November 4, 2015

When Robert was in his third year of so called “Transition Program” I asked his speech therapist for notes from the therapy sessions. The only page I received was divided by horizontal and vertical lines with a few check-marks in some of the boxes.   None of the column, none of the rows had titles. There was not ONE word written on this page. Just lines and check-marks for something only therapist knew for what.

That event seemed to best express my opinion of the speech therapy provided to my son by most of the therapists. They might had known what they were doing, but nobody else did. And nobody else knew what effect if any the speech therapy had on my son.

They were, however, exceptions.

1. The first therapist sent to my home from Private School was able in first 15 minutes of her session to make Robert say the first word clearly, “pop” for popsicle. I was in awe for the ease with which she managed to achieve that. She just held a colorful tempting popsicle in her hand and lt Robert licked it every time he tried to say “pop”. she rewarded him for “p” and for “pa” and of course for “pop”.  Sadly, however, she was there only once to do short evaluation and give suggestions to the teacher.  After all, the school espoused so called, consultative model. The therapist came to asses Robert’s needs.  She gave suggestions to the teacher and never saw Robert again. In a few months, she found a better paying job in public schools. So the teacher was stuck with Robert knowing just one word – pop-.  For the next 3-5 months, she was practicing with Robert just this one word – every day, hundred times a day. It caused more damage than good and it made me a huge opponents of the consultative model.
2. One of the reason, I took Robert out of the very good (because, yes, it was good)  private school was to give Robert an opportunity to work directly with speech therapist. The best things about therapists in two different collaborative program (one for a whole year and one just for three summers ) was that they DID NOT give me blank paper with information.  They shared with me what they were doing in their respective classrooms. One of them gave me a lot of ideas to help Robert retrieve concepts from his own mind.  She showed me how to use words associations to increase the complexity of a language. The other one worked on Robert’s clarity of speech EVERY day Robert was in the summer program. And it made a difference, although a lot was lost when Robert returned to his regular program. The therapist in the Collaborative was also familiar with asisstive technology and showed me how to program and use one helpful device.  Sadly,Robert was asked to leave this program.  He took the device with him, but none of the three speech therapists he encountered in public school was willing to learn how to use it.  I made three copies of the manuals, I came to demonstrate how Robert could use the programs I designed for him, but I don’t believe anybody at school helped Robert to use this device there.  Robert kept taking the Dynavox to school every day and kept bringing it home. We used it at home until, the school asked to keep it only at school.  That didn’t make any sense, but since it was a school property I didn’t protest. Finally, the speech therapist got a training  from assistive technology specialist.  Unfortunately, from the whole day of demonstrating the only thing the speech therapist gained was how to use the device to help Robert write what he tried to say. He could do that with pen and paper, he could do that on his IPAD with $2 APPS.  Just before vacation the Dynavox was returned to me broken beyond repair.
3. The simplest and the most natural speech intervention was happening on Saturdays during 4 hour long program at Bridge Center.  The speech therapist was there not for therapy sessions, but to demonstrate how verbal tools could be used to work with others. How words could help with group projects – painting the fence, stitching the quilt, cooking, baking and setting the table for the Thanksgiving feast for parents. For Robert just following simple directions, for instance to find something in the top drawer, or on the bottom shelf, was a great language exercise.it was priceless to have Robert ask -even with one word- for something he needed to complete his activity.  It has to be said that this speech therapist was a VOLUNTEER. I suggested to use this model in Robert’s transition classroom. This has never happened. When other children were doing interesting project that would require listening, following directions, and efforts to communicate, Robert and two other boys (who also could greatly benefit from the project) were pulled out and tortured during artificial, senseless speech therapy.
4. Knowing that the school speech therapy was a little apprehensive of Robert, not being familiar with children with similar needs, I brought a few speech therapist’s workbooks I had been used with Robert. I was glad that the speech therapist accepted them.  It seemed that she started successful work with Robert. I was much less pleased, when almost 6 months later I found out that she was still doing the same exercises with Robert and another student.  That other student although very bright took a long time to answer.  Robert meantime was bored and anxious. With every session he was less and less cooperative and of course he was the one who was blamed for his impatience and lost interest. Meantime, at home we managed to work on a few other curricula – having to do with talking in sentences and asking questions.
5. The things that I found the most damaging to Robert was the fact that the speech therapists so easily and quickly could reject any new idea by simply stating, “He is not ready for this yet.”  The sad truth is, that they never were ready to explore new approaches.
6. The second thing that affected Robert’s speech negatively was the fact, that the therapist always tried to group children with completely different needs but similar level of severity together.  That is why, the speech therapy was a torture for everybody. Between the  utterance of one word by one student and another word by another student minutes passed.  The question had been forgotten. It was hard to observe and probably even harder to participate.  It had to be hard for the students and even harder for the speech pathologist.

