Amanda Ronan

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Caring for a Child with Autism: Beyond Isolation and Confinement – a guest post from Amanda Ronan and get your free guide to help

Autism and Parenting

Autism and Parenting

As the father of an eight year old boy with autism I appreciate a lot of the probelms which my fellow parents face. Indeed , I’d guess, all of us feel emotions such as isolation some of the time. Yes I know there are some real high parenting a child with ASD but sometimes…………..

So we are really happy to introduce the latest guest post from Amanda Ronan. You can read the original here. You can also download a useful guide from the site!

It had been a surprisingly easy day for Josephine* and her husband Ryan. Caleb, their four-year-old son with autism spectrum disorder (ASD), had met with the occupational therapist in the morning. In the afternoon, they’d sat together practicing the Floortime approach and following Caleb’s lead as he played after his nap. Even the after-dinner bath, which was sometimes a meltdown trigger for their son, went smoothly. Caleb had giggled and played with toys, barely noticing Ryan and Josephine washing his hair and rinsing him off.

After going through Caleb’s extensive bedtime routine, Josephine settled on the couch with her husband and breathed uneasily in the silence. She tapped her feet and checked her phone over and over, not looking for anything in particular.

Her husband, sensing her agitation, asked, “Want to watch a movie?”

Josephine shook her head. Since Caleb had been diagnosed three years ago, she and Ryan had been thrown into an unpredictable world of specialists, meltdowns, medications, and aggressive outbursts. On nights when they actually got Caleb in bed at a reasonable hour and were still speaking to each other, they’d fallen into a pattern of watching a movie and inevitably falling asleep on the couch, fully dressed. They never felt like they had enough energy to do anything different. Many nights lately, though, the couple argued over everything from Caleb’s treatment to whose turn it was to do the dishes. Josephine felt such cabin fever staying at home all day that she envied Ryan for leaving the house for work, while Ryan felt guilty about leaving his wife alone, and also exhausted by the financial pressure. The stress of it all sometimes felt as if it was undoing them, which was all the more devastating since Josephine often felt they were all each other had. The days of supportive girlfriend lunches and Ryan’s biweekly poker games were long over.

“I wonder if Marcy and Ted want to come by,” Josephine said, her voice brittle with timidity and hope. “We could catch up with them for an hour or so. What do you think?”

Ryan nodded. “Yeah, that could be good. How long has it been since we’ve seen them?”

Josephine shrugged. In fact, she could not remember the last time someone other than Caleb’s therapists had been to the house. Her own parents had visited one time in the last three years. After they left, Josephine’s mother called to say they wouldn’t be visiting again until “that boy was back under control.” Josephine winced even now remembering the icy, judgmental tone in her mother’s voice. The fact that she would give up being a grandmother because she couldn’t accept that her grandson had special needs was something Josephine couldn’t comprehend. Her mother had been there throughout all of the disasters and mistakes Josephine had made as a child and teen. The idea of facing the biggest challenge of her life without her mother’s support sometimes felt crippling. And infuriating. Josephine nursed a silent but boiling anger at her mother for abandoning her at the most crucial time of her life.

But that wasn’t the only loss. Even their friends had eventually stopped visiting and calling. Josephine and Ryan used to be everyone’s favorite couple to spend time with. They were smart, funny, and loving. They had been high school sweethearts and married after college. Neither couldn’t imagine raising a family anywhere but their own hometown, so they moved back not long after the wedding. Many of their childhood friends were still in the area, so they had a built-in social network. As their friends started having children, Josephine and Ryan fantasized about the idyllic life they knew their own future child would have—safe streets, family nearby, best friends, and a real community. Yet, that community slipped away as soon as Caleb started receiving services for ASD.

Immediately after the diagnosis, there had been an outpouring of support from their friends—casseroles, offers to watch Caleb while they two of them went out, impromptu visits just to say hello. But over time, the kind gestures stopped. Josephine and Ryan knew they were hard to reach, because they couldn’t leave Caleb alone while they chatted on the phone, and both felt guilt-stricken about leaving the house for their own pleasure. Meanwhile, it was difficult for people to visit because the change in routine triggered Caleb’s meltdowns. But they’d never expected to feel so isolated and alone in the town where they’d both been raised. If the saying “It takes a village to raise a child” were true, Josephine and Ryan had no knowledge of what that felt like. The village had disappeared.

