Holiday Survival Tips For Families with Special Healthcare Needs

Everyone can get overwhelmed around the Holidays. Routines are disrupted, different or excessive foods might be in easy reach, and emotional triggers can come from many directions. Individuals with disabilities might be especially sensitive to those issues. This article provides a four-part planning guide to help families manage a change in routine, plan for outings, provide special care and travel with children who have special needs during the holiday season.

Routine

  • Great Expectations

A schedule filled with events outside of a typical schedule may be disorienting to some children. Plan to follow a typical routine for some aspects of each day and discuss special events ahead of time so your child can feel prepared.

  • Children nestled all snug in their beds

Maintain your child’s sleep schedule to the best of your ability. Consistent wake-up and bedtime schedules can help everyone’s level of calm.

  • Three Bears Principle

Finding the “just-right” amount of holiday celebrating can be tricky. Don’t try to make it to all the holiday events. Choose wisely and feel free to decline invitations. A child who gets enough down time between events is more likely to enjoy the festivities.

Plan Ahead

  • Special Santa Sack

If your child has sensory sensitivity, have a bag of toys and tools ready to go so you’ll have options if a shopping trip, holiday party or other event gets over-stimulating. Some children take comfort from earplugs for noisy situations, headphones for listening to favorite music, electronics, fidgets, blankets, or extra comfy clothes.

  • Medicine

Have a bag ready to go with necessary medications, supplies, and equipment. You may want to pack extra for unexpected delays in your adventures. Sugary foods at holiday gatherings might impact planning for children who need diabetes care. You may choose to use an insulin pump to avoid multiple injections so your child can enjoy the holiday without feeling too different or overwhelmed.

  • Visions of Sugarplums

Holiday meals or treats might be off limits to children with specific allergies or food sensitivities. You may need to pack some back-up snacks and treats that work well. Being prepared could prevent your child from feeling left out of the festivities. If your child has a severe allergy, remind family and guests ahead of time to practice extra caution. Kissing and hugging can be dangerous due to cross-contamination.

Handle with Care

  • City sidewalks, busy sidewalks

Silver bells, strings of streetlights and all the other hustle and bustle may overwhelm children with sensory sensitivities. You may want to consider an off-hour time to see Santa or simply avoid the most popular attractions and choose quieter activities to help your child enjoy the season.

  • At Christmas, parents need a village

Don’t put all the pressure on yourself to make the holiday perfect. Ask for support from family, friends, doctors and therapists, and step back to let them do their parts to reinforce positive messages and expectations. 

  • Saying no can be nice

If a certain activity is simply too much for your child, you or other members of your family, it’s okay to say no! Choose what works best and toss the guilt if you need to decline an invitation.

  • Something under the tree, for me

Whether you go shopping, head to the spa, soak in the tub or simply pause to take five long breaths, plan some self-care. Remember that when you put on your own oxygen mask first, you’ll be stronger and more prepared to help others.

  • Thanks is a gift

Taking time to reflect on gratitude can help shift you away from feeling overwhelmed and toward feelings of peacefulness and grace. It’s ok if things don’t go as planned and it’s ok that your family is different. Your holiday might require a little extra planning and patience, but your child’s life is a gift that can be treasured for its unique specialness.

Not Home for Christmas?

If your holiday includes planes and trains, be sure to let agents and attendants know about your family member’s special accommodation needs. Here are a few contacts for Washington travelers:

Sea-Tac Airport (preflight preparations available): email customerservice@portseattle.org

Spokane Airport Administrative Offices: (509) 455-6455

Amtrak Accessibility services 

 

 

 

 

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

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.