But it could be as easy and as simple as cooking together, making a poster together or…singing a song.

A few weeks ago, we started singing together. At first, Robert was reluctant. He kept saying/singing only some of the words and protested, “No, no, no” every time I reached for another song.  Two songs per evening sufficed.

We started with Are You Sleeping and moved to other songs. Still, every other day we began with Are You Sleeping as that tune helps robert get on track.

Only recently, I realize how important is singing for Robert.  While singing, Robert is practicing spacing syllables, slowing down, and increasing the volume. He is being familiarized with the concept of rhythm and, to some degree, with  higher and lower tunes. He also begins to accentuate some of the notes improving the prosody of his scrambled, squeezed articulation. He often holds the toy phone next to his ear to hear himself better. I have the feeling that he is enjoying himself a lot specially since the day when dad joined us to sing along.

Today, we practiced, For He’s a Jolly Good Fellow, Jingle Bell, and Oh, Susanna.

It was such a pleasant family evening.

Still,  I had to wonder why  nobody in Robert’s school days had ever tried singing with Robert. Nobody but one pre-med student at Bridge Center during a few times he was there. He had an open mind and was actively looking for ways to enrich lives of children attending the program. He wasn’t doing that for long, however, as he got into medical school the following season.

I still feel some residual anger and sadness when I think about all lost opportunities.  Nonetheless, today Robert sang, “Oh, Su-sn-na, Oh, don’t you cry for me”  pretty clearly so no more venting or weeping.

October 13, 2015

The last few weeks have been pretty chaotic.  That means I was not able to make sense of hundreds of small and large events. Doubts, fears, and shaky hopes for Robert’s future resulted in litany of questions and only very few answers.

What am I doing wrong?

What are the things that might be most useful for Robert in the future?  Can I still teach them? Is it too late?

How to prepare Robert for being with other people?

What caused Robert to behave this way ?

Could I prepare Robert  to handle similar situation better?

Can I help him avoid falling in similar traps in the future?

How to teach Robert what is friendship?

How to find friends FOR HIM?

How to help HIM find friends?

How to help him make right decisions?

Questions and more questions. Confusion mixed with anxiety and guilt.

But then there are two evening hours of clarity. Two hours when Robert and I study together and everything seems to return to the right places. It is not about grasping concept of positive and negative numbers.  It is not about  classifying organs by their systems.  It is not about reading maps or stories. It is learning about each other that is the most important part of our daily lessons. When we study together I  know what Robert is thinking and he knows what is in my mind.  With Robert’s difficulties expressing himself, the daily study hour is the time when we are understanding each other best.

Still, the next morning all the questions return with the same intensity and the same urgency.

October 26, 2015

I tried to organize the posts on this blog.  I was overwhelmed by their number – 350+ and by the range of barely touched topics.  Although they are all about Robert, they hardly seem connected to each other.  Like sand they slip through my fingers. I feel unable to mold them into already established  forms or divide them among drawers of specific categories.

As I try to write about today, I face the same conundrum – writing about events based on the shapeless residues they leave.

As we walk together on the ocean beach, we leave our footprints on top of each others.  Other people leave footprints on top of ours and the waves even everything out leaving only vague memory of the shapes that were.

