Piecing Together the Community Puzzle

    Carol drove to Jamestown this morning to visit Joy Williams. She wanted to make sure that there were no significant changes in the status of the family before she met with the team that afternoon. It turned out that everything was about the same, but Carol never knew what might happen next with the Williams family. The family was one of the most challenging cases she had encountered in her three years as a member of the Smythe County Early Childhood Intervention (ECI) team. The meeting with the rest of the ECI team had been Carol's idea, but, as she drove back towards Smythe Co., she wondered whether it was really worth all of the bother. Would it really make any difference? Or was she just battling windmills like some Don Quixote of early intervention?
 

A Family Portrait

     Bobby Williams is almost three years old (2 years 10 months). He has been diagnosed as having mental retardation and severe cerebral palsy of unknown etiology. Bobby also has a seizure disorder that is only partially controlled by relatively high doses of anticonvulsant medication. Overall, Bobby's functional skills are not far beyond those of a newborn.

     Bobby has dark, curly hair and big, brown eyes with unusually long, thick lashes that are quite appealing. Unfortunately, this is where Bobby's attractiveness stops. His small body reminds one of a starving infant in a drought-ridden, developing country. Not only are his arms and legs pencil-thin, but they are usually rigid and trembling from the uninhibited motor messages of his brain or as a result of unrelenting waves of seizure activity. The only time he seems relaxed at all is when he is being held in a flexed position.

     Joy Williams is Bobby's mother. She is 23 years old and Bobby is her only child. Joy has never been married and has never disclosed the identity of Bobby's father. Joy didn't do very well in school-academically or socially-she dropped out when she was 16 years old. She worked as a clerk in a small discount store for about two years, but her employment ended abruptly when she suffered an emotional breakdown and was hospitalized in a state institution for persons with mental illness. The diagnosis was paranoid schizophrenia. At the end of a three month hospitalization, Joy was stabilized on medication and was released to the care of her parents, Charlene and George Williams. Joy remained emotionally stable and was able to go back to work again within 8 months. Soon after that, she decided to move out of her parents' home and live by herself in an apartment. Bobby was born a year later.

     When Bobby was born, Joy quit her job and moved back home with her parents. Her younger sister, Candice, was also living there. Joy didn't like living at her parents' home. She felt as though her mother was too interfering, always telling her what she should or should not do for Bobby. There was also constant tension between Candice and her parents because, according to Charlene and George, Candice was a bit "wild." Even more bothersome to Joy was the tension in the home that resulted from her father's drinking and the fights that ensued between her parents when he came home intoxicated. Joy felt that she had no option but to live at home because Bobby required constant care and no one else could or would watch him so that she could return to work. She contributed financially to the family through the Supplementary Social Security Income (SSI) she received on behalf of Bobby.

     When Bobby was 18 months old, a slot became available for him at Special Tots, which is located in Jamestown, and Carol continued to provide home-based services. Joy was able to get a job working behind the counter at a fast food restaurant in Jamestown and worked while Bobby attended the classroom program. She saved her money for four months and then moved out of her parents' home into her own small apartment. Joy's mother, Charlene, was not in favor of her moving out. She was concerned about Joy's emotional stability and her ability to provide adequate care for Bobby.

     To a certain extent, Charlene's concerns were justified. Joy did have some problems living independently and caring for Bobby. There was often too much month left at the end of the money, and she couldn't get the diapers or other supplies that Bobby needed. Paying the heating bill was also a problem some months. Joy didn't want to admit to her mother that she was having problems, so she often borrowed money from friends at church and tried to repay them with her next paycheck. When Joy finally told Carol about her financial difficulties, Carol assisted her in obtaining food stamps through AFDC (Aid to Families with Dependent Children). This eased some of the strain, but didn't solve all of the problems. There just wasn't much money coming into the household. Transportation was also a problem for Joy. She had no car and didn't drive. Although Special Tots provided door-to-door transportation for Bobby and she was able to take a bus to work, problems arose in getting groceries, taking Bobby to the doctor or health clinic, getting prescriptions filled, and getting herself to the mental health clinic. Overall, Joy didn't do too badly given her limited resources. That is, until the unforgettable episode at the church picnic eight months ago.