So Josephine had a long-forgotten sense of anticipation when her husband dialed the phone. But as she watched Ryan’s lips turn from a smile to a thin straight line, Josephine knew they wouldn’t be seeing their friends that night.

“No, I understand. I get it,” Ryan repeated a few times. When he finally hung up, he tossed his phone down angrily and rubbed his face.

“I take it they’re not coming.” Josephine tried to keep her voice light, as if she didn’t really care.

Ryan shook his head. “Not only are they not coming, but they had everyone over at their place tonight for game night and we didn’t even get an invite. I’m so sick of feeling like such an outsider with our friends. I know we say no a lot, but I still want to be invited.”

Josephine nodded. She knew exactly what Ryan was feeling because she felt the same way—angry, alone, and isolated in their home. They were torn between protecting Caleb from a world that was not built to suit his needs and wanting fellowship, support, and love from people they cared about. Josephine snuggled up to her husband. “What are we supposed to do? We can’t make people invite us out. We can’t force them to be friends with us.”

Ryan sighed. “Maybe we need new places to go, then. Maybe we need new friends.”

New choices. The experience of isolation, confinement in the home, and distance from loved ones is common for parents of children with ASD. Perhaps you, too, have stopped accepting invitations to go out or stopped having people over. Maybe your family has stopped eating at restaurants to avoid possible public meltdowns and has instead relied on take-out and delivery on days when home cooking is too much. The day-to-day care as you oversee your child’s health and development is enough to put a serious strain on your family; add to that the fact that you’re limiting your contact with friends and remaining in your home, and you’ve got yourself one stress-filled life.

The good news is that your situation is not without hope. First, the world is starting to catch up with the needs of families of children with ASD. Here are a few options to consider:

Investigate respite programs. Many state and private organizations offer respite care for caregivers of children with special needs, including those with ASD. Such programs, like those offered by the Lansing Respite Center, provide care for children and adults with special needs so that caregivers can take time for themselves. Some respite care can be provided in the family home, and some is provided at a care center. Perhaps having a stranger care for your child seems impossible or out of the question. But isn’t it worth some investigation? Find a few providers, ask a lot of questions about employee background and training, and speak with other families who use the programs. Consider whether you might actually owe it not just to yourself but your family at large to take a break for your own health and well-being.

Find fun family activities outside of the home. It may seem easiest to keep your child with ASD at home for fear of possible public meltdowns and violent outbursts, but with the growing population of children with ASD, leaving the home for social outings has become increasingly easier. You probably know that many animal-based therapies, like some farms and equestrian programs, not only offer children with ASD support, but also invite the family to ride horses and participate in social activities. But have you heard that many entertainment companies recognize the special needs of children with autism and are modifying their performances to accommodate those needs? In New York, Big Apple Circus worked with Autism Speaks and The Theatre Development Fund’s Autism Theatre Initiative to design a “sensory-friendly” circus show. During the performance, the house lights are kept on and the volume is kept low. There is a room available with dim lighting for calming, as well as stations outside of the performance where children can participate in other activities should the circus act be too much for them. In Boston, the Broadway show ‘Disney’s The Lion King’ held an “autism-friendly” performance, which kept volume levels low and discontinued the use of flashing lights. In Detroit, the annual festival Arts, Beats and Eats has Family Days for Children with Autism, which allows families with children on the spectrum to go to the festival an hour before it opens for general admission on two different days to enjoy the event modified to diminish the sight-and-sound overload that can be challenging for the autism community. It’s not just big productions that are becoming more accommodating; fairs, zoos, and museums all over the country are taking notice of children with autism and other special needs and making it possible for all families to visit. If there’s somewhere you want to take your family, call and ask whether they have autism-friendly special events or times; if they don’t, maybe your call will get the ball rolling.

Explore social groups and camps. While you feel as though you are protecting your child by keeping him or her home, you may be hindering his or her social development. There are many programs that are run by trained therapists and teachers to help children with ASD interact with others. These social groups happen at regular intervals and they can be events that your child actually looks forward to. You’ll meet new people, as well, further expanding your connection with families experiencing many of the same ASD-related issues as your own family. Some of these groups even run weekend and summer camps.

