April 6, 2015

Today, I read a story in New York Times, Letting My Autistic Son Go Where the Wild Things Are by Linda Davis. I don’t think I have any opinion about the article. I don’t even know what to think about the ideas behind.   Experiences, thoughts, and interpretations of lives of people with autism are, I believe,  impossible to be translated from one life to another.

The title, however, reminded me of one of the most piercing images I have of my son.

Robert was three or four years old. But small for his age, he looked like two years old toddler.  It was a cold and windy autumn day.  Or maybe it was winter already as maples and oaks  managed to lose all their leaves. If I am not sure, it is because there was no snow on the ground.  Very few people were walking in Blue Hill State Park  that day.  At least not on the same trail we followed.

Little Robert got maybe 100-150 feet ahead of us .  He didn’t run, but walked  quickly and with a great determination as if he were pulled by some invisible magnet. I called him to stop, but at that time he didn’t react to his name or to the “stop” request.  As he walked, he made sounds.  He didn’t scream. He didn’t cry. He didn’t whine. He didn’t hum. The sounds were long, as if he were singing.  But he didn’t singing.  I could say that he was howling but  with the menace of the gusts of wind tempered by the softness and sadness of birds’ cooing.

It seemed that Robert was trying to dissolve himself in this cold autumn/winter day. He heard the call of the wild and echoed it.

He was leaving us behind as if we didn’t matter any more. As if we didn’t exist. He was going into the landscape carved by melancholy ready to be swallowed by it.  He was three or four years old. He was determined, he was lonely, and he let us know.

Amanda and I rushed toward Robert.  Amanda, five or six at that time, had to be as shaken by Robert’s sounds as I was. Except, she was much more sensitive and much less inhibited. She knew that the only way to break the sadness and loneliness of that moment was to join Robert in his howling and or cooing.  So she tried. She tried to imitate Robert’s sounds.  Of course she couldn’t.  Her sounds were the sounds the people make when they try to imitate strange sounds. Robert’s sounds were organic sounds of nature itself.  So she couldn’t imitate them but  she ran to Robert and continued with her attempts.  She didn’t mock him.  No, not at all. She wanted to join him so he wouldn’t have seemed so terribly withdrawn and lonely.

Amanda and I took Robert’s hands.  He looked at us as if our presence startled him but he he didn’t pull his hands out of our grasps but with serious expression on his face walked with us back to the car.

March 31, 2015

From time to time, I go back to the shelf where I keep those workbooks Robert and I had already completed a month, a year, or a few years before.  Luckily, their pages are still untouched by Robert’s pencil, as I usually make copies of new materials not sure how easy or difficult the problems presented in workbooks might be for Robert.  The first encounter with the worksheet is always on trial and error basis for both of us. Although we worked diligently many concepts slip through our minds.  I said ours for a reason.  On one hand, Robert doesn’t appropriate new terms during that first encounter, on the other hand, I neglect to practice them out of the teaching table.

Enriching the vocabulary

It is crucial to use new words all across the settings wherever and whenever appropriate. That is the way to bring new words into a fold of one’s personal experience and to let them be assimilated and understood in different contexts. It is crucial, but too often, I don’t do that.  I am just forgetting the words I introduced to Robert  in the table settings, and he forgets them too.  That is why, a month or a year later, we go back to the old workbooks to refresh our memory and relearn the concepts.

I use workbooks, because I would not know which words Robert should know.  That is not exactly precise statement.  I know that Robert needs as many fundamental, basic words as possible.  I just don’t know what those words are.  If there were any workbooks on the kindergarten – second grade level left I would buy them all because I assume that they contain the most often use words.  In the past I used 2 different workbooks for grade 1 and 2.  Now, with some doubts as to the immediate usefulness, I am working with vocabulary words on the third grade level.

It is a second time around Robert and I do the same pages.  this time however, I am choosing words to practice with Robert also out of the table.

1. When we go visit his aunt and grandmother we will practice HOST and GUEST. When friend stops over, I will remind Robert to be a good host and bring cookies to the table or a glass of water or juice.