Memory of Thursday’s Evening.

Robert went with two of his friends and Bridget, his instructor, to the reward ceremony at the Food Pantry he volunteers once a week by carrying boxes of food from the pantry to the cars of the clients. I felt great and…terrified. It was something entirely new for Robert. I wasn’t sure how he would react, how he would tolerate this new situation.  So, we came to pick him up half an hour early. I couldn’t believe my eyes when I saw him sitting at the table and watching raffle with a calm, blissful smile on his face. As he got up and walked with us to the door, I asked him if he wanted to go home or stay.  “Stay, stay”, he said.  Then he noticed that his dad already left the building so he went after him. But he was not happy on the way home.  He made some partially cooing  partially growling noises. Maybe because he wanted to stay till the end. He felt important, rewarded and happy.  We took him out worrying too much.  But then, maybe he wasn’t feeling too good, after eating something he was not used to.  So maybe we were right to pick him up early. But then, maybe not….

Memory of Friday’s Evening

I drove Robert to House of Possibilities for Halloween Party. He went there a couple of time before but always with Pam.  I thought that I would stay with him but Christine, who was running the program stated that it was not necessary.  I could stay and observe or I could just come later to pick him up. I left.  I did some shopping and then came back and waited in my car. I heard a loud scream.  I rushed to the building afraid that Robert was screaming. He wasn’t.  He seemed perfectly content when he came to the door.  I was told, that after I left, he kept saying, “Mom, mom, mom” But after a while he became relaxed and partially participated, partially watched others.  Again, did I came too early not letting Robert becoming more integrated with the group?

Memory of Saturday’s Afternoon

I dropped Robert at Charles River for a four-hour program that included a trip to a restaurant and a farm.  He attended those programs four times before. So, I wasn’t too anxious. Besides, I couldn’t come early to pick him up, as the van was returning at 4 PM.  Well, my husband and I came 15 minutes earlier and walked around.  Robert seemed happy.  Laura, who was in charge of the outing, told me that in the restaurant, Robert noticed that his hamburger didn’t have cheese, so he asked rather loudly, “Cheese, cheese, cheese.”  He got his cheese.   At home, he was rather anxious with his OCD like behaviors spiking.  He wanted dad to have socks on his feet.  He wanted me to take my socks off.  He wanted other things as well for reasons he couldn’t articulate. It was difficult evening.  I wondered if faced with so many new places and activities, he wanted to bring the world under his control and keep everything in place. maybe he just wanted to be out with his peers again and his displeasure of being home was transformed into quest for power?

Memory of Sunday

In the morning, Robert went for his regular lesson of horseback riding. For most of the lesson he was in control of the horse. He was regaining his confidence.  Although, in the past he lead the horse by himself following directions of the trainer, at some point he felt more secure when the trainer or her assistant held the rope. I watched Robert steering the horse to the right and to the left between colorful cones. when the horse stopped, Robert  tried to move the horse by weak kick.  He had to repeat that a few times, before the horse felt it and moved on. On the way home we bought crispy chicken sandwich, his new favorite food, at McDonald.   Around 1PM we drove to the Carlson Orchards to pick Fuji apples. Robert seemed content and helped carrying the heavy bag of fruit. All the way home, he kept reminding me to make him eggplant with cheese and tomato sauce.  We only had a half of the aubergine, but that was not the problem for Robert. What he likes best it the sauce mixed with many herbs and an egg and improved by eggplant’s “seasoning”.  We studied together for an hour, then he took a bath and went to sleep but not before he emptied the dishwasher  by placing the dishes in all the right places. Well, the washing  cycle wasn’t really completed, but I didn’t tell Robert that.

One day events replace other days happenings. I still feel anxious not fully sure that  Robert is prepared for all the new situations.  I find, however, so many wonderful people taking upon themselves the responsibility of leading Robert through new places and new situations that my worries are subsiding replaced by hope.