Right now, it might seem as though you’ll never have close friendships or the freedom to leave the house again. But there are ways for you to create social connections for yourself and your child. Once you get over the initial doubt and worry about how much planning or trouble an outside-of-the-house experience can be and actually experience it, you’ll wonder why you haven’t tried it sooner.

*Josephine and Ryan’s story is based on multiple interviews with parents of children with disabilities.

 

MomofJeremy07 QueenSemaj
My son is 7 and in the past couple of years, my husband and I will go out separately so that one of us can stay home with my son. We only go out together once in a while as its hard to find a sitter that knows how to handle him.  Its so important thou. When I do get to go out with friends, its SO refreshing. As far as taking my son out, its always a gamble..Never knowing if it will be a calm experience for him or a tantrum.  His therapist advised me, no matter how hard it can be…the best thing to do, is to get our kids out as much as possible in to the world. I really do try.
QueenSemaj
queensemajworld.tumblr.com		 I am essentially a recluse now because it is just too much work to leave the house with the kids. I literally can’t even go to the grocery store unless someone is there with me to assist (my husband). I haven’t been out to socialize in forever because I don’t have the time or energy.
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Fostering Emotional Connections with your Child who has Autism – a guest post from Amanda Ronan

Autism and emotional connections

Autism and emotional connections

Welcome to the latest in a series of guest posts from the ORP Library. Today we feature an article by Amanda Ronan entitled “Fostering Emotional Connections with your Child who has Autism“. Ronan is a writer, an editor, an educator and a dreamer. She has her Master’s in Education and was a teacher of elementary and middle-school aged children for nearly ten years. While engaged with her work in the classroom, Ronan rediscovered her first love — writing.

The baby photography package seemed like an over-the-top gift from her in-laws. Briana* didn’t think the family needed pictures of James in different outfits playing with different toys. She’d already posted plenty of those kinds of pictures on Facebook. In the end, though, the baby photographer ended up capturing some stunning shots of James, looking right into the camera while smiling and laughing. Now, when Briana looks at those photos, she is grateful for the gift; the photographer was able to capture a time when James was still engaged in the world around him in typical ways. Not long after that photo shoot, when James was nearly 18 months old, he stopped making eye contact. He stopped giggling when Briana tickled him. He stopped babbling. Suddenly, Briana’s lively, active, and loving baby seemed withdrawn and distant, heartbreakingly indifferent to Briana’s presence.

After a slew of visits to multiple doctors, including appointments to check his eyes and hearing, James was officially diagnosed with Autism Spectrum Disorder (ASD). The news changed Briana’s life forever; the loss she felt when she realized her son would likely never engage with her as he once had — easily, with smiling eyes and playful giggles — was devastating. There were nights Briana pored through that photo album, wondering what she had done wrong, wishing for the past.

As James grew, he continued to be less emotionally connected to the family than Briana’s other children. When they visited the town’s annual fall festival, James would wander off to investigate something that caught his eye, rather than stay close to the family and choose a pumpkin to decorate later. During the holidays, while the family decorated the house, trimmed the tree, and sang carols, James sat on the couch with his headphones on, watching a video on his tablet. For years, it seemed there was nothing Briana could do to encourage James to participate in the family life she and her husband tried to nurture.

Perhaps you currently find yourself in the same position as Briana. Your once happy, cooing, engaged baby is now reserved and distant because of ASD. As a caretaker, you feel as though there’s more you should be doing to help your child engage with your family. Yet so many of your efforts seem ineffective, leaving your child unaffected and disinterested — and your heart broken.

In those moments, it may be difficult to remember that your child is not choosing to be disconnected from you and your family; rather, he or she just doesn’t know how to connect the way you you would like him to. The good news is that many families have had success reestablishing strong emotional connections with their children with ASD. Children with ASD react differently to different environments, stimuli, and therapies, and such connections often happen in unexpected ways and through previously unconsidered activities.

