Dramatic Dental Hygiene

Adriana begged me to brush her teeth with her.

I believe Adriana hates getting her teeth brushed, but begs me to brush her teeth because she likes the attention. When it comes to the part where the toothbrush enters her mouth, she wants no part of the hygiene ritual. Today she screamed a care worker’s name while I patiently faced her with the toothbrush. We have the difficulty that she won’t open her mouth to allow her teeth to be brushed even after she’s claimed that she wants her teeth brushed and/or she shakes her head from left to right so that it is impossible to brush her teeth. For this reason I make her do “toothbrush exercises” before I consent to brushing her teeth each day. These exercises require her to open her mouth for 5 seconds straight without turning her head.

Today a cleaning lady passed by the door and looked in. We were in the middle of teeth brushing and Adriana was being especially difficult. When I saw the cleaning lady, I said loud enough for the woman to hear: “Oh, let’s show the cleaning lady how you brush your teeth!”

The older woman kindly stopped and looked in on us.

“Open your mouth!” I commanded with enthusiasm.

I could see the desire to please in Adriana’s eyes. She had a look of pride as she held her mouth open despite the fact that she didn’t want to. Quickly I put the toothbrush in her mouth and then began to count, “1,2 …”

Seconds one and two are usually the best two seconds when I can actually hit some surface area of the teeth.

“3, 4 …”

Now Adriana began wagging her head back and forth, slowly at first but then the momentum built. The more she wags her head, the more uncomfortable she is with the toothbrush in her mouth. Her lips were closing. I couldn’t see if I was doing good work with the toothbrush at all, but I was hoping that I was managing to at least sideswipe one tooth. By now she was starting to moan.

“…5 …!”

I breathe out and smiled as I removed the brush from her mouth.

“Okay,” I said as though it wasn’t that dramatic of a five seconds. “We’ll take a break and then we have some more brushing to do on the bottom.”

Adriana didn’t look excited.

“Well brush for five seconds,” I reminded her, “and then we’ll take another break.”

I looked at the cleaning lady’s face. She was laughing. Our efforts at dental hygiene were so pathetic they were humorous. I think that Adriana wasn’t aware of how poorly she was doing, and my upbeat attitude about the whole event brought added layers of humor.

The cleaning lady tried to encourage Adriana and help make my work easier. “I brush my teeth every day!” She told Adriana. “It makes our breath smell good.”

“Oh, yes,” I chimed in, “And it’s healthy for us!”

“Yes, yes!” the cleaning lady backed me up. “Well, I’ve got to mop the floor in here, so I’ll see ya around...”

Separating the Boys From the Girls

So a British Charity has arrived that wants to work with Marin Pazon. I am so glad they are there because I don’t feel so alone when they’re here. Like me, they want so much more for the orphanage only they've come with a whole team ready to do something.

Today the woman who leads the group came in the room where I was feeding Lucica mashed potatoes for lunch and sat down across for me.

“We’ve noticed that some of the boys are living in the girls quarters in the orphanage,” she began.

I nodded. This had bothered me, too, in the beginning, but after initially noticing it, I had gotten used to it.

“We don’t approve of this and we want to make it completely clear to the director that this is unacceptable.”

Okay.

“We think that if all the foreigners get together on this and all say the same thing, it will motivate the director to change things.”

So she wanted me to be clear that I disagreed, too.

I honestly thought about what she said, and following after the Romanian way, I didn’t hesitate to bring up any oppositional thoughts. If I was going to be with the British folks on this, I wanted to be with them 100%.

“I have one thought,” I explained, before agreeing. “I’ve noticed that they’ve put some of the more passive boys with the girls, and I’m worried about how the other boys will treat the more passive boys if they are grouped together.”

I thought about this comment later as I was walking home, and realized that really I’m thinking of Vasile, the small 15-year-old boy who is often grouped with the girls. I do see him get hurt by the big boys, and I am afraid of anything happening to him. I’ve never noticed him mistreating any of the girls. I only notice him being safe.

