleep for 36 hours” event, I called my father in pure panicked desperation, likely sounding like the insane person I was. He guided me to lie on the floor, nurse my son, and just let myself go to sleep. He would likely do the same. I woke up like ten hours later, my son at my side, looking up at me with a big smile on his face. The crisis had passed. Within 20 minutes he was miserable and my breasts were engorged, and the cycle started all over again.
At age two, he hated big open spaces, and would crawl in cabinets, laundry baskets, the bathtub with his Winnie-the-Pooh stuffed animal and “feely blanket.” He would scream and scream and scream if you took him out. One night he slept in the broom closet and I let him so I could sleep. The pediatricians did not suspect anything out of the ordinary because although my son was at the tail end of development benchmarks, he was just on the other side of it and they didn’t think that was too concerning.
At age three, in a Head Start preschool program, the teacher called wanting to know if my son had some sort of developmental delay. He was acting out, going off by himself and refusing to interact, and then when it seemed like he was warming up to the kids, he’d hit them for no apparent reason. When I would talk to him afterwards at home, he just said, “They hurt me.”
As a new mother, I felt like a failure.
That failure feeling got amped up when, two weeks into kindergarten, the teacher called and said, “Your son is not ok.” Those were her exact words. Then she went on about maybe ADHD or other developmental delays and the school said he needed to be tested. There weren’t any “No Child Left Behind” laws at that point or any “free and appropriate” education tactics for parents with special-needs students to employ. I didn’t even know what a special-needs kid was.
It took me a few years to get there, too. I had him tested. But as the doctors explained, it’s hard to figure out what is going on with a child of five. They did say he seemed delayed, but what was the cause of it, they didn’t know. They suspected an alphabet soup of things, and suggested he be tested yearly until they could determine more.
Then when my son was seven, he tried to kill himself.
He ran away yelling that he wanted to die. Any mother who has chased a child that didn’t want to be caught—even in fun—realizes what a panic that is, especially near a highway overpass (we lived a block from a major interstate at the time). Just as he climbed up on the pedestrian over walk and was going to jump, I grabbed him. I took him home, made him take a warm bath, and made him macaroni and cheese, his favorite. He calmed down. I called a child psychiatrist. But I had crap insurance. The $50 copay for a specialist was beyond my single-mother capabilities. Two weeks later, he tried to jump from a two-story mezzanine at his elementary school. The school would not let him back in until he had seen a doctor and the doctor cleared him as stable to return. I robbed Peter to pay Paul and I skipped meals to help pay for the doctor. He basically did an outpatient version of psychiatric care—seeing the doctor almost every day until the doc would write the letter to get him back to school. It took two weeks.
When he went back to school, the kids started picking on him on the playground.
They called him retard, stupid, and loser. They would exclude him and taunt him. I tried to teach him about diffusion, about walking away. Two weeks before the school year ended, he took on 13 fourth graders. They expelled my son, and suspended three of the fourth graders. I was furious. But I was poor in a rich district, a single mother with three children under seven years old. And clueless. Yet determined.
I just kept reading every child rearing book I could get my hands on. My son would meltdown daily; declaring he was going to kill himself was also a near-daily occurrence. I had learned some tactics from the mental health providers treating my son, to hold him a certain way to keep him from hurting himself or anyone else. I would put my chin on top of his head and hum and rock, and that seemed to calm him. Also baths and showers would calm him, but getting him there took major work.
By eight he was on heavy medication, many for which he’d have an atypical reaction. Regardless, he would get in trouble at school. In fourth grade I put him in a charter school, hopeful that the more one-on-one attention would help. It did for a short while. Then he got suspended for playing kissy face with one of the girls in his class—but the girl’s parents felt it was “assault.” It was a he-said, she-said moment. At eight years old.
We moved again, my job taking us this time to Washington State. He started fifth grade and there was some stability in our lives. I married and my son had a near “normal” life. I thought that was going to cure him. That he would mature. Things would get better.
