Holiday Survival Tips For Families with Special Healthcare Needs

A Brief Overview 

Every family experiences holidays and end-of-year transitions differently. This article provides a sampling of ideas for families with children experiencing special healthcare needs. If a child also experiences behavioral difficulties, you may wish to read Home for the Holidays: The Gift of Positive Behavior Support 

Here are some quick takeaways: 

  • Keep to your everyday schedule and routine as much as possible to minimize medical and behavioral impacts. 
  • Add fun with home-based holiday activities and traditions tailored to your family’s needs or select family or group activities which work with your child’s medical needs. 
  • Plan and save surprises too: Mix up the activities so children can help with some planning and enjoy a few surprises. 
  • Plan for health and safety if travel is on the schedule
  • Families need a village: Help is a present, but sometimes you must ask for what is on your list. 
  • Gratitude is a gift: Moments of thankfulness calm the mind. For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series

Full Article 

Decide Which Routines and Schedules Might Be “Holiday Flexible” 

Many children with disabilities rely on schedules, either as a coping strategy or for medical reasons. It is critical to keep your child on schedule during the holidays as much as possible. This may mean leaving an event early or arriving later to accommodate tube feedings or respiratory treatments. It may mean putting your child to bed on time, even at Aunt Sally’s midnight party.” -Susan Agrawal, complexchild.org 

If your family can accommodate a bit more flexibility, a “Holiday” sleep schedule with an extra hour of special family time before bed might add a fun holiday flavor. For others, sleeping in or staying in jammies longer than usual might create a relaxing holiday feel. Be sure to call out these relaxed rules as holiday specials so everyone understands they are temporary changes and part of the “break.” 
 
Add Fun 

Families might set aside, or add onto ordinary routines, to: 

  • Bake 
  • Sing 
  • Read special stories 
  • Play games together 

On its website, WestEd.org, a California non-profit, provides a guidebook for families staying home for health and safety reasons: Caring for Young Children While Sheltering in Place.  Activity videos (story-based yoga, for example), easy-to-learn songs, arts-and-crafts, sensory play, and cooking with kids are among offerings for developmentally appropriate activities.  

Understanding your child’s healthcare needs and vulnerabilities can help with deciding which activities are right for your family.  

  • Drive-through light shows, and streaming concerts, theater, and holiday events are options in some areas that won’t expose a medically vulnerable child to other people’s germs. 
  • If weather and your family’s needs permit, outdoor holiday activities with groups of people are less likely to spread illness as we all learned during the height of the COVID-19 pandemic. Think of tree lightings, caroling, snow-sculpture or snowman-making events, and of course winter sports, if appropriate, for your child and family. 
  • One tradition that has always been virtual is the NORAD Santa tracker, which keeps tabs on Santa’s travel on Christmas Eve and has kid-centered games and songs. 

Finding the “just-right” amount of holiday celebrating can be tricky, so keep the Three Bears/Goldilocks principle in mind. For children who understand this theme, families can use the classic story to talk about how everyone makes choices about what is the “just right” amount of celebrating, eating, screen time, sleeping. 

Plan and Save Surprises Too 

A theme for the year can add a new flavor to family traditions. Here are some suggested themes: 

  • How I celebrated when I was a kid. 
  • Christmas 1821, 1721, etc. 
  • Holiday food, decorations, stories, music, etc. from another culture. 

The family can research the theme together to come up with ideas and activities. A theme night might include a chance for each family member to share something or lead an activity. On story night, each person might share a favorite holiday memory or a made-up story. If extended family want to take part, a video conference might be an added element to the evening. 

Adults can set aside a few ideas to save for in-the-moment surprises to sprinkle in. A prize, special treat, well-told joke, customized family game, or a surprise “guest” on the phone are a few ideas to plan out in advance. 

Travel 

For families choosing to travel, bags with medication and equipment still need to include masks, hand sanitizer, and sanitizing wipes. Even with mask mandates mostly a thing of the past, it’s sensible to have these on hand for crowded airports and planes and visiting more vulnerable, elderly relatives.  

If plans include planes and trains, be sure to let agents and attendants know about a family member’s special accommodation needs.  

