April Must Wait

      Rick drove to Taylor County early to pick up April Banks. He had to have her at  the Center by 8:30 A.M. for her audiological appointment. April's mother, Margaret Banks, couldn't bring her to the center herself because she was working the 11:00 P.M. to 7:00 A.M. shift at the hospital and had classes to attend in the afternoon. The early intervention program needed an audiological evaluation of April or it would be out of compliance with state regulations and not be able to serve April and her family. Rick knew that re-scheduling the audiological evaluation probably would not help. The chances of Margaret bringing April to the center were slim. Rick was actually a little surprised that Margaret accepted his offer to take April to the center. She had also agreed to let him take April to her classroom after the evaluation and drive her back home at 5:00 P.M.

      It was about 9:30 when Rick pulled into the parking lot of the classroom building. He turned to April who was belted into the car seat beside him. She had an ear-to-ear grin on her face and her arms were flailing out of control. It was obvious to Rick how excited she was to be at the classroom again.

      "Well, little lady," Rick said, "I suppose you approve of my agenda for the day. Do you want to go in and see Leigh?" April's arms moved even faster and she managed to get out a sound. "Aaaaah," she said. To the untrained ear, April's grunting would probably sound like distress, but Rick knew that she was ecstatic. He could see it in her eyes. Rick stared into the little girl's deep, brown eyes and smiled. He couldn't help wondering what April would be like if she were his child. During the past year, she had won his heart and he wished her family situation was more supportive of her education.

      Rick got out, walked around the car and opened April's door. "You don't really want to go in there, do you?" Rick teased. April's arms, which had finally quieted, started flailing again. "Maybe you should go over to the office with me and help me write reports." Her arms moved faster. "Oh, you do want to help me write reports," Rick said and pretended that he was going to close the car door. April gave out a loud "Aaaaah!"

      "Oh, I'm sorry," said Rick, "I thought you wanted to go help me. My apologies, Ma'am. I'll take you right in."

      Rick had gotten April so excited that it was difficult to get her out of the seat harness, but soon they were on their way up the ramp to the classroom. Rick could see Leigh, the classroom teacher, waiting at the door.
 

A Four-year-old with Potential

      April Lynn Banks is four years old. She has athetoid cerebral palsy resulting in very limited control of her arms and legs and she has no speech. Although April cannot walk by herself, she is able to get around by rolling or commando-style crawling on the floor. She also has a walker with wheels and a seat. By strenuously pushing with both legs at once, April can propel the walker and get just about anywhere she wants to go. The walker gets April up off the floor and at a level where she can reach table tops, shelves, and the play kitchen appliances -a favorite activity of hers in the classroom. While in the walker, April also has more use of her hands and arms for playing. She can grasp objects and hold onto them, but she is very limited in what she can do with the toys once she has them. For example, April's arm and hand movements are far too jerky to accurately put a spoon into a play tea cup. Nevertheless, when she was in the classroom, she loved nothing better than to spend time playing with the toy pots and pans at the tot-sized play kitchen sink.

      April has very few self-help skills. She relies upon adults completely for dressing, bathing, grooming, eating, and toileting. Her teacher, Leigh, had been somewhat successful in toilet training April while she was in the classroom, but she has not been in the classroom for more than two months now. According to Rick, it doesn't appear as though her mother, Margaret, has continued the toileting program at home. Another socially significant characteristic of April is that she drools constantly. Every time her head drops forward, the drool comes cascading down her chin and neck. She doesn't appear to have any control over it.

      It is difficult, if not impossible, to get a handle on April's cognitive level of development because of her severe physical involvement and her lack of speech. The professionals on the early intervention team have tried all of the tests for special populations and adaptations of standardized tests in an attempt to get a better picture of April's potential. The majority of psychological testing has indicated that April's abilities fall within the mental retardation range of intellectual functioning. Nevertheless, the psychologist has some doubts about the accuracy of these tests for April. She may, in fact, be closer to normal in intellectual abilities than test scores indicate. Testing conducted by the speech-language pathologist reveals similar levels of abilities in terms of receptive language.

      The early intervention team is concerned about April's school placement when she reaches five years of age and is eligible for kindergarten in the public school system. It is the general consensus among team members that, with rather intensive intervention efforts, April stands a chance of not being placed in a  self-contained, multiple disbility classroom. If she could show more of her cognitive abilities and become at least somewhat independent, perhaps she could be placed in a self-contained special education class for higher functioning children. There was also the outside chance that the school could be convinced to include April in a regular kindergarten classroom.

