GIFT for MARY

                Castle Dream 3/29/01

I am trying to reach a top of a very sheer (vertical) slope covered with brick-red Mud. I know that I have to be there...so I start to move up and I fall down head over heels. I get up, move up again and I fall down again, then again and again, every time a little bit higher . Finally I see that there is an another way exists nearby, roundabout, gentle sloping, much longer, but more reliable. There are some people there and they have something looks as a sleigh and they are trying to help each other to move up somehow with help of that sleigh. They wear long raincoats with hoods , the same color as mud and they look as loaded with their worries and concerns. I realize that although that way is much longer, but it could bring me to my goal. So, although with a feeling of big regret I leave my first way I go to another. I couldn't see the top any more, but I feel that finally I will be able to reach it.

                The Castle
                (a story from  Stephen Shore’s book)

Imagine that you are trying to reach a young prince locked inside a huge castle.  First, you must cross the wide moat, which is filled with hungry alligators.  Once across, you must find a way into the castle.  Arriving inside you see armed guards everywhere. 
You must find your way past the guards as you look for the secret stairway up to the highest tower in the castle.  Should you find the way up, you must search for the correct key to open the lock.  With key in hand, you may open the heavy door.  Inside you see the child looking out the window. He does not turn to greet you.  You may walk over, and being ever so careful not to speak to the child or even touch him, you may stand beside him and look out the window.  And a while, you may speak, in quiet tones, about what you see when you look out the window. 
If you have been careful and respectful enough and have noticed the “right” things as you looked out the window, the child may turn to acknowledge that he is no longer totally alone.
You will spend a long time in the tower, often longer than you imagined.  Then a day may come when the child notices the door and leads you to it.  You open the door.  The child lets you hold his hand as you creep down the castle stairways, past the guards, out the door, across the moat and into the outside world.  You will spend a long time exploring together.  Maybe the day will come when the child, who has now grown older, says, “Farewell, I’m ready to explore with other and by myself.”
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                MARY

 Mary is an autistic girl with whom I work in a one of residences. She is a charming creature with curly hear and lovely smile. Beautiful and funny. She is peaceful and very gentle toward the people, but very cruel toward herself. Whenever Mary gets upset she slaps herself severely on the cheek till it gets dark red. She already hurt her eye and ear. To avoid that hitting Mary arrested herself. She carries both her arms in one sleeve of the shirt all the time. She eats that way and lives that way and frees her arm only for hitting herself when she cannot cope with frustration.

When I worked with Mary I always imagined her  with her two arms free from sleeve, doing something she could enjoy and know that Mary would never use her arms for hurting herself. I felt that she was capable of doing that but I didn't have enough proofs to convince people. That is why I realized that I need some patience to wait for the right moment to convince people ( in what??)  which eventually help me to free Mary's arms and who knows maybe...maybe someday those hands could hold a camera...

Why do I have such a hope? First of all I'm still believe in Miracles, second when I tell you about Mary it is possible that you also can understand why I believe in that Miracle so much

I met Mary when I just started to work in a residence for autistic children. I have to apologize for showing my coworkers from not so good side, but my goal is to tell you everything I know about Mary and I cannot do it w/o talking about her caregivers..
When I first saw Mary she was sitting on the floor in residence's living room turning around a piece of cloth in her hand and looking nowhere. ''What a cute boy !” I thought, but later it turned out that a cute boy was 19y.o.autistic girl Mary. When the supervisor showed me the paperwork, Mary? who finished her lunch first? came over to us and sat on the floor nearby. She obviously was in a great mood. She established solid eye contact with me, smiled and looked at me as if she was flirting a little bit. Every time she looked at me I told her 'Hi, Mary'' It turned out that Mary is nonverbal and very low functioning. Somehow we continued to exchange smiles
 Then when we did a fire drill and when it was time to go back into the house, Mary started to scream. Two workers  started to drag her back to the house by force. She resisted and continued screaming. Then one worker told me '' Go in. It is because of you. Go in.'' I went in and Mary followed me. She clung to my arm. Worker pushed her into the house. I didn't see Mary any more. Worker said, it is because of her mother. In that situation I couldn't understand anything. I was confused. I thought her mother abused her and now Mary was afraid of me. I questioned a worker. ...The story was like that. Years ago Mary's mother abandoned her and now every time a white woman appears Mary thinks that her mother  came to take her from there...