2. When we go to Audubon park, we will be waiting for arrival of CYGNETS

3.As Robert’s physical exam approaches, we will check in the calendar when is Robert’s next ANNUAL check-up.

One might ask, the matter I am asking myself, “what is the point of enriching the vocabulary of a young man, whose independent speech production is on a level of 3-4 years old toddler. what is the point of immersing such person in the ocean of new words?

And the answer is: Because Robert  can express very little. Since his speech is difficult to come out and carry to another person, it is imperative that he understands most of his surroundings.  He cannot ask for clarification, explanation by himself.  Asking is even more difficult.  That is why he should know language context.  Knowing names of things and actions is to understand better those things and those actions.

Sounds

I also brought back Speech Improvement Reproducible Masters.  A couple of years ago we did all the exercises.  At that time, I believed that Robert’s biggest problem with speech production was not extending long vowels, squeezing syllables into one unrecognizable sound.  Now, I noticed that he also has problems with clarity of his consonants. Again, I wish it was a trained speech pathologist who would work with Robert, but since there are nowhere to be found, I am working with Robert on practicing the same sounds we had practiced years ago.

March 29, 2015

Every evening, Robert reminds me, “Notebook, notebook.”  He takes the notebook from the drawer and brings it to the dining room table. He looks at me expectantly, waiting for the first prompt. If the prompt doesn’t come, he begins on his own, “I went to”, he hesitates and then adds what is appropriate for the day, Mac Donald, swimming pool, grocery store, bowling alley, walk.  It is harder on those days when Robert just stayed home.  The phrase, “I went to” hangs in the air.  Robert looks at me for help.  “Cross it” ,I tell him and suggest the word “ate”.  Robert gets back on track. “I ate”, he writes, “chicken (or poblano, or potato and cheese) for dinner”. Then he adds, “I did laundry” ,”I watched Netflix”, “I read”, or “I studied with mother”.  If the worksheets are still on the table, I point to some of them to elicit more specific answer, “I learned about tornadoes” (or digestive system, or magnets…)

This evening, Robert wrote about his trip to Vermont.  He informed his job coaches at his day program, that he stayed in Hampton Inn, skied at Killington Mountain, ate at the lodge and at the UNO restaurant.  He was able to add important to him details – swimming in the hotel’s pool, going up the mountain not on a ski lift but in a gondola, and stopping at the rest stop on the way there. I still help him by asking him questions, giving him two choices, suggesting the useful word.

Writing in his Notebook seems very important for Robert.  It is Robert who reminds me about this obligation.  If he forgets to do so in the evening, then he tells me, “Notebook, notebook” early in the morning before he even dresses up.

I believe that writing in the Notebook helps Robert relive his experiences and learn to express them for his own benefit and the benefit of the reader.

I cannot overestimate the importance of his writing – from learning some of the useful (repetitive) phrases, to putting events in order, to learning to communicate with others, to being able to analyze his actions.

I cannot overestimate that importance.  At the same time, I am acutely aware that one of the reasons why Robert is so keen on writing in his Notebook, is because his job coaches/instructors at his work, are reading them.  Their readings make all the difference for Robert.  He feels that what he is not able to say, but what he can write, has some significance and meaning to others. And that makes all the difference.

Sadly, that was not his previous experience.

The Past: Spring 2005

Robert joined a new collaborative program.  Everyday, Robert carried to school packets of worksheets he had completed at home with me.  I asked him to do that hoping that bringing worksheets to school would: 1. Let the teacher be more aware of Robert’s skills and deficits. 2. Increase the importance of home studying in Robert’s mind.

Well, I thought so. But, one morning, after dropping Robert in the classroom a few minutes before the first bell, I realized that I forgot to tell something to the teacher, so I returned.  As I opened the door I saw Robert throwing all of his home worksheets into a recycling wastebasket. Knowing Robert, I was sure, that he did what he saw his teacher doing every day.  He just wanted to spare her trouble, so he threw the papers away himself.

