Holiday Survival Tips For Families with Special Healthcare Needs

Holidays provide a mix of social situations and emotions, and the COVID-19 pandemic adds elements that look a little different for every family. This article provides ideas for celebrating and finding points of joy, with specific tips for those impacted by special healthcare needs.

Here are the quick takeaway topics:

  • Break the routine: Although travel or a gathering with extended family might not be possible, take a break from everyday routines to share moments that feel special.
  • Plan and save surprises too: Mix up the activities so the children can help with some planning but there are also surprises.
  • Wise men staying afar? Get creative to create social contact through media and other means.
  • Handle with care: If you travel, make a careful plan for health and safety.
  • Families need a village: Asking for help from those who also care for your child can strengthen the ability to cope and enjoy the season.
  • Gratitude keeps giving: Moments of thankfulness calm the mind.

Read on for more detail!

Break the routine, but keep the comfort

Families have been home a lot in 2020, so staying home during the holiday might feel like more of the same. Seek ways to add sparkle to the holidays by doing some things the family does not always have time for: cooking or baking together, singing, story time by the fireplace, games, checking for signs of Santa or sending notes to the North Pole or other special places.

WestEd.org, a California-based nonprofit committed to equity for learners of all ages, provides a guidebook with practical support for family caregivers during stay-at-home orders. Caring for Young Children While Sheltering in Place provides quick links to activity videos (story-based yoga, for example, with winter and holiday themes), easy-to-learn songs, arts-and-crafts, sensory play, cooking with kids, and much more. Choosing a couple of developmentally appropriate ideas for each special day might add just the right amount of sparkle to a holiday staycation!

Some families struggle to keep children nestled all snug in their beds in any season. Maintaining a sleep schedule can certainly minimize challenging behaviors. However, if appropriate, a “Holiday” sleep schedule with an extra hour of special family time before bed might add a fun flavor of flexibility for some families. 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.”

Silver bells, strings of streetlights and some of the holiday hustle is still happening. Drive through light shows and virtual celebrations for Christmas, Hanukkah, and Kwanzaa are popping up online. One tradition that has always been virtual is the NORAD Santa tracker, which keeps tabs on Santa’s business 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 a few suggested themes:

  • How I celebrated when I was a kid
  • Christmas 1820, 1720, 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 participate, 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.

Wise men staying afar?

If the household is staying isolated from family and friends to slow the spread of COVID-19, getting socially connected might require a bit of creativity. Of course, video teleconferencing or video phone calls are options. Letters and cards can be sent and received by mail, email, text, video…

Someone might drop by to deliver a singing telegram from a safe distance. Special messages can get written on front windows or shared by signs placed strategically inside or outside where someone will look. In-the-car parades or celebration drive-by events work for some people, while others can meet safely in outdoor spaces.

Consider who needs to connect, what messages need to be shared, and how to make the contact meaningful, whatever the format.

Handle with Care

For families choosing to travel, bags with medication and equipment need to include plenty of masks, hand sanitizer and sanitizing wipes. Plan extra supplies to accommodate unexpected delays and follow health and safety guidance related to the COVID-19 crisis.

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: customerservice@portseattle.org. The phone number for the Spokane Airport Administrative Offices: (509) 455-6455. Amtrak provides a range of Accessible Travel Services.

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 sugarplums 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. As always, ask for support from family, friends, doctors, and therapists—perhaps virtually—to reinforce positive messages and realistic expectations. Saying no can be nice, so choose what works and toss the guilt if the family needs to pass on a tradition or an invitation.

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. A caregiver is always stronger when that oxygen mask is well secured!

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 five tips to practice gratitude during the holidays, including this one: Make a list of things you have instead of things you want. 

Families experiencing loss or grief may need more outside support. The Dougy Center, Stoney Brook, and New Hope Grief provide resources to help children and families manage loss and grief.

“Remembering the person who died is part of the healing process,” the Dougy Center site advises. “One way to remember is simply to talk about the person who died. It’s okay to use his/her name and to share what you remember. You might say, ‘Your dad really liked this song,’ or ‘Your mom was the best pie maker I know.’”

Talking openly about the loss might add an important element to a family’s unique and heart-felt holiday.

Links for Health & Wellness

National Family Voices  – Access and contact information for state Family-to-Family (F2F) Health Information Centers. Direct support for children or youth with special health care needs, such as premature birth; autism; mental, behavioral, or emotional health issues; a genetic diagnosis; or a physical or developmental disability.

The National Center for Medical Home Implementation (National Center) is a cooperative agreement between the Maternal and Child Health Bureau and the American Academy of Pediatrics. Focus for 15 years has been to ensure that children and youth can receive medical care at home.

Mental Health Government Linkages – General articles about warning signs of mental illness and how to help, treatment referrals and options, insurance navigation, help for military families, NIMH clinical trials, linkage to the Substance Abuse and Mental Health Services Administration (SAMSHA)

US National Suicide & Crisis Hotlines – Phone numbers for suicide crisis, teen-specific help, LGBTQ, Native American, Post-partum, homeless, runaway and other support.

Washington’s Mental Health Referral Service for Children and Teens connects patients and families with evidence-supported, outpatient, mental health services in their community. This free, telephone-based referral service is funded by the Washington State Health Care Authority (HCA) and operated by Seattle Children’s Hospital. The Mental Health Referral Service provides referral support to Washington state children and teens, ages 17 and younger. Families can call 833-303-5437, Monday through Friday from 8 a.m. to 5 p.m. PST, to connect with a referral specialist. An agent will ask for information including mental health needs, location and health insurance plan. 

What can patients and families expect?

A referral specialist will call and email the family with information on one or two providers or agencies that meet their needs and have openings. Since starting the program in April 2019, the service has received a high number of requests and currently there is a waiting period. A referral specialist will call families back as soon as possible.

A few weeks after providing the referrals, a referral specialist will contact the family to see if they were able to make an appointment and ask if additional resources are needed.

If no appointment has been made, an agent will try to address any barriers or link the family to another provider.  

For questions about the referral service, please contact robert.hilt@seattlechildrens.org