An Orange Raincoat

     Pearl never took off her orange raincoat -- rain or shine, blizzard or blistering heat. Pearl's coat was the subject of frequent discussion at team meetings: What did it symbolize? Her lack of trust in us? A signal that she might flee at any moment? A protective cloak against us -- because she saw us as one more potentially harmful group of professionals in her life?

At First Glance

      The referral was intimidating. "Both mother and baby are slow. The baby's father lives out of state and has no contact with them." The extended family was described in such terms as "questionable alcohol abuse," "history of mental illness," and "dual diagnosis." Another source stated, "Mother does not know her own address and phone number. History difficult to obtain."

      In person, Pearl was as intimidating as her referral. She was a tall, sturdily built woman with an ageless face; she could have been 25 or 45 years old. Her responses to questions were curt and brief. She never smiled or started a conversation with us or any of the other parents. Her nine-month-old son, Robert, was a fussy, irritable little boy with mild, yet obvious, delays. He was not yet babbling or sitting well. He smiled as seldom as his mother.

      Pearl was in danger of losing custody of her baby. Agencies were concerned about her ability to care for Robert. There never seemed to be enough baby food in the apartment. Safety hazards abounded. We were told that Pearl often failed to respond to visitors' knocks on the door. It was painfully clear that she didn't want to be part of our program either.

      What were we supposed to do? We felt dumped on -- early intervention to the rescue again because all other attempts to impact on Pearl's caregiving skills had allegedly failed. We were the program of last resort.
 

Taking A Second Look

      It was hard to watch Pearl's unresponsiveness week after week. We greeted her warmly each day and told her how happy we were to see her and Robert, but she just stared at the floor. Conversations buzzed around her, but she rarely took part in them. And she never took off her orange raincoat.

      We talked about Pearl and our frustrations at each team meeting. Our first attempt to complete an individualized family service plan failed. Although Pearl was receiving multiple services, it seemed that she viewed none of them as helpful. She regarded us with similar suspicion and would not identify any areas in which we could be of assistance to either her or her baby. She came to us only because she had been ordered to come -- or lose her baby.

      We argued among ourselves as to the best strategy to take with Pearl. One person played the role of devil's advocate: "We are constantly getting more and more referrals. How can we justify keeping a slot open for a family that clearly doesn't want our services?" We finally decided that our job was to get Pearl to trust us and to come because she wanted to come. We realized it might take weeks -- or even months -- for that to happen.

      So we waited; we welcomed; and we watched. We shared our surprise and pleasure with one another as some positive things began to happen. Although Pearl was not very talkative with Robert, she held him closely and stroked him. When staff members worked with him, Pearl followed every movement out of the corner of one eye. Her brief responses to questions suggested that she too was concerned that he was not yet sitting very well and was not a very good eater. It became easier to compliment Pearl. One day she almost smiled, although her hand came up to cover her mouth. But she never took off her orange raincoat.

Our Eyes Are Opened

      One day Pearl did something that we talked about extensively in our team meeting. Robert, now more than twelve months old, was blowing soap bubbles with the speech-language pathologist. As usual, Pearl had been watching closely. Hoping to encourage some mother-child play, the speech-language pathologist had handed the bubble wand to Pearl. Pearl reluctantly took the bubble wand, held it for thirty seconds or so, briefly held it up to her lips without blowing, and then returned it to the speech-language pathologist. Was this yet another sign of "resistance"?  After much discussion, we decided that Pearl probably didn't have the slightest idea about how to pucker her lips and blow bubbles. Rather than fail in front of us, she had chosen not to participate. If we wanted Pearl to succeed, we had to plan activities that were attractive and made enough sense to her that she would be willing to take the risk of participating.

      That strategy seemed to work. We began to see more changes. One day our log said:

Pearl and Robert were more interactive today. Robert didn't like to look at or feel the porcupine squeaker. Pearl liked it and playfully teased him by putting it on his shoe or leg or on her own leg. She gently did hand-over-hand to get him to touch the porcupine. She didn't always pick up on his verbal cues, but the hand-over-hand movement was good.

