holidays Archives

Holiday Survival Tips For Families with Special Healthcare Needs

Posted on December 15, 2023December 15, 2023 by Nicol Walsh

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

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

Posted on March 5, 2015October 31, 2017 by Nicol Walsh

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

Tactic	Rationale	Example
Non-Contingent Reinforcement/Planned Attention	Your 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 Written	Your 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 Objects	Your 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 school	All 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 Chores	A 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 System	Your 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.