Journal, Page 11

April 29, 2014
An… easy day. Robert and I studied together in the morning.
1. I went back to the first lessons in Saxon Math level 4. I know, I know. This is the fourth time we do the same things over again. This time, however, I am using the pages only to find out what problems Robert still has difficulties with. I am writing myself additional pages for extra practice. I should say for extensive practice. This time, I will spent long time on the first 11 pages of the workbook, as for each page I will write 10+ others with an emphasis on calendar skills.
2. A section on “og” family of words. Not for writing as writing such words had been mastered by Robert at least 8 years ago, but for saying them. Again Speak Iton IPAD provided models, as my pronunciation of English vowels is… well… wrong.
3. We read another story from Spectrum Reading. Robert answered five WH questions and one “HOW”. But only “who” and ” where” didn’t require help.

Yesterday evening, as I worked on a computer, Robert approached me and said, “Store.”
“What do you want to buy?”
“Potatoes”, he replied.
I checked and found out that we ran out of Robert’s favorite kind, organic Russet potatoes. So today, we went shopping just before lunch time. I followed Robert as he picked most of the items. I decided not to use a self register as we had a few products that could be hard to find on the self-register screen. For instance,poblano pepper we always had to call for help. Robert ignored almost empty cash register and followed to the next one which was still covered with many food articles. I asked him to return, but he said, “No, no.” I realized that it was because there were no candies by that register. So, I told him that I would buy a candy if he puts all of our shopping on the belt. He agreed. I took KitKat and Twix out and asked him to choose. As he noticed both candies, his eyes lighten up. He kept moving his finger, once pointing to Kitkat, another time to Twix. I couldn’t help but give him another choice, “Do you want Twix, KitKat or both?”
“Both”, he said and he got both.
Oh well, once in a while…
After we came home, Robert, with my support, completed History Packet Ancient Egypt. He cut, colored, glued, read, stapled, copied, and seemed to like this project a lot. When he saw a page with a drawing of a pyramid pattern, he decided to build another pyramid. And he did.
He made himself potato with cheese and Tyson chicken for dinner. He folded one basket of laundry, but left the second for later.
No rush. an easy day…

Shannon des Roches Rosa

She writes a blog which unlike this one has many readers. She advertises herself much more skillfully than I do, and unlike myself seems pretty pleased with herself. She also strongly protests “media’s understanding” of a mother who killed her son with autism and then committed suicide. All of that is fine with me. What is not fine, however, was that she also addressed me directly writing, “Krymarh (…)To make the message extra-clear: If you keep insisting that you *truly* understand the mindset of Robert’s mother, then that means your child is in imminent danger and, ethically, I should be using the power of the Internet to identify you and call CPS.”
If I quote Shannon des Roches Rosa here without her permission it is because I consider her words to be a threat to my son and such threat should be dealt with as openly and as swiftly as possible.
She wrote it in response to my two posts.
The first was short:
You can side with a mother AND with her son. It is not about blaming the victim. They were both victims. It is about blaming the system. And as long as you and many others insist that lack of support had nothing to do with it and should be treated separately, the more tragedies are to follow. The lack of support has everything to do with it. Maria Hrabowski