  • Washington travelers can make preflight preparations from Sea-Tac Airport by sending an email to the Sea-Tac Airport customer service.  
  • The phone number for the Spokane Airport Administrative Offices: (509) 455-6455. Amtrak provides a range of Accessible Travel Services
  • TSA Cares is designed to aid travelers with disabilities with TSA screening procedures. Call them at 855-787-2227 (8 AM to 11 PM Eastern Time M-F, and 9 AM-8 PM Eastern weekends and holidays). 

Sugary treats might impact planning for children with diabetes: An insulin pump might help during the temporary splurges so a child can enjoy the holiday without feeling too different or overwhelmed. 

Visions of sugar plums might need a different flavor for children with specific allergies or food sensitivities. Being prepared with substitutions may prevent a child from feeling left out. If someone else is doing the cooking, be sure to share about any severe allergies to make sure utensils and mixing containers do not get cross-contaminated. 

Families Need a Village 

No holiday is ever perfect, and unrealistic expectations can cause a celebration to sour. Communicating with relatives and friends can help: 

  • Make a “Gift Wish List” for your child with special healthcare needs to let relatives and friends know what gifts will be good for your child based on what they might need to avoid and what they can use and enjoy. Many large retailers (Target and Kohls, for example) carry lines of adaptive clothing and sensory products and toys. 
  • Ask for understanding and support from family and friends to reinforce positive messages and realistic expectations. Saying no might be important, so choose what works and toss the guilt if the family needs to pass on a tradition or an invitation. Or use the “No, but” strategy and offer an alternative such as a different time or activity. 
  • As always, remember to plan self-care, whether it is a soak in the tub, a special movie with popcorn, or simply a few pauses for five steady breaths. “Putting your own oxygen mask on first” will make you a stronger caregiver.  

Gratitude is a Gift 

Gratitude helps the mind escape from stress-thinking and move toward feelings of peacefulness and grace. Taking a few moments to mindfully reflect on something that brings joy, beauty, love, sweetness—anything that feels positive—can create a sense of ease. An agency called MindWise Innovations provides tips to practice gratitude during the holidays, including this one: Make a list of things you have instead of things you want.  

For additional stress-reducers, PAVE provides a practical gift: Self-Care Videos for Families Series. We also offer short videos to help everyone find calm (Try Hot Chocolate Breath!): Mindfulness Video Series

Susan Agrawal, writing on complexchild.org, reminds us “No holiday is ever going to turn out like you want it to, even if you have the most perfect storybook family in existence. Don’t expect perfection or anything even close to perfection. For some families, getting through the holidays may be as much as you can expect. For other families, changing holiday traditions may make the season not feel the same. That’s OK. Instead, try to find the blessings in the season, whether that means seeing family members or celebrating your child’s inch stones.”  

Additional Holiday Resources 

Giving the Gift of Sensory-Regulation: Supporting a Happy Holiday Season for All 

Home for the Holidays: The Gift of Positive Behavior Support 
 
https://wapave.org/holidays-can-hurt-when-trauma-is-present/10 Tips to Surviving the Holidays When Your Child is Medically Complex or Has a Disability 

Related 
 
Respiratory Disease Health Advisory 
 
Explore Adaptive Play with Your Child 

Behavioral Health and School: Key Information for Families

When a student struggles to maintain well-being, achievement at school can be a challenge. This video provides key information for families to seek school-based services for behavioral health needs. Included are two advocacy statements that this information might empower you to say in a meeting with the school:

  1. “I want to make sure my student’s rights are upheld.”
  2. “I’m providing information and resources to help the school follow the law and educational best practices.”

Included in the video is information about truancy and a new state law that schools must excuse absences for behavioral health reasons. Also included is information from the federal Office for Civil Rights (OCR), which provided new guidance in summer 2022 about school responsibility to help instead of discipline students with behavioral health needs.  

PAVE staff cannot provide advocacy or advice. We share information to empower family members and young people who do have legal advocacy rights. You can learn this information and keep in handy when you aren’t sure whether the school is following the law or educational best practices. Please be patient with yourself while you are learning this information. It can feel like a lot! As you learn a little bit at a time, you can see how your increasing knowledge shifts options and outcomes for your student.

Here are resources from this training, listed in video order:

Summer Daily Activity List – Taking care of YOU!