But he still struggled in school—academically, socially, and behaviorally. We went to family counseling. He had a psychiatrist. I had him tested again. The word Autism started being thrown around. More alphabet soup diagnosis without confirmation because “he’s so young” continued.
One neurologist told us his dopamine levels went from starving to flooding, making his thinking process impotent. I asked him what that meant, and he said my son was still too young to know for sure.
We put him in an alternative middle school, and for a few years, although he still struggled socially and academically, some of the behavior issues seemed to calm down. I had gotten a little wiser and got him at least a 504 plan—part of the federal civil rights law that prohibits discrimination against public school students with disabilities. That includes students with learning and attention issues who meet certain criteria. He actually made friends. However, at home, it was difficult on most days to know if his negative behavior was from cognitive/developmental delay or just the normal learning curve for any preteen. He would sneak out in the middle of the night and steal food from the cupboard and hide it in his room, or eat every last cookie in the jar, or all the granola bars, or the leftover pizza I was going to take to for my lunch at work. He would cry and scream for minor disappointments. Any time you told him “no” there would be a huge suicidal ideation meltdown.
At 12 years old, he had a major meltdown with suicidal ideation. At this point he was getting too big and strong for me to do the restraining/calming holds I had been taught when he was younger. He, again, was screaming that he wanted to kill himself. He punched through his bedroom window, grabbed one of the broken shards of glass and turned on me with it. The screaming alerted neighbors, who called the sheriff.
That incident led to his first stay at a youth inpatient psychiatric unit.
It would not be his last. The team at the children’s hospital was fantastic, but we still didn’t have a clue. They suspected BiPolar Disorder, rapid cycling. His IQ was tested. He was just above—like one point above—what the state considered intellectually delayed/disabled. One counselor saw what we, his family, were beginning to see at that point, that he had a great talent to mimic social norms, but that it was pure parroting. He didn’t really know how to behave.
At 13, during another inpatient stay following a failed attempt to hang himself in the garage, the doctors really started talking about High Functioning Autism, or Aspergers with comorbidity of mood disorder, Not Otherwise Specified, and Generalized Anxiety Disorder with Panic Attacks, and Atypical Agoraphobia, which presented itself as he needed to know where I was at all times. It was then that I finally got him an Individual Education Plan (IEP) with our school district.
But then my son started running away.
For three years, my son would run away. The runaway line in our county has dozens of reports on him. He would come home, settle down, do well for a few days, sometimes weeks, once for months, and then have a suicidal episode, go into treatment, just to then run away again. He’d always eventually come back, looking like a cat which had been in heat—a few more scratches, his hair matted, in dire need of hydration, a good meal, and a long sleep. Meanwhile I still had two younger children and two older step-children to care for and parent. In the middle of those years, I quit my day job because caring for him was becoming a full-time job. Doctors appointments, IEP meetings, counseling appointments, going to court because of his runaway activities . . . it was nonstop. I tried to teach him things like mowing the lawn. One week, he’d do it just fine and the next I’d have to tell him how to start it again, or where the gas went in it. One time he put the wrong fuel in our leaf blower and wrecked it. As he cut the lawn, you’d see him talking to himself, making faces—seemingly involuntarily.
At 14, the diagnosis for Autism Spectrum Disorder was assessed again, along with the comorbidities that the children’s hospital determined a year earlier. Additionally, I got the school district to also do an assessment, finally. They had been pushing back (as is many districts’ tactics when any Child Left Behind enforcement from parents occurs). I was fully in the special-needs child world then. Yet, he was still constantly on the edge of suicide. At one point he was on eight different medications. Again, he presented mostly atypical reactions to any of the psychiatric meds available.
Once when they put him on Depakote, I found him at 2 a.m. on the kitchen floor, passed out with his head in bag of marshmallows.