The best way to begin rebuilding your emotional connection to your child is to work with teachers and therapists who have experience working with children with ASD. Professionals can model and teach you different therapeutic strategies and approaches to help foster connections with your child. Here are a few approaches, based upon the DIR/Floortime® model, to consider:

Floortime®. Floortime is a type of developmental therapy that pushes children with Autism Spectrum Disorder to reach their fullest communication potential. Floortime uses playful interactions to mobilize development in areas associated with attention and regulation, two-way communication, and social problem-solving. According to Autism Speaks, “Its premise is that adults can help children expand their circles of communication by meeting them at their developmental level and building on their strengths.” During Floortime, parents engage with their child in activities initiated and enjoyed by the child, rather than vice versa. For example, a child might enjoy blowing bubbles over playing with blocks; during Floortime, a parent would blow bubbles with the child, eventually establishing and nurturing communication through the game, rather than pushing an activity that will become frustrating to both parent and child. Floortime allows parents to better understand their child’s likes and dislikes. Many psychologists, teachers, and therapists are trained in Floortime techniques and can help parents include it in their child’s daily routine.

Pay attention to and understand your child’s specific cues and triggers. All children give nonverbal cues as to how they’re feeling, and your child with ASD is no different. Pay close attention to the sounds, facial expressions, and small gestures your child makes when he is hungry, tired, or content. The more you are able to predict what your child wants or needs, the more responsive you will become, and the greater the trust built between you — as well as the greater the emotional connection. In the same way that understanding cues can build a connection, your misunderstanding of what your child is communicating can easily lead to meltdowns or tantrums. Your child may feel ignored and frustrated when you don’t pick up on the right cues. Likewise, it is also important to pay attention to triggers for your child’s behavioral problems. Common triggers are often environmental, internal, or interactional. Understanding what triggers challenging behavior and meltdowns in your child will make you more responsive and your relationship stronger, especially as you are reacting purposefully and in response to their cues.

Understand your child’s individual differences in sensory processing.  Many children with ASD are sensitive to lights, sounds, tastes, smells, and/or textures. What other children may find soothing or calming may irritate a child with ASD. Finding fun activities to do as a family that elicit positive responses, and take into account sensory sensitivities, can make for improved emotional connections and enjoyment. Some families, for example, have found that swimming calms their children with ASD, and allows them to be better regulated, which enhances quality family time. In fact, sometimes the floating sensation has such a positive impact on the child that he or she will allow for hugs and closeness in the water — a huge boon for a parent longing to connect with their child. Some children with ASD love swinging, so families have installed playground equipment in their backyards. Taking turns pushing the child sparks delight in both parent and child. Likewise, a parent might notice that their child is easily distracted and agitated around loud noises. This family then would try to avoid loud, highly stimulating social trips. A day-long outing at the county fair would then be off limits.

Through therapy, you can learn how to engage with your child. Through observing speech and occupational therapists’ methods of interaction with her son, for example, Briana can start to incorporate more of the things James enjoys in her own interactions with him. Instead of expecting him to join in the family fun, Briana can strive to bring the family into James’s idea of fun. Establishing emotional connections with your child with ASD may at times seem impossible, but with the right perspective, understanding, and tools, you too can experience a positive — even joyful — change.

 

For more information on DIR and Floortime, visit the ICDL website.

*Briana’s story is based on multiple interviews with parents of children with ASD.

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Personal, Solitary, Parenting Pain: The Emotional Turmoil Surrounding Extremely Aggressive and Behavior in Your Child with ASD – a guest by Amanda Ronan shared by Round Table Companies

Advice for autism parents

Advice for autism parents

Our friends at Round Table Companies have shared with guest blog post , by Amanda Ronan, with us.

Ronan share tips and ideas for helping parents with a child on the spectrum who live through extreme meltdowns and aggressive behaviour. You can read the original article here Personal, Solitary, Parenting Pain: The Emotional Turmoil Surrounding Extremely Aggressive and Behavior in Your Child with ASD.

Ronan writes “Please . . . please don’t wake up, Nora pleaded silently. A dog barking somewhere in the neighborhood had startled her fully awake, though she hadn’t really been sleeping; she’d been in the half-sleep state she’d been surviving on for as long as she could remember.

Yesterday had been the hardest day yet, and that was saying a lot, given what her family had been through over the past 15 years of living with her son who had an autism spectrum disorder (ASD), and extreme behavioral problems. They had been heading into lunchtime after a morning during which Ander had enjoyed all of his normal routines—the same breakfast he’d eaten every day for years, a quick shower, and a few hours of homeschool instruction. Now he was engrossed in his normal weekday TV show as she prepared to make his normal lunch. Routines were important, even crucial, to Ander—and to the peace of the household—so Nora had arranged her life in order to maintain them. Spontaneity, and doing things in the spur of the moment, were four-letter words in their home.

