Two Michaels and Power of the System

MICHAEL the FIRST
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VIDEO FAN

Michael was a 10 yo verbal autistic boy . He lived with his family and had a few older brothers and a younger sister. I never saw brothers communicating with Michael. Only his little sister did. When one of the brothers had a birthday and kids came for a birthday party Michael and I were sent outside. It was upsetting. It’s always upsetting when I see that “my child” is not an equal part of the family. Michael spent most of his time by computer-playing games or watching videos. With videos he watched  mostly just  titles…..over and over. He paid special attention to production companies. His favorites  were “A Paramount Picture” and “Warner Bros Pictures” He expressed joy when a label of beloved company appeared on a screen. He educated me on that and even tried to share his joy “Look! Look! –A Paramount Picture!”  Michael also had  different electronic devices to play electronic games he was attached to.

 Michael was on ABA program and a token economy for his behavior. In ABA a child does different things for “payment”. That is the theory behind that. One psychologist explained to me “You work for a salary, don’t you? The same is with a child” I wanted to object that often salary is not my main motivation. Working in photography most of my life I was lucky to enjoy what I was doing and simultaneously was paid for that. So, with children I worked with I always tried to find other motivations for doing different things. In Michael's example it was very clear how “token economy” was harmful to him. He did different things as “taking a shower” or “brushing his teeth” in order to earn stars-stickers, which eventually led him to more videos. In fact it was feeding his “special interest” which prevented his growth. Most autistic kids have some “special interest”-some like balls and some like just watching trains running. Michael loved videos. Different theories have different attitude to “special interest”-some try to remove it from child’s life-to forbid it (as with Mary from “Boat of Fear” story), some use it for ABA training as with Michael, some (including me) use it for building new things using that “special interest” (as Devon and his Balls).

With Michael the situation was upsetting. All his life at home was around that “special interest” which was reinforced by ABA technique. It was constant tantrums to get what he wanted and constant “battle” between him and his parents around that. In that battle he behaved as an electronic device himself. It was very upsetting as it was impossible to reach the human part of that boy behind that constant struggle around getting what he wanted-more videos. At the same time he was a very nice and smart boy .

Although parents were involved a lot in Michael's life, it was mostly ABA involvement. They followed exactly what ABA therapist prescribed for him, which was not easy at all. Only with their babysitter Mercedes Michael was just a boy. She treated him as a child and he seemed to appreciate it and paid her back with attachment. Michael loved Mercedes. She loved him back

When I started to work with him he was very happy. Every time I came he ran to the door to meet me with joy. Parents usually feel very happy with me seeing positive reactions in their kids. But then later I start to “show my ways” and the parents cannot accept it. That happened with Michael's parents as well.

My goal with Michael was to find other interests and natural motivations for doing different things. On that I usually succeed with kids, but never with parents.

Legally, the position I work assumes “training”. We have written goals to work on , but usually they remain mostly on paper. Paper work is an extremely important part of our work as an agency is paid based on those papers. So papers should be filled out properly and on time and very often all “training” and child progress is on those papers only. In reality parents treat us as  regular babysitters and don’t expect anything from us other than follow parents directions. In the beginning it was very difficult for me to understand why parents don’t support and often even resist a person's enthusiasm and motivation to develop their children without any extra payment.  It took me years to find out the reasons for that.

CAREGIVERS's ISSUES with PARENTS

Parents get tired from constantly having different professionals working with a child in their home. Different professionals of course need parents' involvement in carrying their assignments out . It’s not easy. So, when a person like me comes, a parent's desire is having a rest from the child’s needs and a child as well for a while. “Take a child and go somewhere”. If I try to involve parents in my activities, they resist…it’s understandable, but frustrating, because often we can do much more for the child than professionals who usually follow certain techniques. Children get attached to us as  people who care for them and that relationship we build with children allows us to influence a child and get a lot of progress.

 Caregivers provide children’s basic needs and  this fundamental role in someone’s life  creates a connection so powerful it has a profound effect on a child.  Caregivers spend more time, interact more, and are more in tune with the people they take care of. They learn the nuances, quirks, and peculiarities of those they work for.… At the same time a caregiver doesn’t carry that heavy burden and concerns every parent who has a special child does. .But alas…it happens not often. With special children, parents usually look only for a professional point of view.

Another reason for parents' resistance which is very popular is that with low functioning kids parents have no interest in any progress or development. They don’t see any sense in it. They accept their child the way it is and try to adapt to life as best as possible. For them to have as much help from the government with disabled children is extremely important. The less functioning child-the more help, then there is no any interest in development from parents side as a child would not be able to live independently anyway. They insist on feeding a child who is able to feed himself for example or dress a child who is able to dress independently and resist any progress and a worker should accept it or leave.