I learned a bitter lesson about parent-teacher cooperation then. My need to share was considered presumptuous interference into this teacher’s field of expertise.

In the following years, sending to school Robert’s worksheets or journal entries didn’t seem as meaningful to Robert or his teachers, as I hoped for.  But Robert, at my insistence, continued to do so. While some teachers responded positively, some just ignored Robert’s work, but never disposed of his papers the same way the teacher in the collaborative program did.

I don’t regret that.  Robert formed a habit of writing and now he, with the help of his job coaches and instructors, benefits from it.

March 16, 2015

Amanda, Robert’s sister, read all those books.  She read Rainbow Fish, Streganona, Amazing Grace, and many, many more.  She, of course, read Stellaluna.  She loved the book so much, that she bought it with her lunch money during one of the Scholastic Books sales at her elementary school. But when Amanda got older, other books filled the bookshelves in her room.  I felt she outgrew the picture books and thus I brought them all to Salvation Army store.

I felt, that those books were of no use to Robert.  He had, after all,  other books. The books which should provide concrete information about animals, plants, human body.  All of them written on a level of kindergarten – third grade student.  Robert also had many other workbooks that were supposed to address deficits in his comprehension.  So they addressed one aspect of comprehension at a time: getting details,  answering WH question, finding main  topic, making inferences, and so on…They were called Comprehension Quickies, Close Reading, Addressing Specific Skills Series and so on… They all addressed some sort of deficits, I believe.  I used them a lot with Robert.  He didn’t enjoy them and I didn’t enjoy them either.  Moreover, they didn’t seem to improve Robert’s comprehension or my ability to teach reading comprehension.

Still, I believed they were right way to go, as they were short.  ‘Short’ was a synonym with easy and survivable. I believed, at that time, that Robert cannot listen to long stories.  I believed that Robert, despite his ability to decode the text, was not able to understand the plot. To make a matter worse, Robert didn’t want us to read to him, because he couldn’t listen. He would rather read himself then listen.  He would read, because when he was doing that, nobody expected him to listen at the same time.

I still remember how doubtful I felt, when I had to read to Robert (relatively) long stories from Reasoning and Writing Part A. I was sure, that he would not sit through.  And he didn’t.  He got up a few times during the first part of the story, and another few times the following day when I read to him the second part. But, I expected worse.  So, I continued, and Robert stopped getting up in the middle of my reading.

As we followed with reading stories from Reasoning and Writing, Robert learned to listened and I learned to read to him.  I learned to stop, add a comment, ask a question, repeat a sentence, pretend to explain it to myself,  and so on.  Nothing special.

Then, I looked through The Power of Retelling and realized how much Robert could learned through proper reading instruction. How much his vocabulary would improve, his ability to connect concepts in the way that would weave a path to better understanding of his  life.  But I wasn’t trained Reading Instructor, so I couldn’t transform general idea into a practical instruction. Luckily, someone on one of the parents’ internet list advised The Magic of Stories.

The Magic of Stories, brought me back to Rainbow Fish, Streganona, and Stellaluna.
From  The Magic of Stories,  I learned how to prepare for reading, how to read, and how to place the book in the context of readers experiences, abilities, challenges.  How to make more probable, that the reader  is not just capable of answering WH questions but that his language and his life is clearly enriched by the stories.

So, I got Stellaluna from our library.  No, I didn’t make any preparation for reading.  I didn’t follow any of the advises from Magic of Stories.   They are great and I will use the ideas behind them in the future. But this time, I was just curious how Robert would like this book as we alternate reading it, looking at the pictures, predicting what might happened and trying to figure out  some of the  confusing statements.

I had the feeling that Robert loved the book. He was relaxed, calm, and smiled with his eyes.

Later that evening, I called my daughter to tell her that Robert liked Stellaluna. “Oh, I adored that book”, said Amanda.

