Tag: complex medical needs

How to Have Good Communication with Your Child or Youth’s Doctor 

Posted on by Nicol Walsh

When your child is impacted by chronic healthcare needs or disability it can be very important to learn to talk with the healthcare professionals that work with your child. Having a relationship that allows for respect and understanding makes it easier for families, the patient (if they are older), and the doctor or specialist to communicate concerns and changes.  

This article covers how preparation for a medical visit helps with communication, three key Communication Actions to follow with health providers, removing communication barriers and issues, communication styles, and introductions to youth health care transition and medical homes. 

A Brief Overview 

  • Respectful, two-way communication is a baseline for your child or youth’s best medical care. 
  • Preparing yourself (and your child or youth) for a medical visit helps get the most from a conversation with your medical professional and supports successful communication for the future. 
  • While there may be times when there are differences in ideas or understanding between you and your child’s medical team, communicating based on your knowledge as a parent can help the team gain a broader perspective. 
    The good news is that most communication difficulties can be solved! This article has many examples of how to do it. 
  • The way parents communicate can help get the attention of your child’s medical provider. 
  • Medical Homes are designed to make communication and working as a team easier. This article includes a brief explanation of medical homes and links to more information. 
  • Children reach an age when they are allowed, by law, to make medical decisions for themselves. This article introduces the concept of health care transition and gives resources for more information on this important topic. 

Introduction

When your child is impacted by chronic healthcare needs or disability it can be very important to learn to talk with the healthcare professionals that work with your child. Having a relationship that allows for respect and understanding makes it easier for families, the patient (if they are older), and the doctor or specialist to communicate concerns and changes.  

Preparation Helps 

Knowing what might happen during a medical visit is one way to prepare yourself to be a good communicator. Having a general idea of what a doctor or other health care provider wants to learn during an appointment is also a good first step. 

The US Department of Health and Human Services has web pages for parents called “Make the Most of Your Child’s Visit to the Doctor”. They are on the MyHealthFinder site on the “Regular Checkups” page. 

These resources are geared to parents of children without disabilities, but since accidents, sickness, developmental or behavioral health problems can occur at many points in a child’s life, they may be helpful as a place to begin. Each set of web pages has an age range, and the information is specifically for parents of children of those ages. 

  • The “Take Action” page in each two-page section has tips on preparing for the visit, including questions the nurse or doctor might ask, and questions you might wish to discuss.  
  • The examples include items you might not have thought about, so they can help you think about discussing a broad range of topics during the visit. 

Communication difficulties (barriers) and how to solve them 

Sometimes parents may find it difficult to speak up with doctors, nurses, and other health care providers because: 

  • Your child may have been born with a medical condition, and you as parents have been viewing health care providers as “the experts” since your child’s birth. 
  • If you, as a parent, grew up with the custom of taking a “professional’s” advice even if you have questions or you don’t believe their advice will work for your child. 
  • You don’t know enough about your child’s development or condition to know if the proposed treatment is a good idea for your child. 
  • You may be nervous about challenging a health care provider’s advice or treatment plan because you worry it might affect your child’s care. 

Dr. Rachel Bies is a pediatrician in Minnesota, and she wrote about parents not feeling heard in a blog post. She writes there “is a balance between what the provider feels is in the best medical interest of the child and what the parent feels is in the best interest of their child and family. We share the common goal of the health of the child but may have different ideas about how to achieve that goal.”  (emphasis added). 

If a parent does not feel they are being heard by their child’s pediatrician or health care provider, she asks parents to think about what might be causing communication barriers. Some common barriers in medical settings include: 

  • Language differences 
  • Too much use of medical terminology 
  • Time limits on an appointment 
  • Cultural differences 
  • Different expectations for the visit 

To get around these barriers, you can take some or all these actions: 