This post brought only attacks of those who, on her blog, called for public stoning of a mother who killed her son and herself too, unable, for whatever reasons, to find help for him. The attacks came in short, crisp sentences discharged from canon placed on high moral ground. I was told over and over again, as if I didn’t know, that killing is wrong.
I made mistake of responding with rather long post. I made mistake not because Shannon des Roches Rosa used the second post to threaten and silence me. I made a mistake because nothing of what I have written resulted in even one person on Shannon des Roches Rosa blog taking a breath, and thinking, and imagining what the son and what the mother probably went through in the days before their death.
I wrote:
You write as if you had been there. As if you knew how does it feel to call for help to all appropriate places and being turned away. You write as if bringing a child to the hospital, the child who cannot talk and tell about his pain, would result in the whole hospital staff doing everything to help. The reality is that such child just a year ago was held tied up to bed and not getting any TESTs or treatments. for three weeks!!!!!! That was in Chicago. The doctors waited until the child calms down on his own. In other case the only treatment was to drug such child to the state of being “out of it” for ever. The child was released home with monthly supply of the same drug. You write as if you believed that one of many organizations that certainly is there was willing to help and had sort of an emergency program. I had been calling for something like that in my educated state of Massachusetts for years, and it still doesn’t exist. You write as if you knew how it feels to have your child hit himself with all the might and scream with pain, he cannot explain. You write as if you knew how it feels, to try to hug your child in a way that would prevent him from doing a harm to himself and being pushed away, and watching him hitting his head time after time with a full strength. You write as if you knew how it feels to take your child to all specialists who don’t investigate medical condition but just tell you, to “blame it on autism.” I can imagine much closer than anybody of you throwing mighty judgement, what that boy felt – lonely and neglected by the SYSTEM, by people like you, who don’t want to contribute to his proper care, who blame mother of not being able to watch her son suffer. You would assign a blame to her, to release agencies, government and thus yourself from any responsibility for this boy plight. You write as if you knew, how every minute of your and your son life is a constant vigilance to not let OTHERS destroy your son. To teach and watch every day, to fight for services, to make everybody else enemy in the quest to secure future for your child. You write as if you knew how drained and confused you get after confronting the fact that those who are put there to help (your tax dollars) push your child away. You write as if you wanted to believe, that the world such child and his parent live in is a good accepting world with plenty of resources and open to help. All of you want to believe in goodness of social workers and agencies paid with some tax money. In my state, many ARCs called for closing of Fernal School, but then they were not opened at all to take the more severe cases of fernal School clients under theor wings..
Please don’t tell me that I am not on the side of the victim. I am much more empathetic and understanding than most of you. I also know that those sentencing attitudes of those who see clear guilt of mother do more damage to other children with severe disabilities and their families, than my opinion expressed here. Only when you mobilize forces to help mothers you can help those who need so badly your help, not your judgements. maria Hrabowski

I am leaving this text as I wrote it, with all the spelling and grammar errors. I wrote it stupidly believing that I would educate those who rush to judgement. I brought the case of Alex (without mentioning his name), who was killed last year, and whose plight and death shook me to the core.I though about many mothers I know who went through very challenging times. I didn’t, however, write that there were also mothers killed or put in coma by their children with sever autism. I couldn’t even use that argument as it is one of the most unfairly stigmatizing our children. And again, I was told as if that concept was foreign to me, that “you don’t kill your children”. Shannon des Roches Rosa must think that I don’t know that truth and thus followed with this threat : To make the message extra-clear: If you keep insisting that you *truly* understand the mindset of Robert’s mother, then that means your child is in imminent danger and, ethically, I should be using the power of the Internet to identify you and call CPS.
I do consider her words a very dangerous threat to my son. Shannon des Roches Rosa, loving mother of a child with autism,issues this threat as if she really believed that expressing my strongest empathy for two tragic human beings: mother and son, puts my son in danger and warrants his removal from my care. This is a person attacking from her high moral ground knowing fully well that this is BS. But she also must know, what happens to the parents who fight for rights of their children with schools and/or agencies when they make too many enemies on the way. How easy it is to destroy their children as a punishment for parents protesting institutionalized neglect.
There is this overwhelming tragedy of people lost in situation they couldn’t handle and there is Shannon des Roches Rosa changing it into public stoning of already dead mother and launching an offensive against someone who expresses empathy for those two tragic human beings.
I concluded:
I put my first and last name here. I don’t hide myself from anyone, although I do regret writing here, as you and your crowd changes the meaning of my words to suit your executioners attitudes. I will respond to you on my own blog soon, And i will quote your last comment as it is a pearl of cruel hypocrisy. Maria Hrabowski

Until now, I have never brought arguments I kept using in responding to the statement expressed in newspapers articles I don’t agree with. I am rather outspoken but keep my love of polemic out of those pages. But the threat Shannon des Roches Rosa used in those tragic circumstances forced me to change the rules. Besides, I rarely write about that other side of caring for a child with autism. For once, Robert does much better then he did years ago, and I do have tendency to forget quickly the most trying times. But it is good to remember those darker days as without them the picture is, well, too Rosy. I mean too Rosa.