Sadly, I realized that I was feeding Robert with many  texts created specifically to address comprehension deficiency, but I have never read him stories that would match his humanity.  Moreover, I also realized that had I ever fed such educational  texts to my daughter as I fed them to my son, she would have lost her love of reading before finishing second or third grade.

Mine is a foolery of replacing wonderful children’s literature with soulless texts in the name of teaching.

Well, Robert is 23 years old, but he doesn’t mind reading Stellaluna again. Neither do I.

March 5, 2015

Today, Robert  had difficulties drawing ocean animals. Copying slanted lines and curved lines going in different directions seemed to be very confusing to Robert. So, I went  back to Write from the Start by Ion Teodorescu and Lois M. Addy. I looked through the exercises in both parts of that curriculum with emphasis on those which would help with drawing. ( I couldn’t help but wonder to what degree those exercises helped Robert with writing cursive letters, in the past) Still, this time I looked for something else.  I looked for ideas that would helped Robert to draw curved backs of dolphins, wavy shapes of seahorses, and sharp endings of  curves representing bodies of different fish.

I thought that the closest match to what Robert needed to relatively successfully complete his ocean picture was to practice drawing circles inside and outside triangles and squares.  I expanded on that ideas with exercises that demanded that Robert draw ovals inside and outside rectangles.

Another good suggestion taken from the book was to draw sinusoid (wave) but going down vertically (With horizontal waves Robert didn’t have as many problems.) By spacing either points or different length line segments I prepared pages for Robert to draw waves (sinusoids) of different frequency and amplitudes.  Later, Robert was presented with tasks of drawing such shapes along slanted lines.

The exercises seemed easy.  Although mathematician would have a problem with Robert rendering of those shapes, they clearly demonstrated Robert’s understanding of concepts.

After all those exercises, I asked Robert to copy the drawing of the dolphin. This time I stopped myself from any “helpful” interference and let Robert worked out on his own all the curves and angles.  And he did.

March 3, 2015

One of the staple in teaching reading comprehension is the emphasis on comparing and contrasting specific elements of the text. Most often two characters are subjected to this treatment.  How are they alike?  How are they different?

In the past,  I used “Compare and Contrast” chart with Robert to compare  two simple objects: an apple and an orange, the fish and a turtle, or a stove and a refrigerator. I have never, however, used such chart in connection with a read text.

Today, Robert read a text, two pages long, which  compared alligators and crocodiles. It seemed very well suited, almost self-explanatory, to be used with Compare and Contrast Chart.

I gave Robert three highlighters of different colors.  The green one should be used with the information that related to both reptiles.  The yellow one was assigned to alligators and the pink one to crocodiles. After reading each sentence, Robert was to decide which color had to be used.  Robert was not used to stopping after every sentence and tried to accelerate the process by often taking what was in the closest proximity of his hand.  Slowing him down was the most difficult part.  I covered the highlighters with my hand and asked, ” Did you read about alligators, crocodiles, or both?”

Well, when the sentence was about both kinds of reptiles, Robert didn’t know what to answer.  Clearly the concept of “both” in this context seemed not fully developed yet.  As I was working with Robert, I realized that it would make much more sense to use two highlighters – for instance blue and yellow for such sentences.  That would add the third color –  green to the mixture and might result in better understanding of the concept of “both”  But, of course, I couldn’t make changes in the middle of the task and confuse Robert even more.   Luckily coloring the sentences that informed about only one of the reptiles wasn’t difficult for Robert.  When the sentence informed about both, I led Robert through the procedure.

Later, Robert use this color coding to fill the Compare and Contrast Chart.

I am not really sure what he understood about the whole process.  I think, I will write a couple of simple texts that would give him opportunity for more practice.  I think I might even introduce two people – young and old, tall and short, happy and angry.  After all, comparing and contrasting could be most valuable if it helped Robert find a tool to understand others.

February 25, 2015

When Robert is not feeling good, I usually change the format of our sessions to just doing simple puzzles,  arithmetic operations, map reading as planned by Daily Geography, and a few easy speech exercises.  (For instance,  asking questions based on pictures from No Glamour Asking wh Questions). It is not the time to work on reading comprehension or learning new science concepts. The work is mostly mechanical, easy to complete and doesn’t take much time. Of course, when Robert is very sick, I just let him sleep or watch his IPAD.

