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.

Holidays Can Hurt When Trauma is Present

Songs in the store tell us this is the “hap/happiest” time of the year, but for people who have experienced trauma this season can trigger difficult emotions. For children with disabilities, those emotions can be particularly complex and confusing. Unexpected behaviors might show up at home or at school, especially when routines are disrupted.

Helping children understand their emotional responses to difficult circumstances is part of education, and schools are adopting new strategies around Social Emotional Learning (SEL). Social and emotional skills can be analyzed through educational evaluations, and the Individualized Education Program (IEP) establishes specific programming and goals around SEL for children with deficits in those areas.

A Functional Behavior Analysis (FBA) is another tool for determining what supports a child needs to behave in ways that are “expected” for success at school. The FBA leads to design of a Behavior Intervention Plan (BIP), which provides specific guidance to school staff for positively reinforcing expected behavior.

When designing behavior plans, parents and school staff may need to discuss whether unexpected behaviors are the result of trauma and/or overwhelm. Strategies for helping may need to consider whether rewards and punishments will work if behaviors are related to emotional dysregulation and fight/flight/freeze responses to internalized and persistent anxiety. Formed Families Forward, a community and family-focused resource center in Virginia, provides a video series to help families and professionals better understand trauma and how to respond. The agency’s website also provides a resource collection related to trauma-informed approaches in multiple environments.

The Office of Superintendent of Public Instruction (OSPI), which oversees Washington school districts, has developed curricula to help school staff teach children how to understand their emotions and become more skillful in social communication. PAVE’s website includes a three-part series of articles about the state’s initiatives and research related to SEL. Those articles include practical tips and a variety of additional links to further information.

Everyone can help create a calm environment. Best practice is to exhale long and slow, triggering the body’s relaxation response. Your feeling of calm can help someone else relax. Try it! Take 5 breaths, focusing on a long, slow exhale through your nose. Notice how you feel. If you feel calm, consider sharing that feeling with someone else through a loving smile, soft eyes or even a hug! Even if this is not the hap/happiest time of your year, give yourself permission to relish a simple moment of contentment or curiosity when you pause to breathe.

Positive Behavior Supports: Continuing the model at home and in the community

By: Dr. Vanessa Tucker, PhD., BCBA-D

What is Positive Behavior Support?

Positive Behavior Support (PBS) is a special education initiative that informs school districts, schools and classrooms regarding prevention and intervention practices designed to teach and reinforce pro-social behaviors. Behavior supports, as we parents well know, do not end at the schoolhouse door. Interfering behaviors can and do continue to manifest themselves in other settings and present a real and present challenge to parents and caregivers raising children with special needs.

The field of PBS is built on the premise of universal interventions that are designed to teach behaviors that prevent negative or challenging ones from occurring. These universal interventions, or Tier I, are effective for most children, but approximately 15 to 20% will need something much more intense in order to experience success. These children require what are known as Tier II and Tier III Interventions. Tier II interventions are designed to address the 15% who need more focused interventions. These may be temporary or may be needed on an ongoing basis. A small number of children (approximately 5%) will require intensive interventions, or Tier III, designed to support the most challenging behaviors. As a parent, you may find that problematic behaviors are a top priority for you due to your child’s unique needs. Parents can benefit from applying the same basic system of PBS in the home and community in order to mitigate the presence of interfering behaviors as well as teaching and reinforcing acceptable replacements. The focus of this brief article will be on prevention tactics that parents and caregivers can implement in the home and community.

Prevention as Intervention

Challenging or interfering behaviors occur for a wide variety of reasons. In many cases a communication breakdown is the “culprit.” In other words, children who have communication delays often resort to behaviors we don’t want in order to let us know what they do want! Children may also engage in challenging behavior due to stress, fatigue, unmet needs for attention, or because they have learned a habit that “works” for them. For example, the child may engage in mild to moderate aggression toward a parent when they first arrive at home as a means of accessing attention. This is problematic as the child inevitably is reinforced for these behaviors when the parent provides the designed attention. The first order of business in PBS is to teach and reinforce behaviors and/or to change our own practices as a means of prevention. In addition, it is strongly recommended that you work with your school team and utilize the Functional Behavior Assessment (FBA) and Positive Behavior Intervention Plan (PBIP) to guide your interventions at home. Pay close attention to the described “function” or reason(s) why your child engages in challenging behaviors. You’ll want to plan your interventions based upon those hypothesized functions. For example, if your child’s aggression is due to escape from unwanted tasks, you’ll want to find ways to help him escape (e.g. ask for a break) successfully. Remember that whatever you select as an intervention should be acceptable to you and your family.

