Embarras Du Choix

January 29, 2018

Last Friday, Robert and I drove to Walmart for the sole purpose of buying a few packages of jello. The matter of fact we were  going to buy only pineapple jello, as that one is Robert’s favorite.  Maybe, just maybe, also watermelon flavor.  Currently, none of the grocery stores in the area has either of them on its shelves. When, however, we got to the proper section of Walmart, Robert became mesmerized by the sheer quantity of flavors.  Moreover, I told him that he could choose any 10 packages he fancies.

That was a problem because

  1.  We set out just to buy two flavors.
  2. We didn’t specified how many of these two flavors Robert expected to buy.
  3. There were many flavors advertised by enticing colors  and suddenly Robert had a zest for all of them.

Robert didn’t know what to do. He wanted to do what was, in his mind, appropriate.  He wanted to buy only pineapple and watermelon gelatin desserts. One of each. It took a lot of convincing on my part for Robert to take two of each kind.  But then he was still not leaving.  He kept taking packages out of shelves and  putting them back.  He held the lime one, then grape one, then blueberry one.  Just for a few seconds.  He was tempted to taste something different, but then he restrained himself to just his first choice.

People were coming, grabbing one item or two, and leaving.  Robert was still contemplating little boxes of Jellos while opposite forces were confusing him more and more.  It didn’t help that often, he showed me a package as if asking for permission. He always got it, but that didn’t help him make his mind.  It took at least 30minutes before the last barriers precluding him from choosing WHAT HE WANTED and not from WHAT HE BELIEVED WAS APPROPRIATE  were broken.  Robert got nine packages, dropped them in the shopping cart, and energetically aimed for cash register.

The flavor he chose: 3 pineapple, 2 watermelon, 1 grape, 1 blueberry, 1 lime, and 1 strawberry.

On Friday, Saturday, and Sunday he made, with my decreasing help,  three of them: blueberry, grape, and watermelon.  He has already made his mind for today.  Today he wants to taste lime.

I consider that experience important, as Robert has had difficult time with making choices.  He usually tries to guess what I (or any other person accompany him) wants him to choose. With a few exceptions of things we buy regularly, Robert doesn’t want to buy anything new. He seems to censure his own wishes before they even come to light. Choosing and buying 9 boxes of Jello was an important lesson and the one which cost less than $7.

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Playing the Teacher

January 23, 2018

 

A few days ago I pulled from the shelf another old workbook, Developing Receptive & Expressive Language Skills in Young Learners.  It was the first publication from “Great Ideas for Teaching. Inc” I bought almost 20 years ago  and the one I used more times than anything else. This time, however, I try to use the workbook to reverse roles.  Robert is the teacher, I am the student. But when Robert is the teacher, he doesn’t read questions/directions from the book.  He practices asking the same two or three questions with a few variations.  He points to the object and asks one of the questions:

“What is it?”

“What is it made of?”

“What is it used for?”

Sometimes there is a need to change “is” to “are” . Sometimes I suggests ( I write on a piece of paper which Robert reads before getting in the role of a teacher.) asking ” Where can you find it?” or something equally simple and almost obvious. Robert applies these questions to the three pictures on the page.  I answer them correctly and Robert has to say, “Good’.

Next, Robert gives me direction, “Touch ……” followed by the name of one of the three pictures.  This time I give him two correct answers and one wrong.  When I answer correctly he has to say, “Good Job”. When I made mistake, Robert has to say, “No”.

I don’t ask for more, as it is still a bit confusing for Robert to get a new perspective on language.  He is, however, very amused when he can say “Good Job”.  He heard it thousands times before and now he is in charge of dispensing praise.

I have to add that when I began this approach, I first wrote the three questions on the separate piece of paper and asked Robert to read them a few times just to memorize them in THIS context. I covered the questions and Robert followed with asking them while pointing to each of the objects.

I didn’t want Robert to just read the questions and directions from the workbook as that would not lead to more independence.  Memorizing the smaller number of questions or directions and then retrieving them from his memory/mind seems to be a more useful skill.

Screaming

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..