Heart and Soul
Heart and Soul by Lynda Sales Engholm
I hadn't really wanted her in my class. When the principal told me that Darlene would be coming to my room, I was dismayed. She had been in two classes before mine, in our residential school for students with autism. I had observed her a few times, and what I saw was a child who needed a lot of attention.
When I saw her in her first class, she spent most of her time that day under a blanket, head and all, on the floor, and then refused to leave at dismissal. She only stuck her head out once while I was there, displaying some unkempt braids, a brown face with dried milk around the mouth, and deep set dark eyes with long lashes.
She was self-injurious; special ed teacher talk for someone who really hurts themselves. No one could pinpoint the cause. It seemed as though she heard voices and then banged her head on a sharp corner of something, usually a wall or a cabinet, or banged her forehead on a table, or scratched herself, or smacked herself, or bit herself. When her attempts were interfered with, she fought as if possessed, trying to get a few more slaps or bites in before she was stopped. Not your ideal student, not even in our school, that had the most difficult kids.
Darlene came to us just after her seventeenth birthday. She was not initially pleased with her new situation either. She had been a huge favorite in her former class and was not looking forward to being the new kid in my older group. My staff and I never like losing kids, either to graduation or to another class, nor do we like getting new ones. The principal often said during staff meetings that she didn’t know who had more trouble with change, the students with autism, or the teachers.
Yet, she had a certain appeal. Darlene was stocky and muscular, with a bright smile that showed a gap between her front teeth that added, somehow, to her charm. Her hair was done in cornrows that she scratched continually, causing dandruff to fly. She sang in a pure, lovely pitch-perfect voice; and she could pick out tunes on the piano in any key. Her drawing was far better than most people’s.
She had a sense of humor when you got to know her, and in a school of students who avoided eye contact and were mostly nonverbal, her social sense was a nice contrast. She noticed things such as a new hairstyle or shirt and commented on them in a charming way, with attention to detail. “You got new braids?” she asked me right after I had new extensions put in. Or, noticing a new shirt of mine that had buttons sewed on a ribbon, she said “I like your ribbon.” She once announced in a loud voice to our female aide: “Elise! You got a new wig!”
“All right, Darlene,” said Elise with a smile. Darlene followed that up with a sly sideways glance at Elise, who was sitting next to her.
“Take off Elise's wig?” “Girl, you better not even think about that!” yelled Elise, laughing . It was a good thing that Elise had a sense of humor herself.
Both of Darlene's former teachers loved her, and the most recent one gave her to me with the utmost reluctance.
But. She had a habit of stopping dead in her tracks before she got to her destination. She put her head down on the desk when it was time to do any activity, she made odd squeals at even odder times, flirted with the male aides and said highly inappropriate things, a mild one being, “Can I smell your chair?”
Sometimes she put her hand almost on your butt when standing behind you in the lunch line, which was very disconcerting. You'd feel this warmth and turn your head around, and there she'd be, her hand a micro millimeter from your bottom, grinning, saying “I shouldn’t do that?”
In the lunchroom she ate the meat out of her soup with a fork and left the rest, and put all manner of things in her pockets to eat later. When we checked her sweatshirt pockets, we often found scrambled eggs from breakfast, or pieces of potato and pork chop fat from lunch. She also had a handy way of stealing her favorite small items from the classroom. I never did get back a small shoe that was part of a lotto game. One of her Barbies is probably wearing it, or it's in the bottom of her closet somewhere.
And of course, there was the horrible fact that she was hell-bent on hurting herself, to the point of needing stitches and leaving scars. She had a large bite mark scar on her upper left arm, and various dark marks and a permanent bump on her forehead from banging her head. You had an occasional glimpse of scars between her cornrows from her dashes to sharp corners. Put all her little habits (called “behaviors” in our school) together and you had a kid who required tremendous attention from me and my three aides. It should be noted that we had only six students in each class, due to their intense needs. And even here, she stood out. You literally, could not turn your back on her.
As a teacher, I tend to be friendly and low-key most of the time. I dislike when people talk down to people with disabilities. I talk to them the way I would talk to anyone else for the most part. Sometimes I use verbal shorthand with a few students if they have difficulty understanding me. I might say “get book” instead of “please go get the book.” But my tone is the same, not that silly exaggerated way some folks employ when talking to kids with disabilities. I like to engage students using their strengths--that way they'll learn more and have fun doing it. With Darlene, I planned to engage her with music and art, which I expected would be fun for me too. I sing and play the guitar and I was looking forward to a student with a good voice to join me. But I wasn't sure how she would react to our room and our five older boys and I worried that we would have a hard time dealing with her impulses to hurt herself. Elise always says to me “We'll deal with it. What else can we do?”
