Our son Jayden is observant, caring, and funny. He has an above-average IQ. He is kind, a good sport, big on understanding the rules, and a creative problem-solver. He is very sensitive to schedule changes, sound, touch, smell, taste, weather changes, and the emotions of those around him. Really. As in, he is a barometer of all things. And he has always hated to go to bed.
Increasingly, these worries and sensitivities became intolerances. These intolerances caused deep fear. For Jayden, fear triggers a fight response. As a toddler, his dad and I started privately calling him Hulk Baby because if we -the parents -became frustrated, he got mad. If we got mad, he would go into a full rage. Without understanding why, we created elaborate strategies for keeping him calm: avoiding noisy restaurants, keeping consistent schedules, being very clear about future plans, and creating elaborate soothing night-time routines. We could not do many activities with friends and their neuro-typical kids. And they wondered why we seemed so uptight. We couldn’t explain it if we tried.
Eventually, Jayden couldn’t handle any variations. Everything had to be understood beforehand. If I served a dinner that he didn’t expect there would be overturned furniture, slammed doors and a refusal to eat. School was inexplicably difficult for him. He never wanted to go. If there was a substitute teacher it would take hours to get him into the car and then into the building. Going to bed became a minefield if not a battle.
We didn’t realize that his nightmares from an overheated brain were so terrible and vivid that his mind accepted them as real. He typically couldn’t wake during these dreams and if he did, couldn’t move his body as they continued as hallucinations. He relived these during the day. Being told to sit still and listen at school created the perfect setting for these thoughts to flood him. A third grader can’t describe severe perpetuating PTSD. We were sending him to school where he was hallucinating the gory scenes of our deaths. He was bullied by other students who recognized something different about him. Increasingly, he perceived his days at school as torture.
In 2019 we were fortunate to have an adult with bipolar disorder tell us that he was like Jayden when he was young. We spoke with Jayden’s therapist, and she suggested we read The Bipolar Child by Dr. Demetri Papolos. We found our son described in the pages of that book. That author became his psychiatrist and in 2020, just before the pandemic, he was diagnosed with Thermoregulatory: Fear of Harm (FOH)*, Juvenile Bipolar Disorder, and dysgraphia.
Before the diagnosis Jayden increasingly struggled to perform and then even attend regular school. The pandemic coincided with age 8 and the full onset of his mood disorder and the collapse of his confidence as a student. Ages 8 and 9 were a blur. He started referring to his emotions as separate entities. He was incredibly volatile and violent. He had two or three severe rages a day that might go on for hours. He broke doors, furniture, TV’s, remotes, computers. He destroyed all the furniture in his room. For a time, he only had a mattress on the floor.
We received the diagnosis in the middle of these crisis years. As we worked to stabilize Jayden, we became acquainted with Elizabeth Errico and the support system she has developed for families like us. It changed our world to meet weekly with parents struggling with the same issues. I was on the frontline trying to figure out what our boy needed. It was hard for my husband to come to grips with it. Again, having a support group talk about their struggles and successes with the exact issues we were having helped him “own” our situation. Elizabeth and the group meetings gave us both hope.
For 4th grade, Jayden attended the small public school where his aunt teaches. By then, we were starting to understand why he spent the day struggling, but we continued to make him go. His father and I hoped an IEP would get him into a therapeutic school. So, we spent the entire year trying to explain and codify his needs into a document with overworked school system employees who thought we were coddling our child. Elizabeth came to some of our meetings and was incredible. She represented the reality that Jayden had medical symptoms and not behavioral problems. Elizabeth and Children’s Mental Health Resource Center were essential in helping the school team understand that the combination of biological conditions our son has to carry is not his choice!
With the help of CMHRC and his physicians, Jayden is stable, and we are on the cutting edge of treatment for his disorders. Now at 11 years old, our son homeschools with a scholarship secured through his IEP. He actively participates in his treatment, helping us understand what he needs. He trusts that his parents are focused on his best interests. As a result, he is more confident. In this ongoing journey, our family is constantly learning and doing better. CMHRC gives us the support we need to feel less alone and afraid.
*Currently researchers refer to Fear of Harm as “Thermoregulatory Sleep Dysregulation Disorder”