From the very beginning my son Elijah was extremely difficult to settle, we knew we needed help and that something was very wrong. He would scream for hours, have raging meltdowns where he’d kick, hit, spit, and couldn’t be consoled. He had horrible separation anxiety, to this day we can’t go from room to room in the house without him having to be with us, he can’t be by himself.
From a very early age he had severe night terrors. These would happen throughout the night and he would wake up screaming, and oftentimes we couldn’t tell what he was saying, but he was scared to death. He would never be able to sleep alone. The fear of being alone was so intense that for years we’ve tried to get him to sleep alone but at age 9 he still sleeps between us in our bed.
With less sleep, his challenges would escalate. When he was four we met with a behavioral pediatrician and she was the first doctor to tell us that his sleep habits (taking hours to get to sleep, sleeping for only a few hours, waking up screaming from nightmares, and being afraid to be alone) were not normal. She prescribed Clonidine, and that was the first time my son was able to fall asleep within an hour of our bedtime routine. It also somewhat decreased his nightmares and night terrors, but he still doesn’t wake up happy. He’s never really rested and he’s often angry or becomes angry soon after waking. He still has nightmares, often about intruders and it’s like a horror film to him. He’d wake up terrified and angry because of the dreams he has.
His fear and anxiety is crippling. He was hospitalized for the first time when he was eight and a half and the staff there said they’ve never seen anything like the anxiety he was showing. He was terrified. His main fear is both of us (his parents) dying at the same time and what would happen to him. Or, he worries we might all die. He’s scared of new interactions and new people, he screams at night with nightmares of strangers, intruders, and embarrassing himself. He’s also scared of getting water in his eyes, and he couldn’t take a bath for the first few years of his life.
He also has an extreme phobia when it comes to school, so most mornings his fear comes out as extreme rage and irritability. We often have to physically get him into the car while he’s raging just to take him to school, it’s a hard way to start a morning. When we learned his fear translates into rage it helped us parent him better, knowing he was anxious so we were able to shift to try and help address that fear instead of his “behavior”.
When the fear comes out as rage he often breaks things. He’s broken four TVs and probably 20 remotes by throwing them. At one point we had almost 60 holes in our walls. It’s like he gets super strength, and it’s amazing that he’s never really hurt himself. Afterwards, he feels the worst remorse, he feels horrible. It’s heartbreaking to see him battle with such low self-esteem.
We often question what he can remember after he rages, it’s like he isn’t there at all. There’s basically nothing you can do to de-escalate these episodes, they just need to happen. But when it’s happening it’s not Elijah, it’s not my son. Outside of these periods of symptoms he is so sweet and happy and loving. You just never know when it’s going to turn. And when it does turn, that’s not our son. He comes outside himself.
There is definitely a difference with his mood regulation when he is overheated, during the day and especially at night. When we would pick him up from daycare he would be the only child dripping with sweat, even though they were just sitting watching a movie or doing crafts. He just can’t handle being overheated and there is a clear correlation with his body temperature and his aggression.
It’s interesting looking back and now knowing his body temperature relates to his other symptoms of Fear of Harm and connecting it all. It brings everything together. But searching for and finding help has been a long road. Elijah’s been prescribed everything from anti-anxiety medications to antipsychotic medications, but nothing has helped except for Clonidine.
A lot of other parents we know have tried to tell us what to do, have recommended we do this or do that, things that worked for their kids. But they don’t understand that nothing works. We’ve tried everything. And we don’t need to have other people tell us what they think we’re doing wrong, as special needs parents, my husband and I are already our biggest critics. But, we’ll never stop searching for help.
It can feel like you’re always taking one step forward and two steps back. The main thing that’s been very helpful is networking with other parents whose children have been diagnosed with bipolar and Fear of Harm. Just to know you’re not alone helps you not lose hope.
My dream is for more doctors and therapists to know and understand this life-changing disorder. We finally feel like we understand what my son is struggling with. My hope is someday soon Fear of Harm is added to the DSM so that more children out there suffering from this disease, and their families, can finally get the help they need.