Ander would only eat nachos. There had to be only a small pile of chips, whole triangles with rounded corners, not pointy. The cheese had to be a Mexican blend with both white and yellow-orange shreds visible. The salsa had to be red and mild, pureed with no chunks. This was part of the obsessive-compulsive disorder that the new psychiatrist said her son had, along with ASD and attention-deficit hyperactivity disorder. But as Nora looked in the refrigerator, she cursed under her breath. They’d run out of cheese the day before and she hadn’t had time to visit the store.

“Hey buddy?” she called out. “How about I make us some pizza for lunch today? I know you love pizza and it’s pepperoni – your favorite!” She peeked around the corner into the living room.

Though Ander had headphones on, she could hear the sound. His expression was one of concentration, as though he’d found a moment of peace from his constant struggle to self-regulate, communicate, and actively participate in the world. She waved a hand at him. He didn’t respond.

She knew better than to remove the headphones for him. She’d tried that a few years ago, right after he hit puberty. That was the first time he’d hit her hard, a succession of several slaps to her head until she dropped the headphones and backed away. It was shocking and gut-wrenching. Before that he would lightly hit her—more in a way to get her to leave him alone.

Aggression itself wasn’t new; it had started a few years before kindergarten when he bit both his sister and the family dog, just days apart. Both had howled and become nervous around him after that, having lost trust for a period of time. Nora lost something, too at that time—the hope he’d be ready for school. Despite all the interventions, medical appointments, and therapies, she realized as she tended to her daughter’s wound that Ander might not successfully go off to kindergarten, play with the other kids, and maybe become a teacher’s pet. The journey ahead could be long and difficult; she could no longer deny it.

Not long after the biting, his meltdowns, which once had resembled a whining child’s tantrums, took another unexpected and dangerous turn when he started to throw things in the house and punch the walls. The sound of his knuckles against drywall made her stomach turn. She learned to go into the kitchen for some bandages and ice to apply to his hand when he had calmed down.

Then came the day of the windows. She would never forget the first time she heard the sound of glass shattering. Ander had put his head through the window; incredibly, though, he was unscathed. He turned around to face her, then curled up on the floor and rocked himself until he fell asleep. It took two more broken windows for them to hire contractors to install shatterproof glass windows.

Nora knew that the increased agitation, self-injurious behavior, and aggression stemmed from Ander’s difficulties with communication, social interaction, and self-regulation and that he never truly meant to cause harm and hurt himself or others. But there were times when, for his own safety and the safety of their daughter, Nora and her husband Peter had had to use the physical intervention techniques they’d learned from Crisis Prevention Institute (CPI): carefully wrap their arms around him, remove him from the circumstances, and attempt to defuse the situation. Physical restraint was always a last resort; no parent, Nora was sure, ever wanted to restrain his or her child. As he got bigger, though, she worried about what would happen if this “last resort” was no longer an option due to his size.

She found this out the day there was no cheese in the refrigerator.

When Ander saw that lunch was not what he’d expected, there was a sudden shift in his demeanor and affect. His eyes narrowed, his head shook from side to side, and his feet stomped the ground. A flush also began to creep up his neck.

“It’s okay, buddy,” she said. “The pizza is just for today. We’ll have nachos again tomorrow, just like we always do, ok?”

Ander opened his mouth and screamed at her, flapping his arms so that one palm smacked the glass breakfast table making it jump a bit. Nora jumped herself, backing up slightly. She couldn’t help it: she was actually feeling afraid of her own son. He had hit the table so hard…It wasn’t supposed to be this way…she thought to herself.

And then, in a sudden burst of movement, Ander jumped up, ran towards her, and tackled her. Nora fell backward, her elbow cracked against the tile floor, and the impact knocked the air from her chest. She was gulping like a hooked fish when Ander landed his first punch on her cheekbone. The next one caught her neck and the third her right ear, and her head reverberated with shrill ringing. Finally, with a gasp, she filled her lungs, but she couldn’t push free. Ander was stronger. So she cried helplessly as her baby boy howled and beat her. The once chubby hands that used to grasp at toy cars had become powerful fists that continued striking her until, mercifully, her husband opened the front door. Then it stopped as quickly as it had begun; Peter was still strong enough to pull Ander away from Nora—for now.