When I am sick, it is almost the same.  I prepare worksheets that Robert can complete with minimal help or with no help at all.  It is mostly because when I am sick, it is much harder for me to find a way to present something new, understand nature of Robert’s possible errors, and find a way to address them. We don’t do any language related exercises as I don’t want to breathe my germs on Robert.

I have been sick with cold or flu or whatever else that might be since Saturday.

On Saturday, I found myself completely unable to teach Robert anything.  When I got up of bed to make myself ginger tea and get an aspirin, I found the kitchen floor covered with breadcrumbs. It has been our custom to sweep the floor together.  I used the broom and Robert followed with dustpan and dust brush. Coordinating legs and arms movements necessary to do sweeping was  difficult for him. At least I have always thought so. But this Saturday, I was desperate so I asked Robert to sweep the kitchen floor. At first, he was slightly surprised, but then he took a broom with one hand and began sweeping. “Use both hands”, I said as I sat down to drink my tea. Robert did. When he kept the broom in two hands he was also better adjusting his whole body. It seemed that the problems with gross motor coordination almost disappeared.  Yes, Robert was not a very good sweeper. He missed a few places.  However, the coordination was not the culprit.  Lack of practice was.  When Robert took out dustpan to finish his cleaning, I returned to my bed asking myself why in the last ten or so years I had been convinced that Robert was incapable of sweeping.  Why did I assume that the fact that Robert was not able to do something 10 years ago meant that he was incapable of ever learning how to do it.

All my experiences with teaching Robert kept proving that Robert can learn if he is taught properly. So why did I give up on teaching sweeping?

Why did I have to be sick  and  break our teaching routines to gain a better insight into Robert’s abilities and into mine blind spots.

February 12, 2015

Robert went to the dentist this morning. The visit was long overdue as the last one happened more than 3 years ago. As he turned 19, he seemed to outgrew pediatric dentistry practice.  Except that I wasn’t ready for the move.  I was afraid that the adult doctor might not have much experience with special needs population.  After all, so many of my friends’ children kept having all dental services under full anesthesia. I though that Robert’s dentists and we, the parents, worked very hard to make sure Robert tolerates all dental procedures including extraction (of baby teeth) and fillings.

The first visits went with just little bumps.  Robert tolerated cleaning rather well.  But then came extractions. Since there was an infection around the tooth (based on a bump on the gum), the shot with anesthetic didn’t do its job. Robert had to be in a lot of pain.  So, when the need for another extraction came about, Robert protested vehemently and was very successful in hiding under his dad’s jacket and/or wiggling out of anybody’s hold. That was when the dentist suggested full anesthesia.  I thought, we should try again.  We found another dentist, almost 30 miles farther away but with a lot of experience with special needs population. He noticed the bump and proscribed antibiotic before scheduling extraction. My husband and I came with Robert.  Robert was anxious and tried to wiggle out of the dental chair. When, however, the shot came he kept still, instinctively knowing not to make anything worse. The extraction wasn’t short, as the tooth squeezed between two growing new ones broke. So it took a little longer for the dentist to get everything out. Not much longer, but still more than just pulling the tooth out. Robert was patient.  Sometimes, he raised his head more to check what was going on then to escape. But then Jan and I were on both sides of Robert holding his arms so there was no point of attempting to wiggle out of the situation. After that visit, others went much easier. The matter of fact, each visit was easier. I could go to the dentist without Jan.  I held Robert’s hands more for emotional support than as a way of restraining him.

Maybe it helped that with the dentist’s approval we could take pictures of the tools and the whole procedures.  The pictures, when I look at them now, seem rather gross, but they provided a lot of needed information for Robert.

We liked this dentist a lot.  Still, when I noticed that Robert tolerates all the procedures pretty well, I decided to return to the old practice.  It was not just because of the distance, I wanted Robert to get used to different dentists and different dentists get used to Robert.