The woman told me, “That’s a different situation entirely, and we need to start with the step of separating for boys from the girls.” It seemed to me she wasn’t concerned for the small boys as much as she was concerned for the small girls. And it seems that if we are going to begin protecting someone first, and we should have to choose, it should be the small girls.

“No matter how passive some of boys are, they are still boys,” a young British girl told me, as she listened behind her leader. I agreed.

The British woman continued and brought up some of the girls who had been placed with the boys. She brought up the fact that many of the male staff sleep at the orphanage and have care of the girls that had been placed with the boys. I cringed. I knew what she was getting at. Quite possibly our worst nightmares had already happened.

Yes, yes, yes, I agreed, and I would support them.

Outside

This morning I rode in a car with two ladies from Canada and another American to a Catholic convalescent and disabled children’s home. Some of the kids from Marin Pazon (the orphanage I volunteer at) had been relocated in the past year to this new center. The five children who were moved were the ones who were the worst off at Marin Pazon. They sent almost all their time alone in cribs.

I would know five of the children: Roberto (who eats EVERYTHING), Marian (I think he has Fetal Alcohol Syndrome), Maria with cerebral palsy, Blind Aurel, and Donut (with hydrocephalus). The home was big with a cross in front and when we arrived all the kids were outside under shaded awnings. A few elderly people from the center were also outside. With only ten children, and three or four staff on hand, it was obvious this atmosphere was centered on the children. Nobody was yelling. The staff were all patiently and lovingly working with the children, and the children were OUTSIDE! Aurel, who was always laying down in his crib at Marin Pazon, sat upright in a stroller. I’d like to think that when I grabbed his hand, he knew it was me, but can only hope that this was the case. As he felt my hand, however, he moved to get up out of his chair to walk, but he was strapped in.

“Can I untie him,” I asked one of the staff, “and go for a walk with him?”

“Sure!” said the worker who continued feeding yogurt to one of children.

I untied my little Aurel and we walked. I noticed right away his shoes were strong and sturdy. Also, he was physically stronger than last year. That signified that people had taken time to walk with him. He was no longer confined to his crib. He loved walking, and, oh!, the change I saw in this little man. He LAUGHED and GIGGLED as we walked and he felt the sun on his face! He was the same boy, who preferred being carried and swung around, despite his weight and age, but he was a happier, freer one. When he got tired he just wanted to sit on the ground like he used to do last year in the halls of Marin Pazon. As I rounded the corner of the building with him, tears collected inside me and rushed toward my eyes. This Catholic home WAS TOO GOOD TO BE TRUE!

The five kids here, sitting in the sunlight, properly dressed, feed, no longer sitting in their own urine and feces were the children who had been the MOST HOPELESS, THE MOST ALONE, AND THE MOST ABANDONED at the orphanage! God had taken the ones we thought there was no hope for, and brought them to “a land flowing with milk and honey.” I cried out of awe of what God had done, and went on to imagine how safely, how warmly these children could continue their days – outside of the city, in a spacious home with green lawns, toys, and LOVE.

The sister who attended the children smiled like a child herself, without worry or fear and spoke to us in Romanian. “I’m actually from Paraguay,” she told me.

I gasped with delight! “That means you speak Spanish!” I exclaimed.

“Yes,” she continued, “I also speak Italian. I worked with handicap children in Italy for thirteen years before coming to Romania in 2007.”

Her Romanian was very good, but she declared that it was such a difficult language, using the Romanian term ‘dificil’ (from Latin) to describe the language.

I looked in her warm eyes and wanted to tell her so much about my faith. I sensed she felt too, this love of God and I wanted to celebrate with her, the love that meant so much to both of us.

Roberto was there, and all the sores that had covered him for lack of care were practically gone. He was no longer dressed in his straight jacket, but in a Spiderman shirt with matching shorts. He used to wear the straight jacket because he would always eat his clothes and his diaper. A staff member noticed he had bitten through his Spiderman shirt at lunch. “We’ll just have to keep a better eye on him,” she cheerfully reasoned.