PAVE has created a suggested list of activities to follow every day this summer. Give yourself grace if you cannot do everything on the list. Nobody is keeping track. Your reward will be a healthy mindset! Type Mindfulness into the search bar on our website to find other articles and videos to support self-care for everyone in the family. 

List of Daily Activities for the Summer Print list on wapave.org

Click to view this list in PDF form

Start the day with a self-care routine – Do all!

  • Eat breakfast
  • Get dressed and take a shower if needed
  • Brush teeth and hair
  • Pick up your room and make your bed
  • Put away four things that are out of place

Take care of your home – Pick one!

  • Help to wash dishes
  • Load /unload the dishwasher
  • Vacuum one room
  • Empty the garbage
  • Do a new chore!

Build your body – Pick one or more!

  • Challenge yourself to do something outside for at least one hour
  • Go for a walk, walk a pet, or draw with sidewalk chalk
  • Help make a yummy healthy meal
  • Play with friends or swing at a nearby park
  • Tired or crabby? Take a nap!

Build your brain

Build your brain – Pick one or more!

  • Do a puzzle, play with Lego bricks, make music
  • Write a story, read a book (at least 1 chapter or 20 minutes)
  • Choose something else creative that you enjoy

Build up others – Pick one or more!

  • Write a letter to a friend or family member
  • Give a compliment
  • Find a small or large way to help someone: a little kindness goes a long way!

Self-Care is Critical for Caregivers with Unique Challenges

  • Self-care is not selfish. Self-care is any activity or strategy that helps you survive and thrive in your life. Without regular self-care, it can become impossible to keep up with work, support and care for others, and manage daily activities.
  • PAVE knows that self-care can be particularly challenging for family members caring for someone with a disability or complex medical condition. This article includes tips and guidance especially for you.
  • For a quick takeaway, here is a short video to inspire self-care today: Self Care for Caregivers.
  • PAVE provides a library with more strategies to cultivate resilience, create calm through organization, improve sleep, and more: Self-Care Videos for Families Series.

Full Article

Raising children requires patience, creativity, problem-solving skills and infinite energy. Think about that last word—energy. A car doesn’t keep going if it runs out of gas, right? The same is true for parents and other caregivers. If we don’t refill our tanks regularly we cannot keep going. We humans refuel with self-care, which is a broad term to describe any activity or strategy that gives us a boost.

Self-care is not selfish! Without ways to refresh, we cannot maintain our jobs, manage our homes, or take care of people who need us to keep showing up. Because the demands of caring for someone with a disability or complex medical condition can require even more energy, refueling through self-care is especially critical for caregivers. This article is for you!

Before you read anymore, try this simple self-care tool called Two Feet, One Breath. Doctors use this one in between seeing patients:

  • Notice your two feet on the ground. Feel the ground and feel your feet under you, with the weight of your body dropping into the ground through your feet. If you don’t stand on two feet, then notice whatever part of your body is connecting you to furniture or the floor.
  • Notice that you are breathing in and imagine that breath starts in your feet (or seated body) and travels all the way to the top of your head.
  • Notice that you are breathing out and imagine that your outbreath goes all the way down and out through your feet (or seated body).

Two Feet, One Breath can become part of every transition in your day: when you get out of bed or the car, before you start a task, after you finish something, or any time you go into a different space or prepare to talk with someone. This simple practice highlights how self-care can become integrated into your day.

Keep in mind: Although a day at the spa might be an excellent idea, self-care doesn’t have to be fancy or expensive to have a big impact!

These practices matter a lot, especially because almost everyone knows or cares for someone with special needs. According to the Centers for Disease Control (CDC), at least 26 percent of the population experiences a disability. The result is widespread compassion fatigue, which is a way to talk about burnout from giving more than you get.

Anyone who isn’t convinced that self-care matters may want to watch a film by National Geographic, Stress, Portrait of a Killer, which includes research data to show how caring for a child with special needs can impact parents (minute 38 includes that report).

Below are some ways to pull on your own oxygen mask first!

Connect with others

Meet up regularly with people who have similar life stressors. The Parent-to-Parent network can help by matching parents with similar interests or by providing regular events and group meetings.