Predicaments and Language Concepts

April 25, 2014
A few weeks ago, in a post I wrote how we used Robert’s anxious asking for his hat to introduce to him a concept of importance of things. During our trip to North Carolina and back, we had three more occasions to use our predicaments to advance our son’s understanding of language and practice his speech.
For a long time we treated Robert’s obsessive, repetitive questions or statements he kept uttering during our car travels as rather hard to deal with. We tried to ignore them, dismiss them, ignore them, dismiss them… The process left us exhausted and irritated.
Until one day, we finally noticed, that those questions and/or statements gave us an opportunity to involve Robert in a dialogue.
If Robert didn’t have a problem, he didn’t bother to talk. When, however, Robert was in quandary, he tried alert us to it and demanded solution. Hence, he talked.
The fact that he started by repeating the same word or phrase may times, was not important. After all, his words gave us an opening, and to some degree we could expand the dialogue, enticing Robert to continue with another word or phrase.
1. When we picked up Robert on Saturday after the program, he had his backpack with him. It was Robert’s experience that backpack was always first returned home. Only after returning the backpack, the family could drive to New York. Robert kept repeating, “Home, home.” and “Bag, bag.”
It took us a while to understand the connection between “Home” and “Bag” . When we did, we could shape a dialogue, first feeding Robert with appropriate responses. “We bring backpack home when we return from North Carolina” – This is a sentence that explained what would happen, but it was too long for Robert to repeat. we had to think about simpler alternatives. For instance:
“Bag, bag”
“What about Bag?”
“Yes, we will bring backpack home after the trip”
What about bag?”
“when we bring backpack home? ”
“After the trip”
Robert practiced this and similar language structures throughout most of our drive to New York City.
Our attitudes toward Robert’s obsessive asking changed dramatically, as now, we considered it a great opportunity for therapy and felt great that Robert participated willingly.
2.On a way from New York City to Durham, Robert was bothered by the fact that we left his pillow and comforter in his grandmother’s apartment. He believed we should take it with us to a hotel. That resulted in another a few hours long language therapy session. It started with Robert repeating just one word, “bed” while he had in mind pillow and comforter. (bed is much easier to say).
“Bed, bed, bed.”
Do you mean, ‘bed or pillow”?”
Where is the pillow?”
“In New York”.
“where is the blanket? ”
“In New York”
“Yes, In grandma place. Pillow and blanket are in grandma’s place.
so, Where is your pillow?”
“In grandma house.”
We repeated this and similar dialogue that included a few calming sentences about picking pillow and blanket on our way back.
Every time Robert asked, we built it into a dialogue. By the time we passed Baltimore, Robert had enough, and asked for his IPAD.
3.Another quandary presented itself on a way from New York City to Boston. Since this time we were driving with Robert’s grandmother, at first we tried to spare her from listening to our boring dialogues. So we tried to ignore, to dismiss, to ignore, to dismiss Robert’s efforts to deal with his problem.
Finally, we gave up.
“Grandma, grandma.”
“What about grandma?
“New York”
“Yes, grandma lives in New York. Today she goes to Norwood with us.
“Grandma, grandma.”
“What about grandma?”
Yes, she comes to Norwood with us.
“Grandma, Grandma”
“where does she live?”
“New York”.
“start with she, and tell me again.”
“she lives in New York.”
Where does she go now? ”

Quandary solved.

Five Hours in the Capital

We arrived 15 minutes before 10 AM. The National Cathedral was still closed, so Robert, Jan, and I walked around it looking at the plants surrounding it and at its tall walls. Maybe because it was Good Friday, the entrance was free. As we kept approaching the altar, we heard singing. Beautiful voices, beautiful music. The Boys Choir had its rehearsal. Robert sat next to us and listened. When I finally got up, he reluctantly followed me.
We stopped at the Lincoln Memorial, walked toward beautiful World War 2 Memorial and farther toward Washington Monument. We didn’t reach it. It was a cold morning, and we had a few other places to visit. Besides, the tall obelisk presented itself most magnificently from the distance.
We took pictures in front of the White House fence, drove past Supreme Court, walked toward Capitol, but didn’t enter it.
We didn’t make any arrangements to visit our senators or representatives. We will do that after Robert and I read a few easy (2, 3 grade level) books on branches of government. When we come again, Robert will recognize all these places as relatively familiar. The mixture of known and unknown will help Robert to make the next step. But, since Robert didn’t read any of those books yet, and by now probably has forgotten appropriate chapters from his Social Studies workbook, there is no point of planing next visit to Washington DC yet.
On a way back to Interstate 95 North, we got lost a few times. Robert didn’t mind. He kept quiet. By 3PM he certainly had to be hungry, but he didn’t mention french fries or any restaurant’s name until Baltimore.
Was he thinking about what he saw? What impact the structures and crowds had on him? I don’t know. After all Robert never explains himself.

