Tips to Organize Your Child’s Medical and School Documents

A Brief Overview

  • Keeping track of important documents for your child’s health can save you time and give you less stress.
  • Take advantage of technology! If you choose to build a digital storage system, integrating it with your smart phone will make it easy to share information on-the-go with doctors, day care providers, school staff, and other professionals.
  • Plan a grab-and-go handout, notebook, or phone app to make it easy to find and share critical information during an emergency.
  • Read on for information about how to get started!

Full Article

Care planning and a well-organized system to keep track of important documents can save time and create comfort during uncertain times. This article provides some tips for building a “care notebook,” which might be a three-ring binder, an accordion file, or a portable file box—whatever makes sense for your organizational style and the types of materials you need to sort.

A portable Care Notebook can include the most current versions of medical and/or school documents, while older files can be archived separately. Here are some examples of formal documents you might organize:

  • Medical paperwork: diagnoses, assessments, surgeries, medications, provider contacts
  • School paperwork:  Individualized Education Program (IEP), Section 504 Plan, assessments, meeting notifications, progress notes, correspondence, telephone logs
  • Personal care notes: hygiene routines and concerns, food preferences and issues, sleep schedules and challenges
  • Community access: transportation needs, hobbies, clubs, activities

Click to print out the infographic above

Consider what else to include, such as business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school schedule…

Each primary category can be a section of a large notebook or its own notebook. Consider how portable the notebook needs to be and where you might take it or share it. Will the size and shape be practical for where you plan to go? Do you need more than one notebook or system?

One way to make the most current medical information more mobile is to use an app on your phone or tablet. Here are two options:

  • Specifically for an iPad or iPhone and available through Apple, My Health Tracker was developed through Boston Children’s Hospital and Boston University.
  • Available for android phones through Google Play, MyCookChildren’s provides categories and ways to take pictures of documents and/or store information that you enter.

Both mobile apps help you track medication, care needs, illnesses, and appointments. Having this information in one place is especially helpful when you are working with specialists and medical providers from different medical groups that use different calendar and records systems.

Another way to maintain records and information is to create a digital “notebook” on a personal computer. You might build folders just like you would in a physical notebook. Dr. Hempel Digital Network provides 10 health-record applications with options that combine electronic medical records with telehealth capabilities. Other applications work with cellular phones. Here are three: MTBC PHRMedical Records, and Medfusion Plus.

Keep emergency information handy and easy to clean

A small “on the go” handout might be helpful for critical care appointments or emergencies. A laminated handout or a page tucked into a protective sleeve will be easier than a large notebook to disinfect after being in public. Depending on a child’s needs, caregivers might create multiple copies or versions of an on-the-go handout for easy sharing with daycare providers, school staff, babysitters, the emergency room, camp counselors or others who support children.

Key information for a quick look could include:

  • medications and dosages
  • doctors and contact information
  • emergency contacts—and whom to call first
  • allergy information
  • preferred calming measures
  • Plan for a caregiver’s illness

Another pull-out page or small notebook might include specific instructions about what to do if a caregiver gets sick. These questions could be addressed:

  • Who is the next designated caregiver?
  • Where can the child live?
  • What are specific daily care needs and medical care plans?
  • Is there a guardianship or a medical power of attorney?
  • Are there any financial or long-term plans that need sharing?

Step-by-Step Instructions

Building a Care Notebook does not have to be daunting. Most people start small and try different approaches until they find the best fit.  Here are a few ideas to start the process:

  • Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box, or a primarily digital system with limited “to-go” handouts.
  • Identify and label the document sections by choosing tools that fit your system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts, a hierarchy of folders on your computer…
  • Include an easy-to-access calendar section for tracking appointments.
  • Include a call log, where names are recorded (take time to spell full names correctly!) and phone numbers of professionals. Take notes to create a written record of a conversation. It is also practical to send a “reflective email” to clarify information shared in a call, then print the email, and tape it into the call log to create a more formal written record of the call.
  • A separate sheet of easy-reference information can be used to share with a caregiver in a new situation, such as daycare, doctor, camp, or a sleepover. Mommies of Miracles has an All About Me template that serves this purpose.
  • When appropriate, invite the child to participate.