Then one day his counselor told me, “I can’t tell what disorder behavior is and what medication side effect is.” About that time, my son refused to take any of his prescribed medication with the exception of the meds to help him sleep. Then our state saw a crisis of adolescent mental health providers. Adolescent psychiatrists were few and far between. We’d get one to start treating my son and then they would move, the practice would close, and we’d have to start over with a new provider. I tried without success to get him in a school that a local hospital ran for kids like my son. But he wasn’t “bad enough” to qualify. He started pacing all around the house, inside and out. He’d roll on the ground outside “to make it all stop.” It was nonsense behavior from the outside looking in.
About that time I got a call from our town’s library that my son’s quick actions had saved a man’s life. According to the librarian, an older gentleman had left the library and gotten about ten feet from the door when he collapsed. She said that my son seemed to instinctually know what to do to get him stabilized and instructed other bystanders to go into the library and call 911. The first responders to the call were even impressed, asking him how he knew what to do. He told them, “YouTube.”
Two weeks later the same librarian called me to come pick him up because he was just sitting in the library bawling uncontrollably. At home he would try to be funny and uplifting one moment, and abusively scream at the easiest target available at any given time. He started jumping from one crisis to another—small dramas made into sheer emergencies by insane levels of emotion. Our mental health providers at the time called it “explosive” behavior. Whatever its label, it sucked dealing with it, let alone living with it.
I tried to encourage him in every interest he had: music, video making, stand-up comedy.
We got him to one point with the comedy that he did a stand-up routine at a local open-mic night and he killed it. But his second attempt was not as successful and he swore he’d never do it again, that people hated him and he was stupid and unable to do anything good in this life. He just wanted to die.
My husband and I often argued what to do about this child. Our other children were uncomfortable around their brother. Anyone’s animal brain seemed to say “stay away” when my son was in their presence. In fact I lost friends over my son’s disability. I was angry at their cowardice initially, but I understand now, even if their rejection was hurtful.
At almost 16 years old and off of any meds except his sleep meds and refusing to see a doctor my son started self-medicating. First it was pot and alcohol. The second of which he never really developed a taste for; however, then someone turned him on to OxyContin. Then, like many struggling with opiate addictions, heroin was easier to get than Oxy. We put him in four different treatment programs, all of which catered to neurotypical brains and addicts. He didn’t “graduate” from any of them. It was only conditioned experience that helped him get clean. He got in trouble with the law, did months of jail time, and lost the trust of his family and friends, as well as his freedom.
He tried to go back to school, but from my perspective, I saw the school district doing nothing but pushing out kids who took too much of their time. I was told in so many words to sue them. But I couldn’t get an attorney to take our case. The school was “servicing” most other special-needs kids. I tried to reach out to other parents who I thought might benefit from our case. No one was interested. They were too busy working two jobs and trying to pay for health insurance and their own kids’ issues to join in what they viewed as my fight alone. Someone at school told him that as an 18-year-old he could disenroll himself. He filled out the paperwork to leave. I tried to get him enrolled in an alternative program at a local community college. Even with “accommodations,” he was unsuccessful and his second attempt at alternative high school ended. There weren’t any other options, as he was unwilling and it was pricey to do a private G.E.D. program.
Next I tried to be his educator, daily life-skills coach, and to push him to the goal of independent living.
We tried everything. I mean everything. I learned quickly that telling time was a skill he only sometimes could access. That money was a concept he only understood that if he had it, he could buy things with it. Simple arithmetic was beyond him at any given moment, and then the next he could figure out how much putting together the bike of his dreams would cost. I learned that washing dishes seemed to cause him physical pain; but, a shower could be the balm to whatever anxiety he suffered. At moments, nothing and everything made sense.
He continued to go on and off self-medication. His running away began again but he would go further each time: Portland, Oregon; Redding, California, or Spokane, Washington. I went and rescued him each time. At one point he went for a walk at 3 a.m. because he couldn’t sleep and was jumped and beaten and almost left for dead. His agoraphobia became extreme. He wouldn’t leave the house at all. One local wannabe gangster would accost him at the grocery store or gas station and threaten to kill him. After a year of convincing him to go to the police, my son turned witness against him and the guy, who law enforcement had been trying to nail down for tons of other crimes for a period of years, was put away.