Four Days in North Carolina

April 23, 2014
Every morning we drove Jan, Robert’s dad, to work and every evening we picked him up. That was the frame of ours days there. The time in between we spent doing other things, with very little planning. Twice, we went to Sarah’s Duke Garden. Not much teaching there. We walked around a pond in Japanese section watching turtles, ducks, and a female black necked swan. We rested on the benches under crab apples and did nothing. One might call it relaxing, but Doing Nothing sounds much more appropriate. Priceless.
We walked and got lost in the Native Plant section. We found an educational, vegetable garden and amazing White Garden filled with white blossoms watching us from flowers, shrubs, and trees.
Twice we went to The Life Sciences Museum. We went around lunch time, when many groups of school children were aiming at cafeteria for lunch, so it was relatively quiet and most of the stations were approachable. We compared the capacities of different conics by filling them with gray “rice’ and pouring it from one solid to another. I don’t remember what else we did, except that we moved from one section to another trying this or that. we visited insects’ exhibits, watching different camouflages the strange insects used to stay undistinguishable from twigs and leaves. We let butterflies sit on our heads or shoulders. We walked through dinosaurs’ trail, wild animals section and wind section of the outdoors exhibits.
One rainy day wee went to see, Rio 2. Unfortunately, we had to wait very long before the movie started. Not just previews but also a short film, and theatre own never-ending advertisements delayed the presentation of the feature. By the time Rio 2 began, Robert was ready to go home. But he survived. Three times, however, he loudly called for his father. But when asked, if he wanted to leave, he said, “No”, so we stayed until the end.
The highlight of Robert’s stay in Durham was doing laundry in the hotel. It seemed that this was the activity he enjoyed most. Walking through hallways, applying a box of detergent, paying with coins, and setting washer and dryer cycles allowed him to continue with his home responsibilities in a new setting. By applying his old skills in a new situation, Robert was able not only to adjust to a new space but also to feel in control of it. In a way, he retrieved his compass.
we didn’t have to pay admission to the Life Sciences Museum as our membership in Boston Museum of science gave us free access.

Against the Grain to North Carolina

April 22, 2014

Years ago, when Robert was 4 or 5 years old, he gave us, his parents and his grandmother, very hard time on a way to White Mountains in New Hampshire. He was kicking, screaming, and moving back and forth in his car seat trying to get out. Despite all these behaviors, Robert’s grandmother stated that we should stop and eat in the first restaurant we find. I was petrified. How could we go into any public place with this untamed tiny creature with loud, piercing voice and explosive energy in his little feet? The only thing to do was to go back. Go back. Go home. Hide. I protested. Well, mildly protested. And since everybody was hungry, including Robert, we went to Applebee’s anyway. To my surprise and relief, Robert behaved much better than he did in the car. Maybe he still whined, but I am not sure even of that. He certainly did not kick and he did not try to run away. He ate his food and let us eat ours. Even more, after the stop in the restaurant, he became calmer so the remaining part of the trip was much nicer. That lesson was not lost on me.
From that time on, I often went against that first impulse to return to safe cave and abandon all thoughts of venturing out.