During lunch I remember looking at Donut (who has hydrocephalus) lying with his enlarged head in a stroller. He looked back at me consciously. I smiled slightly and his eyes gleamed with great joy. I realized as we looked at one another that his joy surpassed mine which caused me to smile back all the more. He erupted with laughter. He has SO MUCH to give this crazy world. His laughter reminded me of the thought that he must know Christ in a way we don’t. Where does his joy come from when he has spent more than sixteen years alone in a crib in constant pain? If anyone knows the heart of God, it must be him. He has received so little but gives so much.

The catholic sister asked me when I would visit again, which I took as a sign that I was invited to return. I considered that they didn’t often probably get visitors that stayed very long, so it was probably a treat to have someone come. I wanted to come again, even though my presence didn’t seem as necessary. I would be one more pair of hands to HOLD the kids. For all the attention they got, I still felt that there could be a little more HOLDING. One can’t over-love a child, right?

So all these little details really tell us something about God. People started praying for these children in inhumane conditions long ago. Later (two years ago), an American friend of mine saw Donut in his crib at Marin Pazon and it caused her such agony. She couldn’t find it in her heart to return to the orphanage because it was too emotionally disabling. People were usually afraid to touch him or pick him up. I was, too, when I first saw him. And here he is safe, and leading a life outside of the noisy city in a peaceful, loving, catholic atmosphere. If I had known that God could answer prayers this way, then I would have asked for more. It seems to me, that when you pray for widows, orphans, and abandoned people, God hears these prayers better than others. I don’t know how he is able to take the most hopeless cases and turn them around, but apparently He does.

Oh, God, take the most hopeless part of me … and turn it around.

Adriana's Tantrum and The Bad Word

Today I arrived at the orphanage with my guitar and backpack. I played some simple children songs for the girls while they waited to go outside. They love the guitar. Ana Maria wanted to touch it badly, but the staff worker reprimanded her consistently, telling her to sit and listen or she’d go to her room.

When the girls left to go outside, as usually happens, many have to be coaxed, if not forced, to leave me. Since I tend to play games and not raise my voice, remaining with me is often more desirable than going outside where they spend a majority of their time when they’re not in their beds.

This morning Alexandra Sab. stayed behind and I took her into the therapy room, to which I have a key. She wanted me to keep singing and playing the guitar. She is a seven year old with autism who only speaks about twenty words, and so communicated to me that she wanted to keep listening to the guitar by crying. I considered that maybe Alex needed a smoother transition and so told her we’d sing the chores once more and then go into the therapy room.

Once in the therapy room we transitioned well (with practically no tears) by touching the guitar, even strumming it and saying the word “guitar” in Romanian, or actually, by just saying the first two phonemes that make up the word, /ki/.

We went on to do therapy, maybe even for a half hour with a three-minute pause to “play the piano” (listen to the demo mode on the electric keyboard). I thought it’d be nice for Alex to go outside for a few minutes so I looked for the woman who could give us a permission slip, which was necessary to show the doorman. The woman said she’d write the slip later, but didn’t have time now. So Alex and I tried to leave without the slip. The doorman asked for the slip. I told him Rodica didn’t have time to write it and Alex and I would go later if he wanted, but could we go now? His friend (boss?) waved us on and told us to go. We went to the park near by where Alex enjoyed swinging. When a small boy stood nearby, waiting for a turn on the swing, autistic Alex didn’t notice. We made another smooth transition, by using forewarning. “We have two more minutes, Alex, and then we’ll go.” Once we returned I wanted to make sure Alex would leave me without a tantrum, so I tried to bribe her to go into the yard with the other children by offering her small pieces of a candy cane. It worked! Then I found some of the older girls (three of them) and went with them to brush their teeth. This takes a lot more time then you would think.

“Okay, we’re going to go upstairs,” I say slowly, “and get the keys to your lockers.” While we get the keys I have to tell Doina, a 26 year old with MR, not to take a hat that’s not hers and please put it back in its place. “Now we’ll go to our lockers and get our tooth brushes.” First I show Florina all the keys.

“Which key goes to your locker?”

She chooses the right one.

Florina’s locker has been mysteriously broken into, but I pretend to open it with they key anyway.

I feel exhausted telling you all the details. I need so much more patience than I have in my repertoire.

