When a caregivers needs are met, the person receiving the care will benefit as well.
Some takeaways – how to take care of yourself:
Every family experiences holidays and end-of-year transitions differently. This article provides a sampling of ideas for families with children impacted by special healthcare needs.
Here are some quick takeaways:
Break the routine, but keep the comfort
Some families have been home more than usual due to the COVID-19 pandemic. Virus variants may mean another holiday at home, but something special each day might add sparkle to a holiday staycation. Families might set aside ordinary routines to:
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.
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 holiday hustle may be in full swing, but there are ongoing differences as COVID continues to impact health and safety. Understanding your child’s healthcare needs and vulnerabilities can help with deciding what activities are right for your family. Drive through light shows and virtual celebrations are options in many areas.
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 suggested themes:
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 to slow the spread of COVID and its variants, 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. When planning for airflight, call or look online to understand the airline’s safety policies and procedures.
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 tips to practice gratitude during the holidays, including this one: Make a list of things you have instead of things you want.
Loss and grief
Many families continue to experience loss and grief. Talking openly might add an important element to a family’s unique and heart-felt holiday. For more practical support, including help with funeral expenses, families can contact the Federal Emergency Management Agency (FEMA): FEMA.gov/funeral-assistance/faq.
Here are a few places to seek support related to grief and loss:
Talking about grief and letting feelings, stories, and memories become part of the experience can help. “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.”
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