At that point and for the next two years, I tried to get his doctors to do another diagnosis. They started talking about schizophrenia, which frightened me greatly. But I knew that there were medications for schizophrenia, so maybe that would be the key to a tolerable life with and for my son. But accessing care became difficult. They also said he had the intellect of a 12-year-old. I tried to get the state to provide activities of daily life services, therapy, and job training. They refused.
He wasn’t bad enough, they said.
Another reason he didn’t qualify for services, they determined, was that he didn’t have a developmental delay diagnosis by age three. He didn’t qualify. I was able to finally wrestle Social Security to give him a small stipend to take care of him, but I know no one in the greater Seattle area that can survive on $603 of Social Security disability, and $126 in food stamps a month. At one point during those two years his younger sister moved out at age 17, unable to deal with his abusive behavior any longer. My family was fragmenting.
In those two years where he was my full-time job, he would take two steps forward and two steps back. He’d get in trouble with the law—all misdemeanor stuff like hanging with “friends” and knocking over a port-a-potty with his buddy inside. Then, he was at a party and his friend got drunk. His friend convinced my son to drive them both home. My son didn’t have his license, had never been taught to drive. With his emotional instability, my husband and I decided we would make sure he had a bike to get around and taught him how to use the bus system. That night with his friend’s car, my son changed lanes and hit another car. His drunken buddy told him to flee the scene. Of course they were caught. Fortunately no one was hurt. Then, he was convinced by a very predatory individual to take a bunch of Xanax and play with air soft guns in a parking lot of an apartment complex. He remembers none of it. However, air soft guns in Washington State are considered a firearm. He did time for that. He screamed at his girlfriend on the street that he was going to kill himself. The cops arrested him and charged him with domestic violence. The judge told me I was a terrible mother when I got up in court and told him about his illness and our inability to find him good treatment and help.
The Judge chastised me in open court saying that when you look at the dictionary under “codependency” there was a picture of me. I have the court transcripts. I’m not lying. He actually said that.
After all the court cases were closed, he had a period where he’d get a job for a few weeks, clean up his act, work hard towards independence and a life he could be proud of consistently. But depression would hit him again or he would be so manic he couldn’t focus. I started noticing that he was talking to himself on a regular basis. I would listen as he was in the bathroom or in his room, arguing with himself. “Just end it already,” would be a common reply.
I found him a new doctor and we were starting new medication that really seemed to help him with his anxiety. But the people he attracted in his life were still not good people and no matter how I counseled him, how I tried, he seemed to hang with the homeless outcasts and drug addicts.
My sister came for a visit and tried to help. After four days she said, “There’s nothing I can do to help him, or help you. But at what point do you just let it all go?” I didn’t have an answer for her, but I agreed, there was nothing she could do, hell, any of us could do to help. I’m not a psychiatrist, a neurologist, a social worker, or even a priest or attorney. I’m just a mom.
Right before his 21st birthday, I found my son in his room, an apparent heroin overdose. Quickly I administered CPR and called 911. They rushed him to the emergency room. They stabilized him and about eight hours later, sent him home. They sent him home. How crazy is that? But there’s no TV-land detox place where people who OD go to get better. That’s not how it works in real life, especially not in the United States where healthcare is for-profit and a commodity. They stabilize such patients and send them on their merry way. When I drove my son home, he was talking to himself again. He was rocking back and forth, and clearly not in his right mind. But where could I take him? There are two state facilities in Washington. They are reserved for mostly the criminally insane. In King County, where we live, there are a mere 201 inpatient beds for those seeking help. Add in addiction issues and the number is smaller.
The next week we learned his new psychiatrist “fired” him as a patient because of the overdose, because someone who overdoses is not worthy, apparently, of psychiatric care. The doctor told me that the more I mothered him the less he was going to succeed.