October 7, 2015

The last ten days were quite eventful. It is hard to write on such days.  Sometimes such days leave me in a state of exhaustion without energy to write. Sometimes such days leave me confused and not able to make sense of the events that took place. At the same time, they fill my mind with doubts, questions, half-baked analysis, and contradictory hypothesis as to whys and ifs.  why something happened and if it could be prevented or handle differently.

I suspect that writing about the different situations we were placed in or events we had to participate would be more interesting and in a way more informative than writing about our every day studying  together.

However, the hours during which Robert and I are teaching each other and learning from each other are priceless specially during the days with unexpected problems.  Those hours offer stability, bring calm and very needed feeling of accomplishment and moving forward.

So we have been studying together:

1. Practicing all four operations on fractions. (6 th grade)
2. Interpreting and making different graphs to display data.(6th grade)
3. Using parallels and meridians (lines of latitude and longitude) to find different places on maps.(not sure 5-6 grade?
4. Completing analogies. (4-5 grade)
5. Reading Comprehension (3rd grade)
6. Singing (Preschool)

The singing is the most important because it is something relatively new. I sang to Robert when he was one year old and three years old and maybe when he was even four years old. And then I stopped. I stopped because he never joined me in singing. I suspected that he lacked ability to change the pitch of his voice. I knew that all his utterances were extremely short as he clamped the sounds together, shorten or completely skipped some of them. I also noticed that he lacked the ability to space syllables. I tried to prevent that by teaching Robert to draw imaginary shapes in the air with each corner representing one syllable for three or more syllables words.  Segment or swing for two-syllable words  and all sort of movements to help Robert pronounce long sounds in one syllable words or two consonants in CVC words.

Sadly, those methods didn’t improve quality of Robert’s speech. Only when I prompted him, he would use one of the methods to say the words or phrase more clearly. Thus, I came back to singing as the tool to practice rhythm and lengthening of sounds.

For last 5 days, Robert and I, with the help of the piano, have been singing.  The same few songs every day. Hot Cross Ban;  Shoo, Fly, Don’t Bother Me; Hickory Dickory Duck; Are You Sleeping; Bingo; Mary Had a Little Lamb; Hey Diddle Diddle. 

Yes, we are definitely in preschool and it hasn’t been easy. Robert certainly can change the pitch of his voice and that is the great achievement and surprise. But he  does that only a few times per song, the rest he recites with many  omissions. 

Yes, preschool is very hard, that is why Robert would rather draw double bar graphs, or list all the US cities   between 40N and 43N parallel.

September 23, 2015

During our weekend trip to City and State of New York we ate at two Diners. In both of them, Robert ordered the same dish: cheeseburger and fries. However, he hardly touched his meal  in the first diner while he clearly enjoyed every bite of the food served in the second diner.

Two weeks ago, Robert refused two small band-aids offered by phlebotomist to cover puncture wound caused by blood test in case the one Robert already had on will fell off.  Robert protested with very loud, “No, no, no”, and was very agitated.  When he is in such a state, there is not much for me to do. I manage to persuade him, to at least replace the band-aid that was already slipping of his arm with a new one (which didn’t hold either as his arm was covered with lotion earlier on) and exit leaving another band-aid in the lab.

A week ago, as a conclusion of a visit to his allergy and asthma doctor, Robert was given a spacer with a mask, a medicated shampoo, and pockets of special face cream. For a few second he hesitated if he should accept any of those items. His hesitation, however expressed itself mildly as slight movements of his hands toward himself and toward the nurse.  There was, no loud protests, no effort to leave everything on the physician desk.  After a few second of silent deliberation, Robert handed me each item expecting me to place them in my purse.  Which I did.

Robert’s opposite reactions to two hamburger plates and to getting things from two medical establishments forced me to realize obvious fact.  Robert doesn’t take anything at face value. He differentiates between things and event based on their qualities.

There was nothing wrong with the fries and hamburger in the diner in New York City.  They were not poisonous or undercooked.  Still, they were thick, yellow, and bland. I tried one fry. It was not appalling, but it was not tasty either. Even dipping it in ketchup or Robert’s favorite honey mustard sauce wouldn’t enhance the taste. I am not sure how the hamburger tasted, but even the cheese on top of it didn’t convince Robert to try it. Maybe that was something about the smell of the oil they were cooked in, maybe there was something added to the meet.  I don’t have any idea.