At first, we found Darlene to be more trouble than we were used to having, and we were used to having plenty of trouble. Our main goal is to have the kids be as independent as possible, and to decrease negative behaviors. The rest of the group was doing well. Prince had stopped running down the hall to grab younger students, Billy had all but stopped screeching, and Robbie had cut down on his eating of puzzle pieces. They all worked independently at their desks most of the time. Now Darlene wanted our involvement in everything, if only to tell her to pick her head up, to continue or to start working, or to walk frontwards. We'd ring the bell for Morning Meeting, and her head would immediately go down on her desk. We'd try to tap her on her muscular shoulder rather than say “go to the group table.” That worked occasionally, but she really wanted us to talk to her, to give her a special reminder. Even if we succeeded in not speaking, she still garnered attention by being so slow. We often started without her, in the hopes she would come on her own. It worked at first, but she seemed to realize the game was up that way, so she kept her head down no matter what we did, and often ended up being escorted to the group.
It was tough keeping one step ahead of her. She had such a cleverness that was used in service of this unfortunate behavior. Attention seemed to be her goal, whether positive or negative. If she couldn't get it one way, she'd get it the other. Her former teacher succeeded in getting her to walk frontwards, but in the new situation, she tried to walk backwards again. It was disconcerting, to say the least, when she would suddenly switch direction and walk backwards into the gym. She would look over one shoulder to avoid collisions and looked mighty peculiar.
Darlene asked repetitious questions to calm herself, the primary one being “What’s the matter? No, what’s the matter?” We had to say, “what’s the matter” in response, often multiple times, and then she’d calm, saying, “good job using your words!” Hearing this phrase from our lips was part of her ritual. It sometimes seemed as though hearing it was a matter of life or death to her. If we attempted to cut down on saying it, she became even more desperate, and furtively glanced around for things to injure herself on or for an unobserved moment to bite herself on the arm. Other times, she would first cover her eyes with spread fingers while she peered out at us, whispering admonitions to herself, such as “Stop that! You stop that!”. We would try to reassure her that she had done nothing wrong. Sometimes it worked, many times it didn't. At those times, two of us would stay very close by. Denise and I would shoot each other a glance, nod our heads, or raise an eyebrow as an unspoken signal. The guys did the same. “Oh shit” was everyone's unspoken thought.
The threat of her hurting herself was always present. While we did not want to encourage this control of our speech, we had to consider her safety. Sometimes her mouth would turn down and she made “hoohoo” crying sounds until we said it. One time as an experiment, I tried to reassure her, using other words. “Everything's all right Darlene. Let's go to lunch.” She smacked herself hard across the cheek, the way someone in a movie would do to someone else if they were incredibly angry . “What's the matter” I said with no inflection. “Good job using your words” she said, immediately perking up and giving me a double thumbs up. So we continued to say it, albeit reluctantly.
Darlene loved Barbie and all her accessories, especially shoes. There were daily inquiries about getting “shoes for the doll.” That was often followed by “Can I sit in Barbies car?”. “You wouldn’t fit,” I told her. “Be appropriate,” she would respond, as a reminder to herself. She drew many portraits of Barbie in a variety of colorful and revealing outfits. She was left-handed and her favorite media were colored pencils and markers. She had a collection of paper dolls and outfits that she had made herself and played with from time to time. She was quite creative and driven in the way artists can be. One day, I noticed her looking at me closely and drawing. Later she gave me the picture. I never looked so glamorous in my life, with my hair flowing down to my waist, and wearing a purple ball gown, quite low-cut.
After she had been in our room for almost a year , she started banging her head almost every day. We have behavior plans for each student that have to be approved by a human rights committee, and we are trained and certified in therapeutic restraint techniques. Darlene's plan included what is called a two person take-down. It is used as a last resort. When Darlene could not be stopped from injuring herself using less intrusive techniques, Denise or I quickly hauled out a padded mat while our two male aides, Todd and Elvin, held her as best they could. Then the guys would do the “take-down,” easing her on the mat, with Darlene lying on her back and one of them kneeling on either side of her with their hands on her shoulder and arm and leaning their body into her hip. It's tricky choreography. It usually calms the student and upsets and tires the staff. Darlene would scream and cry at top volume, sometimes for fifteen or twenty minutes. She often asked Todd if he was calm. She would be gradually let go, to see if the self-abuse was going to stop. If she tried to bite or hit herself, it was quickly resumed. The other students generally paid no attention to this display, although one boy Jules, loved to watch and had to be taken out of the room. He only watched if it was Darlene.