      A month later, after one of our regular "clothing swaps," we noted that Pearl was starting to talk to other parents in the group.

Today Pearl talked to two of the parents while picking out some clothes for Robert. She commented on the difference in development between Robert and another child similar in age, "He [Robert] is even taller and cannot walk." So Pearl assisted Robert to pull to stand.

      Pearl's own story emerged slowly and painfully. She had grown up in a rural community and dropped out of school in the third grade. Her babies had started arriving when she was a teenager. All her babies had been taken away from her at birth because someone had thought Pearl's mental retardation too severe for her to care for them. Pearl saw Robert as her last chance -- indeed her only chance -- to raise a child herself.

      The future did not look hopeful for Pearl to do that. She was not cooperating with the protective service agency involved with her. The safety hazards in her apartment were so significant that she had been asked to find a new place to live, but she had not done so. She often refused to let that agency's staff come into her home. And now Pearl was pregnant again. Because we were seeing progress in our program, we talked repeatedly with the agency caseworker to advocate for more time for Pearl. The caseworker, however, was so overworked and overwhelmed she could not see any option other than to remove Pearl's son and place him in foster care.
 

The Months Apart

      Although living separately, Pearl and Robert continued to attend our program. Pearl would arrive early, in her orange raincoat, anxiously waiting for her little boy. Mother and son would smile broadly when they first caught sight of each other. Some weeks, it was clear that the pregnancy tired Pearl but she was trying very hard to interact with Robert during their time together.

      As Pearl's body grew and changed shape, so did our relationship with her. She had been aware of our attempts to advocate on her behalf and indicated her gratefulness. Although she continued to wear her orange raincoat each week, it seemed less and less of a symbolic barrier between her and the rest of the group. One week we discovered that the reason she smiled so rarely was that she was embarrassed about the poor condition of her teeth. Another week we wrote about her wry sense of humor:

Pearl seemed very interested in a book of nursery rhymes and watched intently while Robert pointed to pictures and we named them for him. She looked at the cover of the book, which illustrated, The Old Woman Who Lived in the Shoe, and commented, "Daggone!  Look at all those kids!"

      In our team meeting, we talked about how Robert had been placed in a unique foster home. The foster mother was willing to let Pearl visit in the foster home and went out of her way to make Pearl feel comfortable. Because Pearl spoke so highly of her, we began to view the foster mother as a sort of "mentor" to Pearl. Pearl's support network was expanding. Our staff, the foster mother, and the workers and drivers from the protective services agency were all part of the same trusted network, working with and on behalf of Pearl and her son.

      Keeping in touch with the "network" took some time and effort on our part. Pearl knew how frequently we talked with the other people involved with her because we always asked her permission. She became an increasingly active member of the communication loop and began to assume control in other ways as well. For example, when we talked with her about updating the IFSP, Pearl noted that Robert's walking and talking were behind. She knew that he was only using single words and stated, "I want to hear him say 'I want a bottle.' " Then Pearl added that she liked to meet the families here and got to know them more each time she came. But, she still wore her orange raincoat.

      One day Pearl told her caseworker that sometimes she had problems understanding conversation. An audiological evaluation revealed that Pearl had a moderate to severe hearing loss in the right ear and normal hearing sloping to a mild hearing loss in the left. No wonder Pearl didn't respond to our attempts to engage her in conversation -- or to knocks on her door. The audiologist's recommendations, however, meant more appointments for Pearl. She was already visiting Robert, attending our program, keeping her obstetrical appointments, and looking for housing. Pearl's support network became even more important.
 

And Baby Makes Three

      After several months had passed, we learned from the foster mother that Pearl had gone into labor shortly after our last meeting and had delivered a little girl. Because the baby had arrived a month early and was small, she had to stay in the hospital until she was feeding well and her weight reached five pounds. Apparently there was some question as to whether the baby would be going home to Pearl because even though progress had been made in other areas, Pearl had still not found a new place to live.