The Church Picnic

     Looking back, Carol had noticed that Joy wasn't her usual friendly self during the weeks that preceded the episode. Joy had seemed a bit edgy and resistant to her questioning. Even so, Carol never could have predicted what happened just three days after her last visit to Joy's apartment.

     Carol was first contacted by the staff at Eastern State Institution for Persons with Mental Retardation, which is located in the neighboring county. They told her that Joy had had a psychotic episode at a church picnic and was committed to the state institution for persons with mental illness. Bobby had been placed by Jamestown Social Services in Eastern for emergency long-term respite care because a foster home or other appropriate placement could not be found. Joy's parents did not feel able to take Bobby into their custody because of Charlene's evening work schedule. Eastern wanted to know what type of program and medical regime was necessary for Bobby, and Carol provided them with the necessary information. Carol later talked directly with Jamestown Social Services and with Charlene Williams.

     Evidently, Charlene had taken Joy and Bobby to the church picnic that Sunday afternoon. Joy had been acting strangely in the car, but Charlene thought she was just angry at her about something that happened a few days before. Joy kept to herself while at the picnic until some games started. Then some friends tried to coax her into joining in the fun. In the midst of their coaxing, Joy grabbed Bobby from the blanket where he was sleeping and started yelling and screaming at anyone who came close to her. "You can't have my baby!" she screamed. "If you come one step further, I'll kill you!" She clutched Bobby closely to her and threw anything she could lay her hands on at those that tried to get close to her. Charlene and several church members tried to talk to Joy, but she didn't seem to understand anything they were saying. Joy became more agitated. Fearful that Joy might hurt Bobby, herself, or someone else, church members physically subdued her and emergency assistance was summoned.

     Joy was hospitalized for 30 days and Bobby remained in Eastern State Institute under the custody of Jamestown Social Services. According to Charlene, the psychotic episode was most likely the result of Joy not taking her medication or not having the money to get her prescription filled. She also learned that Joy had missed several scheduled appointments for the mental health clinic. Joy lost her apartment and her job at the fast food restaurant, so she went back to live with her parents when she was discharged. Bobby was returned to Joy two weeks later, but under the careful watch of social services. Bobby started back in his classroom program and Carol resumed providing home visits.
 

Rousing the Ire of the Community

     Soon after her discharge, Joy seemed quite stable, as if nothing had ever happened. A few months later, she began to talk to Carol about wanting to get out of her parents' home and live by herself with Bobby. She said she had tried talking to her mother about it and to the social worker who came to the house once a week, but neither of them would discuss it with her. They said she couldn't manage on her own. Nevertheless, Joy really wanted to move out on her own. She felt capable of caring for Bobby by herself, but she didn't know how she could manage it financially. She didn't think she would be able to get a job. Even if she did, she was afraid too much stress might trigger another episode.

     Carol provided Joy with information on possible sources of financial assistance and together they planned the budget needs for Joy to live on her own with Bobby. Six months later, Joy was approved to receive partial disability income for herself on the basis of her mental disability. She also got approval for Medicaid for Bobby. Joy managed to find an affordable apartment and moved out of her parents' home with Bobby. Charlene and the social worker from Jamestown did not approve of the move. In fact, both tried to talk Joy into institutionalizing Bobby if she was determined to live on her own. According to Joy, several church members have also visited her and tried to talk her into moving back with her parents. Joy thinks her mother, Charlene, is behind these visits.

     Carol became the target of much criticism from the Jamestown human services community. The Department of Social Services blamed Carol for Joy's moving out of her parents' house and said that Joy wasn't mentally competent to live by herself and take care of Bobby. The social worker told Carol that it was easy for her to encourage Joy to live on her own, but it was the DDS who was ultimately responsible for looking after Bobby's welfare. They felt that it would be better for Bobby to be institutionalized. According to the social worker, Joy wasn't in touch with reality because she couldn't see the extent of Bobby's retardation. She also said that Bobby would receive better physical care in the institution and, so far as Bobby was concerned, he wouldn't know the difference. Carol felt that the real problem was that it was more work for them if Joy lived by herself.