There is another reason. It’s much easier to handle a child who is just sitting quietly and motionlessly in the corner of a couch investigating his own fingers, than to handle a more active kid whose mind starts to get active, who starts running around, gets interested in the environment- touches things, opens water, etc. For me it’s a child’s progress. For a parent it’s extra trouble, considering that other kids in their  family take all their energy. So, parent shows disapproval of your actions

What is left for the worker is a simple deal-to exchange time for money paid for that time and forget everything else-similar to ABA-do what an instructor asks   and get a cookie. I left many kids because of those 3 reasons. Michael was one of them. But before I left of course I tried all possible ways to stay.

MOTIVATION
When I started to apply photography, Michael cooperated and did a good work, but not willingly and was not motivated at all.
Rare special child would be motivated by some process of taking pictures or working with photos. They like to look at pictures, they love their own pictures , but would not enjoy the process-it’s not easy work and needs outside motivation to go with the process. I tried to find motivation out of our photo activities and tried to involve mom and/or therapists, but as usual they didn't get involved. Therapists usually give a lot of great words about the idea, but even if they would like to use it, they cannot as they have to follow a certain program that they are paid for. Mom advised me to do the same as the therapist did. I did try "Michael, take a picture of Mercedes and you'll get more videos"-no problem, he took it immediately. But I didn't like it as my goal was to spend time doing other things with Michael, not more videos.

Once I brought printed  pictures and asked Michael to cut them up. He put himself on the floor in protest. I ignored. I showed pictures to his babysitter and then said  "Michael, you took such a great picture of Mercedes. Look, she loves it so much. She could send it to her family in South America. She'd tell them "Michael made such good pictures of me.” Imagine how great it’d be, Michael. But she cannot sent them unless you'd cut them out"

Michael got up on his own, asked for scissors and cut up pictures. (that is what I mean by motivation.) Such moments are important to build something new and natural. It was other moments like that as well, motivations, Michael reacted to. I shared that incident with his mother, in hope to get her interest, but she did not react.

Once I asked him to play ball with me outside-something he had no interest and didn’t want to do. I insisted. I told him that I love his ball and would like to try it and I asked him “please Michael, do it for me, play ball with me, please”. That tough stubborn boy who usually tried to do everything his way gave up pretty quickly without any deals-just because I asked him very persistently. It was many ways to make Michael do things which I’d love him to do without any video involved, but need mom’s cooperation

MOTIVATING MOM

I tried to motivate mom. We will do shopping for everybody, so Michael would feel like a useful member of the family, not somebody who brings mostly troubles. Again needed some of mom's participation. Very little. Just say “Michael, please go to the store” Michael should write a shopping list and take money. When we come back mom should sincerely thank him and show where to put the goods we bought.

During those trips Michael learned a lot-how to shop properly, how to do payment, how to behave in the store. He even took pictures in the process. Lately we could make a PhotoBook about shopping rules…..but a couple of times mom showed her unwillingness to participate. She  seemed not happy with our activity, probably thinking that those things are not for Michael. Without her involvement the main idea was lost.

“Michael helps his mom with housework. I help him to do that. We both have fun , but the whole process is happening under idea “Michael is Mom’s helper”...but Mom did not want such a helper  and the whole idea would not work

Every trip to the store Michael could learn new things, but after a couple of trips Mom sent us to different shopping- to a video store to get more videos for Michael and take his little sister along-babysitting started instead.

TRYING SOMETHING ELSE

Then I decided to try something else. I don’t give up easily

Michael and I went to different fun places and took pictures there. We made a photobook from those pictures with explanations of activities and addresses of those places –a kind of  a “ travel guide”. Michael participated a lot . He is a great speller and did all the writing. He cut and glued pictures.

I tried to send PhotoBook we made to his school hoping a teacher would make him feel proud of his work,  but mother didn't cooperate. I only needed to sent a PhotoBook to school and asked for Michael reaction. Did he feel well that his work was presented in class? Mom forgot to sent a book or she forgot to ask what happened in class. Her answer was “Talk to Michael. I don’t know where a book is”. She had no interest

LEAVING THAT WORK

Eventually I left, although it was upsetting, but to stay was even more upsetting. I saw so many possibilities for improvement. It was so upsetting that such a great smart boy spent hours in front of the computer staring at titles running back and forth while he could do many other useful and interesting things-regular things that other kids do. As usual I asked the agency to advocate. But agencies always take the parents' site. Parents wanted very much for me to stay, but mostly carry a role of babysitter who helps parents instead asking them to do things for their child