This morning I prayed for the patience that ONLY God has because before I even arrived I felt that my patience was already mostly gone. He must have answered the prayer, because I left the orphanage today at 1:30pm happy. I came with fear and a little patience and I left with joy.

I walked through the step by step with the girls of brushing their teeth, washing their face, and explaining to Doina and Roxana that they could both stand at the same sink and brush their teeth (“This is MY sink!” Roxana said, pushing Doina out of the way). Florina rinsed her mouth out about five times, very slowly, until I told her we were finished.

Meanwhile, Adriana, who can’t walk, was trying to talk to me from her wheelchair from the other room. She was saying, “You and Roxana are going to give me a bath today, right?”

“Da!” I say. (“Da” means “yes” in Romanian.)

“Right now, right?”

“Da,” I find myself saying, unconsciously, because my uni-task mind is occupied with trying to help Florina wipe the soap off her ear. Then I realize I agreed to give Adriana a show right then, and that’s impossible. I tell Adriana what I’ve already told her twice that morning.

“No, I can’t give you a shower right now. At 11am we will give you a shower.”

I was so glad to hear when I arrived that morning that Adriana had spoken kindly with Aurica, one of the staff with whom she often speaks unkindly. I repeat the brushing the teeth routine with two other girls.

Then Roxana and I give Adriana a bath. Here I lose some patience, too. Especially when I try to move Adriana to the bathtub. I realize that Roxana’s no help in this, but I learned this only today from experience. I was holding half of Adriana telling Roxana, “Okay, lift her into the tub, lift her into the tub,” while Roxana stared at me blankly. As Adriana was slipping from my fingers, Roxana didn’t seem to become any the wiser. I had to hold and carry the nineteen year old myself, violating all the recommendations of how one is to lift and carry heavy objects.

As we were drying Adriana off, I heard her say, “I’m going to bite you.” I immediately stopped what I was doing.

“What did you say?” I asked.

“Nothing.”

That was a lie. I was sure of what Adriana had said, and this was a habit of hers. Anytime she said something bad and she was questioned about it, she would claim she hadn’t said anything. With much prodding, she would say things like, “Forgive me! I won’t do it again!” However, when asked what she wanted forgiveness for and what she would never do again, she wouldn’t say.

Now from my experience as a caregiver to people with Cerebral Palsy I have found them to be the most determined (stubborn, if you will) people in the world. This determinedness makes sense to me, because when you think of how easy it is for those of us without Cerebral Palsy to pick up a pencil, and then consider someone who has Cerebral Palsy to the extent that they must concentrate to do the same action, you can see that this stubbornness is a requirement for living. What’s more, it is often exercised daily, hourly, and possibly for the majority of the activities of their life.

In a test of will against a person with CP, I am certain that I will lose. At the same time I can’t stand a nineteen-year-old friend lying to me, so I attempted the impossible. I stuck my ground. I had been putting on her tee shirt when she’d said, “I’ll bite you.” She was now insisting she hadn’t said anything. I assured her, this wasn’t true and we both knew it. I lowered my arms and kept them by my side.

“We’ll wait,” I said patiently, “until you’re ready to tell us what you said.

“Nothing. Nothing. I said nothing.”

Roxana, not comprehending the seriousness of the moment, tried to tickle Adriana.

“No, Roxana,” I said, “We are not playing games. Adriana has something to tell us.”

We waited there with Adriana lying on towels on the floor in the bathroom (which is a uni-sex restroom, she was fully clothed at this point), Roxana and I kneeling beside her. A teacher with his autistic student walked in the bathroom and saw us there and then went on with their business. We waited in silence. Another teacher entered the room. Adriana tried to engage in friendly conversation with her while I sat beside her doing/saying nothing. Adriana’s hair was still wet.

I thought about just walking away, telling her to call when she was ready to tell me what she said, but there were several reasons why this wouldn’t do. The biggest reason it wouldn’t work was because the restroom was public and people were bound to be coming in and out. It wouldn’t look very good if I just left Adriana there on the floor.