In one of the old posts,, I wrote about going back to the store almost immediately after Robert had a major tantrum there (1997). Of course, my husband and I planned carefully a few subsequent trips to the stores. But after a few days, we were rewarded by years of pleasant shopping experiences with Robert.
In 2004, I was advised by the clinical supervisor (BCBA as she would be called today.) to consider residential placement, as a better way to address Robert’s behavior. Moreover, I was asked to consent to the next level of restrain which I understood as a sort of solitary confinement in a very small room. I have not consented. Instead, I began looking for less restrictive program. Not without a fear. I was scared of Robert leaving a place where he stayed for more than 8 years, where everybody seemed to know him. where I knew everybody. Where I knew what to expect. But then, the path that school had for Robert became narrower and narrower. I had to find a different road.
I did. Robert joined the Collaborative program that offered more possibilities, although some were thorny and in the end led to a dead end. Still, at home Robert’s behavior improved a lot. In the beginning it also improved at school. Moreover, Robert gained many skills in a very short time. The second year, however, was a different story. But that second year was completely different program. Different place, different students, different teacher’s aides, different way of presenting instruction. Only the teacher was the same. Without the supportive guidance of the previous, very experienced staff, Robert lost his compass. Robert left this school with a terrible profile written with cowardly menace. For instance, during the whole school year, Robert had three tantrums, but the profile stated that he had three tantrums EVERY WEEK. The image of Robert created by this profile is still alive and affecting Robert’s future. Based on this profile, I was, yet again, pushed toward placing Robert in the most restrictive programs. I rejected those advises. Instead, Robert ended in my town’s high school in self-contained classroom. He had three relatively good years there. In the school year 2009/2010, with the arrival of a new teacher and a new sped director the chasm opened yet again, and Robert seemed to regress with the speed of light.
It has to be said that going against the grain is not full proof and not easy. Those are not happily ever after stories. There are constant struggles. There are doubts.
But, at least in Robert’s case, those hard decisions made against almost everybody who could claim some knowledge of Robert, were necessary to foster Robert’s growth.
That is why we drove to Durham, NC, that Saturday, on April 12, just after Robert’s major meltdown. We took this trip despite the fact that Robert’s behavior deteriorated the previous week. Without consistent daily schedules (he is still without a day program), without responsibilities to fulfill, without events to predict for the next day, without meeting other people, Robert is regressing.
I expected such development and tried to prevent it, but on Thursday, April 10. as I reported in Robert became very anxious asking for his father every minute. On Friday he was just very tense and on Saturday, Robert had a meltdown. As he does every Saturday, Robert attended 4 hours long program and at least for an hour and a half, he was making noises and slapping his own face. It resembled the nightmarish events from his last year at local high school (2009/2010). I was heart-broken. In a short time, everything he worked so hard on for years, evaporated. And again, my first reaction was to cancel the trip and return home. Go back. Go back. Go home. Hide.
I knew that Robert was responding with constantly growing anxiety to the reduced predictability of his new situation. I couldn’t help him. I was unable to find him a day program, and I wasn’t able to replace all the missing elements of his school life with new arrangements. Robert looked as if he were drifting into chaos without flashlight or compass. The trip to Durham, at first glance, appeared to be the continuation of that chaos. But that chaos was a part of a travel routines: driving, staying in hotels, visiting places, meeting people.
That is why, on that Saturday, April 12, we did not bring Robert home but instead we took Interstate 95. South.

Journal, Page 10

April 11, 2014
Two rather difficult days.
Yesterday, Robert and I studied together for two hours. It was rather uneventful. Simply the extension of previous materials.
Robert work on pronunciation of “..ill” with the help from Speak It on his IPAD. He repeated the vocabulary worksheets from three days ago. A couple years ago, I noticed that if we repeat the same pages day after day, Robert doesn’t retain any more words that if we repeat them month later. So now, I am trying to go in cycles of three days. Each of three days we work on different set of words, and then we repeat the cycle.
In Saxon Math, Robert is counting the values of expressions. We returned to finding coordinates of the points in the Cartesian system. Two years ago, Robert didn’t make errors, but after such a long break he makes some mistakes.
Robert also completed today the last project – cutting, bending, and assembling angelfish from Kumon Amazing Crafts. He did it all by himself, without even once calling me to help him. Around 12:30, we drove to Stony Brook in Norfolk. Brisk walk along the trail. A few short stops to observe a swan chasing away Canadian geese and ducks from two wide ponds. As we observed, I described in two simple sentences what we were seeing. I wanted Robert to tell me that later.
In a car, we practiced ordering Mighty Kids chicken finger. Robert kept repeating after me but in the restaurant he asked for “Number 15”. To my surprise, he was understood!!! Moreover, the employee kept asking Robert all the questions without even looking at me. When she didn’t understand what sauce Robert wanted, she gave him a choice, “Barbecue or Sweet and Sour?”
“Sweet and sour,” he said and she understood. What a relief! As we sat at the table, I tried to talk about what we had seen at the park. Robert said, “Swan, geese”. Better than nothing, but…