When Robert was 13 years old, the X-ray showed that one of the tooth is growing sideways, pushing on the root of another tooth. There were two options – to take out the tooth or to put braces on the upper teeth.  We chose braces.  Surprisingly, Robert tolerated the terrible molding substance in his mouth beautifully.  That shouldn’t be a surprise. The years of pica, putting inedible objects in his mouth, brought unexpected benefits. Robert didn’t mind this molding substance in his mouth.  After all, it felt like silly putty or play dough – two things his mouth was well acquainted with. it took many visits, but the tooth came out as straight as it should.

As the time pass, the dental hygienists became more and more used to Robert.  As they did with typical children, they called Robert and asked me to stay in the waiting room.  I was called only later to talk to the dentist following the exam.

Yes, today, I stayed with Robert while he had his teeth cleaned and X-rays taken. But it was a completely new place with a new hygienist and a new dentist.  My presence was as much for their benefit as for Robert’s.

Before the appointment, I stated that Robert tends to close all opened drawers and cabinets even if that means getting out of the dental chair in the middle of any procedure. well, he didn’t get out of the chair, but pointed to the not completely  (quarter of inch was left of perfect alignment) closed drawer and kept repeating, “Close, close.”  When I closed the drawer, satisfied Robert put his head on a chair and let the hygienist finish her work.

By the way, no need for any tooth repairs. Next visit in six month.

I do think that the need for a lot of dental work to be done when Robert was younger might be a result of using too much sweets as reinforcers during ABA therapy. Later chips were introduced, but that led to stomach problems.

February 4-5, 2015

It is harder and harder for me to continue with this blog. It might be that since Robert goes to his Day Program every day and is 8 hours out of the house, I do have less opportunity to observe him and teach him.  It might be that the fact that he comes home happy every day, makes me feel less needed and thus less invested in teaching him and explaining his ways of perceiving the world. It might be that the recent times have been relatively hectic and thus I had less time to record our learning/teaching time together. It might be that I have forgotten the reasons I started this blog and became disconnected. Not exactly that.  Recently, our hours of studying together became haphazard.  It is not much continuity there.  But then, Robert’s learning was never a simple process of accumulating knowledge and skills. Mostly because, I didn’t know how to teach him. There were times when good advice from teachers and therapists could put me on track for period of time. Sadly, never for long. There were great curricula, that engaged both of us for a period of time, showing directions and offering some tools. But they were more like short segments or vectors than  a never ending geometric ray.  As soon as we hit a bump, we jumped from one approach to another.  Then, we tried again a year or two later.  So lately, we have not done anything radically different from what we had done before.

Robert stayed the whole week at home. There were snow days and sick days and again snow days.    Robert mostly slept and watched movies on his IPAD.  When he felt a little better he kept learning with me.  Surprisingly, he didn’t seem to mind one little bit.  Maybe because he considered his tasks to be easy and more reason to glow with pride than to struggle with understanding.

1. We returned to the old curricula: No Glamour Sentence Structure NO Glamour Question Structure. We completed them 4-5 years ago.  But this time it went much more smoothly. For each section Robert grasped a pattern of words from just one example and easily generated proper sentences.

2. We returned to Daily Geography Grade 4. Only a few stumbles there and they all were related to the sections I had omitted during the first approach.

3. We worked on reviewing operations on whole numbers, fractions, and decimals. I didn’t use the old Momentum Math program but instead I presented to Robert loose pages from the old edition of 6th grade Everyday Mathematics and a few other workbooks. Since Robert could very well subtract a mixed number from the whole number I went one step farther. I asked Robert to do all the operation in his mind without writing them on paper.  For instance: 6- 3 1/4= 5 4/4-3 1/4=2 3/4 (The numbers in bold are the whole numbers, the rest are fractions). I asked Robert not to write the middle part but keep it in his head or/and say it aloud. That went pretty well.