“Okay,” I told Adriana, “You have one minute to tell us what you said, and if you don’t tell us, I’m going to put you in your bed instead of putting you back in your chair.”

Adriana has spent most of her nineteen years in that bed. Maybe putting her there seems cruel, but there was another option, we shouldn’t forget: Adriana could tell us what she said and go in her wheelchair any time she wanted.

Adriana confessed nothing.

“10 more seconds,” I counted, “10, 9, 8 …”

When I got to “one,” I immediately began trying to pick her up. Follow-through. This was something Adriana had not observed. She screamed. She tried to kick. I tried to ask Roxana to help me put her in her chair so we could wheel her to her bed, but she didn’t seem to understand.

“No! No! I don’t want to go to bed!” Adriana screamed.

“Then tell us what you said,” I simply stated.

Roxana and I laid her in her bed. “When you’re ready to tell me the words, just let me know,” my voice said calmly amidst her screams.

“Forgive me!” She pleaded.

“Sure, I have,” I said in a way that I hope relayed that forgiveness was not the issue.

Because follow-through isn’t really practiced, Adriana only sees people follow through on their threats when they are extremely angry, so forgiveness is an issue. The reason it is easy for me to not begrudge her stubbornness is because I was not allowing her to get away with it. My heart was easy because I was attempting some kind of discipline, but Adriana’s heart, undergoing the discipline, was anything but easy. She was screaming. I closed the door and carried on my activities. Through the strong, double-paned doors I could hear Adriana’s violent screams.

I went back ten minutes later. “Are you ready?” I simply questioned as I opened the door.

“Marilyn, I didn’t say anything.”

I closed the door and walked away. I could hear the screams behind me.

When I went back to Adriana’s room the second time, I found her on the ground beside her bed, still screaming.

“Oh, you fell out of your bed,” I said sympathetically. I put her back. “Do you have something to tell me?” I prompted. She confessed with further prompting that she did know what she had said that was bad, but prompt as I might, she refused to repeat what she’d said. I walked away again. I told her I wouldn’t put her in her chair until she repeated what she’d said, even if that meant I didn’t put her in her chair tomorrow. Maybe this seems cruel, but why then do I feel so free when I hold fast? When things are just, there is peace. People have told me in the past I’m too severe, but I can’t sense where other people say their line is. I only know where my lines, my boarders are. How can I change this internal line if it is in the wrong place? And is it really in the wrong place? And maybe by sticking to my lines, I could teach Adriana that such a thing as a line exists.

After I put Adriana back in her bed I saw her edging toward the side where she had fallen and I realized as she rested one hand on the ground and screamed that the fall likely hadn’t been an accident. Adriana had enough physical control to keep this from happening. She wanted attention and if she were lying on the floor she would likely get attention. Two days earlier when she had had a similar tantrum and was left in her bed after speaking horribly to a staff member, my co-worker had found her in her room lying beside her bed, crying. Of course, she got a lot of sympathy from my co-worker who found her there.

When it was time for me to leave I said goodbye to a woman on the staff.

“You know what happened?” She asked and then answered her own question. “Adriana was so angry that she refused to eat. We tried to feed her ourselves, but she refused this, too.”

I told this sweet blond lady how Adriana had spoken to me and that I put her in her bed because she wouldn’t confess what she’d said.

“It’s because of what happened with me that she’s acting this way. Do you think it would do any good if I went in to talk to her?”

“Oh, you could go in,” the lady suggested, “and just encourage her to eat something.”

So I walked in and said good-bye to all the kinds in Adriana’s room (including Adriana) as I usually did, kissing them on the cheek. Then I feed Adriana as she sat on her bed. I reiterated that I must know the word before putting her in her chair tomorrow. She said, “Okay, the word was XXX,” and she uttered a word I’d never heard before. Since it was a new word for me, I considered that maybe she had said the word and that it was a really bad Romanian word that I hadn’t learned, worse than “I’ll bite you.” So I accepted that as the bad word and told her that because she had said the word, I’d put her in her chair. Who knows whether or not Adriana really won? I’ll have to ask a Romanian friend of mine if the word is really bad, and what it means.