  • You can ask for an interpreter, and for medical information sheets to be translated or available in your preferred language. 
  • You can bring along another person to take notes and ask questions you forget to ask. (Dr. Bies mentions that people tend to only remember about 50% of discussions in a healthcare visit). You can expect an after-visit summary or a handout to help remember important information. 
  • Ask for medical terminology be explained. 
  • You can tell the health care provider about any cultural practices which are related to your child’s health or care. 
  • Ask who you should call or email if you have follow-up questions. 
  • If time is limited, are there ways to discuss less urgent matters with an appropriate member of the medical team?  
  • For instance, some practices and clinics have message phone lines or emails so patients or parents and guardians can ask questions and get answers from a team member less pressed for time, such as a nurse or nurse practitioner. Doctors, and particularly specialists, may be the most tightly scheduled staff in a practice or clinic. Another option may be to book a telehealth follow-up appointment for your questions, if covered on your health plan. 
  • To help make your expectations clear, let the health care provider or team know up front, if possible. 
  • Almost all advice about preparing for a medical appointment tells patients (or parents) to bring a list of current questions and concerns. Some practices have a document that patients or parents fill out in the waiting room “What brings you here today?” Rather than trying to transfer your list of questions to the document, bring a copy of your questions and a paper clip, and when you turn the form in, ask for your list to be stapled to the form so all the information gets added to your child’s record. 

Even when there are no obvious communication barriers, you can ask yourself: 

  • “Are my opinions and knowledge of day-to-day changes being noted? What does the health care provider say about them?” 
  • In situations where you believe there is a need for action, ask yourself “Major changes are happening with my child, and I have brought them to the attention of the health care provider or team. Has anyone in the practice (clinic, hospital) been providing resources to help with these changes? Have I or my child been referred to additional health care providers or resources?” 

If you can’t answer “yes” to these questions, it might be time to look for a different health care provider.  
 

Most people are somewhat limited in their choice of providers because of their particular health insurance. This is true whether you are on publicly funded health plans like Medicaid (Apple Health and CHIP) or TRICARE, private insurance through an employer, or Affordable Care Act (ACA or Obamacare) plans through Washington Healthplanfinder. 

Another limitation may be the limited choice of health care providers in your area.  

These are two important reasons to first try different ways to communicate with your child’s health care team, if your first attempts do not seem to work. 

Three Key Communications Actions and Communication Styles 

In a short YouTube video from Seattle Children’s Hospital, Lisa Peters, MN, RN talks about doctor-parent communication about pain management. The ideas in the video work for any situation where parents need to communicate with health care providers. 

The three key Communication Actions are: 

  1. Speak Up 
  2. Partner 
  3. Advocate 

Ms. Peters points out that “at any time, you have the right to stop and make a change in [your child’s] plan if it’s not working for your child.” 

PAVE’s article “Self-Advocacy: Becoming an Active Member in Your Community”  is helpful for anyone who wishes to communicate in ways that result in partnering with healthcare professionals while advocating for their child. 

Here are some tips from the article. The wording has been changed a bit to make it more about parents, children, and health care settings. 

  • Learn about the topic you are speaking about (your child’s condition or disability). 
  • Actively listen to the other person and ask if you don’t understand something (like a medical term).
  • Try to see the other person’s point of view. Most health care providers want to partner with patients and parents. You have the right to ask why they recommend a particular plan or treatment, and you can also explain your point of view: 
    “This plan means Tommy needs to be in the hospital for multiple procedures. Can you explain a bit more why you want the procedures to happen very close together?” 
  • Express your feelings clearly, calmly, and assertively, without being aggressive or disrespectful. 
  • What is an assertive communication style? A page at Nemours TeensHealth offers many easy-to-understand tips, and examples of how to achieve an assertive style of communication and advocacy for both teens and adults. They write “Assertiveness is a healthy way of communicating. It’s the ability to speak up for ourselves in a way that is honest and respectful.” (emphasis added). 

Medical Homes can help with communication 

 A medical home is a communication hub designed to focus on providing better medical communication with the patient’s family and medical and school medical IEP providers. The hub is a central communication manager where all members involved in the patient’s case can call to update medications, medical notes, upcoming appointments, and the family can call to contact doctors in an emergency or leave questions. The parent or guardian of the patient can select the hub. Possible hubs could be a primary care provider, a specialist, a medical case manager, DDA case manager or the parent or guardian. PAVE has a video and article which helps to define a medical home. The article offers questions to help you decide if your family may need to create a medical home. Washington State Medical Home Partnership Project has a website full of resources to help with medical homes, including The ABC’s of Medical Homes. 