      To this end, Rick had managed to work along with Margaret to secure funds to purchase an electric wheelchair for April. It was hoped that April could be taught to use an adapted toggle switch to direct the chair. It would take a lot of training, but it seemed it might be possible. The wheelchair arrived three months ago but couldn't be used right away because of a battery connection problem. Now the chair is working fine, but April has never had a chance to try it. Margaret doesn't want the wheelchair in their home because the house is too small. It would be difficult to carry it up the steep steps to the house, and she says she doesn't have storage space for it. Consequently, the wheelchair is in the storage room in the classroom.

      The speech-language pathologist had also worked with the teacher, Leigh, to develop an augmentative communication system for April. If she had some way to express her wants and thoughts, perhaps she would not appear to have such severe disabilities and would be more independent. The first communication board consisted of just a few pictures under a plexiglass cover on the trays of April's travelchair and walker. Different sets of pictures and symbols were later developed for activities such as meals, free play, outside play and music time. April seemed to catch on fairly quickly; however, it was difficult for her to accurately move her arm and hand to point to the picture she wanted. It took a long time and a lot of effort for April to say what she wanted to say, and when she got excited it was almost impossible. The problems escalated when Leigh tried to put more than four or five pictures or symbols on a single board. They were trying some board adaptations and looking into a computerized system when April stopped coming to the classroom

      Rick was working on the home front. He had been providing home-based services to the family for a year. Although Margaret agreed with the use of augmentative communication in the classroom, she did not do much in the way of carrying over the programming at home. When Rick visited the home, the communication boards were usually sitting beside the kitchen door along with the travelchair or they had been left in the classroom. Occasionally the tray, along with a communication board, was still on April's walker. When Rick brought up the subject of the communication system, Margaret typically responded by saying that it was difficult to use the board when she had so much to do and that she felt as though she understood April well enough to know when she wanted something and what she wanted.
 

Visiting Old Friends

      Rick didn't bother with the travelchair. He picked April up and carried her to the door where Leigh was waiting. Upon seeing Leigh, April's anxious arms started to pummel Rick about the head and shoulders. "Hey, little girl," he said, "You'd better stop beating me up!"

      "Hi, April!" said Leigh as she opened the door to let them in. "It's so good to see you. We've missed you so much!" Leigh took April from Rick's arms and gave her a kiss. Rick went back to the car to get April's things.

      Leigh carried April over to the big round table where an adult and four children were playing with blocks and a farm animal set. She sat April in the chair with an adapted insert and pushed her up to the table. Three-year-old Hannah got out of her seat, walked around the table, and sat a horse and a pig in front of April. She walked back to her chair without saying word. "Hannah, that was such a nice thing to do," said Leigh. "Thank you for sharing with April. Are you happy to have April back again today?" Hannah nodded her head and grinned shyly. Leigh put the horse within April's reach and April grabbed it. Rick was coming up the ramp with the travelchair, April's walker, and a grocery bag. Leigh hurried over to the door to help him in.

      Leigh put April's things away and returned to where Rick was standing. He was watching April playing at the table. She was trying very hard to put the horse into the barn held by the adult.

      "It sure is great to see her back with her friends, isn't it?" Leigh commented.

      "She's as happy as a clam," answered Rick. "You'd just die if you saw where she spends her days now."

      "Why?" asked Leigh. "Where's that?"

      "Do you really want to know?" asked Rick, a little sorry that he had raised the issue.

      "Of course I do."

      "She stays with a woman named Nell," began Rick. "I had to go see April there one day to get a measurement of her so that the adaptive equipment specialist could adjust her walker. Nell lives in a trailer without air conditioning. It was hot as hell in there, even with electric fans going. When I walked in, April was just lying on the sofa with some soap opera on the television in front of her. My bet is that April spends most of her time just lying on the sofa there. Nell seems to take good care of April, physically, but I doubt that she provides any real stimulation. Nell has a baby of her own who looks to be about six or seven months old and I didn't see her doing much with him either."

      "That's terrible," said Leigh. "Does Margaret know what's going on there?"

      "I don't know," replied Rick. "Actually, I suppose she does. It's not exactly a horrible place, you know. It just isn't the best place for April. Nell seems to care about April but she doesn't seem to understand that she's not an infant or a basket case. Then again, maybe it's just her idea of what good care is."

      "There must be a better place for her than there or a way to get her back here full time," said Leigh.

      "Margaret seems quite happy with Nell," said Rick. "She's dependable, available at odd hours, close by, and meets April's physical needs. Besides, it wasn't easy for Margaret to find someone locally who would keep April at all."

      "I know it's been hard on Margaret," said Leigh. "I admire her for going back to school and working all of the long hours that she does. But what about April? Doesn't Margaret realize that April needs a lot more than she's getting? There must be something else ."

      Rick's attention was diverted to the classroom. The adult and the other four children had gradually wandered away from the table and formed in a group on the floor behind April. They were all looking at and playing with some new matchbox cars that one of the children had brought to school. April was inadvertently left behind at the table. The farm animals and barn were now well out of her reach and she was just sitting there with a blank face and drool dripping down the front of her shirt.

      "Hey, April!" Rick called out. "What's the matter? Did you get left behind in the dust?" April looked up at Rick and stared at him. "What's wrong?" Rick asked. April craned her neck trying to look at the group of children behind her. "Well, if you want to be over there, you'd better speak up," Rick said in a half-teasing manner. "Go ahead . tell them," he continued. Rick stood silent for a minute.

      "Aaaaah ." April yelled.

      "Alright!" said Rick. "Now, that's what I call speaking up for yourself." Rick walked over to April, picked her up and plopped her on the floor beside the group. She was immediately included in the group's activity. Rick walked back to where he had been standing with Leigh.

      "You know," Leigh said, "Maybe we could arrange for transportation back and forth to school. There must be some way ."

      Rick interrupted: "Transportation isn't the only issue, remember. That's just a small part of it. The real problem is Margaret's work schedule and practicum placement for her nursing program. She has to be one place or the other an hour or more before the classroom opens and often isn't finished until some time after the classroom closes."

      "Did you ever talk to her about the possibility of arranging respite services for before and after school?" asked Leigh.

      "I mentioned it to Margaret," said Rick, "but it didn't go over too well with her. Basically, she said that she couldn't deal with the extra stress of always trying to arrange respite services. She also said something about taking on extra hours at the hospital to make more money, and she needed babysitting she could count on. I suppose Nell's it."

      "Maybe we could take responsibility for arranging respite services," suggested Leigh. "Do you think you could talk to Margaret about it again. It's worth a try, isn't it? You know how much April regresses when she's been out for a month or two."

      "I suppose I could," Rick said hesitantly. "I'll see her this afternoon when I take April back home. Maybe I could bring up the subject then. But, for now, I better get over to the office. We have a team meeting in 20 minutes. I'll see you at 5 o'clock."
 

Taking April Home

      Rick arrived with April at the Banks's house at 6:00 P.M. An accident on the interstate had slowed traffic. Rick carried April up the steep steps to the front door and knocked. Margaret came to the door, took April from Rick's arms, and put her on the floor in the living room. Rick went back to the car for her things, and Margaret followed him to transfer the travelchair from his car to hers. When they returned to the house, Margaret headed straight toward the kitchen to check on the dinner she had cooking on the stove. Rick put April in the walker and went through to the kitchen to talk to Margaret.

      "Have a seat . if you can find one," said Margaret. "Just put that laundry basket over there on the washer." The sergeant-like quality of Margaret's voice always took Rick back a little, but he had gotten used to it. "How'd she do on her hearing test this morning?"

      "Pretty good," answered Rick, picking up the laundry basket. "The audiologist said it was hard to be sure, but April seems to have a slight hearing loss in her right ear; maybe 10 to 15 decibels. He said that her tympanogram in that ear was a bit flat, which might account for the loss. That means that she might have some fluid behind her eardrum. He suggested that you take April to see an ENT as soon as you can and retest her hearing later." Margaret continued to stir the pot on the stove. Rick carried the basket of folded laundry to the washing machine on the far side of the room and then returned to sit in the chair he had emptied. He waited for Margaret's response.

      "I'll take her as soon as my check comes in," Margaret finally said. She didn't even turn around to face Rick. She just kept stirring. "Is that why she can't talk?" she asked.

      "No. I don't think so, Margaret," answered Rick. "Her not talking is probably part of the cerebral palsy. It probably affects the muscles she needs to talk just like it affects the muscles in her arms and legs."

      "Oh yeah, I just forgot," said Margaret. "Well, like I said, I'll take care of the ENT thing as soon as I can. They have a clinic at the hospital."

      Margaret poured a cup of iced tea for Rick and sat it down in front of him without a word. She went back to her cooking as Rick sipped on the cool drink. From the other room he could hear April banging a toy against the tray of her walker. He could also hear JoAnn, Margaret's 11-year-old daughter, playing with April. JoAnn was great with April. Rick was always impressed with the amount of loving and caring she provided to April. Not many 11-year-olds could be expected to show the level of altruism that JoAnn did where April was concerned. JoAnn seemed to understand her little sister in a way that nobody else did.

      The clatter of a pot lid drew Rick's attention back to Margaret. She was a short, heavyset woman with wisps of gray streaking her dark, curly hair. Although she was only 37 years old, Margaret could easily be mistaken for a woman ten years older. You could see that she was probably once a pretty woman, but now her eyes looked tired and worried. Rick looked down at his drink and the circular pool of water that had formed on the marbleized formica table. The table reminded him of the one his own parents had had when he was a kid. It dawned on him that Margaret had never once mentioned her own parents in the year that he had been visiting here.

      Margaret didn't have a husband. She had been separated from her ex-husband, Ray Banks, for two and a half years. Rick had never met Ray; nor was he ever likely to meet him, but he had heard about him from veteran team members. Evidently Ray was an alcoholic and a mostly-unemployed carpenter. He now lived at the other end of the state with their 15-year-old son, Corey. Corey had stayed with Margaret for a year after the separation, but he was constantly in trouble at school and in the small town where they lived. Corey wanted to live with his father and eventually Margaret gave in and let him go live with Ray. She had more than she could handle anyway with April and JoAnn and the lack of financial support from Ray.

      According to the previous team member who visited the Banks's home, it was after Corey left that Margaret decided she was going to make it on her own and enrolled in nursing school. For more than a year now, Margaret had been attending classes and completing practicum placement requirements in addition to her job as a nurse's aid at the hospital.

      Margaret lives on a shoestring budget and is frequently in financial straits. Last Fall, one of her state supplement checks for April was stolen out of her mailbox and she didn't have enough money to make the rent. When she was threatened with eviction and couldn't get a loan from the bank, she told Rick about it and asked if he knew of any other places she might try for a loan. Rick helped to arrange a loan for her through a special funds account at the Center. They were willing to give her the money, but she insisted on the loan.

      Rick suddenly remembered his mission-to ask Margaret about respite care and the classroom. He tried to strike up the conversation again. "April had a great time at school today," he began. "Leigh was tickled to death to see her . so were the other kids. She ought to sleep well for you tonight."

      "I'll bet she did have a good time," said Margaret. "They probably spoiled her rotten."

      "Well, maybe just a little bit," said Rick grinning. "You've got some kid there you know, Margaret."

      "Yeah, she's something alright," said Margaret. "She's a real mess."

      The conversation continued for a few minutes, but Rick couldn't seem to find an opening to bring up the issue of getting April back in the classroom. Or maybe he really didn't want to raise the issue at all. After all, Margaret had refused respite care just a month ago. Rick wasn't sure how he felt about it, but he knew that he better take action or call it off before Margaret's dinner was finished and the kids came in to eat.
 

An Invitation to Dinner

      The conversation with Margaret dwindled as she busied herself with last minute dinner preparation. Rick sat silently at the table, still debating over whether he should bring up the issue of getting April back into the classroom. His thinking was abruptly halted by Margaret's booming voice. "JoAnn!" she yelled. "JoAnn, come on and bring April on in with you. It's time to eat."

      Rick thought the decision had been made for him. It was a pretty clear message that the home visit had ended. Rick pushed his chair back and started to stand up when a plate of food seemed to drop out of nowhere onto the table in front of him. When he looked up, Margaret had turned around and was already heading back to the stove. Rick looked down at the aqua-colored plate piled high with ham, potatoes, and green beans. He just stood there and stared, uncertain of the message that was being sent. Margaret was dishing out food onto another plate and glanced over at Rick. "You haven't eaten yet, have you?" she asked.

      "Well, uh.... no, not yet," Rick managed to say in spite of his bewilderment.

      "Sit down and eat a bite of supper with us then before you go," said Margaret. "We've got plenty." Margaret's tone of voice made it sound more like an order than an invitation.

      "Okay. Um.thanks," answered Rick and he reluctantly took his seat again.

      By this time, JoAnn was making her way through the kitchen door with April in tow. She guided the wheels of the walker over the threshold and pushed April to a place near the table. Then, she started getting out knives and forks and set the table while Margaret finished with the plates.

      Rick rather enjoyed the dinner. JoAnn entertained him with stories about school and the kids in the neighborhood. Margaret said very little, as she was busy feeding April and eating her own dinner at the same time. Rick couldn't help noticing how well choreographed her actions were. Margaret had a single plate of food in front of her from which both she and April were eating. She held a fork in one hand and a large washcloth in the other. Like a well-oiled machine, Margaret would eat two bites of food herself, give April a bite of chopped food she kept on one side of the plate, wipe April's mouth with the cloth, and start the cycle over. Her rhythm was only broken occasionally to give April a small sip of milk or to chop up more food.

      At the end of the meal, Margaret told JoAnn to take April into the bathroom, wash her face, and then play with her until she washed the dishes. JoAnn dutifully responded and wheeled April off through the doorway. Rick helped Margaret with the dishes and they were finished in a short time. Then Margaret offered Rick another glass of iced tea, which he accepted, and the two of them sat down at the kitchen table.

      "How are your classes going?" Rick began the conversation.

      "Not too bad, I guess," said Margaret. "Some of them are getting a little tough now though. I suppose I'd be doing a lot better if I had more time to study my books."

      "It must be hard to find time to study," said Rick. "It seems to me that your schedule is pretty packed just with working and taking care of the girls."

      "Yeah, I stay pretty busy most of the time. It's the practicum placements that really take up the time."

      "Where are you doing your practicum?" asked Rick.

      "At Taylor County General," she answered. "I'm in the maternity ward right now and next month I move over into cardiology."

      "Do you work at Taylor County too?"

      "Sometimes," answered Margaret. "I pick up some evening shifts and weekend shifts at Taylor. Other times I work at Lynden Memorial."

      "Does Nell watch the kids most of the time?"

      "Mostly. Sometimes I have to put April in respite at the center when I work weekends or holidays. My sister usually looks after JoAnn then. She lives over in Weston."

      "I take it that you're pretty satisfied with Nell watching the kids," said Rick.

      "Well, at least I know they're going to be fed and looked after," replied Margaret. "It's better than that respite program at the center. I hate the thought of leaving her there with those kids that can't do anything. They don't even let her wear her own clothes there. They all look alike.... like some kind of vegetables."

      "Does April like it at Nell's?" asked Rick.

     "I don't know that it bothers her one way or another. I suppose she'd be a lot happier if there were some bigger kids there for her to watch. Nell's little one is a bit too young to be any fun for her. But, most days JoAnn is there with her after school."

      "Do you think there's any way we could get April back into the classroom where she could be with her buddies?" asked Rick, hoping he wasn't overstepping his bounds.

      "I know you must think I'm terrible, Rick, but I've got more than I can handle right now as it is."

      "No, Margaret," Rick quickly responded. "I don't think you're terrible at all. I don't know how you do everything that you do. I don't think I'd have the energy. It's just that, if you really do want April in the classroom now, I might be able to help find some ways to make it easier."

      "I know you talked about getting respite care before and after school," said Margaret. "But, it just wouldn't work. I know it as sure as I'm sitting here."

      "How about if Leigh and I took responsibility for arranging respite care?" asked Rick.

      "That's not it. People back out of respite. They're just doing it for the extra money and if their own kid gets sick or something else comes up, well, you're stuck. I can't afford to be stuck like that. Besides, at least when she's at Nell's, I know exactly where she is. I don't have to be traveling all over Taylor and Brock counties to pick her up. Even if the respite did work out, there are days when April's sick. They won't keep her in the classroom when she's sick. You know, she hasn't been sick nearly as much since she's been staying at Nell's."

      "It sounds to me like you've pretty much decided to keep things as they are for right now," said Rick. "That's fine. I think I understand how it's easier for you this way. But, I'm left wondering if there's anything that I could be doing differently. I'd be happy to help out with anything I could. Can you think of anything?"

      "I don't suppose so," answered Margaret. "I've just got to try and hold things together until I get this degree finished and can earn enough money to get us out of this hole."

      "How about April?" asked Rick. "Is there anything you're working on with her that I could help out with?"

      "Well, I guess I'd like to get her out of those diapers if I could." Margaret paused for a moment and then continued: "You know, Leigh told me that not being potty trained would really hurt her when she went to kindergarten next year. She said that, if I didn't get her trained, April would be put in a classroom at Iverson School with all of the retarded kids who can't do hardly anything."

      "When did she say that?"

      "A couple of weeks ago when she called me up about whether April was coming back to the classroom. I thought about what she said for about a week or so and it finally bothered me so much that I went out there to that school one morning on my way home from night shift. I just had to see what it looked like. Well, the principal didn't want me nosing around the classroom and tried to put me off-wanted me to make an appointment. But, he finally let me go look through the doorway at that class. And let me tell you, that ain't no place for my April. Most of those kids were just lying around on mats in the middle of the floor with two women shaking toys in front of them. Some of them were a little better off, but not by much. Do you think they'll really try and make my girl go into that class?"

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.

April Must Wait Discussion Questions