But, the fries in Hudson’s diner were thin and orange.  They were made from unpeeled potatoes.  They smell as they should.  At least as they should smell for Robert. It might be that diner’s insistence on using only organic products resulted in better outcome.  Maybe the chef who only used organic product treated the food with higher regard and thus put more thoughts and efforts into preparing his dishes even the simple ones.

There was nothing wrong with the way phlebotomist treated Robert.  She really tried to accommodate him. She took his blood in a professional way.  Robert remained calm throughout the procedure although he was slightly tense.

I do have difficulties trying to understand Robert’s varied reactions to getting extra items from both places. The only difference I could notice was the ease Robert was treated by his allergy doctor, her nurse, and her assistant.  He met each of them separately, but all of them were relaxed while working with him, be it weighing him, listening to his lungs, checking his throat, or practicing with him breathing through the spacer with a mask. They not only knew Robert from previous visits, but they probably already met many children and adolescents with special needs. They were at ease, so Robert was at ease too.  When Robert is relaxed he is more open to new things and to  persuasions.  It is a two-way process.

As wonderful as the phlebotomist was, it was clear that she was tense.  She became concerned as soon as I told her that Robert had special needs. She immediately warned me that she might not be able to take Robert’s blood if he would act up. I told her that in the previous year he had his blood drawn twice without any problems and I hoped that she would relax. She probably did… to some degree.

She was calm on the outside but she felt uneasy.  I sensed her anxiety, so Robert had to feel it too. When he senses another person’s anxiety he responds with his own. As a result he stops listening to the person and is directed by the environment of things and his own rigid rules.

September 11, 2015

This morning Robert had a blood test at Quest Diagnostic.  Nobody was in the waiting room when we arrived.  Robert waited patiently until I registered him.  He bravely stretched his arm and watched attentively as the phlebotomist prepared the syringe and two vials.  The muscles on Robert’s face were tense, and they bulged slightly when the needle pierced his skin. Nothing else. Robert  waited calmly until two vials filled with the  dark red substance. Everything went so well.

I was so proud! It is true that the last two blood drawing went equally smoothly. I remember, however, the times when three people had to keep Robert to prevent  his limbs from kicking, twisting, hitting, and moving in all possible directions so the blood could be drawn or allergy shots could be given.  I knew how scared he was then, years ago.  So I also knew how brave he tried to be this morning. It was an achievement. No doubt about that.

So I was proud.

Until I heard  Robert’s loud protests, “NO, NO! NO!! NO!!!! The event that induced such strong objections was simple. The phlebotomist tried to give Robert two extra Band-Aids, because the one he had already became loose. It was my fault as in the morning I put lotion on Robert’s arm making his  skin was too slippery for the glue to stick to it.  That was a reason the thoughtful phlebotomist offered two extra for later.   Unfortunately,  Robert has very strict rules about NOT taking anything from one place to another. Taking two extra band aids was out of the question.  They were, after all,  the property of the lab and they could leave the lab only as a part of the complete procedure – attached to the pierced vain.

The “No, no, no” was loud, sudden, and thus very scary.  I apologized and explained, but it was clear that Robert’s protests left some aftertaste on everybody in the lab.

It was not the first time that Robert was able to handle the  painful situation with  great maturity and understanding, but fell apart when small things were out-of-place.

A few years ago, while the dentist was fixing his teeth, Robert used the first moment when the drill was out of his mouth to jump out of the dentist chair. We all – dentist, dental assistant, and I -were in shock convinced that Robert would run out of the building in state of great animation.  He, however,  in a fraction of the second,  reached the drawer next to the sink. It was slightly open.  Maybe quarter of inch. Robert closed it and then calmly returned to the dentist chair ready for the next phase of drilling.