After a couple of months of this exhausting and dangerous behavior, Darlene was assigned a helmet to keep her safe. The soft helmet was bubble gum pink with air holes and heightened her already strange look. Her medication was increased. None of us were happy about this new development, but she had had one too many trips to the emergency room during the weekends and evenings to get staples in her scalp, which she then tried to remove. Rhonda, her residence staff person, would stand in the hall after dropping her off, curling her finger so that I'd come talk to her. She'd whisper “ Darlene had a rough night. Second shift had to take her to the ER. She cracked her head open on the edge of the kitchen cabinet.” She pointed to her head. “Staples.”
While the medication slowed her negative behavior somewhat, her drawing was affected by the drugs. She rarely drew any more. She used to draw staff members in hilarious detail, once asking for her work back to add a drooping stomach she had somehow overlooked. All her women, regardless of their actual dimensions, were quite voluptuous and wore fashions worthy of Barbie herself. But now I had to offer a reward for drawing. Previously, drawing was its own reward. “Three years till graduation?” she’d ask regularly. “Yup,” I’d say, thinking that it would be a long haul for both of us. I have to admit that I have a strong tolerance for repetitious conversations with my students, and Darlene amused me more often than not. We probably had the graduation talk over a hundred times since I had her in my class. And even with that degree of tolerance, I’d often have to tell her it was enough for today.
So, when I got the email that said she would be leaving in two days, I was stunned. By then, I had had her for almost two years, and expected to have her for two or three more. Due to her many difficulties, she wasn't a child who changed classrooms frequently. She was only eighteen, in a school where graduation was at 21. Her parents had moved out of state, and her new school district would not pay for the placement in our school. There would be no time to “transition” her; no time to prepare her for what was next. No time for me to prepare myself for the transition. When I told her what was happening, she seemed giddy with the thought of being close to home.
“Going to Massachusetts?” she asked me over and over.
“What do you think?” I responded.
“YEAH!” she replied each time.
Darlene had been calmer for a few months. But that night she tried to hurt herself. The evening shift at her residence reported in her communication log that she had taken a sprint towards the fireplace mantel, which had a sharp corner. She had to be forcibly restrained to keep her from injuring her head. A two-person take-down. No one was happy about that.
I was feeling pretty blue about the whole business. I arrived at school the next day and when I took off my jacket I realized that I had unconsciously worn all black that day. “Oh boy, you thought. you had it all under control. That's a laugh” I muttered to myself. That evening I told my husband that I was more upset than I thought I'd be.
“I should be glad she's going; it's so stressful dealing with her every day.” “Come on...” he replied. “You know how you are. You never want them to leave. You always get attached and you always want more time.” “I do? Yeah, I do. I guess you're right. .” Darlene had wormed her way into my heart without my realizing it.
At three in the morning, sitting up in bed, giving up on sleep, I started thinking about all the things she said and realized her words could be a poem. I thought about all her phrases, some that I'd heard many times, others that were more random and beautiful in their own way.
What's the matter? No, what's the matter?
Burn down the sky?
Want to burn down the sky.
I loved her imagination. She was the only child in my class who could make up a story or tell us about her thoughts. I composed a poem in my head, using only Darlene’s words, so that I could calm down, and maybe get some sleep. Her words flowed through my brain. It felt comforting to hear her speak in my head. Lying exhausted in my bed, I didn't feel like getting up to type Darlene's poem, so I said it over and over to myself like a chant until I remembered it, and finally fell asleep.
The last day Darlene was with us, we had music on our schedule. She glanced over at me.
“Lynda’s upset?” She asked
“Yes,” I said
I was too moved to keep talking.
The music therapist, knowing it was her last day, asked her what she wanted to do. She said “Heart and Soul,” a number she and I played together on the piano. I had a quick intake of breath when she chose it. It was exactly what I would have chosen to have as a goodbye ceremony, and I felt very grateful that our minds were working alike at that moment. “That's a great idea, Darlene,” I told her. “I'd love to play that with you.”As always, we shared the piano bench. And as always, she took the melody and I played the chords. It seemed as though we were alone in the room, that the other students and staff had faded out. As we played it for the last time, I felt a sweet sadness. I realized that I loved her. That I would miss her. That I was grateful, in spite of myself, that she had been in my class.
For Darlene, in her own words
What’s the matter?
No, what’s the matter?
Burn down the sky?
Want to burn down the sky.
Take a plane and burn down the sky
And the school
And the class.
It’s not appropriate?
Burn down the sky.
I’m gonna cut a door in my room.
With a knife.
Door to the basement in Massachusetts.
Cut a door, yeah?
Now, stop talking about it.
What’s the matter? Now tell me!
Good job using your words!
Grandma’s taking you to the blue mall
Gonna buy doll for the shoes
Shoes for the doll.
Going in Grandma’s car?
You shouldn’t talk about it.
Stop. Now stop it.
What’s the matter?
No, what’s the matter?
Lynda Sales Engholm 2011