Health Care Transitions 

In Washington State, children reach the age of majority for medical care at 18, which means they can get healthcare services in Washington State without an adult’s permission. It’s also a common age to move from the care of a pediatrician to a medical provider who treats adults. Preparing for this change is called “transition for medical care.” Just like the similar process for life after high school, “transition for medical care” begins much earlier than 18, and usually involves help from parents or guardians and the current medical providers. This “transition” is especially important to youth and young adults with a disability, as part of their preparation to take charge of their life as an adult.  

Important to know: the “age of medical majority” for teens is not always age 18. For certain types of medical treatment or testing, children aged 13 through 17 “can make their own decision to get birth control, seek mental health treatment, and get tested for sexually transmitted infections (STIs) and more” based on Washington State’s privacy laws. Adults 18 and over who are under legal situations like guardianship may not always be able to make healthcare decisions for themselves.  

Information on healthcare permissions, privacy, guardianship and many other legal topics can be found at WashingtonLawHelp.org. 

Many parents prepare their children to transition to adult healthcare when they are small, just by preparing them for medical appointments. Imaginative play of the child being the doctor and the parent being the patient re-enacting the scene of a doctor’s visit starts to prepare children for how to interact with healthcare providers. As the child gets older, we talk to them prior to a doctor’s visit about why we are going and ask if they have any questions we are building on the foundation.  

Teens are encouraged to learn about their medical and other allergies, what their health or disability condition is, what medications they take and the dosages. Gottransition.org has resources for parents outlining the stages and goals of the transition process. All stages and goals are flexible based on each youth’s ability levels, healthcare needs and personal needs, this is a guideline. Gottransition.org has resources to assist youth in discussing their concerns about transitioning to adult health care  with their doctor and an electronic means of keeping track of their health ID card. 

While transitioning from pediatric health care to adult health care, teenagers are developing their advocacy skills with their parents and their peers. Now, teenagers are having to learn how to advocate for themselves in an environment that can be uncomfortable at times. A short video presented by the University of Michigan’s website Michigan Medicine is Teen Self-Advocacy: How To Be Your Own Healthcare Advocate. It provides tips on self-advocacy in the doctor’s office. Teens may find electronic resources useful advocacy tools to plan their doctor’s visits.  

The Academy of American Pediatrics provides a tool to assist with preparing for a doctor’s appointment, Well Visit Planner and Patient Question Builder app. (Scroll down to the middle of the page.) 

Before using any phone or computer app, AAP advises that users check that no information is collected or saved, and the app does not sell any information to third parties.  

Parents can struggle with letting go of control over the health care of a youth with complex medical needs or a disability. Managing their child’s health care needs has been a major factor in their lives for as long as they can remember. This anxiety can create tension between teenagers and parents. Michigan Medicine presents a video showing a group of parents as they discuss their different parenting experiences through this transition period. Each experience is unique as each child is unique. Parents are learning to step back during doctor’s appointments and let their teenager speak to the doctor, asking questions about the doctor’s recommendations and ensuring that they understand the information presented. You may want to watch this video with your child who is transitioning to adult health care as a conversation starter about your feelings and their feelings about this transition period. 

A teenager needs to know their rights to privacy. A downloadable pdf from the Adolescent Health Initiative at Michigan Medicine outlines the privacy rights of a teenager with their healthcare professional. At all times patients are encouraged to talk to their medical professionals if they have any questions about confidentiality. Sharing this privacy document with your teenage child lets them know that you support their own healthcare communication and advocacy with their current and future health care providers.  

Health Information and Your Privacy is a resource to help adults and minors keep their privacy by having their insurance provider send any communications or documents  

Additional information on Health Care Transition 

Does My Child Need a Medical Action Plan?

Posted on by Nicol Walsh

Medical action plans are for situations where a child has a life-threatening illness or condition, when medication needs to be taken on schedule, and/or they need to be monitored for symptoms. This article explains what a medical action plan is, when it’s needed, where to use it, and how it’s separate from but can support Individualized Education Programs (IEPs) or Section 504 plans.