       Mary is very restless. In spite of big amount of medication she is still restless. She wants to move around. Mary's freedom restricted by living room and a part of kitchen which joins with living room. Depending on the staff being present or on the staff's mood, Mary has different amount of freedom every time. Sometimes she can move from one part of the floor to another, change couches, sneak to the bathroom to get some water from the commode or toss a piece of cloth in her hands...but sometimes things are very hard for Mary. she is not allowed to have anything in her hands and she is not allowed to leave ''an assigned place''. As soon as Mary realizes that she gets out other tools she has to entertain herself as clicking with her tongue. But it is ''no no'' activity as its disturbs TV watching. Then Mary have some more fun in her disposal as rocking herself, but here Mary doesn't know where to stop. She rocking herself more and more and finally she produces a terrible noise, which produces a terrible verbal prompt from the staff which makes Mary to stop her activity. She sits quietly for a while probably still feeling the inertia of her rocking inside, but when it stops Mary is ready for something else. Suddenly she gets up, quickly moves toward TV, shot it off and gets back to her place exclaiming triumphantly '' Ha...''  And so on and so force.
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                '' Behavoir Plan for Mary''
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      Officially Mary was not mine, another worker took care of her, but a couple of times I brought her something to play with. One thing she rejected, but she took Barbe. I offered her to play with Barbe and with a piece of cloth, but she didn't get an idea. She couldn't do much with things, just rotate them in her hand. However, when I gave a choice she chose Barbe over a piece of cloth. It meant that Mary didn't mind against new things or she just could understand things about life. Everybody understand that have Barbe is much better then have piece of old cloth,but soon her caregiver stopped those experiments. According to ''behavior plan'' designed for Mary, every object which gets in her hands should be removed. Why? I don't know. Asking questions was inappropriate and somewhat dangerous activity in that place.
      
       One day our boss Fred came to work with me. He got complains from all over that I don't use ''firm voice'' with kids and spoil all of them. Probably Fred wanted to observe me and gave me the whole freedom. Of course I used it immediately. Trying to stick to ''behavior program'' Fred was very firm about keeping Mary out of bed till 9p.m. I knew that regular shift let Mary go to sleep right after supper. So, the same was this time. We even didn't see as Mary disappeared. Fred sent me to bring Mary back to living room. When I came in the bedroom Mary slept already. I was very sorry for her. I didn't see any sense to keep her out of bed if tomorrow she would do the same. But I couldn't tell on my coworkers about this. So, I tried to wake Mary up. Finally she got upset and as she was only in pajama with her arms free she started to slap herself. I got so scared that I grabbed a piece of underwear and shoved it to Mary's hand. She stopped slapping. I stroke her cheek and started to ask her to come with me to another room. I took her covers away so she would realized that she cannot stay in bed any longer. Finally Mary realized that I didn't live her alone and went with me in living room. As we came there and Fred told her to sit, she started to protest screaming. Then I realized that I was carrying her linen in my arms. Poor girl decided that I'm going to put her to sleep in another room and got upset, when it didn't happen. So, I quickly shoved her a toy and she calmed down.

 I asked Fred why Mary slap herself and how it happened that she arrested her arms. He said that she arrested arms because she slaps herself, but why she slaps herself nobody knows. Fred has been working for 15 years in that organization, but he has no idea why Mary slaps herself she just mentally retarded and autistic and there is nothing more to talk about. Still although I felt that it was already too much for one day, but I asked Fred why he took everything away from Mary's hands. The answer was that it said in her ''behavior program''. To discuss or God forbid to criticize ''behavior plan'' is better to resign immediately. We ''direct care workers'' has to be as soldiers to carry orders of generals without any discussions. I wanted to continue to work there, so I stopped asking questions feeling happy that I don't have to take care of Mary, so I don't have to carry that terrible ''order''  to take everything from Mary's hands and let her hurt herself.
    
     When later I gave Mary a shower and started to change her clothes as soon as her arm got free she started to slap herself   So, I started  to stoke her cheek with my hand, while removing her hand away. Helped. Next day  out of the blue Mary just took my hand and started to stroke her cheek. She obviously enjoyed it.
 
                A Bottle of Pure Water

      After that it became very difficult for me to restrain myself ''or to sit on my hands" and a bold idea came to my mind. The idea was to teach Mary to drink water from the sink, not from the commode in the bathroom what she usually did, helping herself. So, whenever Mary sneaked to the bathroom to get water, I took her out, brought her to the kitchen pour water in the glass and gave her, explaining that water for her was here and not there. I did it a few times.

     When I came next weekend for my shift and children came from school Mary approached me took my arm and lead me straight to the kitchen sink. I was so surprised. I gave her water. But the same moment I heard my coworker who was not happy with what happened. She said that yes, Mary drinks water from commode because ''it is her autism'' and I shouldn't do anything about that. It was a little bit difficult to understand that some things which were refereed as ''her autism'' we had to fight fiercely and other thing just ignore.......but later it seems I had some answers about how to relate to ''it is her autism'' issue. When next time I was in the kitchen, Mary came over, took a glass and asked me to give her water. I was so impressed that couldn't held my feeling to myself and gave Mary very loud delight. At the same moment I got a lecture from the living room that I must not do it, otherwise Mary will wet the bed and overnight shift would have a lot of laundry to do and something else and else. In short. I got a big disapproval from my coworker........after that Mary never came to me for water and helped herself her usual way.