When we returned home, for reason I cannot understand, Robert started asking about his dad and his hat every half a minute. ( He had similar behavior two weeks ago.) Still, he joined me to work on the Mesopotamian Pocket from Ancient History Pockets. He colored the pictures, completed a vocabulary page with the definitions and illustrations of four new words. He cut out the Tigris river on the map and put two boats on the sticks to demonstrate how sailboats traveled to and from Persian Gulf. He made a post card with a picture from Babylon’s Hanging Gardens and a card with a Ziggurat. He read a text about Mesopotamia and made a cover for the pocket. He colored and cut out two Macedonians puppets. It took more than two hours to finish, but Robert was rather engrossed by this activity. But not engrossed enough to forget about his dad and dad’s hat. So every few minutes he asked again, “Dad, dad” or “Hat, hat”.
As long as he kept working I didn’t pay much attention to this obsessive asking. But when the project was completed and I began cooking, Robert’s continuous asking drained me completely. I couldn’t come with a good strategy to stop or even reduce this behavior. Maybe because I was exhausted already, I just didn’t know what to do.
Had Robert been asking only about dad, I would use old strategy:
“Dad, dad, dad.”
“What did you say? ” I would repeat the same question until Robert stops repeating the same word few times.
“What about dad?”
“At work.”
“Yes he is working. He is coming home at six.”
Such dialogue, always calmed Robert’s anxiety… for a while.
But this time Robert asked for a hat, and I couldn’t understand what was the nature of the problem with the hat so I couldn’t come with any calming response.

Today, Robert and I had a difficult day also, but for different reasons. We went to see a new center. Robert was extremely tense, and so was I. He relaxed during horseback riding lesson. For the first time, he lead the horse by himself OUTSIDE the arena. At 1 PM we went to the car mechanic to change tires. Given Robert’s prior experiences involving cars, car keys, dealer, and car mechanics this visit could be considered a sign of progress. Still, waiting is as hard for him as it is for me.

Facts. Simple and Convoluted

April 9, 2014
This morning, at my son’s pediatrician office (Yes, he is already 22 years old but he still sees pediatrician, who knows him well.), I glanced at April issue of Parenting Magazine. I didn’t really expect to find anything but lukewarm advice to young mothers of even younger children. Then, a page listing seven or eight things parents should never tell their children caught my attention. The first advice I read was not to tell, “Good job!” to prize the child for doing something correctly. This seemed to go against strong beliefs in encouraging a child by providing constant feedback. And yet, this was exactly what I had been dealing with for the last two years. I wrote a couple of blogs about Robert trying to read my lips to get cues from me and not from what he knows. He stopped believing in his own knowledge. I wrote about it in Pulling out of Helplessness
Just a few weeks ago I noticed that Robert made more errors working with equivalent fractions when I was sitting next to him but refrained myself from any gesture or sound that would confirm to him, that he was correct. Lack of acknowledgment of his correctness confused him a lot. He did better when I was not next to him, and thus he only relied on himself.
Parenting Magazine in one sentence nailed the problem. Robert spent years in ABA therapy during which he heard, “Good Job” thousand times. Later, he went through years of one to one assistance (including mine) and learned to be guided by approving gestures and sounds. As he became painfully attuned to other people’s reactions to his answers, he stopped relying on what HE KNEW.
I don’t know how many people would treat Parenting Magazine seriously, or at least as seriously as New York Times which day or two ago came out with the blog titled, Inside the Mind of a Child with Autism I skipped through it not finding anything that would relate to my son’s learning. They were a few familiar terms and a few known names, but the article left me completely alienated. It was long enough to be informative and maybe it was to uninterested parties. Nothing in it related to my current knowledge of Robert and nothing in it addressed any of the thousand questions I still have.