      It was not as though Pearl hadn't been trying. The problem was that the waiting list for subsidized public housing with enough bedrooms for Pearl and her two children was up to one year. Other housing options had fallen through because Pearl had not known how to complete the application forms or had not had enough money for the deposit. As usual, Pearl was a major topic of discussion at our team meeting. Even though we felt confident about our ability to intervene with Pearl and her children, none of us felt very skilled in the intricacies required to obtain public housing. So, once again, we found ourselves on the phone with Pearl's caseworker.

      "We know you're very busy," we told her, "but we'd like to do what we can to help Pearl. We'd be happy to help her fill out the forms if you can bring some pressure on the housing authorities." The caseworker agreed to our deal.

      In the meantime, Pearl, in her orange raincoat, showed up at our program only two weeks after her baby was born. She smiled while telling us that she had figured out how to take the bus to the hospital when she was in labor. Her smile grew as she described her new baby girl. She then went on to say that she had talked to her doctor about getting her tubes tied, but the doctor had refused to perform the procedure because Pearl was not capable of understanding and giving her consent.

      Later, during our team meeting, we angrily discussed the doctor's refusal to grant Pearl's request for a tubal ligation. We had encountered this situation before with another mother with mental retardation. We were frustrated because some people did not understand that having mental retardation does not mean an inability to learn, generalize, or make wise decisions. We suggested that the caseworker find a psychologist who would talk with Pearl and evaluate her in a variety of ways, not just through intelligence testing. We recommended several names.

      Eventually, the baby, named Maria, came home with to Pearl. Every week Pearl and Maria arrived together and were reunited with Robert for the afternoon. Robert, who was almost twenty-one months old, enjoyed the visits. Our team was rather surprised by how well Pearl handled the simultaneous demands of two small children. Maria was doing beautifully. She was interactive, cooed, laughed, and was right on target for her corrected age. Pearl was absolutely delighted. One day our log read:

Today Pearl chose to make a rattle bracelet for Maria. Then she played with Maria for a while, before placing her in her infant seat. Maria watched intently as Pearl talked and cuddled with Robert. Pearl's face still lights up when Maria attracts attention in the lobby or classroom. Pearl continues to be more talkative in group and able to discuss her difficulties with housing.

      The housing problem had not been solved. Pearl and her caseworker kept us updated, but we were extremely frustrated. Pearl's hearing difficulties had not been resolved either. Maria's birth had interrupted Pearl's efforts to complete further diagnostic testing regarding her hearing loss. Pearl's next hurdle was a Magnetic Resonance Imaging (MRI) appointment. Pearl had already refused to allow the MRI once because she was afraid of that "big black hole." When we asked her if she would like someone to accompany her and care for Maria while she was having the test, she agreed to keep the appointment.

      One of us met Pearl at the hospital on the morning of her appointment. Pearl smiled broadly when she saw someone from our program, but reiterated how afraid she was about the test. However, that day she successfully completed the MRI. Afterward, Pearl explained that, although she had been frightened, she knew we were waiting outside so she "just got it over with." In fact, she had refused a mild sedative so that she would be able to take Maria home immediately and care for her without feeling drowsy.

      Pearl was evaluated by one of the psychologists that we had recommended. He found that she was capable of making informed decisions when information was described clearly and thoroughly to her. Pearl and the caseworker began to look for another gynecologist.

      We thought we understood Pearl pretty well and felt confident in what we were accomplishing with her, but one day we found ourselves in a very humbling position. Pearl and the other parents had decided that they would like to make some special gifts for their children for the holidays. The gift that Pearl had chosen required a significant amount of cutting around a complicated pattern. Pearl struggled and struggled, switching the scissors back and forth from hand to hand. Finally, after much perseverance, she completed the project. Much to our chagrin, someone who had been observing the session pointed out afterward that Pearl was left-handed and valiantly had been working with the right-handed scissors we had given her. We had unintentionally set her up for failure, but she had succeeded in spite of us.
 

