Against Disarray

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.

Describing Footprints on a Sandy Beach During High Tide

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.




Still Teaching, Still Learning

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.