Journal Page 9

April 7, 2014
The teachers’ supply store in my town, Learning Wellis closing by the end of the month. On Saturday, I bought many workbooks at greatly discounted prices. Today, we started again History Packets, Ancient Civilization Five or more years ago, we had done the same thing completing all the packets. But it was only the first encounter. Since then nobody has bothered to teach Robert History as it was considered one of the subjects useless for him. Today, Robert colored the cover page with pictures representing six cultures from Mesopotamia to Aztec. He searched for similar pictures on his IPad and copied the colors.
Since the books were so inexpensive, I bought many including those that would seem much below or much above Robert’s level. I noticed, however, that sometimes the very easy workbooks introduce difficult concepts in a way that could be easily digested. For instance, in the workbook Daily 6-Trait Writing on one of the first pages I found the word, “Topic”. I have never used that word with Robert, because I wouldn’t know how to explain it to him. This book did that in a very basic ways. I also bought three levels of Word Family. Although it was written with the spelling in mind, I want to use it mainly to practice pronunciation. Robert knows much better how to write those words than how to say them. We used Speak It Apps on the IPAD. Robert printed all the words from “ack” family, put period after each one and then listened and repeated them a few times. I hope that would help him. I also bought 4th grade Grammar. Two years ago we completed the 3rd grade, and a couple of years before that 2nd grade. They are very similar as the level of difficulties increases slowly.
We also practiced concepts by using Assessments from Language for Learners. Using the whole book, page by page, doesn’t make much sense at this time. Robert has many skills already, although they are often hidden. The assessments are perfect for finding those basic gaps and repairing them. Doing lesson after lesson could back fire at this point.
Later, Robert waited for Pam. She was a little later than he expected her, but Robert waited for her patiently outside while I raked leaves, the wind carried across the street over winter months. Luckily, he didn’t have to wait too long.

After a Month

A month has passed since Robert graduated from school. Although we study every day and go out at least once a day, I am not sure how much Robert learned during that time and to what degree his world expanded. We mostly continued with the same activities Robert did before he finished the school. At home, he cooked his chicken a few times, but since he kept leaving the kitchen with the chicken on the stove, he still needed close monitoring. No independence yet.
For the fist time, he baked brownies using mixture from the package. Still, I assisted him every step of the way, even if only to remind him to read the directions. No Independence.
We went to movies a few times. I have chosen theaters he had not visited before. More importantly, I consequently kept taking him for PG 13 movies. Small progress
there, as the number of trips to the bathroom during the movie was on the average… zero.
We went to the Zoo, but nothing new there.
The new addition to the daily routine were (almost) daily exercises aimed at the gross motor coordination. Some improvement in endurance and in attitude.
I noticed some progress in Robert handling self register at the grocery store. He was very skillful in passing bar code in front of the scanner and he became more skillful in entering the code from those produce items he had to weigh. He is still not sure of his new pin on his ATM card and needs help there.
As for our study together, I hardly see the progress in reading comprehension. Although, he is better in answering the Who, Where, and When questions as they relate to the setting of the story we read, I still don’t think he is able to retell the story after we complete the story map. This is mainly my fault as I did not emphasized that skill at this time.
There is an improvement in Robert building or copying 3D structures, but to be sure, I should monitor this skill better. It is still hard for Robert to decide how many faces, edges, and vertices different solids have just by looking at their drawings. When presented with a model he answers correctly most of the time.
Reading parts of the Amelia Bedelia book was a new challenge for him and me. I said “part” as I zeroed on some topics trying to explain to Robert some of the misunderstandings, Amelia had. I was happy when Robert laughed when he read about Amelia Bedelia cutting flowers, but he wasn’t exactly sure what was wrong with the direction Prune the hedge
I had to get out of my comfort zone and explore other things,to take Robert into community. I called the library asking if Robert and I could come one morning a week and put some of the returned books on the shelves. Someone should get back to me, but nobody did. We also visited today our town’s food pantry with two bags of imperishable food. I asked if we could come and volunteer
on one of the two mornings. That was not an options. The place had too many volunteers already.
That brings me to the idea I have been playing with for quite a while, but didn’t do much about it yet. Writing together a book about…meaning of life.
About our place, roles, responsibilities…
I do think that people with developmental disabilities need such book. They long for understanding of their place i the world even more than people who consider themselves fully in charge of their lives.