A Brief Overview

  • Medical action plans are for situations where a child has a life-threatening illness or condition, when medication needs to be taken on schedule, and/or they need to be monitored for symptoms
  • Medical action plans can be used in school, in community settings, and at home or while traveling.
  • Your child’s pediatrician or primary care provider and their staff can be good resources to help you create the medical action plan.
  • In schools, parents and their medically aware children) meet with the school nurse to develop or complete a plan. School staff are responsible for carrying out the plan.
  • If a child has an IEP or 504 plan, a medical action plan can be referred to in any appropriate section to address limits on physical activities or modified academic expectations when a condition affects a child’s learning or ability to function well at school. 
  • Home, community and travel medical plans are very useful to inform first responders and others not familiar with your child’s needs with essential information about their typical routine and the steps to take in case of an emergency.

What is a medical action plan?

It’s a plan for when a child has a life-threatening illness or condition and/or requires medical monitoring or medication.

In school settings, school staff have responsibility for following the medical action plan. The plan is for the health and wellbeing of the student in the school environment.

Examples of illnesses and conditions might include:

  • Allergies, like food allergies, that can cause anaphylaxis and need an epi-pen
  • Diabetes which may require monitoring and insulin injections
  • Asthma, and a backup inhaler
  • Seizure disorders
  • Mental/behavioral health conditions
  • Complex medical conditions with ongoing needs
  • Cancer, heart conditions, and any other serious or life-threatening illnesses and conditions

A medical action plan explains important steps like when to give rescue medication if needed, when to call emergency services (911), if the student should use a buddy system when going from place to place if there isn’t a support dog, and other essential actions based on the student’s individual medical needs.

Other items which might need to be on the plan:

  • what kinds of durable medical equipment might be needed for support at school, and who is responsible for providing them
  • what kinds of medication and medical interventions could come up day to day
  • what kinds of emergency situations are possible

The medical action plan is developed to help school, their staff, the family, and student all be on the same page about the impact of an emergency event or a day that might have higher needs.

Here are some plan examples to guide you:

Medical action plans are not IEPs or 504 plans. If a student has an IEP or 504 plan, a medical action plan can be referred to in any appropriate section to address limits on physical activities or modified academic expectations when a condition affects a student’s learning or ability to function well at school.

Here’s more information about 504 plans and Individualized Education Programs (IEPs).

How do I request a medical action plan for my child?

A medical action plan is developed in a meeting or series of meetings with the school nurse and an IEP or 504 plan team, if your child is on a 504 plan or IEP. Parents can prepare for the meeting by drawing up their own list of their child’s medical needs in the school environment, but templates, or pre-made plans you can personalize are also available from the school nurse or your child’s pediatrician and/or specialty provider.

Once your child understands their medical needs and their body’s signals, it is vital to request that the student be a part of this meeting so that they can express what their triggers may be and what it looks like when they have a flare-up, attack, or episode. These points should also be written in the plan.

Some school districts require a doctor’s input or signature, especially if medication is involved. It’s a good idea to schedule a doctor’s visit in late July or August to help fill out the action plan so that you can get any input and signatures you need.

Parents should ideally meet with the school nurse and teachers or teams working with their child before registration or the start of school. If that’s not possible, schedule as soon after the school year begins to avoid potential emergency situations with no plan in place.

For students who already have medical action plans, this timeline is important to update the school nurse and staff about any changes in the student’s condition and adjust the plan accordingly. This may also include changes to the 504 plan and IEP if required.

Having information on hand for your child/youth when you or they travel or go on field trips can be accomplished through a one-pager or card that can be kept with you or your child. It would have:

  • Your child’s diagnosis
  • Medications prescribed and when your child takes them
  • Any over-the-counter medications used and when your child takes them
  • Emergency contacts
  • What a medical emergency looks like for your child, and what steps to take to deal with it.

Essential brief “information at a glance” can be on a single sheet of paper or card and put on the refrigerator for first responders, sitters, and respite workers. You or your child can carry it when visiting or in a community setting. Plastic peel-and-stick “laminating” sheets are handy to protect the paper or card and are available at office supply stores and online. Information on how to create these forms and the templates can be found at the links below.