Caregivers of youth who are Deaf or Hard of Hearing (DHH) can connect with other family caregivers at Washington Hands and Voices

For caregivers of young people with behavioral health conditions, there are several family-serving agencies that might provide help and solidarity. Some agencies are listed at the end of this article and in PAVE’s Behavioral Health Toolkit.

Here are additional places to find one another:

  • School
  • Sports teams
  • Community center
  • Special Needs Parent Teacher Association
  • Extracurricular events
  • Online support groups

Get Enough Sleep

The body uses sleep to recover, heal, and process stress. If anxiety or intrusive thinking consistently interrupts sleep, self-care starts with some sleeping preparations:

Move the Body

Moving releases feel-good chemicals into the body, improves mood, and reduces the body’s stress response. Walk or hike, practice yoga, swim, wrestle with the kids, chop wood, work in the yard, or start a spontaneous living-room dance party.

Here is information from the Mayo Clinic about exercise:

  • It pumps up endorphins. Physical activity may help bump up the production of your brain’s feel-good neurotransmitters, called endorphins. Although this function is often referred to as a runner’s high, any aerobic activity, such as a rousing game of tennis or a nature hike, can contribute to this same feeling.
  • It reduces negative effects of stress. Exercise can provide stress relief for your body while imitating effects of stress, such as the flight or fight response, and helping your body and its systems practice working together through those effects. This can also lead to positive effects in your body—including your cardiovascular, digestive and immune systems—by helping protect your body from harmful effects of stress.
  • It’s meditation in motion. After a fast-paced game of racquetball, a long walk or run, or several laps in the pool, you may often find that you’ve forgotten the day’s irritations and concentrated only on your body’s movements.
  • It improves your mood. Regular exercise can increase self-confidence, improve your mood, help you relax, and lower symptoms of mild depression and anxiety. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety. All of these exercise benefits can ease your stress levels and give you a sense of command over your body and your life.

Be Mindful

Mindfulness can be as simple as the Two Feet, One Breath practice described at the top of this article. Mindfulness means paying attention or putting your full attention into something.

Focusing the mind can be fun and simple and doesn’t have to be quiet. Here are a few ways to practice that don’t involve a yoga mat or a meditation cushion:

  • Color
  • Work on/wash the car
  • Build something
  • Make art or do a craft project
  • Put together a puzzle
  • Laugh
  • Clean
  • More ideas: Mindful.org

Schedule Time

A day can disappear into unscheduled chaos without some intentional planning. A carefully organized calendar, with realistic boundaries, can help make sure there’s breathing room.

Set personal appointments on the calendar for fun, dates with kids, healthcare routines, and personal “me time.” If the calendar is full, be courageous about saying no and setting boundaries. If someone needs your help, find a day and time where you might be able to say yes without compromising your self-care. Remember that self-care is how you refuel; schedule it so you won’t run out of gas!

One of PAVE’s self-care videos for families is this one: Get Calm by Getting Organized.

Here’s more guidance: calendar.com: Why Stress Management and Time Management go Hand in Hand.

Seek Help

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. PAVE provides an article with more information:  Respite Offers a Break for Caregivers and Those They Support.

Parents of children with developmental disabilities can seek in-home personal care services and request a waiver for respite care from the Developmental Disabilities Administration (DDA). Here are resources to help with that process:

For parents whose children and youth experience conditions related to behavioral health, PAVE provides a toolkit with resources for navigating crisis systems, medical care, school, and family support networks. Here are some family serving agencies:

Parents of youth who are blind or low vision may seek support from the Washington State Department of Services for the Blind (DSB). Learn from youth at PAVE: My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind.

Parents of youth who are Deaf or Hard of Hearing (DHH) can connect with the  Office of the Deaf and Hard of Hearing | DSHS or connect with other family caregivers at Washington Hands and Voices.

Self-Care Videos for Mindfulness – Families Series

Take a Mindful Walk in Nature

Mindfulness can mean anything that helps you slow down and show up for what’s happening in a moment. This video demonstrates how to notice all of the body’s senses on a nature walk. Once it’s familiar, the concept could be useful in any environment, including indoors. Get creative and if it’s developmentally appropriate, you can encourage children to make up their own journey through their senses.

