Every minute of every day was a struggle for my son. Noises drove him wild. Changes in temperature set him off. Clothes were torturous for him. He was constantly on edge. He was a walking time bomb.
Sometimes, we could predict things that would be difficult for him. Other times, his fits would surprise us and have no rhyme or reason that we could tell.
If he was happy, he was standing on his head, spinning in circles, or crashing full-force into people, furniture, or walls. He was delightful. He was funny.
If he was unhappy or overstimulated, then anything resembling normal life went out the window and the whole family had to focus on helping him find his right self again. Often, we had to just hunker down and take cover until he found his peace again. It was amazing that someone so small could cause so much damage to a room and physical harm to a grown up.
The one saving grace was that he could maintain control mostly when he was at school or church. He was nearly always delightful in those settings. He was obedient. He excelled above what he should’ve been able to do.
But, literally, the moment he got in the van to head home, he would crumble in a heap of crazy limbs and emotional melt-downs. He would strip off his clothes and sometimes cry and scream as though he were being beaten. He would writhe with pain and torture as though he were lying in a bed of fire ants. He would “debrief” and react to everything he had experienced that day.
At the end of the fit, he would sometimes fall asleep. Or just lie still in a trance of emptiness and exhaustion, fearful to move or breathe.
This was his experience every school day. This was his experience every time we went to church. This was his experience until he was about 10 years old.
And we were thankful. We were grateful that no one knew what we knew. No one saw what we saw or had to endure what we had to. We were thankful that his dignity was preserved and that his teachers found him delightful. We were grateful that it was only inside the 4 walls of our house that my son expressed the “torture” he was experiencing. It enabled him to survive in life. It enabled him to excel in school.
Do you love someone with mental illness? Know you are not alone. Some of us are just hiding in our own homes until the storm passes. We are taking cover. We are bandaging our wounds. We are here.
Information and resource information is available for you in the Mental Health for Children section.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.