Tools to help you begin

Quick and easy forms can help you start. Here are two options:

  1. Medical Home Portal Care Notebook and it comes in both English and Spanish
  2. Individual Healthcare and Emergency plans from PACER Center

Guidance to help build a more comprehensive care notebook is available from Family Voices of Washington. Printable forms can be done in stages and updated as needed to slide into a notebook or filing system. The templates include pull-out pages for Emergency Room or Urgent Care visits and forms to help organize medical appointments.

A child’s medical providers might help write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. A school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, an Emergency Response Protocol, a Behavior Intervention Plan or other documents. If a child is in state-supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.

You will thank yourself in the future!

Having information organized and ready can make it easier to apply for public services through the Social Security Administration, the Developmental Disabilities Administration (DDA), the Division of Vocational Rehabilitation (DVR) or others. For military families, a Care Notebook can make transitions and frequent moves easier to manage.

A well-established organization system also can help a child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office or provide a key set of documents for requesting vocational rehabilitation/employment supports. Easy access to key medical records can be the first step to helping a child learn what medications they are taking and advocate for an adjustment with an adult provider

Additional resources for long-term planning include:

Summer Daily Activity List – Taking care of YOU!

PAVE has created a suggested list of activities to follow every day this summer. Give yourself grace if you cannot do everything on the list. Nobody is keeping track. Your reward will be a healthy mindset! Type Mindfulness into the search bar on our website to find other articles and videos to support self-care for everyone in the family. 

List of Daily Activities for the Summer Print list on wapave.org

Click to view this list in PDF form

Start the day with a self-care routine – Do all!

  • Eat breakfast
  • Get dressed and take a shower if needed
  • Brush teeth and hair
  • Pick up your room and make your bed
  • Put away four things that are out of place

Take care of your home – Pick one!

  • Help to wash dishes
  • Load /unload the dishwasher
  • Vacuum one room
  • Empty the garbage
  • Do a new chore!

Build your body – Pick one or more!

  • Challenge yourself to do something outside for at least one hour
  • Go for a walk, walk a pet, or draw with sidewalk chalk
  • Help make a yummy healthy meal
  • Play with friends or swing at a nearby park
  • Tired or crabby? Take a nap!

Build your brain

Build your brain – Pick one or more!

  • Do a puzzle, play with Lego bricks, make music
  • Write a story, read a book (at least 1 chapter or 20 minutes)
  • Choose something else creative that you enjoy

Build up others – Pick one or more!

  • Write a letter to a friend or family member
  • Give a compliment
  • Find a small or large way to help someone: a little kindness goes a long way!

Self-Care is Critical for Caregivers with Unique Challenges

  • Self-care is not selfish. Self-care is any activity or strategy that helps you survive and thrive in your life. Without regular self-care, it can become impossible to keep up with work, support and care for others, and manage daily activities.
  • PAVE knows that self-care can be particularly challenging for family members caring for someone with a disability or complex medical condition. This article includes tips and guidance especially for you.
  • For a quick takeaway, here is a short video to inspire self-care today: Self Care for Caregivers.
  • PAVE provides a library with more strategies to cultivate resilience, create calm through organization, improve sleep, and more: Self-Care Videos for Families Series.

Full Article

Raising children requires patience, creativity, problem-solving skills and infinite energy. Think about that last word—energy. A car doesn’t keep going if it runs out of gas, right? The same is true for parents and other caregivers. If we don’t refill our tanks regularly we cannot keep going. We humans refuel with self-care, which is a broad term to describe any activity or strategy that gives us a boost.

Self-care is not selfish! Without ways to refresh, we cannot maintain our jobs, manage our homes, or take care of people who need us to keep showing up. Because the demands of caring for someone with a disability or complex medical condition can require even more energy, refueling through self-care is especially critical for caregivers. This article is for you!

Before you read anymore, try this simple self-care tool called Two Feet, One Breath. Doctors use this one in between seeing patients:

  • Notice your two feet on the ground. Feel the ground and feel your feet under you, with the weight of your body dropping into the ground through your feet. If you don’t stand on two feet, then notice whatever part of your body is connecting you to furniture or the floor.
  • Notice that you are breathing in and imagine that breath starts in your feet (or seated body) and travels all the way to the top of your head.
  • Notice that you are breathing out and imagine that your outbreath goes all the way down and out through your feet (or seated body).