Overcoming Our Hurdles Together

      During next few months, Pearl found a new place to live, Robert came home, and Maria continued to thrive. Robert's foster mother purchased a housewarming present for Pearl--a special telephone with large numbers and an amplifier. Discussion at our team meetings focused on changes in Pearl's social interaction in our program. Our log read:

Pearl continues to make more eye contact each time we see her. She takes pride in her appearance as well as her children's. While Robert was using the child-sized broom today, Pearl commented that he is probably taking after her because she's always sweeping to keep the floors clean for her babies.

      We continued to admire Pearl's ability to attend to both her children. Whether they were eating a snack, playing with the toy telephone, or playing with one of Maria's rattles, Pearl found a way to include both children. It was also clear that Pearl was no longer hesitant to try what she saw us doing with her children. One week's log read:

When asked by the occupational therapist if she was picking up Maria each time she changed her diaper on the floor, Pearl replied that no, she was helping Maria roll onto her stomach by rotating her opposite knee to the floor-"just like you showed me."

      Our strategy to do whatever we had to do to respond to Pearl's immediate needs was working. Pearl had even stopped wearing her orange raincoat. During another IFSP update, Pearl identified the following goals: 1) to change her children's pediatric clinic days so that the appointments will better fit the family's schedule; 2) to learn to read so that she can keep track of Robert's and Maria's appointments; 3) to make toys for Robert and Maria "so that they will have a better life." Pearl was feeling empowered. 

      However, our role as Pearl's advocate had not ended. Due to continued delay in his expressive language, Robert had begun attending a toddler play-language group at a center nearby. Pearl expressed some reluctance about Robert continuing in the play group because "it's not doing anything--he's not talking yet." Our speech-language pathologist talked to the center's staff by phone and set up a time for Pearl to talk to them. Not only didn't Pearl understand the goals for Robert in the play group, but the center also had no idea that Pearl had a hearing impairment and was unable to read. Their previous attempts to communicate with Pearl had been by letters or telephone calls. In many ways, their perception of Pearl resembled ours when we first met her. It was important for them to hear how Pearl could change if the professionals working with her could change along with her.
 

Moving On

      We had known Pearl for more than two years, and it was becoming more difficult for her to attend our program. Her new apartment was not on a bus line convenient to us, and the demands of two children and their activities and appointments kept her busy. Once again, Pearl was the main topic of discussion at our team meeting. We knew that transition had to be planned carefully in order to help Pearl continue to succeed. Some issues were still unresolved--the hearing aids, the tubal ligation--but the caseworker was willing to assist Pearl with those. Pearl had moved to an apartment complex that contained a Head Start program, and Robert would be eligible for services in the fall. When we talked to Pearl, she appreciated our concern and was excited about a "school" for Robert. "No one in my family ever went to school that young," she said. There was also an adult literacy program down the street from her new apartment. We offered to help, but Pearl chose to do it on her own. She made the phone calls, kept the appointments, and asked for help in completing forms when necessary. Then Pearl, Robert, and Maria moved on with their lives.

      Two of our staff were visiting in Pearl's neighborhood about a year later and dropped in to see her and the children. Pearl had just finished giving both children baths. Robert and Maria soon dropped their shyness and were laughing and playing while the adults talked. Pearl had made friends in the neighborhood and Robert was attending Head Start. Pearl still had not gotten her hearing aids or the tubal ligation, but she had managed to care for her children and keep them healthy and happy. "Please come back and visit me any time," Pearl said as she closed the door.

      At the next team meeting, we described the visit with Pearl. Some of our staff were relatively new and had not known her. We talked at length about her orange raincoat. For us, it had come to symbolize the barriers between a parent with mental retardation and the professionals and systems serving her. In many ways, we had all been wearing orange raincoats. Pearl had taught us to leave them at home.
 

This case story originally appeared in McWilliam, P.J., & Bailey, D., (Eds.). Working Together with Children & Families, Case Studies in Early Intervention. (1993). Baltimore: Paul H. Brookes Publishing Co.

An Orange Raincoat Discussion Questions