September 9, 2015

A few months ago, I purchased a workbook 100%Curriculum Vocabulary for grades 6-12. Robert knows more or less 10% of those words but he is not using independently any of them. So why then I decided to introduce to Robert  words related to community, government, health, and keyboard?

Well,  Robert lives in the community.  He has checking account, he is involved in taking care of his own health, he uses his  computer skills, and he has to understand, at least to some degree, the role the government plays in his life and the lives of others. Those are very hard lessons for me to plan.  I did not know where to begin.  So although starting with vocabulary might not be the best way for Robert to learn, but it is  the easiest way for me to teach.  The words offer the starting point. They are like primary colors from which all other colors and all other pictures can be created.

Of course there are limits to what I can create, what I can teach.

For the whole week, we practiced words related to money – gross pay, net pay, withholding, interest, balance.  First almost mechanically using word search puzzle and a crossword, then practically with the help of Robert’s paycheck, and his bank account.  Robert found out that he was paid biweekly, that one of his gross pay was $8, his withholding was $0.69 which left him with net pay of $7.31. He also found the balance of his checking account but couldn’t find the interest.

For next few months, every two weeks,  with each new pay check, we will practice these words again and again. That is not as terrible as it sounds. It won’t take more than a few minutes each time.

September 8, 2015

One of Robert’s achievements I heralded on those pages was his ability to use men’s locker room while going to the swimming pool.  For many years we used family locker room so I could assist Robert when needed.  Later, he was using it alone, while I waited outside by the door. Still, I could enter any minute.  That was not the case with the men’s locker room.  It was Robert’s dad who assisted him there preparing him for doing everything independently. At some point, he kept leaving Robert by the door and waiting for him in the pool.  After the lesson, Robert met his dad in the waiting room upstairs.

So I dared to do the same. I left Robert at the door to the changing room and waited for him upstairs.  Well, not exactly.  The first time, I decided to wait outside the door afraid that Robert might look for me where he left me.  I was right.  Soon enough, Robert in his swimming pants opened the door on the side of the hall not the pool.  I directed him back, telling him to go to the pool. He went.

One time (as I wrote in another post) I made a mistake of telling him that he put his white T-shirt backwards and Robert attempted to change it in the middle of the waiting room. Luckily, he allowed me to convince him to do the same in the restroom.

One time, when he was not leaving the changing room for extended period of time, I asked Robert’s cousin who visited us during vacation to check on Robert. He told me that he found Robert half-naked, contemplating his clothes. A few words from the cousin sufficed to make Robert dress quickly.

And then there was that:

I waited for Robert upstairs in the waiting room. Somehow, I felt anxious.  I wasn’t sure what could happen, after all Robert never bothers other people.  He can take shower, he can dress, he can dry his hair.  Still, the anxiety forced me to go downstairs and wait by the doors to men’s locker room.  I felt pretty silly staying there, so I kept reading over and over the same ads on the bulletin board.  suddenly, I heard a very loud “No, no, no!!!!” Very loud.  Robert was protesting something.  Very loud! Such protests have the power of intimidating almost anybody.

Well, I opened the door to the small hallway (not to the locker room, which was behind the side wall) and called on Robert to come to me immediately. Robert didn’t come.  Instead a man with a little boy hurried to the door.  He seemed very confused.  He held glasses in his hand. He told me that the glasses were laying on the bench.  Robert picked the glasses and when he saw the man moving to the exit, he followed him to give him the glasses.  When the man tried to put the glasses back, Robert protested strongly, “No, no, no!!!”  At first I didn’t know what to do.  The man gave me the glasses and told me that nobody but Robert was in the locker room.  Still, I didn’t want to go in.  After the man left, I opened the door again and called on Robert.  This time, Robert came.  I told him to put glasses back on the bench.  Since Robert didn’t see anybody else to whom he could give the glasses, he complied with my request.

I know, I know.  Robert meant well. Since nobody was in the locker room, he assumed that the glasses belonged to the man and thus tried to force him to take them.  He didn’t understand that someone else who was not there could leave the glasses.  maybe that is one of the example of “Theory of mind.” Unfortunately, Robert puts so much energy in his vocal protests that one might be scared of him.  That is not something I take lightly.