Two Feet, One Breath can become part of every transition in your day: when you get out of bed or the car, before you start a task, after you finish something, or any time you go into a different space or prepare to talk with someone. This simple practice highlights how self-care can become integrated into your day.

Keep in mind: Although a day at the spa might be an excellent idea, self-care doesn’t have to be fancy or expensive to have a big impact!

These practices matter a lot, especially because almost everyone knows or cares for someone with special needs. According to the Centers for Disease Control (CDC), at least 26 percent of the population experiences a disability. The result is widespread compassion fatigue, which is a way to talk about burnout from giving more than you get.

Anyone who isn’t convinced that self-care matters may want to watch a film by National Geographic, Stress, Portrait of a Killer, which includes research data to show how caring for a child with special needs can impact parents (minute 38 includes that report).

Below are some ways to pull on your own oxygen mask first!

Connect with others

Meet up regularly with people who have similar life stressors. The Parent-to-Parent network can help by matching parents with similar interests or by providing regular events and group meetings.

Caregivers of youth who are Deaf or Hard of Hearing (DHH) can connect with other family caregivers at Washington Hands and Voices

For caregivers of young people with behavioral health conditions, there are several family-serving agencies that might provide help and solidarity. Some agencies are listed at the end of this article and in PAVE’s Behavioral Health Toolkit.

Here are additional places to find one another:

  • School
  • Sports teams
  • Community center
  • Special Needs Parent Teacher Association
  • Extracurricular events
  • Online support groups

Get Enough Sleep

The body uses sleep to recover, heal, and process stress. If anxiety or intrusive thinking consistently interrupts sleep, self-care starts with some sleeping preparations:

Move the Body

Moving releases feel-good chemicals into the body, improves mood, and reduces the body’s stress response. Walk or hike, practice yoga, swim, wrestle with the kids, chop wood, work in the yard, or start a spontaneous living-room dance party.

Here is information from the Mayo Clinic about exercise:

  • It pumps up endorphins. Physical activity may help bump up the production of your brain’s feel-good neurotransmitters, called endorphins. Although this function is often referred to as a runner’s high, any aerobic activity, such as a rousing game of tennis or a nature hike, can contribute to this same feeling.
  • It reduces negative effects of stress. Exercise can provide stress relief for your body while imitating effects of stress, such as the flight or fight response, and helping your body and its systems practice working together through those effects. This can also lead to positive effects in your body—including your cardiovascular, digestive and immune systems—by helping protect your body from harmful effects of stress.
  • It’s meditation in motion. After a fast-paced game of racquetball, a long walk or run, or several laps in the pool, you may often find that you’ve forgotten the day’s irritations and concentrated only on your body’s movements.
  • It improves your mood. Regular exercise can increase self-confidence, improve your mood, help you relax, and lower symptoms of mild depression and anxiety. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety. All of these exercise benefits can ease your stress levels and give you a sense of command over your body and your life.

Be Mindful

Mindfulness can be as simple as the Two Feet, One Breath practice described at the top of this article. Mindfulness means paying attention or putting your full attention into something.

Focusing the mind can be fun and simple and doesn’t have to be quiet. Here are a few ways to practice that don’t involve a yoga mat or a meditation cushion:

  • Color
  • Work on/wash the car
  • Build something
  • Make art or do a craft project
  • Put together a puzzle
  • Laugh
  • Clean
  • More ideas: Mindful.org

Schedule Time

A day can disappear into unscheduled chaos without some intentional planning. A carefully organized calendar, with realistic boundaries, can help make sure there’s breathing room.

Set personal appointments on the calendar for fun, dates with kids, healthcare routines, and personal “me time.” If the calendar is full, be courageous about saying no and setting boundaries. If someone needs your help, find a day and time where you might be able to say yes without compromising your self-care. Remember that self-care is how you refuel; schedule it so you won’t run out of gas!

One of PAVE’s self-care videos for families is this one: Get Calm by Getting Organized.

Here’s more guidance: calendar.com: Why Stress Management and Time Management go Hand in Hand.

Seek Help

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. PAVE provides an article with more information:  Respite Offers a Break for Caregivers and Those They Support.