     The relationship between Joy and the teacher at Special Tots wasn't much better. Even before Joy's breakdown at the church picnic, the teacher seemed to be constantly complaining about Joy when Carol visited the school. She complained that Joy didn't send enough diapers for Bobby, brush Bobby's teeth properly, keep Bobby at home when he had a cold, or call the school to cancel transportation when Bobby was sick. Joy's psychotic breakdown just intensified the teacher's complaints. Now the teacher looked at everything Joy did or said with a slanted eye. Nothing that Joy said was taken seriously, rather it was just chalked up to her "mental condition." They took good care of Bobby at Special Tots in terms of meeting his physical needs. They also provided some "stimulation activities," but Carol felt as though neither the teacher nor the aides showed any real sense of warmth or caring for Bobby.
 

A Good Mother

     Carol feels that Joy is fairly capable of living on her own and caring for Bobby providing she has a reasonable level of support. Bobby obviously means the world to Joy. She loves him as much as any mother could love any child. Joy talks to Bobby constantly, rocks him, and tries to play with him by showing him toys and books. In some ways, her low key personality, patience, and lack of expectations for him provide a better environment than the fast-paced environment of most homes and preschool centers. In short, she knows how to wait for a response from him and is capable of repeating an activity over and over again.

     Carol thinks quite often about what she observed while watching the interaction between Joy and Bobby during a home visit at the apartment. Joy had been telling Carol about Bobby's ability to talk. Carol didn't usually pay too much attention to these sort of comments because Joy always showed an unrealistic assessment of Bobby's abilities. But this time Carol felt sorry for Joy as a result of all the criticism she was getting about moving into the apartment. She decided to humor Joy and attend to her comments, so she asked Joy to show her what Bobby could say. What Carol saw then was somewhat surprising.

     Joy held Bobby in her arms in the rocking chair and began to talk to him in a soothing, adult-like fashion about what they were going to do later that day. Bobby turned his head slowly and oriented toward Joy's face. His large eyes seemed to stare intently at her and his body was still. Then, Joy stopped talking and just stared back into Bobby's face for what seemed to be the longest time. The silence was rather uncomfortable for Carol, who decided to just wait out the display. Then, Bobby began to make cooing sounds while maintaining his stare into Joy's face. Joy didn't say a word, but just maintained the face-to-face pose. After a minute, Bobby stopped cooing and Joy started talking back to him as though he had said something quite responsive to the original words she spoke. The turn-taking interaction continued for several more minutes.

     Carol remembers her astonishment at Joy's ability to wait for Bobby to respond. What amazed her more was the fact that Bobby only cooed when Joy stopped speaking and he seemed so intent upon Joy's face. Carol had to laugh at herself as she drove home in the county car that afternoon. Was psychosis contagious? Was she the one hallucinating now? Or did what she thought she saw really happen? It certainly looked real enough to her. Although she didn't believe for a minute that Bobby actually said the things that Joy said he did, he had definitely been engaged in turn-taking interactions. This was a skill far beyond any he had ever been given credit for. Carol wondered what the social service professionals in Jamestown would think if they had seen what she had seen. But then, she thought, they would never have taken the time to watch. They were too busy telling Joy what she should do.
 

In Seach of Support

     Regardless of how capable Carol thought Joy was in taking care of Bobby, she knew that Joy could not live independently without assistance. Both Joy and Bobby had many needs, and Carol knew that she alone could not meet all of their needs. Even if she could, the time she would be involved with this family was limited. The Smythe County ECI Program only served children from birth to three years of age, although, they could extend their services up to the child's fourth birthday under special circumstances. When Bobby was discharged from the ECI program, the Williams family would be completely in the hands of the services available in Jamestown. Bobby's educational programming would consist solely of that provided at Special Tots. This concerned Carol a great deal. If the present attitude toward Joy by the Jamestown community continued, she probably stood little chance of succeeding.