Get Calm by Getting Organized

When overwhelm is happening, it’s hard to imagine that getting organized will help. But here’s why it’s worth it: When you feel satisfied that you’ve done something, your brain releases happiness chemicals and hormones. This video provides information about how that works and how families can tap into happy by getting organized and taking time each day to celebrate everyone’s accomplishments.

Parent to Parent (P2P) Connects Caregivers Statewide for Support

A Brief Overview

Full Article

Family caregivers for children with disabilities and special healthcare needs may feel isolated or uncertain about where to seek help for their children and themselves. A place for support is Parent to Parent (P2P), a network that connects families to trained parent volunteers who have experienced a similar journey with their own children. In addition to resources and information, parents share personal support and encouragement.

Families new to the disability world can find preliminary information and request help right away by filling out a short form on a website page designed just for them, hosted by The Arc of Washington: Getting Started/Contact Us…Welcome to our World.

The first P2P program started in Nebraska in 1971. Programs started in Washington State in 1980. A national P2P network was established in 2003 to provide technical support to the statewide networks, with a goal to reach all 50 states. P2P USA provides an historical timeline.

Washington has a network of P2P programs that serve every corner of the state. The Arc provides support to the regional programs and links them to national P2P resources. Families can go to arcwa.org to find a list of P2P coordinators, organized by region and listed under the counties served.

¿Hablas español? Para más información y hacer referidos, llama a su condado abajo: Coordinadores de Enlance Hispano.

Families can request a parent match 

When reaching out to the local P2P network, families can request a “parent match.” P2P leaders will locate a helping parent volunteer who has a similar lived experience and help the families get connected. From there, a supportive relationship can develop, where empathy, hope, and strength are shared.

Helping Parents cannot provide all answers, but they share insight, solidarity, and role modeling. They also share the joy and pride they’ve experienced while watching their child grow and achieve. A phrase commonly shared is: “I know, and I understand.”

In keeping with evidence-based practices promoted by national and state P2P organizations, the helping parent volunteers are training following a specific process and all personal information is kept confidential.

P2P services are free and include:

  • Emotional support for family caregivers of children with special needs
  • Referrals for community resources
  • Information sharing about disabilities and medical conditions
  • Family matching with trained helping parents
  • Social and recreational events
  • Training for parents who would like to become helping parent volunteers
  • Disability awareness and community outreach

Someone to listen and understand

Washington’s statewide P2P is funded by The Arc of Washington State, the Developmental Disabilities Administration (DDA), and the Department of Health/Children with Special Health Care Needs. Individual county programs receive funding from host agencies, county DDA offices, the United Way, local grants, private donations, and more.

The Council for Exceptional Children published a research paper about P2P in 1999. Respondents to a national survey reported the following benefits from participating in P2P:

  • Someone to listen and understand (66 percent)
  • Disability information (63 percent)
  • Care for my child (58 percent
  • Ways to find services (54 percent)

Statewide, various agencies and family-led organizations host local P2P programs. An interactive map of Washington State provides an easy way to locate information in English and Spanish about a P2P program in your area.

Another way to begin is to contact the statewide P2P coordinator, Tracie Hoppis, by sending an email to: parent2parentwa@arcwa.org.

How to Cultivate Resilience like a Starfish

Starfish are masters at letting turmoil wash around them. They are also excellent models of resilience. This short video uses imagery from the sea and provides a strategy to get grounded, steady the breath, and cultivate four key aspects of resilience: purpose, connection, adaptability, and hope.

Become present and let thinking float away as you treat yourself to this opportunity to take a few minutes to care for yourself.

Breathe Mindfully and Give Your Favorite Stuffy a Ride

Even young children can become grounded and calm if breathing with intention is fun and accessible to them. This short video features two young models showing how they give their stuffed animals a ride while they breathe into and out of their tummies.

Have your child choose a comfortable place to lie down and place their stuffed animal on their tummy. Help them to notice what it’s like to breathe and watch the stuffy go up and down. Ask them what it feels like to notice their breathing and their stuffy taking a ride.

Our five-year-old model says, “I loved it and felt like I could fall asleep.”