Parents of children with developmental disabilities can seek in-home personal care services and request a waiver for respite care from the Developmental Disabilities Administration (DDA). Here are resources to help with that process:

For parents whose children and youth experience conditions related to behavioral health, PAVE provides a toolkit with resources for navigating crisis systems, medical care, school, and family support networks. Here are some family serving agencies:

Parents of youth who are blind or low vision may seek support from the Washington State Department of Services for the Blind (DSB). Learn from youth at PAVE: My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind.

Parents of youth who are Deaf or Hard of Hearing (DHH) can connect with the  Office of the Deaf and Hard of Hearing | DSHS or connect with other family caregivers at Washington Hands and Voices.

Self-Care Videos for Mindfulness – Families Series

Take a Mindful Walk in Nature

Mindfulness can mean anything that helps you slow down and show up for what’s happening in a moment. This video demonstrates how to notice all of the body’s senses on a nature walk. Once it’s familiar, the concept could be useful in any environment, including indoors. Get creative and if it’s developmentally appropriate, you can encourage children to make up their own journey through their senses.

Get Calm by Getting Organized

When overwhelm is happening, it’s hard to imagine that getting organized will help. But here’s why it’s worth it: When you feel satisfied that you’ve done something, your brain releases happiness chemicals and hormones. This video provides information about how that works and how families can tap into happy by getting organized and taking time each day to celebrate everyone’s accomplishments.

Stay-Home Help: Get Organized, Feel Big Feelings, Breathe

A Brief Overview

Full Article

Big feelings are happening. We feel them, and we care for others who are having them. Times of uncertainly cause stress that makes big feelings feel bigger. Emotions might seem to run away with all the energy we had left. It can feel hard to breathe, and it’s easy to lose a sense of control over what happens within the span of a day.

Taking time to pause and organize the days ahead can help, especially if mindfulness and breath practices are built into the schedule.

Here’s a to-do list for every day

  1. Have a plan
  2. Be real with big feelings
  3. Breathe

The rest of this article provides ideas about these three strategies. Please note that resources included are not affiliated with PAVE, and PAVE does not recommend or endorse these programs or services.

Organize the day to create predictability

Getting organized with a clear routine is helpful because predictability calms the nervous system, suggests the Collaborative for Academic, Social, and Emotional Learning (CASEL). CASEL offered a webinar in early April to help parents and educators explore Social Emotional Learning (SEL) during the stay-home order related to COVID-19.

A key presenter was Jennifer Miller, founder of Confident Parents, Confident Kids, which  provides an article for parents: Setting up for Homework Success. Miller offers a video describing how to establish a morning routine to give each day a predictable jump-start. She advises families to schedule intentional moments for loving connection throughout each day. For example, one of her family’s rituals is a hallway hug first thing out of bed.

To support children in feeling safe, confident and in control, Miller recommends that adults plan-ahead to speak out loud when they notice children taking care of business: “I notice you are getting dressed…brushing teeth…feeding the dog… all by yourself.”

Predictability, contribution and accomplishment are all feelings that calm the brain and can be part of making and maintaining a family schedule. Miller advises that all members of the family work together to design the plan.

The family’s daily schedule can include a wake-up routine, movement, nature time, academics, rest time, meals and shared cooking/cleaning, screen time, art time, chores, reading, bath time, bedtime…. The schedule can have words and/or pictures and should be posted where everyone can refer to it.

Generally, children respond well to having some built-in choices and a variety of brain breaks. Sample family schedules are easy to search for online; families might prefer to design their own format, just for them.

Here are some places to look for ideas:

  • Mother.ly shares a mom’s family schedule that “went viral” during the pandemic.
  • Get-Organized-Mom.com offers printable forms and samples for how to use them.
  • Adding Homeschool to an online search brings up a wide selection of options, some for free and some with a small cost.

Feel big feelings, and let others feel theirs too

Generally, humans are emotional. We feel, and we respond to what we feel. Squished emotions usually don’t go away but loom larger. Here are a few strategies for being with big feelings:

Talk openly: Big feelings can be more manageable when they are spoken and shared. Ask another person, What are you feeling right now? Listen without judgment or analysis. Here’s one way to respond: Wow, that’s a lot to feel. Tell me more. A Sesame Street program called  Here for Each Other offers a 90-second video posted to YouTube to help adults talk to children about Big Feelings. To help families discuss feelings specifically related to COVID-19, PBS.org provides toolkits in English and Spanish.