     Carol hoped that she could get a support system in place for Joy fast enough to insure at least a temporary buffer against emotional and financial stress. She thought that Joy's mother and the Jamestown professional community might alter their opinion of Joy if they could see that she could manage on her own with their help. Unfortunately, home visits to Joy and Bobby involved a 45-minute drive each way for Carol. Her caseload included 10 other families, who lived across the eastern part of the county. Once-a-week visits to Joy were about all that she could handle and still be fair to the other families. Other ECI team members could possibly make an occasional visit to Joy, but their caseloads were equally full. Even if the ECI program could provide the majority of support, Carol wondered if that would be the best thing to do. After all, the services available in Jamestown would be the only source of support for the family within a year. Shouldn't that support system be put into place now?

The Missing Pieces

     Carol thought a great deal about what it would take to keep the Williams family intact and not overly burden any one source of support. Considering Bobby's and Joy's special needs, their chance of succeeding could be jeopardized by any of a number of possible cracks in their support network. Listed below are some of the issues that Carol considered.

Respite Care
     In terms of respite care, Eastern State Institute was probably the only facility that would take Bobby, and it had some respite care slots for one-week stays. If regular respite could be arranged (e. g., one week every month), this might relieve Joy of the constant strain of caring for Bobby and give her a chance to attend to her own needs.

Joy's Mental Status
     Joy's mental status was Carol's biggest concern. Joy would probably do quite well providing she kept regular appointments at the mental health clinic and stayed on her medication schedule. Once Joy started becoming delusional, she wouldn't trust anyone and would not seek help at the mental health clinic. Things would only snowball, and another hospitalization-or something worse-would result. It seemed to Carol that having someone who made regular contacts with Joy and monitored her mental status might serve to prevent another episode like at the church picnic. It wouldn't necessarily take a professional to do this. Another option was an adult day program sponsored by the mental health clinic, but Carol wasn't sure that Joy would even consider this.

Bobby's Health Needs
     Bobby needed his seizure medication on a regular schedule. As long as he was receiving regular doses, he did about as well as could be expected. It was important for his blood levels to be checked periodically by the seizure clinic at the hospital to insure that his dosage was correct. As long as Joy was emotionally stable, she seemed to be competent in administering his medication. But it probably wouldn't hurt to have someone checking in on her and occasionally reminding her of the importance of regular administration. Making and keeping appointments at the seizure clinic was another issue, with the biggest obstacle probably being the lack of transportation.

     Carol had several other concerns about Bobby's health. Bobby was susceptible to respiratory infections (i.e., bronchitis, pneumonia, throat infections, and common chest colds). He was also particularly prone to ear infections. Carol wasn't confident about Joy's ability to detect these illnesses at an early stage and they might progress to more serious bouts of illness than they should before treatment was obtained. Here again, transportation was an issue. Joy had to have a way of getting Bobby to a doctor when he needed attention. Proper diet and dental care (in light of the effects of his seizure medication) were additional concerns related to Bobby's health.

Bobby's Orthopedic Needs
     Bobby was developing severe contractures in his hips and the orthopedist recommended hip release surgery to provide some relief. This surgery would involve Bobby being in a cast for 6-8 weeks after surgery and thereby make caring for him difficult during the recuperation period. The orthopedist was concerned about Joy's ability to handle this situation. Carol had mixed feelings about it. She knew the orthopedist didn't think highly of Joy, but she also wasn't certain about Joy's ability to take care of Bobby during his recovery. She did, however, think that Joy could manage if she had some help. There was also the possibility that Eastern State Institute might be able to keep Bobby during this period, though Carol didn't know if they could keep him that long or how Joy would feel about his staying there.

     In light of Bobby's severe spasticity and the progressive development of contractures, the physical therapist at the ECI program recommended that a Mullholland wheelchair be purchased for Bobby. The Mullholland chair has far more adjustment capabilities than other travelchairs and would provide superior positioning for Bobby. Bobby would be easier to feed in the Mullholland and the positioning it would provide would help to reduce the development of contractures and perhaps prevent severe scoliosis. The problem with the Mullholland is that it cannot be used as a travelchair for car travel. The chair does not readily collapse for storage in the trunk, but rather must be partially disassembled. Carol was concerned that Joy didn't have the mechanical aptitude needed to appropriately use the Mullholland chair. She remembered the difficulty she herself had in learning to use one with another child on her caseload.