In order to be efficient, you will want to analyze the various times, areas and places where challenging behaviors are most likely to occur. Create a simple matrix of your activities and rate your child’s behaviors as (a) non-problematic, (b) somewhat problematic, or (c) very problematic. Target those areas that are “very problematic” first. Decide what could be creating or maintaining the problematic behavior. Is your child in need of communication supports? Does he understand what is expected of him? Does she need more visuals in order to do what you want? Is her need for attention being met in ways that are unacceptable? Are there sibling issues? Tackling the most difficult areas first will bolster your ability to dive into the smaller issues later and may actually address them inadvertently through your interventions with the bigger ones.

The following table (Table 1.0) presents a list of general recommendations and justifications for prevention of challenging behaviors at home or in the community.

Table 1.0 Tactics for Prevention of Challenging Behaviors

TacticRationaleExample
Non-Contingent Reinforcement/Planned AttentionYour child may need your attention and will engage in whatever behavior necessary to obtain it. You want your child to obtain your attention without having to engage in mild to moderate behaviors to receive it.When you come home spend the first 10 or so minutes with your child before you check email, answer the phone or do anything else. Plan this and stick with it. Give your child (or children) your undivided attention before you do anything else.
Schedules-Visuals and/or WrittenYour child may need the same structural supports that they use in the school setting in order to predict what is coming, what is done, and what is expected of them. They may not be able to predict these things as successfully if given with verbal prompts only.Create and use schedules with visuals or words for family routines. This might include an activity schedule for evening activities, for a bathing routine or a trip to the store. Rely on your school staff for support in this area. They can assist you to build and use these systems.
Transition Schedules and ObjectsYour child may need more information than you require in order to successfully understand and navigate transitions. You may need to provide him with more information about what is coming and what will happen. Challenging behaviors may result from a breakdown in understanding what is coming or what is expected.Create a transition schedule such as a white board with icons and/or line drawings. Some children benefit from a basic checklist that they can “check off” as they go. Others need a transition object (e.g. a teddy bear, or something else that is comforting) in order to successfully navigate transitions.
Demand-free time after schoolAll children are tired to some degree or another after school. For some children, the social demands of school have left them with very little in the “tank” at the end of the day. Behaviors may occur because the child needs rest from social and other demands.Consider providing 30 minutes or more of demand-free time (e.g. no homework) after school. Pair this with a timer and allow the child to engage in something that is soothing, restful and relaxing. Don’t pair this with their favorite and most reinforcing activity-save that for after they complete what you want later in the evening, especially if that involves homework or chores. Engage them in a schedule with demands (homework and chores, etc.) after a period of rest.
Homework and ChoresA child may balk at the idea of homework and/or chores, which are regular expectations of most parents after school. You may find that children engage in a lot of challenging behavior around these two areas.Consider the rest time after school as the first line of defense. Then, consider using a visual system that breaks down what they have to do, how long they have to do it, and when they are finished. Break things into smaller pieces (called “chunking”) and consider pairing with breaks in between each piece. Show visuals of what you expect the finished product to be. For example, what does a clean bathroom look like? Show each part in a picture format.
Token SystemYour child may not be particularly motivated to engage in things that are outside of his/her interest area. Challenging behaviors may occur despite your efforts to provide visual structure and break things into smaller pieces. She may need a more tangible way to motivate her to comply with what you want.Consider adding in a token system designed to provide reinforcement for desired behaviors. If possible, mirror the ones used at school if they are effective in motivating the child to comply. Creating a “First, then” procedure allows the child to see that after they do what you want, they will get something that they want. For example, “first clean bathroom, then 20 minutes of iPad” is a reasonable expectation. Provide tokens (stickers on a chart, poker chips on a velcro board) for each step of the bathroom clean up. Make sure you follow through with the earned reinforcer once they’ve complied.

Summary

Challenging behaviors in the home and community are never easy for parents or caregivers to address. Working with your school team, you can come up with ways to support your child so that they understand what you want and have the tools to engage in replacement behaviors that are acceptable to everyone. Many children with disabilities benefit from the same basic principles of PBS that are used in schools. A focus on prevention can decrease stress, increase compliance and teach replacements that lead to better behavior in all settings.