Family to Family Health Information Center (opens on a new website)

My Child’s Care (PAVE’s articles on Health and Wellness)

Holiday Survival Tips For Families with Special Healthcare Needs

Posted on 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 (of any age) experiencing special healthcare needs or disability. 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. 
  • The article includes suggestions for parents and other family caregivers to help support you as a family caregiver during the busy holiday season. Includes ideas for parents in the “sandwich generation”.
  • Gratitude is a gift: Moments of thankfulness calm the mind. For additional stress-reducers, PAVE has 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:

Get Holiday Help

Parents and family members who care for an individual with special health care needs or a disability are already busier than most people. It’s very common for a primary caregiver, the person usually caring for a person with health needs or disability, to believe that all the extra planning for holiday time is their responsibility, too.

This season, use these reminders and tips to help yourself as a parent or other family caregiver to some holiday spirit:

Share your holiday wish list with extended family and friends. Here are some ideas:

  • Ask for time off from caregiving duties as a gift for the holidays (respite).  Can another family member, extended family member, or friend take over some caregiving tasks? Perhaps they could pay, or help you pay for a home care worker or a stay at a respite facility.
  • Can a family member or friend help with chores, household maintenance, holiday cleaning, shopping, decorating? Look at your household’s to-do list and just ask.
  • Childcare when school’s out: “You know, for Channukah this year, I’d love it if you could come over and play with the younger kids while I do XYZ”.
  • Gift certificates for relaxing /pampering activities are great too: spa time, for example!

Order in holiday-time meals or ask for the pre-holiday gift of donations of baked goods, meals you can freeze/reheat, or gift cards to food delivery services from restaurants or supermarkets.

Money: Make a holiday spending budget with your spouse or partner to reduce financial stress. Ask extended family members to agree on a dollar limit for gifts and/or set up a gift exchange where names are drawn.

Are you a “sandwich generation” caregiver, caring for both children and older family members with health or other conditions?  Carol Bradley Bursack, writing on Aging Care, shares this insight:

“The squeeze of generations and the countless needs of each leave little time for caregivers to think of their own needs. Members of the sandwich generation know this dilemma well. Prioritizing our own health and enjoyment winds up feeling like just another task, so we knock it to the bottom of the to-do list and keep on doing for everyone else…

Communicate with your loved ones. Even small children can understand—if they are told in a loving way—that your time is short or you have to cut corners because Grandma and other family members rely on you, too. Communicate the same thing to the elder(s) in your care. Helping the entire family understand that each person’s desires are important to you but that you have a lot on your plate can help keep their expectations more realistic. You’d be surprised how much a senior, even one who has dementia, can understand.”

Learn more about the difficult choices facing “sandwich generation” family caregivers in another article by Carol Bradley Bursack, A Story from the Sandwich Generation: Caring for Kids and Parents1

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 .  A “reason” for leaving an event might make it easier for a child to leave an event when others are staying. “It’s time for us to get the food ready for Santa’s reindeer” or “let’s head home for a special holiday treat” may help get everyone out the door!

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.” 

Keeping to a schedule and getting regular physical exercise and good sleep is important for everyone else in the family, too!

Set Expectations with Extended Family

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, or a virtual get-together.

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. 

Add Fun 

ASK your family-what do they like best about a holiday? (Christmas, Channukah, Kwanzaa, Diwali, Eid al-Fitr, etc.) Keep these wishes in mind when you select and plan for holiday activities. This may help you to keep your to-do list focused on what your family looks forward to, or would like to change, rather than an overwhelming set of holiday “to-dos”.

Give the gift of Giving. Every person deserves the chance to be of help to others and make them feel loved. Small children, children with special health conditions, children of any age with intellectual disabilities, children with developmental disabilities can participate in the act of giving holiday gifts. It’s a great way to boost a person’s capabilities and sense of belonging.

Making home-made holiday cards, simple handcrafted items, baked goods, or purchased inexpensive items from a dollar store can be great holiday family activities or a chance to spend one-to-one time with an individual child.

Families can set aside time for, or add on to ordinary routines, time for reading special holiday stories, playing games, or watching silly holiday movies. Laughter is therapeutic!

Understanding your child’s healthcare needs and vulnerabilities can help with deciding which activities are right for your family. It’s also important to think about which activities will help you, the caregiving parent or family member, recharge—and which ones to prioritize in terms of time and energy.

  • Drive-through light shows, 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. 

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.

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 

PAVE:

Neurodivergence and the holidays: Creating Joyful and Inclusive Holidays 4-Part Series:

Aging Care:

Complex Child: