When Helping Can Hurt: Parent Enabling of Children with Special Needs

Written By: Agata Antonow

Resource Creation By: Bridget Morton

Design By: Sunny DiMartino

Amanda Wilson* knew she was in trouble when the bathroom door bounced into the wall with all the force of an angry 22-year-old behind it. Her son’s face was red as he spun away from her and she started to call out to him, trying to follow him into the bathroom.

“Chris!”

But with a sickening crunch the old frame gave way and the door fell back toward her, no longer supported by the hinges, hitting her square in the face. There was a starburst of pain along her nose and a hot rush of blood.

“Mom! Mom?” She could hear Chris screaming as she put her trembling hands over her face, trying to stem the flow of blood.

Chris’s shouts brought her husband, Jason, running, with Chris’s brother Oliver right behind him. “What happened?”

An hour later, Amanda was still holding an ice pack to her bandaged face. Chris and Oliver were both asleep upstairs.

“Sorry, Mom. I didn’t mean it,” Chris had hiccupped as she had tucked him in. With his tear-stained cheeks, he had looked like the cherub-faced little boy she had wrapped carefully in a blanket and brought home more than two decades ago.

Now Jason was sitting across from Amanda in their sunny yellow kitchen, and they were both silent, their thoughts whirling. Amanda had trouble understanding how they had gotten here. When Chris had been diagnosed with autism as a child, Jason and Amanda knew they were in for the long haul. The disorder meant that Chris struggled to understand things that they took for granted. He also learned things at a slower pace and he got frustrated more easily.

Now an adult, Chris was still living at home and needed a caregiver with him constantly during the day. Amanda worked only part-time and hired Cindy, a retired nurse, to stay with Chris during the other part of the day. Over the years, there had been many visits with social workers, doctors, and other professionals to make sure that Chris and his family were getting the support they needed from the system.

But Amanda also noticed that Chris’s moods seemed more extreme and variable than other kids living with autism. While his temper did flare often, there were also other days he seemed exhausted and would be unwilling to get out of bed. On those days, Amanda would fling open the curtains of Chris’s room and try to put on a cheerful voice.

“C’mon, Chris, up and at ’em,” she’d say, tidying up the clothes he’d scattered all over the floor. Then she’d put out Chris’s clothes for him, trying to coax him awake with what she knew were his favorite shirts.

“Don’ wanna,” Chris would mumble grumpily.

On those days, Amanda would bring Chris’s meals to his room, hoping the smell of food would wake him. As soon as he was done eating, though, he’d fall asleep again, and Amanda would be left to worry as she took the dishes away and loaded them into the dishwasher. Oliver, who was fourteen, would sometimes try to help, but he had band practice and soccer to worry about, so she would often shoo him gently from the kitchen.

Chris knew that he was struggling, and whenever a social worker from the county showed up to talk about “future options”—always after a problem—he would get quiet. “I’m sorry, mom,” he’d tell Amanda, looking contrite.

It broke her heart; Amanda knew Chris did his best and knew that when there was a discussion about what to do next, he’d feel bad. It left the whole family on edge. The professionals were sympathetic and tried to be helpful, but the difficult situation at home continued.

Last year, Amanda and Jason had learned that Chris had another diagnosable condition. “Bipolar disorder” is what this doctor called it. Amanda had been handed a prescription for lithium, the most common medication used to treat the disorder.

Amanda had hoped things would get better with medication. But Chris was still angry a lot of the time, and Amanda felt as though she were always walking on eggshells around him. She didn’t want to say or do something that would make him upset.

But surely asking Chris to brush his teeth was not unreasonable? That was a basic life task for everyone – Autistic or not.

That simple request was what had set off the latest round of yelling and left Amanda with a bruised and bloodied nose. Amanda was setting up the guest room for her mother-in-law’s upcoming visit when she realized it was time to get Chris ready for bed. She started the water for his shower and checked the temperature for him, the way she did every night since he first started showering, and laid out his pajama pants and towels.

Then she uttered the words that were the equivalent of tossing sparks into a box of fireworks: “Don’t forget to brush your teeth, honey.”

She knew immediately that it wouldn’t be one of the nights when Chris would brush his teeth without arguing with her—those nights were rare. His mouth turned down and his pale blonde brows drew together, a wary expression on his face. “Don’ wanna,” he had mumbled, turning away from her.

“Sweetheart, you need to brush your teeth. It makes your teeth healthy. You know it’s important.”

Silence. Amanda tried to ignore the hot prickle of anger that crawled up her spine, but she was too tired to fight it. After taking care of Chris all day, she also felt the stress of having Jason’s mother visit.

This accumulation of stress is what made her snap at her son. “Listen. I’m your mother, and I’m telling you to brush your teeth. It’s really not a big deal, Chris!