Webinars offer Parent Training to Support Behavior during Continuous Learning

While school facilities are closed because of COVID-19, families impacted by disability face complex challenges. For some, children’s difficult behaviors are a regular concern. According to the Centers for Disease Control and Prevention (CDC), stress and anxiety in children and youth may show up through unexpected or maladaptive behaviors. Those behaviors might get worse because of fear, isolation, and disrupted lives.

Meanwhile, some of the help that used to be there is gone. At school, students may have gotten 1:1 support or direct instruction to encourage behavioral skill-building. Those aspects of a special education program might be difficult or impossible to provide during social distancing.

While students are learning from home, parents can request individualized support from the school to support behavioral expectations, if behaviors have educational impact. Parent training can be a related service in a student’s Individualized Education Program (IEP). As always, family caregivers can request an IEP meeting to discuss options to support academic and behavioral goals and expectations.

If the student has a Behavioral Intervention Plan (BIP), that document might hold clues about strategies most likely to work. For more ideas about how to communicate with the school in reviewing a student’s program and perhaps also designing a temporary Continuous Learning Plan, parents can refer to PAVE’s article: IEP on Pause? How to Support Continuous Learning with School Buildings Closed.

To generally support caregivers in their various roles during COVID-19, Washington’s Office of Superintendent of Public Instruction (OSPI) offers a three-part webinar designed for families to help with behavior in continuous learning environments. The webinar has been recorded and uploaded to YouTube in sections, so families can access the content at their own pace.

The webinars are moderated by Lee Collyer, OSPI’s program supervisor for special education and student support. Collyer, a parent, describes his own challenges during the pandemic alongside ideas from research-based sources. Families are invited to send questions and comments to lee.collyer@k12.wa.us.

In various forums, Collyer has described his investment in fostering positive behavioral supports for students in order to reduce disciplinary actions. In a May 13, 2020, OSPI webinar about Mental Health and Safety, Collyer said, “My fear is that we’re going to try to discipline our way out of trauma.”

Following is a brief description of each segment of the three-part webinar series, with a link to each specific webinar. If you start with the first one, you will have the option to stay connected and flow through all three. Each segment is 20-25 minutes long, and the first one includes some background information about OSPI and Collyer’s role.

Supporting Positive Behavior in Continuous Learning Environments – Part One

Collyer begins the series by sharing OSPI’s official statements related to mission, vision and equity. He offers reassurance to parents that everyone is learning something brand new together, without time for proper training, and that “We should not let pressure from schools, teachers or school communities dictate what works for our family and what kind of learning we are prioritizing during this time.”

Collyer talks about the value of learning that is imbedded in everyday activities and part of family routines. He shares insights from psychiatrist Bruce Perry and psychologist Ross Greene, both widely regarded authors who apply their research to inform parents. Their names are linked here to practical articles about supporting positive behavior, and both are easily searchable to find additional materials.

The OSPI webinar includes signs of stress and anxiety to consider. Collyer recommends behavior solutions based on skill building: If children do not know how to do something (like behave), the answer is to teach, he points out, not punish. The segment ends by explaining how behavior serves a function and understanding that function is key to reducing escalations.

Supporting Positive Behavior in Continuous Learning Environments – Part Two

The second segment begins where the first leaves off, by discussing the functions of behavior and how to identify them and intervene early. Pre-teaching skills and reinforcing positive behaviors over negative ones in a 5:1 ratio is encouraged: For the best outcome, catch a child doing what is expected and provide encouragement five times more often than calling out an unexpected behavior.

The second segment also provides some specific strategies for home/school communications. Collyer describes the difference between a consequence and problem-solving and offers specific strategies for parent/child problem-solving.

Supporting Positive Behavior in Continuous Learning Environments – Part Three

The third segment begins with information about how a crisis might escalate and how reason and logic are compromised when fear and frustration highjack a person’s response system. Adults may need to consider their own escalation cycles and develop a personal plan for self-control to support children, Collyer says.

He describes how children might be uneven in their development of cognitive versus social-emotional skills and how that might create confusion about the best parenting strategy. How to set limits with considerations for trauma and ways to shift from negative to positive interventions are additional strategies provided in the final segment of this webinar series.

For additional resources from OSPI, visit the page for Special Education Guidance for COVID-19.