     Special Tots had a van for transporting the children to and from school. They might be able to transport the Mullholland in the van without disassembling it. Even if they couldn't, the staff should be able to learn how to work with the chair. The major hurdle would be coming up with ways that Joy could use it for Bobby at the apartment. A set of six steps led up to the front door of her first floor apartment. Joy couldn't possibly take Bobby up them while he was still in the wheelchair. She would have to take Bobby first and then the chair. While this was quite manageable now, Carol wondered what it would be like in a year or two as Bobby got bigger. After all, Joy was not a very big woman. A ramp would be nice to have, but the landlord certainly would not put out the money or labor for building one.

     The Mullholland wheelchair would pose a big problem when it came to taking Bobby places other than school (e.g., orthopedic clinic, seizure clinic, doctor's office, or on other outings). Taking the Mullholland in a private car, in a taxi, or on the bus would require partial disassembly. Carol was afraid that the difficulty involved might deter Joy from taking Bobby to places he needed to go and might reduce Joy's social contacts. She couldn't help but think that getting out of the house, with or without Bobby, would be important for maintaining Joy's mental health. Right now, Joy used his old travelchair when going in a car and carried Bobby whenever a trip involved going in a taxi or a bus. But how much longer would she be able to do this?

Transportation
     There was a shopping center not too far away from Joy's apartment where she did her grocery shopping, bought most of the household supplies, and picked up a few clothes for herself and Bobby. Rain or shine, she usually walked to and from the shopping center. If she had to, she took Bobby along in his travelchair even though it could be a bit difficult managing the travelchair and the packages.

     Getting to places further away often posed a problem. Joy was reluctant to ask her own family for rides for fear of them throwing it in her face that she couldn't handle living alone. Occasionally, she would ask a church member to pick her up on the way to church so she could attend. But Joy wasn't certain how some church members felt about her after the episode at the church picnic and therefore hesitated to ask them for much help with other transportation. Her social worker in Jamestown provided some help with transportation when it was needed to meet Bobby's health needs, but Joy avoided this woman whenever she could. She said the woman always talked to her like she had mental retardation and told her she was doing everything wrong. Joy told Carol that on several occasions the social worker made her wait in the car with Bobby while she went into a fast food restaurant for her lunch break in the middle of transporting them to the hospital clinic.

Bobby's Birthday
     Although it might seem trivial to others, Joy's major concern at the moment was having a birthday celebration for Bobby when he turned three years old in two month's time. She wanted to have a decorated cake, ice cream, balloons, and a proper birthday present for him. She talked about it every time Carol visited. Joy was barely making ends meet with her limited budget and was afraid that she wouldn't have enough money for Bobby's birthday. Carol was almost ashamed to bring up the issue to the rest of the team, but it seemed to mean so much to Joy. Surely, it must be important. Carol was also angry at the social worker in Jamestown for what she said to Joy about the birthday. According to Joy, she mentioned the birthday party to the social worker and the social worker told her that Bobby didn't know what a birthday was and that she needed to spend her money on more important things.
 

Planning for Prevention

     Carol felt confused and a little frustrated about the Williams family. She couldn't understand why the professional community in Jamestown wasn't more supportive of Joy wanting to make it on her own and take care of Bobby. Joy loved Bobby and tried her very best to do the right things. Was it her fault that she had a mental disorder and had few resources of her own? Besides, Joy responded well to medical treatment of her disorder. As long as she took her medication, was properly monitored, and wasn't under too much stress, she was stable enough to care for her son. Carol felt she was the only one who believed in Joy and was willing to be truly supportive. She was afraid that Joy would fall apart and lose Bobby soon after services from the ECI program ended. Carol felt as though she needed the support and advice of her teammates, so she called a meeting to discuss the Williams family.

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.

Piecing Together the Community Puzzle
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