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MICHAEL THE SECOND
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LITTLE EXPLORER

With the second Michael we met at Sunday autistic program. We had a one to one ratio there. I worked with a different boy, but Michael attracted my attention all the time. I called him “a scientist”.  He was constantly busy exploring the environment. Unfortunately it was not much there to explore as most kids had pika (take everything in mouth), so the room was almost empty. Still Michael diligently explored what was available around-tables, chairs, closets. He accompanied his explorations with sounds “tu tu tu” or “du du du”. From time to time he came over to the staff and gave a hug. He never hugged children….. Michael was extremely cute although he didn’t look like he was 10 years old. Compared to Michael the First Michael the second looked like a little child-very tender and subtle-very white almost transparent skin, huge blue eyes and a child’s facial expression. Day program like any other program  doesn’t give much opportunity to study a child better. Everybody is busy trying to “go with the flow”-food and entertainments” are main concerns of such programs.

I was curious what would happen if I gave Michael many different things to explore. I wanted to work with him individually at home. As my boy grew out of that kids program I thought about working with Michael next year and also wanted to work with him at home . When I met with his mother I told her from the beginning that I’m not interested in babysitting  a child. I need to work and see the progress. Mom was delighted. She said that this is exactly what she was looking for. Working as a speech therapist in school she wanted all her boys (there were 2 younger brothers) to be busy with meaningful activities. She showed me huge amount of kids books and games

I got inspired and immediately agreed. How could I not if finally I’d get parents support and have a parent who was  a professional. Together we could do a lot. I asked mom for help in  observing  Michael in school.

IN THE SCHOOL

It was a very nice small school in Manhattan using ABA technique. Everybody was polite, smiling and helpful, ….but most of my questions remained unanswered. The worker who did ABA with Michael couldn’t explain what was the purpose of any exercise she did with him. She sent me to the main teacher for answers. The main teacher sent me to a program direction for an explanation. Program director got some papers, but she was not sure and said that she had to specify some details with the main teacher first.

I returned to Michael. He was sitting in the same place, with a lovely expression on his face staring in the space. The teacher expropriated his chewing device which he chewed nonstop and so Michael obediently did what should be done. Teacher explained to me her way to check if Michael was there with her or somewhere far away in his own universe. She asked him to touch his nose. He obediently did. From time to time he got up and gave a hug to the teacher. Mom explained to me that hugs were the effect of some of the medication Michael took. I communicated with a couple of therapists in the school as well, still trying to find out if there is a bigger goal for every assignment Michael did, hoping that current exercises were just a step of a graduate process which eventually would bring the desired result. Well, nobody was willing to discuss the process returning me to the importance of the current task.
 Unfortunately many professionals and other workers work hard with a child for years and years without getting any visible results. Often people on different programs a child attends seem to have the same goal in mind (as toilet training or eating/dressing independently), but because everybody works on their own, using their own technique or approach a child is not progressing. Such an approach has an explanation “We are working on it” . Everybody is working……and seems like they could do it  forever.

Besides, sharing information is not accepted and asking about information seems like a bad manner. Once at the beginning of my work in that field  I was walking with a child outside  and met a woman who was delighted to meet a child on a street. It came out of his teacher at school. I decided to use that chance to my advantage and started to ask her what they were working on with the boy at school. The answer was kind of oblivious “we do stuff” . I wanted the details of “that stuff” and kept insisting on more details as just “stuff” till I realized that it’s “a top secret information” which cannot be shared with anybody on the street. You need to know The System not to ask such inappropriate questions. Eventually I’ve learned.
Still the situation is very upsetting-so many people are “working on it” doing different things with the child , teaching a child different stuff and everybody is on its own and more often than not a child can stay on the same level without any progress and sometimes even regress in spite of so many people involving in that child progress. Once I shared my concerns with my bosses who are much higher on the System pyramid and more aware of things.
 Their answer was simple
- “Don’t worry on paper everything matches and fits to the goal”
 I was not happy with an answer
- “But what about a child? Can something be done to change that unproductive system?”
-“ O, it's a very high political issue! Nothing can be done!”…
Well…Money, Power…against that little boy with an absent look at his face…..too uneven forces….

FIGHTING the SYSTEM IDEA

With Michael I decided to try “fighting The System” in the only way possible. Parents!. Parents are the one who can do the most for the child by “being on the top” of all that army of people who work with their child. I decided to expire Michael’s Mom. She should be the captain of the crew which would take “our boat” to the right direction. So, I offered it to her, explaining that I’d prepare everything for  her, I’d do all the work. Her role would be only to tell different people what they should do for her son in order to unite them on common goals in order to get the desired result.