“I can’t, I won’t,” he yelled—his voice at fever pitch in an instant. “I hate you, Mom!”

Amanda had flinched as Chris turned around and kicked at the shower curtain, causing shampoo bottles to rattle into the tub. Next came the slammed door that had led her here, to a bruised face and a heavy heart.

Unfortunately, outbursts like this had all become more common.

While Chris would occasionally brush his teeth at night, most nights he would become extremely uncooperative and agitated for a long period of time —and it was exhausting. She’d tried everything. She’d tried bribery with stickers, and even food. She’d threatened to take things away if he didn’t brush his teeth. She’d also bought him a special toothbrush with a penguin picture on it and a new type of expensive toothpaste that was purple and had a sweeter taste. She’d put penguin stickers along the bathroom mirror hoping to distract Chris enough so that he’d brush his teeth without protest.

It hadn’t worked.

Jason glanced at her from across the kitchen table. “We can’t carry on like this. You’re hurt and my mother is coming next week. What if Chris does this sort of thing then? Mom’s tiny and seventy years old. She’d be terrified.”

Amanda put the ice pack down, picking at the blue fabric cover with the edge of her fingernail. “What do you want me to do? I just want him to brush once a day. I can’t just let him not brush his teeth. His teeth will rot.”

Jason frowned. “But he doesn’t always brush them anyway after all the arguing. Is the conflict and stress worth getting injured over?”

Amanda felt that familiar frustration rise like lava in her throat. “I don’t know what you want me to do. It’s not like you ever even get him to try to brush his teeth.”

“Well, you do everything for him,” Jason snapped back. “I mean…everything. Maybe that’s the problem. It’s ridiculous. A twenty-two-year-old should be finishing up college and thinking about a job. Instead, you’re putting out his pj’s for him and making him a snack.”

“Chris has special needs, he needs extra help, and I’m his mother. It’s what I’m supposed to be doing! You too, by the way!”

Jason glanced at the fridge, where a brochure was pinned to the shiny surface with a magnet. “Maybe we should call that organization with the group home the social worker told us about last month.”

“I don’t even know why we have that stupid flyer there,” Amanda grumbled. “Chris belongs here, with us, not in some group home with a bunch of strangers. He has a home here!”

Jason lifted his hands in surrender. “I know. But this sounds like a place where they can really help someone like Chris. Why don’t we just call them and see if we can check it out sometime? If it was Oliver who was twenty-two, would you keep him from moving out?”

Amanda got up abruptly, and walked up the stairs without another word.

Three days later, Amanda was once again asking herself: How did I get here? They had picked up Nancy, Jason’s mother, at the airport and at first everything seemed to be going well. Nancy was thrilled to see her family, hugging each of her grandchildren in turn and beaming at them.

“You boys have gotten so big—you must have grown since I last saw you!” Oliver looked slightly embarrassed by Nancy’s loud attention, but Chris smiled shyly at the silver-haired woman in front of him.

Nancy had chatted all the way home and the entire family had settled in for a meal. Over his lasagna, Chris had watched his grandmother gesturing as she told stories about her retirement community in Florida. When asked, Oliver told his grandma all about his soccer team. Even Jason was smiling, telling his mother about the deck he was planning on building in the summer.

Amanda had allowed herself to relax, feeling for the first time that all was normal. She let herself believe that everything would be okay. They were having a normal family dinner, just like anyone else. Her heart swelled with pride as she chopped up Chris’s lasagna into small bite-size pieces so that it was easier for him to eat.

This time, the problems didn’t start until it was time for bed. They had stayed up late and it was almost eleven, so Amanda was yawning as she said goodnight to Nancy, Oliver, and Jason, who all headed to bed. Amanda had laid out Chris’s pajamas before picking up her mother-in-law, so now all that was needed was to get Chris ready for bed.

She forced herself to smile when she held up Chris’s toothbrush. “Time to brush your teeth so you can get to bed and get up early to go to breakfast with grandma.”

Chris turned around in the small bathroom, his back to her.

“Come on, Chris. You need to brush your teeth. It’s late. We’re all tired.”

“No!” Chris’s shout was loud in the small bathroom.

Amanda thought back to yesterday. Had Chris brushed his teeth yesterday at all? She didn’t think so. She had been tired after grocery shopping for the day and hadn’t had the energy to press the issue. What about the day before? Not sure. That meant he had to brush today.

“Just brush for one minute, okay? I’ll start the timer.”

“No!” This time the shout was accompanied by a kick that toppled the wastebasket over. Tissues clotted with bright lipstick spilled out over the white bathroom tiles.

