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Balancing Act: Self-Care for Parenting Children with Disabilities

10/24/2023

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PictureImage via Freepik
​Guest blog by Jennifer MacGregor
Caring for a child with a disability requires unswerving dedication plus emotional and physical resilience. The unique challenges make parental self-care an overlooked priority.
Here are some strategies to help parents cope:
  • Getting enough sleep can be difficult, and Sleep deprivation is a major trigger for many parents. Sleep trackers can help understand sleep patterns and quality. They identify sleep disturbances, enabling you to make necessary adjustments for improved rest.
  • An acute awareness of one's emotional and physical state is crucial for nipping fatigue in the bud. Mobile apps that track mood and emotional well-being offer a convenient way to monitor fatigue levels. Such apps can send alerts as a reminder to take a break or employ stress-management techniques, allowing you to step back before exhaustion impacts your caregiving abilities.
  • Setting personal goals adds a layer of intentionality to self-care. These objectives should be both achievable and fulfilling, considering the additional responsibilities that come with parenting kids with disabilities. Time management software can help you allocate time effectively between your caregiving duties and personal goals. It tracks the time spent on various activities so your personal development doesn't take a back seat.
  • Continued personal development is essential, even when faced with the challenging responsibilities of caregiving. Activities like online courses can instill feelings of accomplishment and elevate self-esteem.
  • Outside support can be invaluable, such as therapy and support groups. Telehealth services make appointments convenient.
Navigating the landscape of special needs parenting is a monumental task that makes self-care not a luxury but a necessity. You can establish a well-rounded self-care plan by recognizing fatigue triggers, developing self-awareness, and formulating and pursuing personal goals.

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Autism and Halloween: 10 Tips for Happy Memories

10/9/2023

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By Trevor Pacelli
So many people of all ages love Halloween, yet this time of year could also really upset someone on the autism spectrum. Therefore, here are some essential tips that can help anyone with or without autism enjoy this spooky time of year despite the limitations:
1. Prepare for the Scares
Kids with autism have many hyper-sensitivities, and since Halloween is the season of sending chills, an autistic child could turn queasier than usual at the sight of blood, even fake blood. For instance, they might strongly hesitate to step inside a costume shop full of ghoulish lawn decorations. It’s important that a parent is there to be on the lookout for such distressing decorations and guide their kid’s eyes the other way whenever possible.
2. Jack-o-Lanterns and Scarecrows are Fun Sensory-Friendly Activities!
While growing up, my sister and I bought our own pumpkins, drew faces on them, and our dad used a small saw to cut the lines for the faces. Then we put our jack-o-lanterns on the porch right next to the scarecrow we made from clothes full of crumbled-up newspaper with a fabric sheet wrapped around a soccer ball for the head. The saw can be awfully loud, but the child doesn’t have to be in the room while it’s on, and simply cutting into the pumpkin with a knife will get the job done too!
3. Special Interests Can Inspire Costume Ideas
I have fond childhood memories of preparing my Halloween costumes with my mom. One year, she helped me make a costume based on a superhero character I created. Another year, she bought used clothes to cut up, paint over, and distress so I could dress up as Two-Face from Batman. These were fun projects for my mom and me to bond over, and they were inspired directly by whatever I was interested in at the time.
4. My Costume Hurts!
Autistic people often are hypersensitive to certain clothing materials or smells, and that can include the distinct latex odor of a rubber mask. These costumes would be no fun for kids on the spectrum to wear and at times can even be painful. So, parents should think twice about encouraging their child to wear a certain costume just because it would look “so cute.” If the costume is causing them pain, then the Halloween season will be no fun for them at all.
5. Trick-or-Treating Together
Most kids go trick-or-treating in groups every year, yet a child with autism, who often struggles to make friends, might have nobody to spend the evening with besides Mom, Dad, or an older sibling. This can make Halloween a lonely time of year, and it can break the hearts of parents to watch their child go trick-or-treating alone. One solution might be to arrange a meetup with family friends who have kids around the same age as the autistic child.
6. Overstimulation Around the Houses
A kid with autism could hate houses with flashing light patterns or loud sound effects, which could make them even less likely to say, “trick or treat.” A quick way for the autistic child’s parents to explain why their kid won’t make eye contact is to show the questioning parents a small card that explains the kid’s sensitivities. However, it’s not advisable to give that child an “autism” badge or make them carry a blue jack-o-lantern bucket because that could lead to bullying.
7. Will Stranger Danger be a Problem?
Probably not. The kids will be surrounded by plenty of other adults also chaperoning their little trick-or-treaters, and most parents in neighborhoods are friendly. Also, the stories of kids being killed or injured by razor blades hidden in candy are mostly just myths. Any accounts of Halloween candy being tampered with are few, and hardly anything to stress about.
8. Sometimes the Child Would Rather Stay Home
I personally loved dressing up and getting free candy, but when my work on the streets was done for the night, my mom handed the door-answering duties over to me. It was more fun for me to see the costumes worn by the other kids, some of whom were from my class. This could be more comfortable for a kid with autism—no costume to wear, no flashy lawn decorations to look at, no cold weather to walk through, and the only eye contact that needs to be made is with other kids.
9. Know the Limits of Candy
I struggled in the past with just how much food was too much since I lacked the judgment of portion sizes that others had. Kids on the autism spectrum could be the same way, where they don’t know how much candy in one sitting is too much. While any kid would want to eat as much as they can in one sitting, they usually know by instinct when to stop. Yet by the time an autistic child has registered that they’ve had enough candy, they’ve already eaten twenty candy bars.
10. The Child Must Know When to Stop Trick-or-Treating
I was twelve when I last trick-or-treated, which I’d say is an appropriate age to stop. While there are many things in life you shouldn’t feel ashamed of never outgrowing, trick-or-treating isn’t one of them. Autistic kids can lack common sense about whether they’re too old to enjoy something. In my experience, I was still watching preschooler TV shows when I was in third grade, and needed to be told what those shows’ target audience was.
I hope these tips help your child with autism create as many happy memories of Halloween and trick-or-treating as I have.
Trevor is an adult with autism and is the author of Six-Word Lessons on Growing Up Autistic and What Movies Can Teach Us About Disabilities.

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    Inspiration for Life with Autism

    This blog is written by Trevor Pacelli, a young adult with autism and an author and illustrator. Guest bloggers are welcome. 

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