But at least two of us should work together-then we would get the result we want. Mom seemed to agree. If I would be more attentive to studying her reaction! But I was so inspired with the idea considering the fact that the mother was an experienced professional in that field that didn’t notice that mom agreed without any enthusiasm. Probably she just couldn’t reject loudly the idea which would help her boy.

However Michael's reaction was different. After that conversation I gave Michael a meal and he gave me such a look staring straight to my eyes for so long I could not even bear. Everybody knows what a problem eye contact is regarding autistic kids…..and here was such a staring…
It seemed Michael supported my idea!!!!

MICHAEL’s HOME SITUATION

The most upsetting fact in Michael's situation at home was the absence of any freedom for him. As soon as Michael returned to school some caretaker took his hand and held him till he went to sleep in some close space that looked like a tent. If one caretaker changed another one Michael was passed from “hand to hand”. I felt that when he finally got to his night sleep “tent” he was happy “Finally, by myself!!!”

Michael was considered dangerous to be free as by himself he immediately started to run around and smash things ... .I'd probably do the same if I’d get a chance to be free from constant “imprisoning” by adult hands. By that time the family moved to a bigger apartment and there I could start my plan “to change Michael’s life” drastically by giving him some freedom to be. I told Mom that Michael needs a separate room, an environment where he could learn the right behavior, having a possibility of moving by himself so later that learned kind of behavior could be spread for other areas of living.
Mom seemed to agree with the theory, but was not enthusiastic to do anything about that. On the contrary she tried to decorate her apartment, even bathrooms, so every part of her new home was “in danger” from Michael's constant curiosity.
 Solution? Watch him better….

MOM’s OBSESSION with HEALTHY FOOD

To make that long story short my ideas have usually failed. Eventually, I got a room for Michael, but it didn’t help. I could not help Michael although both of us wanted that a lot. Michael tried to cooperate as much as he could. He made a lot of progress. He did what I asked him to do, he started to communicate with photos I made for him, he obviously could be a toilet trained child. He behaved well in his room without destroying things there. He never left the room when I stepped out. He started to initiate different activities. He started to learn new things, etc, etc.,

What for his Mom!….well…there was not any progress there. Mom resisted any changes which would obviously help her son as well as other kids. For example her total devotion to healthy food, which looked like an obsession. The house was full of  different stuff from the healthy store as if it was a small store there. A few types of nuts, numerous types of cereal, endless packages with different snacks. Meal preparation took hours . A meal itself was The Huge Event because it consisted of varieties of different kinds of food. Poor Michael should follow the good manners of eating different types of food from his plate with different utensils. As Michael's natural tendency was to use his hands for all types of food which was put in front of him, everybody who cared for him tried to follow manners Mom insisted on and meal usually turned into a hard chore. As it was a few courses of dishes it took an endless amount of time to finish. Mom was in the kitchen serving dishes, some volunteers were present for 2 other boys

It took me a lot of time and energy to convince Mom to adjust food to Michael's needs and capacity, so he’d  start to eat independently using just a spoon. Mom  started to do it only during those 2 days I was there. The rest of the time everything was the way it usually was and then the whole idea of Michael learning independent eating didn’t make any sense.

FAILED IDEA

My initial idea of Mom being a conductor of our orchestra, so everybody would do things towards the common goal started to shrink. A few times after the long explanation I tried to tell her why I’d like to leave my position and just continue working with Michael at the Day Program. Mom “made a tantrum” that if I’d left she’d feel herself a not worthy mom. Every time she again asked me what she should do in order I’d continue with that big idea and promised to do it…well....without ever intending to do that. So, the situation really was very weird. A person in a position which is usually treated by parents as a mother’s helper tells mom what to do, considering that Mom herself was trained speech therapist. Very weird situation

 I was aware of the most popular exciting programs for autistic kids , even brought some good literature for mom to refer to and even started a few consultations online with some professionals from different countries about helping her boy. It was very difficult for mom to resist……but probably she could not go against herself and do something so out of ordinary. Besides probably she got advice from people she shared her issues with. So although she asked me not to leave, promised to do what I asked her to do for our work with Michael, in reality she sabotaged all our work, breaking my plans for the day with her own ideas , even insisting on babysitting her younger boy.