4.We went back to copying the same drawings, we did a couple of years ago.  Robert still struggled with oval shapes (too flat or too round) especially when the arches ended with a sharp corner. This time however, Robert after making two or three copies tried to draw the object from his memory.  He remembered most of the parts but those ovals didn’t come well.

5. We jumped to a higher level science workbooks and textbooks.  We both stumbled there.  I didn’t know how to introduce the concepts so we both struggled.  In the end, I just concentrate on the meaning of new words and not on the whole processes.

6. Cursive writing with an emphasis on a capital letters we neglected years ago.  I am still baffled by the fact, that Robert can copy even such letters like capital G but cannot copy a simple contour of a body of a fish (without fins or a tail).

7. We did a few History Pockets in the past. The last one, Ancient Civilizations,  Robert completed just before he joined his Day Program.  Since at that time, Robert was still at home, we had lots of time and could finish each of the six packet in one day. This week,  I hesitated with starting Colonial America.  It had difficult vocabulary and addressed events that Robert probably couldn’t grasp. So we worked slowly in three afternoons. Moreover, we didn’t follow instruction exactly and instead of a pocket we made a folder. I was very surprised when Robert decided to take the completed folder to his Day Program.  I was surprised because in the past, Robert has never wanted to take History Pockets to school.  I soon learned that it was his Case Manager/Instructor in the Day Program who read Robert’s note in which he mentioned that he was learning about 13 Colonies and who asked him about that. Robert, who hardly can explain anything with his own words felt obliged to bring the whole folder and show it to the Instructor. Moreover, not a week later, Robert rushed with next pocket about first settlements completing it in two days and again taking it again to his Day Program. He wanted to show off.

Showing Off!  Robert!!

It has never happened before.

Never.

For the first time in his life, Robert was not only proud of his work but also  wanted to share his accomplishment with those who appreciated it.

February 3, 2015

Last week, Robert was sick and said so. This is a huge, HUGE progress.

In the past, I had to deduce from Robert’s behavior if he was sick and what  could be hurting him. That was not easy, as Robert couldn’t locate the pain.  When I asked, “Does your stomach hurts.” He would say, “Yes”.  However, when I continued asking about lungs, throat, or head, Robert would have confirmed that each of these body parts was hurting as well.  I knew that he had to be sick when he lost appetite or when he didn’t want to go for a walk. ( He always wants to go for walks.) I knew that when he screamed it was because he was in a terrible pain.  The reason I knew that the pain had to be terrible was that Robert’s never complained when he scraped his knee or bumped into something.  I knew the pain was very bad, but I didn’t know what was hurting.  Robert couldn’t really help with the diagnosis. I assumed that for him the pain was like something attacking him from within his body and that drove him mad.  I still remember him jumping out of the bed in the middle of the night, screaming, and hitting his own head with the full force of both hands.  I tried to hug him in a way that would prevent him striking his head, he pushed me away.  No, he didn’t strike me, he wanted to hit HIS head not mine.

I still didn’t know what was hurting, but I know that it was NOT AUTISM that caused this behavior.  It was the pain and the lack of ability to communicate his pain to others. I usually assumed that it was either gases in his stomach, asthma, or headache and I gave Robert Metamucil crackers with water, Advil or Motrin, and Albuterol inhaler to address all three possibilities.

(Of course, there were times when Robert’s pain was caused by other things and it took a long time to find out what it exactly was.)

The fact that last week, Robert kept saying, “Doctor, doctor”, was of huge importance.  It was the first time, Robert not only let us know that he was sick, but wanted us to do something about it.

I suspect that locating the pain was still difficult to Robert, as he was answering, “Tongue, tongue” when asked what hurt.  His tongue seemed fine. But it was something in his mouth.  Anyway, we went to see a doctor.  Robert got an antibiotic and slept for a few hours. After he woke up, he asked for a doctor two more times, but without the tone of urgency so characteristic to the previous day. After good night sleep, although still relatively weak, Robert had to feel better judging by the fact that he interspersed sleeping with some eating.