Much of my son Asher’s early childhood is something of a blur. Partly because he never slept more than an hour at a time, so l never slept. But also, because much of it was traumatic.
As a toddler Asher had tantrums that were shocking in their intensity, duration, and aggression when he was otherwise a sweet, loving, and affectionate child. People assured us that it was just the “terrible twos”, that he was just “a boy”, and that he’d grow out of it.
Asher was three and a half years old before he began to occasionally sleep through the night. When he did sleep he’d sweat through his pajamas, have night terrors, and have nightmares that were so bad he’d often be unable to go back to sleep at all. The “sleep help” books all said it was a phase that he’d grow out of.
Early diagnosis and intervention is essential for severe mental illnesses so we did everything in our power to find someone who could give us an accurate diagnosis. As a result, Asher’s early years were filled with lots of appointments: pediatricians, neurologists, psychologists, psychiatrists, occupational therapists, school counselors, behavior therapists. Everyone had a different theory, a different diagnosis, a different medication, a different treatment plan that they said would “fix the problem”.
Family and friends had theories and treatment plans to offer as well. These usually amounted to his dad and me being told we were poor disciplinarians, which meant we could “fix the problem” with more rules, more structure, more threats, more consequences. But when we tried this, things always got worse.
I could list all of the outbursts, the screaming, the failed attempts at restraining him and the resulting minor injuries, the broken furniture, and the holes he kicked in the walls, the suspensions from school in 1st and 2nd grade. I could tell you about the panic and fear that gripped him as he’d rage against anyone and anything when he felt threatened or challenged. This happened daily. We lived our daily lives in their shadow. Asher lived in their shadow.
He had few if any friends, was reluctant to join in any groups or activities, and spent two years being homeschooled because our school district couldn’t manage his needs. His anxiety was so high that at age 7 he lost 10% of his body weight, and was peeling the skin off his fingers. And, to be honest, a part of me was always a little bit afraid. Afraid of what would set him off. Afraid of what he would do. Afraid of what would happen to him as he got older, and bigger, and stronger. And most of all I was afraid of the size of his fears. Once, at age 6, Asher told me that when these tantrums happened, “Asher has gone away. l still look like Asher on the outside, but on the inside Asher’s gone.”
Believe it or not, the worst part of each tantrum was what happened after they were over. This was the heartbreaking part because this is when he would become engulfed by remorse and guilt, both still tinged with fear because he didn’t know why he’d behaved that way, or what to do to stop it from happening again. This always led to self-recriminations, self-loathing, and feelings of worthlessness. He would cry at bedtime, saying he was worthless, and useless, and no one needed him.
By the time Asher was 9 years old he was big enough that l, alone, could no longer restrain him, drag him up the stairs to a time-out, or win in any battle of strength. His father still could, but l couldn’t count on him to always be there when things went wrong. We were feeling abused and beaten down, helpless, and hopeless, and afraid for Asher’s future. And all I could think was, “What is this? And why doesn’t anyone know what will help?”
By the time Asher was 9 years old, we were pretty sure that he had bipolar disorder. What l didn’t know was what, if anything, could be done. The BD diagnosis in the DSM is written for adults, and adult symptoms are different, and adult treatments are different, not to mention that Fear of Harm isn’t listed at all yet. No one we saw wanted to give a 9 year old the diagnosis of BD, and the medications they offered didn’t really help.
When I found the criteria for Bipolar Fear of Harm, reading it nearly brought me to tears. Here it was, finally, a diagnosis that brought all of Asher’s seemingly disconnected symptoms together under one umbrella. Finally, something made sense.
That moment changed everything.
Not immediately. It took time to wean Asher off his old medications, titrate up the new ones, and safely increase it to a therapeutic level. All of that took about 9 months. But that moment still changed everything because we finally knew what we were dealing with.
Today, Asher is a teenager who still grumbles about doing his homework, and reports he’s “literally” unable to clean his room. He still gets irritable when he’s tired or hungry like most teenage boys. But, he’s been stable for years now and he doesn’t have tantrums, or nightmares, and doesn’t need the overhead light on in his room all night long. He doesn’t run away screaming and crying when he sees a bug and he doesn’t say he’s worthless or useless.
Now, he usually asks for help when he’s struggling instead of acting out. I can see him thinking problems through instead of just reacting. Yes, we still have rough days sometimes. But, the other day he announced to me that he’s “a happy guy.”
None of the many diagnoses we’d heard in the years before Fear of Harm really made sense. And none of the practitioners we saw ever really helped Asher or our family, even though they wanted to. But learning about Fear of Harm and working with the people at CMHRC gave us the tools to give my son what I feared he wouldn’t get to have: a normal life.