January 2nd, 2018

During the last day of 2017 and the first day of 2018, Robert had many bouts of screaming. Although they didn’t last long,  a couple of minute each, they were sharp and very loud.  They were the mixture of maddening pain and unspecified anger.  I had an impression that the pain was attacking Robert from inside making him disoriented and panicky.  He might also be mad at us for not helping him.  But we didn’t know how. He had similar reactions before usually related to either stomach pain or asthma.  We kept giving him inhalers and Metamucil crackers.  Those screams subsided for part of the day only to returned a few hours later.  The series of shouts usually happens during the span of one or two days and then they disappear for couple weeks.

There is nothing we can do besides offering possible medications based on our guesses and the previous history of dealing with similar situations.. When we try to comfort Robert he is even more mad and loud.  The most screams come just after Robert awakes  and when he goes to the bathroom.  When in the bathroom, Robert screams not only louder and more frequently but also intersperses his screams with whiny inarticulate mumbles.

Although tomorrow (today really, as it is past midnight) I am going to schedule doctor’s appointment, I am not sure Robert gets any relief.  Too often doctors use the diagnosis of autism not as a challenge to diagnose better but as an excuse to do less and explain the behavior through the diagnosis of autism. Well, the diagnosis only explains the lack of ability to describe the pain, but not the pain itself.  Will I be able to convince the physician of that fact?

January 3rd, 2018

Just a few minutes after midnight. Much better day today.  Robert mumbled a little when in the bathroom but only because I tried to hurry him up to make sure we wouldn’t be late for the medical appointment. The doctor made a few adjustments to medications.  Robert was clearly happy to be in the center of attention and complied with all the  directions coming from the nurse and the doctor.  He was wonderful all day.  We didn’t study too much. Three pages of speech pronunciation.  One page to practice order of mathematical operations,  Some problems were rather complicated. Finally, three pages of language exercises. One he completed all by himself.  Over all, Robert was in really good mood.  A few times he massaged his feet with the help of a machine usually turning also the heat.  He giggled partially because it tickled and partially because he considered it to be funny.  And in a way, it was.

January 23, 2018

We had all very challenging weekend.  It started on Friday morning. when Pam came and it was time for Robert to put on his shoes and jacket, he somehow couldn’t focus on that.  He was moving around,  He wanted to go, but something was distracting him.  It took more than 20 minutes before he finally got ready to leave.  In the evening he started screaming. Something bothered him.  Maybe that was marinara sauce I used for eggplant I made for Jan and myself.  For Robert I use tomato sauce with egg and flour. Maybe it was after all acid reducer.  It was supposed to help him.  But I have a vague recollection from the past, that there was something in it that made Robert very uncomfortable and that is why the doctor switch to Omeprezole.

On Saturday and Sunday Robert screamed a few times but for longer time and it was horrid.  He didn’t have appetite, eating the same hamburger the whole day.  He threw up at least once.  He was holding his breath. I think it was the first time I broke into uncontrolable cry which scared Robert even more.  I didn’t know what to do.  Going to emergency where we would have to wait for doctors who wouldn’t not have any idea what to do and wait and wait when Robert was in such distress it would make harder for Robert and very hard for us.  Still, I called the nurse on duty and she advised me Mylanta and Toms.  I went to the store and bought them.  After  I gave him one pill of Tums and he seemed better, but after teaspoon of mylanta, he screamed again.  the doctor on Monday was eager to suggest psychiatric drugs to calm Robert and therapy. This attitude depressed me again because it demonstrates that people with disabilities who cannot talk have much harder time getting proper medical care than people who do talk.  Instead of getting more thorough, the medical professionals find easy way out relieving them of any effort to find diagnosis.  Yesterday, I kept giving Robert only potatoes with cheese from microwave and white bread with butter.  Later he ate a little of arugula, my husband gave him and a peach jello, he asked for.  After three days of total discomfort, yesterday Robert was calm and pleasant.  we did blood test without any issues and at his request, we went for a walk in an empty and foggy Bird Park..