Amanda was aware of the bathroom door opening and saw her youngest child squeeze into the small space. Oliver frowned at his brother, the effect a little less threatening with his bedhead and sleepy eyes. “Don’t talk to Mom that way.”

Chris brought both hands down on the vanity with enough force to make the heavy wooden cabinet shudder. “No, no, no.”

His volume and pitch rose with every syllable, and Amanda could hear Nancy in the hallway asking anxiously, “Is something the matter?” She could hear Jason trying to soothe his mother.

Two hours later, Jason and Amanda were once more in the kitchen—this time minus the ice pack. The house was quiet. Not only were both boys asleep, but Nancy had decided to stay at a local motel “just until things calm down.”

Jason cleared his throat. “This can’t go on. I’d like us to call the woman from the county again about that group home. Please. I can’t believe Mom is staying in a motel tonight. How are we helping Chris if he gets so upset that even my own mother can’t visit without feeling threatened?”

Amanda rested her head on the solid wood table. What had she done wrong? Wearily, she nodded.

Helping Without Hurting: Placing the Responsibility of Daily Living Tasks More in the Hands of Your Child

They made the call the next day, and Amanda’s head and heart ached as they first met with the social worker, who explained out-of-home placement and funding options. Still, Amanda was willing to consider anything to help Chris and her family.

After the discussion with the social worker, Amanda and Jason had a phone conversation with Samantha, a woman who identified herself as a supervisor at the group home. “We have five residents right now, and our capacity is six residents. We’d be happy to meet you and your son. There’s two staff members scheduled to provide supervision and support from wake up to bedtime, plus myself most of the time during the week.”

“But Chris needs a lot of help,” Amanda told her. “How can the staff make sure that he gets help with getting dressed, brushing his teeth, and packing his lunch?”

Samantha explained that the group home completed a functional daily living skills assessment for each resident. “We’ll evaluate what Chris can do and what he needs help or support with. Then, we’ll provide the support he needs to complete daily tasks so that he can be as independent as possible.”

“Chris doesn’t always want to do the things he has to do,” Amanda admitted.

Samantha laughed. “Well, I can relate to that. There are some things—like paperwork—that I don’t want to do, either. But here we emphasize structure, routine, and therapeutic supports. Everybody has individual house responsibilities, including following the schedule, completing their personal care, and helping with house tasks and chores. We use daily and weekly visual schedules. Our basic house expectations are posted throughout the house and we talk about them throughout the day. We’re very structured and consistent in how we interact with the residents. Would you like to set up a time for a visit? You could bring Chris too. ”

Amanda still had some worries when she made the drive with Chris and Jason. Samantha greeted them at the door with a smile, her blonde hair pulled up into a bun. Chris had pointed at her shirt right away and smiled. “Penguins, cool!”

Samantha laughed. “Yes. Ever since I saw March of the Penguins, I’ve been completely hooked! Just wait until you see my lucky penguin coffee mug.”

As they went through the tour, they met Sofia, another of the residents, who was loading dishes into the dishwasher. “It’s chore time,” she told them proudly, turning to focus on arranging the plates in the cabinet. .

Ricky, another of the residents, was sitting in the main room, working on a puzzle. He didn’t say anything but he looked up and smiled, his twenty-something face lit up. Everyone was focused on their tasks, and Samantha showed them the laminated visual schedules pinned to the wall.

“See this, Chris?” she asked. “It’s now six o’clock so everyone has their work to do after dinner.” She pointed to the big yellow calendar with a picture of Sofia and the word “Sofia” across the top. She ran her hand down the side, where the hours were listed, and then across to six o’clock. The square contained a photo of Sofia loading the dishes into the dishwasher.

“Ricky finished vacuuming the floors, so now he has time to work on his puzzle.” .”

Samantha pointed to the empty space beside Sofia’s schedule. “Here’s where your schedule could go, Chris. Everyone here is an adult, and most of our residents work in the community. Throughout the week when the residents aren’t working they attend recreational and leisure activities, either here at the house, at another one of our homes, or in the community.”

On the way home, nobody talked much, but it was an easy silence. They were told the group home served individuals with autism, and everyone also had part-time jobs. Everyone completed their house responsibilities and chores. Everyone was also independent in completing their own personal care.

Amanda glanced over at Chris sitting slumped over in the front seat, and then down at the skills sheet in her hand. Samantha had told her that Chris would be evaluated in these specific areas: personal care skills, domestic skills, leisure skills, and community living. Each of these areas would be broken down into tasks, so Chris would be assessed for activities such as getting dressed, washing his hands after using the bathroom, making change, asking for directions, and crossing the street. These assessments would then help the team at the home to decide what Chris could do independently and what he could do only with caregiver support. Amanda’s eyes lingered on the “brushing teeth” entry.