I wonder, how many other unforeseeable problems will trip Robert over in the future.  How many?

September 6, 2015

I, probably, wrote about those “techniques” before in a few of my posts. Helas, I won’t find them now among 300+ other pieces of writing. I realized today, that our family’s life became so much more pleasant because of a few very simple tools that manage Robert’s behavior …and ours.

1. Giving choices.  “Do you want to do A or B?” I ask Robert. He answers.  He might not really voice his preference, but I kept sticking with his answer as a way to install clear understanding of what choice is.  Sometimes the choices are of the same nature or value to Robert. “Do you want poblano or eggplant for dinner?” It is important to provide alternatives specially to someone who has difficulties expressing his or her wishes independently. Robert won’t come and tell us that he wants to go for a walk, or to the movies, or anywhere else.  But he is capable of making a choice when he has the list of options.                                                                                                                                                                                                   Often, I give Robert “unbalanced” choices knowing perfectly well, which one he prefers. “Do you want to study or watch TV?” I ask when I want Robert to, well, leave me alone for a short while.  He chooses watching TV and that allows me to have a calm conversation with a friend who stopped by or talk on Skype with my daughter.
2.  Five more minutes. Interrupting Robert when he is watching Netflix,  folding laundry, or eating  by calling him to do something else is not a good idea.  Robert needs time to prepare himself for the next activity. When I say, “Robert, we will study in five minutes,” Robert  doesn’t have to jump and come over immediately. He has time to prepare myself mentally for the next activity.  Not once, he surprised me by coming to the table and waiting for me patiently as it is I who forgot about asking Robert to learn with me.                                                                                                 Five more minutes   also gives Robert a toll not to refuse my request straight forward but to delay the compliance. Although, there are times when Robert overuses that phrase, it is a nonetheless one of the most important language tools he has.
3. First, then tells Robert the order of activities.  That construction, later augmented by the whole list of activities following each other, has resulted in Robert patiently assisting me in doing chores: bank, post office, stores.  At the beginning,  I included McDonald at the end of the list.    I don’t do that anymore.                                                                                                                                                                                                               First, then also encourages Robert to finish the  less preferable activity before the  one he likes more.  “First we finish folding laundry, then we go for a walk.
4. IF is not exactly the same as, “First, then” although they are closely related and sometimes interchangeable.  When I tell Robert in the morning, “If you want to go to Lifeworks, you have to get up now, ” I both give him a choice and the condition. Of course, when I say that I know that Robert wants to go to Lifeworks.  Although, he wants to sleep longer, he wants much more to go to Lifeworks.  Only when Robert felt very sick, he chose “sleeping longer”.  The IF has been invaluable tool to managing Robert’s behavior specially in those cases when the change in routine was called for or something new was introduced. “If you want to go to Outback restaurant, you have to put on new shoes.”  “Only if we buy you a new shirt, we can go to the Applebee’s restaurant.”

There are other tools which have helped me to deal with some of the excesses of Robert’s behavior. Very rarely now, I have to use, for instance “extinction and redirection” , although that still happens.  (For instance during recent blackout when explanation didn’t help ignoring and redirecting did calm Robert down significantly.) I would still use over-correction, I that were necessary.  It is not, because Robert keep his environment in place without being ask to.

I don’t interrupt when Robert is in the middle of closing the doors that were supposed to remain open.  But as soon as he closes the door, I tell him, ” It is important for me that the door is open.  Please, open the door.” Robert complies 99% of times.  If he doesn’t, I pretend I don’t notice that.  Half an hour later I ask again.  So far, it worked.

https://krymarh.wordpress.com/2013/05/13/discovering-the-path-of-microsteps/

https://krymarh.wordpress.com/2012/07/16/overcorrection/

https://krymarh.wordpress.com/2012/03/24/while-i-was-teaching-him-to-glue-stickers-he-was-learning-whats-important/