Journal 5, part 1

12-10-1990

Tonight is my choir concert. For awhile my mom wasn’t going to go because Matt was reacting. But she is going to go.

Events were always difficult for my family. My mom always wanted Matt to be included in all of the family activities. We never really wanted him to attend our special days. We were afraid that if he hurt someone that would mar the day forever in our memory. Plus we wanted some time when we could be the focus.

How would we feel if a special day was ruined by Matt attacking someone? It would make for an unforgettable choir concert, graduation, or wedding day.

My parents typically took turns attending events if Matt was unable to go. My dad would often times stay home with Matt because he hated social events.

But if Matt was ‘reacting’ bad enough, my mom would stay behind. She didn’t trust anyone else to take care of Matt. If Matt hurt someone, he could sometimes be hurt in the process of restraining him.

For example, if Matt was at the roller rink and attacked a small girl…what do you think her father would do? My mother said that no one could love Matt like she did.

Usually there were early warning signs of reacting that we became hyper vigilant for.. His ears would turn red, his fists and teeth would clench, and his pupils would constrict giving him wild eyes. Sometimes these reactions would last for a short time and sometimes for several days. Sometimes it would happen unexpectedly and sometimes we just knew..

The longest it usually lasted was 2 days until it slowly faded away. For 2 days, Matt would scream and be agitated in general. He would often hurt himself or those around him. He would keep our younger brothers, that he shared a room with, awake at night by rocking his body side to side in his bed violently. During the day, he would run in place flapping his hands together sometimes violently enough to make his chin bleed after his hands rubbed against it repetitively.

He had to be watched constantly because sometimes he would run away. Or he would do deviant things like overflow the sinks. Most of the time he muttered to himself. He would laugh after hurting someone or doing something wrong.

After the reaction was over, Matt would sleep all day and all night.

My mom went to great lengths to try to explain Matt’s strange behavior by saying that he was reacting, or allergic to things.

Matt attacked the stranger in the roller rink because the music was too loud.

Matt attacked the girl because she was wearing perfume. The perfume triggered it. We were no longer allowed to wear or have anything with a fragrance in it. No hair spray, no nail polish, unscented soaps…we even had to dip our toothbrushes in peroxide and baking soda to brush them. I found this to be very restrictive when most girls my age used a bottle of hairspray a week.

Sometimes it was auto exhaust. My mom no longer allowed the cars to be parked in the garage. They had to be parked at the bottom of the driveway. If the wind was blowing in a certain direction, we had to shut all of the windows. My mom would panic if we had to follow another vehicle closely on the road, the exhaust could seep in and set Matt off.

Maybe it was gluten, dairy, and artificial colors. My mom started buying Matt organic food. She went to great lengths to make separate meals for Matt that no one was allowed to eat.

Maybe it was the wood stove. That furnace was removed.

Maybe it was the formaldehyde in the curtains. They were removed and old blankets were put up.

I could probably list at least 50 or more things that at one time my mom thought were triggers. We had to painstakingly follow rituals to try to stop the triggers from eliciting a response in Matt, but it never worked.

My mom took Matt to almost every doctor in the state and to several doctors in other states. She had faith that he could be healed from this affliction. As a child, I believed that he could be healed too. We hung on to every hope that he would be completely healed.

My mom took Matt to physicians, homeopathic healers, allergists, and even a lady that read auras. But nothing worked.

I fear that what I am telling you makes my mother sound like she was completely crazy. But I want to assure you that my mother was the sanest person in the house. In her natural state she is an easy going…go with the flow kind of person…She is very compassionate, sensitive, and loving…But with Matt, my mother was fierce and determined to do anything she needed to do to protect him…to feel like she had an iota of control over something that no one had any control over… and to seek answers while holding on to this irrational dream that some day she would wake up and he would be normal.

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