      Being a new member of a team I didn't have much of rights to speak my mind, besides I was sure that my coworkers wouldn't like what was on my mind, but I wanted to continue to work there in order to be with Mary and other kids, so I just said that I was sorry and my coworker was probable right....but in my mind I thought "O, my God what you call her autism is really your laziness to get up from comfortable chair and TV watching and give Mary a glass of water. It is your Fear of extra laundry in order not to let Mary to take that water by herself.".....But thank God you cannot stop Mary from going to bathroom and thanks God there is some water there, because Mary take a lot of medications to conquer for restlessness, what makes your job easier and Mary's mouth is always dry from  that.

I was very upset that our '' water lessons''  with Mary came to the end. But Mary probably thought another way. It was a very long weekend and I worked with a lot of different coworkers. Another woman came which I never met before and I was very surprised to see Mary with a bottle of drinking water. I was sitting nearby and suddenly Mary passed me her bottle of water. I didn't expect anything like that. I never saw Mary giving something to anybody or communicating with anybody except of stealing food from other kids. I didn't understand what  Mary wanted and just made pretend that I made a sip from her bottle and passed it back to her. She made a sip and  passed it back to me. We did that for a while. then suddenly Mary gave me the bottle, stood up and left. I went to see where she was. She drank water from the commode. I was bewildered. What was that about? Then I realized that Mary wanted to tell me that that battle belonged to me, that she has plenty of water in the bathroom. Mary gave me some lesson. Difficult to say for sure ,but I would like to believe that Mary wanted to show me her gratitude by sharing a very valuable for her thing - A Bottle of Pure Water.               


                Shoplifter
                ---------------

       I'm a shoplifter. Can't explain how it started, but it somehow difficult to stop. Whenever we do shopping I usually shoplift a little bit of Chocolate Raisin and finish it by the time of cashier. It is a long story to analyze why I do it and why I cannot stop doing it, but I believe that many shoplifting happens just because things are here and you can take them w/o giving it too much thought. That is why I called Mary '' a shoplifter’‘.

       When I worked my first shift after we finished to feed kids I poured some milk for myself, but at that moment something distracted me and I put my milk on the top of refrigerator. A minute later Mary came over and grabbed my milk .
I was so surprised , tried to take it away from her mostly by persuasion (I didn't know yet what she is capable of, what her reaction could be). ''Mary, it is not yours, it is mine. Give it back to me.'' She gave it back finally...empty glass...as nothing happened.''  The whole incident was very funny, but later I realized that was not funny at all.


Mary is also known as a thief, because she ''steals'' everybody else's food. I'm sure that she is not really aware of what she does, because she just simply helps herself.  In compare to my Chocolate Raisin shoplifting , Mary stealing is just unawareness of ''social standards'' . But for that  she is being punished by very cruel  way. Staff gets very angry at her, she gets upset and slaps herself severely on the check.

     One at my first times there it was an incident when Mary tried to steal somebody's food and staff member was very angry at her. She dragged her out of table and Mary started to slap herself severely. Then staff member which was supposed to give me a training said  ''You see, this is she! This is about her!'' I thought to myself '' Maybe this is about you, not her''.
 
    I was fascinated how Mary treated other people. In spite of the fact that she has a very bad sight due to her cheek slapping she is not clumsy at all. There is a couch there usually occupied by two boys in the corners. One is blind Roberto and the other one Jerek who usually just curled himself up in another corner. Mary bumped herself precisely in the middle, between them. She never sits on somebody's else parts of body. She also treats her peers with big surprising delicacy.  If Jerek or Roberto are trying to get on Mary (to put their heads on her lap or something like that) she never gets irritated, she just pushes them away from her space. She does it very gently as like saying '' Again you bother me, silly boys! Leave me alone, ."....but Roberto continues to do it over and over, accompanies it with his lovely smile.  It was such a difference with the way, Mary herself is treated by people. If only people could treat her the way she treats them. If only they could SEE it with their normal sight.....
    
One weekend I wanted to give Roberto an orange and of course Mary came over instantly and tried to take from Roberto. So, I started to give them in turn, explaining what I was doing '' One for Roberto, one for Mary''. Mary waited for her turn pretty nicely and patiently. Another time I did that for three of them Mary, Roberto and Jerek and Mary didn't try to grab somebody's else piece or stole from me.

      Once we were on the VAN having a ride and I gave Mary and Roberto snack. As always Mary managed hers very quickly and tried to help Roberto with his. I didn't let her takes Roberto's special with cheese, but I had another plain one and I gave it to Mary. She started to eat, but then gave me the pack to hold and just used it from my hands. Probably she expected me to share that extra one for her and for Roberto. I cannot say for sure about Mary's intentions, but my strong believe is that Mary is a very beautiful kind and sharing person. She is open to people and to life she is willing to learn new things.