Another round of petitioning the state for access to care was denied. I started being prone to crying for seemingly no reason at any given moment.
My therapist said I was distressed and grieving the loss of the son I thought I’d have.
Within a few months, we found evidence he had relapsed. We got him on a methadone program. Then, we also learned that he had allowed his “friends” to steal from our home, items belonging to his little brother. He would claim his friends had nowhere else to go, they needed money to eat. He was earnest about these reasons, as if such thoughts were the most logical thing ever.
However, my family had reached its limits. No one, not my spouse, nor his siblings, could live near him anymore. After a few weeks of my family saying my son had to leave, my youngest son found that a Valentine’s gift card his girlfriend gave him along with his piggy bank were missing. The latter of which would be found some weeks later under his older brother’s bed, empty. It was the straw. The words of that jerk judge, the psychiatrist that released my son from care, and those of my sister haunted me.
Should I just let him flounder in the world?
Before I could answer my own questions, there was a dramatic moment where I found my son had ripped off the screen to his room, that my husband had screwed in so no one could sneak in and out, and thrown it down the street in a ditch. I finally lost it and told him he had to go. He quickly found a small cheap apartment on the property of a friend’s parent’s home, where his friend’s dad said he would teach him bike mechanics and get him on the straight and narrow. Within three days there was some drama, for which I can get no clear explanation, and my son was moving to Seattle to live with another friend. That lasted three weeks.
Then he spent months living in a homeless encampment on the edge of the interstate and state forest.
In that time he went back on the methadone program. He got his wisdom teeth pulled by the county health people, and secured a job in a bike shop putting new bikes together and got a very small basement apartment. Meanwhile he would call me or text me incessantly to give him money, solve whatever problem there might be. It breaks my heart daily as he cries and screams on the phone that he doesn’t understand why his bus card doesn’t work, why his food card is empty already. He can’t seem to keep a pair of shoes from damage for more than two weeks.
Recently, he claims his roommate stole all his belongings. The ever-watchful librarian called me to let me know he had been robbed and his things vandalized. He has gotten back on some medication, what I don’t know, and he is seeking housing help with the local community mental health organization. But then he shows up here and is sleeping in my carport one late spring morning. He’s suffering from trench foot because he didn’t have enough sense to keep his feet dry and clean. He’s walking the neighborhood talking to himself and crying uncontrollably. I had a local police officer stop me recently and tell me that they witnessed him punching himself in the head, but they couldn’t stop to assist because they were on their way to a domestic violence call. He’s lost at least forty pounds and his hair hasn’t been cut in almost a year. A friend of mine who works with the local homeless population said that crowd is calling him “Blond Jesus.”
I took him after the recent drama to get new shoes, and everyone in the store was starring at my son. He walks funny now because of the trench foot episode. He’s sickly thin. He talks about nonsense seemingly to hear himself talk—like a 12-year-old or toddler would. But he’s a grown man. His arms are scarred from heroin use.
Everything in you, unless you’re his mother, says stay away. There are dozens of more stories at every benchmark, every tried tactic with eventual failure.
Trust me, there is nothing we haven’t tried to help this child. He is my lost boy, my wandering boy, the boy who wasn’t supposed to be, but is.
Clearly he is mentally ill and intellectually challenged, but just on the cusp of anyone thinking or believing he’s truly deserving of services like others who struggle with the same.
Now he claims he’s going to move to California because he hates how wet it is in Washington State. He’s legally an adult and not “bad” enough to receive any services from the state or federal government. What is a mother to do?
It’s all crazy. But, the moms sitting around the playground at the community center shaking their heads at their laughing, screaming-in-delight, neurotypical children complaining about crazy just don’t get it.
Casondra Brewster lives in the Cascade foothills with her youngest son and husband and a menagerie of animals. A recovering soldier and corporate communications hack, she spends her free time learning to sail the Puget Sound. Currently, the whereabouts of her adult son living with mental illness is unknown.