BABYSITTING

The younger boy was a tough one, a real boss in that environment. Not with me however and I planned to involve him in our work. We did make some progress on that. He started to be helpful, because he was a very curious boy, but was allowed in Michael’s room. He started to give up his bossy position as he liked to spend time with us and participate in our activities. When I told Mom that on the weekend she could do simple activities with all 3 of her  boys, she thought that she had to give a treat to her other boys for playing with Michael. But in our reality it was a privilege for her younger boy to play with Michael. He could get it only if he behaved well.

The day Mom told me to babysit that boy (in front of him) I gave up and the boy immediately took advantage of it. Michael was left to be in his own world and his younger brother made me play with him all the games he wanted the way he wanted. He even boasted to his Mom about that.

I still continued staying there, hoping for the miracle to happen and  leaving my plans for Michael more and more. One day the supervisor from the agency called me telling me that Michael's mom was complaining that I created a stressful situation in her home and the supervisor suggested that I come to the office and discuss the situation.

MEETING with AUTHORITIES

And we had a meeting. With a case worker, supervisor and psychologist. Not much detail was provided of the nature of the stress, just the situation should be fixed. When I explained my side of the story all 3 of them were shocked.

 I was telling Mom what to do??!!  I tried to cooperate with the parents????!!!!... Unbelievable!!!…Scandalous!!!

They found a situation too “launched”
The psychologist even made for us a visual aid putting me on one side of the paper and parents in another part of the paper  and agency in between.
-“But where is the child?” ,   the supervisor asked
“Child is everywhere”, -the psychologist responded .

As I knew from my experience that in any situation an agency always takes the side of parents, the psychologist's diagram was not helpful. But I was surprise to hear officially,  that cooperation with parents on helping their child seems not only encouraging, but rather “not what we are doing there”

In the end the psychologist made a suggestion to resolve that situation. Why I’d not start to work on the goal of “brushing his teeth independently” ?
The process of brushing Michael’s teeth was like that. One person held Michael's arms and tried to keep him in his chair,  while Mom tried to hold his head and brush Michael's teeth while Michael tried to prevent it by biting a toothbrush. Pretty tough procedure before sleeping.

So, I refused that life long assignment which could be defined as “we are working on it” and the goal could be for maintaining my own income. Meeting was over. Administration had nothing more to offer. I made a suggestion that Mom takes  her own initiative to help her son and then I’d cooperate with the agency’s help. Nobody responded

“FINDING THE TRUTH” SITUATION

But it was not the end of the story. When I came there to take my stuff Mom completely denied any complaint to the agency and blamed me for abandoning a child  and all her efforts to support my plans. Lately I’ve learned from another worker that mom really complained

Then I told the agency about that,  trying to find out whose information was true information. My bosses didn’t cooperate on the “finding the truth” process. Then I contacted the main boss trying to clear the situation. He said that it’s very sad and it was not his opinion, but other staff believed that I was not an appropriate person for that kind of work, so the agency could not give me any other cases any more.

Then I wrote to the Mom that she should clear the situation with the agency as because of that story I not only cannot help her child, but not any child at all. We should fix it , so I could continue helping kids. Mom did not respond
Then I wrote simultaneously to mom and the agency to find out about the complaint  and  somebody from the agency called me.
She said that if I’d continue harassing a mother I’d be arrested

The boss of the department wrote to me that he is aware that some parents prevent child’s progress and many enthusiastic workers are suffer from it and the only advice he had for them is “Do your best” which means in such situations “ if you want that job-keep your mouth shut”

Everybody understands that parents should be treated according to situations because there are many other agencies which would be happy to take care of that child and all the money attached to a child  would be moved away. And those who forgets about that have “ no place among us”
ON A DAY PROGRAM

Well, I could not continue working with Michael on the day program any longer as it was the same agency and I could get in trouble, considering their attitude. Michael was given to a young girl,  who almost graduated from a Master program in that field as a speech therapist.

She was a young career oriented girl and her concerns were about her future as a professional. She asked me for some help with Michael, so partly he still considered me to be mine.   Michael often approached me  with his “tu tu tu” or “de de de” trying to ask or to tell something. His tone of voice was complaining . I do hope that it was not a question “why you don’t play with me any more?”
What could I answer him?  I couldn't handle this system

FREEDOM for MICHAEL

Soon Michael died. It was said, he died at night in his “tent”.  Girls-staff cried. I felt relieved. Michael was free. A special person came, giving us instructions on proper mourning. Coworker showed me Michael's photos on the Internet. I was surprised as when we asked for permission to use photos for work,  parents refused. Now his photos are  all over.  Parents asked for money as they spent too much for Michael's life and especially death.
I asked authority to organize a small photo program for Michael’s name, but eventually I gave up trying. I devoted to him my book about photography helping special kids