Amanda had been so sure that Chris could learn to take care of some basic things by himself—and she blamed herself for not being able to teach him. Samantha had pointed out that Amanda had actually taught Chris many things over the years—and that he was able to complete many tasks independently. There were just some concerns about specific tasks, like brushing his teeth every day, that still needed to be addressed. Amanda had been grateful for Samantha’s words and hoped with time she’d be able to believe them in her heart.

“Once we identify daily tasks that he can either do independently or semi-independently, we’ll put it on his schedule,” Samantha had explained. “In the morning each day, he’ll see the task reminder, and he will know that all the tasks need to be completed before group outings or movie night. We find that once we clearly explain the basic house expectations, verbally, in writing, and sometimes with pictures—depending on their communication skills—things tend to go fairly well. It’s very important to ensure that our expectations are realistic for the individual as well, given their disability. After all, it wouldn’t make sense to expect them to do something independently every day that that they can’t complete because they don’t know how or because of their disability.

Samantha shook her head a little. “I mean—that’s why I’m not a world class gymnast. I don’t have the physical skills and it wouldn’t make sense then for the world to expect me to be an Olympic gymnast. We also find at our home that once everyone understands the day to day basic expectations, why they’re important, and the basic consequences for not following them, most of the time the residents follow through and take pride in completing everything on their schedules. We also use of ton of specific praise and social reinforcement after the residents complete their tasks.”

We find that once we clearly explain the basic house expectations, verbally, in writing, and sometimes with pictures—depending on their communication skills—things tend to go fairly well.

Amanda knew that Chris might have found his place. He had seemed engaged, comfortable, and happy while he was there. He seemed to like the other residents. He had also listened intently when Samantha had talked about jobs and had asked a question about taking the big van to the local community center for group outings.

It broke Amanda’s heart a little to think Chris might not be at home with her forever. It was hard to imagine him living a life apart from hers, but she also remembered that he was an adult, she and Jason were going to continue to age, and that it also made sense to get him prepared for a future of independence from his parents. Life does change and parents aren’t around forever after all, she thought. It felt as though there was a war going on inside her, with one part wanting to hold onto her baby and another part understanding this change would probably help Chris, no matter how much it hurt.

At home, when Amanda asked Chris what he thought of the group home and Samantha, he muttered “pretty nice.” His mouth was drawn in a tight line and he refused to make eye contact. He had headed off to his room immediately after that.

Amanda’s mind kept going back to Jason’s words—“If it was Oliver, would you keep him from moving out?” Deep in her heart, she knew the answer to that question. By twenty-two, Oliver would likely be living away from home and while moving him into his college dorm as early as 18 would sting, when the time came she would see him off with the best brave smile she could and be very proud of him.

Amanda knew that a change in living environment would be hard for Chris and for the rest of the family, but she also felt a sense of hope for the future. Maybe Chris would make new friends, live with supportive caregiving adults, and get a job with a sense of purpose for him. She was scared of how Chris would handle life on his own, where she wasn’t around to help him, but she would try to put her fears aside—as far as she was able—for her son and his future.

When Chris had left for his room, Jason picked up the phone to call his social worker about a follow-up meeting. They had said that if the parents, as Chris’s legal guardians, chose this route of community based placement in a group home, they would need to meet to discuss the next steps in the process and to create a transition plan to help with Chris’s move to the group home.

While Jason dialed, Amanda considered the possibility that they had taken only a first step on a long and winding road. Before they could move Chris out, they needed to get him ready to move to the group home. While she half-listened to Jason talk to the social worker, Amanda felt a sense of panic and decided to ask the social worker about support for herself and her family. She knew it would be hard for her to adjust to everyday life without Chris. He had been a constant in her life for 22 years. She decided that in the morning she’d ask and see whether the social worker knew of someone she could talk to herself about her thoughts and emotions on the situation. Surely there were also groups or something to help Jason, Oliver, and herself as their little family adjusted.

That night, while Amanda was brushing her teeth, she took in the silence around her. Is this what it would be like to have one less child at home? She rang her fingertip along the mug holding Chris’s penguin toothbrush, trying to picture it gone for the first time in years. She focused on the memory of Chris’s bright smile when he saw the penguin on Samantha’s t-shirt, and when Ricky showed him the puzzle he was working on, and took a deep breath. In the mirror, her tired and dark-shadowed eyes looked back at her. Would having less to do around the house give everyone a possibility of a different life?

We have a long way to go, she thought as she flipped the light off in the bathroom, but I’m willing to at least give this a chance.


*This story is part of a series based on the experiences of parents, educators and the staff of Genesee Lake School, a nationally recognized provider of services for students with special needs. GLS is part of ORP, an employee-owned family of companies whose mission is to make a difference in the lives of people with disabilities.

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