After the barking dog woke her, Nora wondered through her familiar exhaustion whether she really knew her own child, knew how to care for him, what he needed, or even knew how to be a good parent. She closed her eyes and willed the barking to stop. When it finally did, she exhaled, not even realizing she’d been holding her breath.

Nora strained to listen for any slight noises, any movements that might indicate that Ander’s sleep had been disturbed. Not hearing anything, she let her neck muscles relax and her head sink back into the foam pillow. The bedside clock saturated the otherwise dark room with the same deep red hue as the bruises on her body. In two hours, a new day would start. And she had no idea what it might bring.

As a parent of a child with ASD and extremely aggressive behavior, perhaps you can envision yourself in this story, which reflects actual parent interviews and other informed sources. Maybe you, like Nora, are feeling alone, lost, hopeless, and more disconnected than ever before.

If you are living constantly on the edge of your seat, “walking on eggshells”, trying to avoid another meltdown or manage the aggression, the self-injurious behavior, and the violent outbursts, you aren’t alone. With the U.S. Centers for Disease Control and Prevention reporting that one out of every 68 children is being identified with ASD—a huge increase from 2000 to 2010 alone—the emotional and physical turmoil associated with ASD and extremely aggressive behavior is becoming is becoming a more common scenario.

When you begin to fear your own child, it’s time to ask for help. Here’s what some parents and experts recommend:

* Build your team. Seek the assistance of a therapist with expertise in autism spectrum disorder and behavioral approaches. This person can help you assess your environment, identify triggers for behavioral problems, help with structure and routine, and provide strategies at home to prevent meltdowns and aggressive behavior. Speech therapists, occupational therapists, special education teachers, and autism in-home providers can also provide you with strategies to teach communication, social, and self-regulation skills. Respite providers and support groups can also offer provide a great deal of support for you and your family.

* If what you’re doing isn’t working, then try something different. Maybe it’s time to consider medication. Psychotropic medication does not “cure” ASD but it is often helpful for extreme emotion and behavior problems. While many parents feel fear or hesitation about using medication with their child, the right form of psychopharmacological intervention may be helpful for symptom relief and also allows therapeutic approaches to be more successful, ultimately, so that medication is not necessary in the future. Also, if your child’s therapist is not providing you with ideas and strategies to try at home to minimize the behavioral outbursts – and it seems like they are just doing a lot of “talk therapy” with your child – then it might be time to seek a second opinion. Most insurance companies will cover this type of service. If your child is in special education, and you believe that there is not a “good fit” between his needs and the services provided through the IEP – remember: you have the right as a parent to meet with the IEP team to discuss your concerns and potential changes to the plan.

* If it’s an emergency at home – then act like it – call the police or a crisis response team. Contact the Department of Human Services (DHS) in your county or jurisdiction and inquire about emergency crisis services. This is a good proactive step. The police should always be contacted if necessary but remember their primary responsibility is to ensure safety – and they are not usually very familiar or trained in how to effectively work with children with special needs. Always take necessary action to keep yourself and your family safe.

* If you’ve truly exhausted your emotional resources–then consider out-of-home care. Community-based homes and therapeutic residential treatment programs are available through county and school district funding and provide access to therapeutic care that is consistent with the individual needs of your child. They can be short-term or more long term options. Contact your local DHS or do a websearch on programs in your area – and then start making phone calls to learn more.

Parents: Remember, you don’t have to feel afraid and isolated in your own home. If you are in a very difficult situation with your child with ASD and extreme aggression, remember that you have not failed. You’ve done your best with what you’ve been given – and it’s time for more help. You are a loving, concerned parent who is trying to manage a situation that has become unmanageable. Having an awareness that you need help – and it’s okay – is one of the first steps necessary in doing what’s best for you, your family, and your child.”

Amanda Ronan is a writer, an editor, an educator and a dreamer. She has her Master’s in Education and was a teacher of elementary and middle-school aged children for nearly ten years. While engaged with her work in the classroom, Amanda rediscovered her first love — writing.