Journal 5, part 2

5/2/1991

I’m only going to eat one meal a day or else I will be sick. When I was younger this worked all of the time until I felt better..

It is true that sometimes the needs of the ‘normal’ kids get swept under the rug when there is a special needs child in the house.

I know now that I have been a lifelong sufferer of GERD. I didn’t know this as a child. All I knew was that I had stomachaches all of the time. When it was really bad sometimes eating made me feel sick. I felt like I had a fire in my chest. Eventually the acid crept into my throat, gave me frequent canker sores in my mouth, and wore down the enamel on my teeth as a child. My parents threatened to take me to the doctor if I didn’t eat, but they never did.

My brother Matt also has GERD which was made worse by his gagging from Tourette’s. He frequently threw up his breakfasts. There was a time that the valve completely closed between his stomach and intestines. He couldn’t keep down any food and had to have the valve surgically opened again. In the meantime, he dipped below 90 lbs and he almost died.

Whose needs were more important??

Not only did Matt suffer from GERD, he also has autism. He engaged in a lot of self-stimulating repetitive behaviors such as rocking and flapping his hands together. At one time he had to wear a helmet on his head because when he became agitated he would hit his head with his fist. He was hypersensitive to touch. He would scream when he had to have his teeth brushed. He had to be sedated to go to the dentist for cleanings. He would only tolerate having 1/4 of his teeth cleaned at a time and eventually his teeth rotted. He has difficulty communicating and understanding emotions.

He suffers from Tourette’s. He would gag when eating and constantly make sticky saliva sounds with his mouth. His body would twitch and he repeatedly blinked his eyes.

He suffers from schizophrenia. He hears voices that tell him to hurt little girls. Sometimes the voices terrified him. He had nightmares. He would talk to the voices and laugh at the evil things they would tell him to do.

He is intellectually impaired. He cannot read, write, or do simple math.

He has issues with anxiety.

Matt made anything that my brothers and I struggled with minor in comparison.

There was a 3 year period when Matt was not allowed to go to school because of his violence. After that time period, he had very limited exposure to the outside world up until he was placed on an anti-psychotic medicine that eliminated the voices and the violence towards self and others.

My mother did not want my brother institutionalized in a place for the violently mentally ill so she pulled him out of most situations where he could hurt others. That did not stop him from being violent towards me at home. He grabbed a knife and threatened to cut my eyes out. He punched, scratched, kicked, bit, and pulled my hair on a regular basis. Who protected me?? Who reported his violence against me? No one.

I want to say that I handled it like a trooper, but I did not.

I withdrew into myself. I became very depressed. Although childhood goes by fast, it seems to take forever when you are being abused. I wanted out. I cried myself to sleep at night. I woke up crying in the morning after being awoken by nightmares.

I held my body tight like I was always bracing for impact. I cowered like a dog that was beat too much. My shoulders were held tightly up to my ears. I suffered from insomnia. I fell asleep easily but was typically awake from 2 to 4 AM. In the middle of the night, I suffered from muscle pains. I had to wrap pillows and blankets around my legs. I think my muscles were finally trying to relax in the middle of the night and it hurt.

I suffered from anxiety and worry. I was angry. I developed structure, rituals, and routines to feel like I had some control over my environment. For awhile, I was a compulsive hand washer. I washed my hands so often that they cracked and bled.

With everything going on at home, I couldn’t concentrate at school. My grades were horrible. I was put on a high dose of ADD medicine. It helped me focus, but made my skin crawl. I scratched my skin until it bled, especially on my scalp. I scratched until I pulled out scabs with big clumps of hair.

I was exhausted most of the time.

I was a mess.

That was a long time ago.

I survived.

I am strong now.

I am healing.

I feel ready to fight my demons.

 

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