Name it to tame it: Dan Siegel, a neuroscientist, recommends calling out emotions in order to manage them. Here’s a short video: Name it to tame it. To make brain science practical, Siegel talks about an upstairs brain and a downstairs brain. When the downstairs brain (emotion) controls the show, the upstairs brain (learning/problem-solving) clicks offline. Here are some ideas for what to do if someone is overwhelmed by emotion:

  • Create a safe physical space: Offer a drink of water, a blanket, a stuffed animal.
  • Keep a kind voice, move slowly, and back away/get low if your energy might feel like a threat (if you are a bigger or have more power, for example).
  • Turn down lights or turn on music if that makes sense for the other person.
  • Say something to simply acknowledge the big feelings: “I understand that (this is hard, makes you mad, scares you…).”
  • Allow enough time for the brain finds a way back “upstairs.”
  • When things are calm, work together to describe the big feelings and the experience of being with those feelings. 

Use pictures to identify emotions: Charts to help identify emotions are easy to find. Here’s a link on Pinterest with dozens of examples of printable or hand-made options. Making a chart together can create learning on many levels. A teacher might have a feelings chart to share.

Notice that feelings aren’t who you are: This strategy is from a meditation technique called Integrative Restoration (iRest.org). Notice a feeling as separate from the bigger picture of who you really are. Here’s a statement to sort that out: I have feelings, but I’m not my feelings. What happens when that statement is made? Is it possible to catch feelings in the act of forming or changing? This can be a conversation you have in your own mind or with another person.

Explore feelings through the body: This technique is common in yoga. Ask someone else or yourself: What feelings are happening right now, and where is the body feeling them? Talk about how a feeling seems to “live” in a certain place—or travel around the body. There is no good, bad, right or wrong way to feel. Give yourself or a family member permission to move around and maybe make sound in a way that safely helps the emotion express itself.  GoNoodle.com offers additional strategies for children to explore movement and mindfulness.

Schedule mindfulness: Make sure that big feelings have time to be seen and heard. According to an article for parents from the Child Mind Institute, “Designating time to practice mindful activities as a family will help everyone feel less anxious. It could be a daily family yoga session, or a quiet walk in the woods as a group, taking time to focus on the way the air feels, the sound of the birds and the smell of the trees. Another good family mindfulness idea is asking everyone to mention one good thing they heard or saw that day over dinner.” The Child Mind Institute provides access to live video chats with clinicians, telemedicine and more. The agency provides guidance in English and Spanish and offers parents an opportunity to sign up for a COVID-19 tip of the day.

Breathe with trees and plants

A calming breath works like a life vest when it feels like emotions are rushing us downriver and threatening to take us under. The basic goal is to regulate the flow of oxygen into the bloodstream and to make sure that carbon dioxide is being expelled in a balanced way. Here’s one idea for a breath that might boost relaxation:

  • Find a place where you can see a tree or a plant. Notice details about the leaves, needles or branches.
  • Note that trees and plants release oxygen into the air.
  • Breathe in gently and feel like the plant or tree is giving oxygen to you.
  • Breathe out gently and consider that your carbon dioxide is the food the tree or plant needs.
  • Experience a moment of being grateful that nature is breathing with you. Say thank you if it feels good to say it out loud.

PAVE provides a 5-minute video to help you breathe with trees and plants!

Feeling panic? Breathe easy and smooth

When anxiety causes feelings of panic, easy is the magic word for breathing. Some evidence suggests that a stressed-out person might feel more anxious by taking breaths that are too slow or deep. Dizziness, shortness of breath and feelings of suffocation can be signs that the gases exchanged during a breath aren’t balanced well. Here’s one source for information about why even breathing might be more calming than a really big, deep breath: LiveScience.com.

Here’s something to practice regularly to help your body find its calm, easy breath:

  • Notice your breath and just watch it for a little bit.
  • Start counting as you inhale and notice how long that lasts.
  • Start to match the inhale count and the exhale count.
  • Don’t try to slow your breath down, but gently try to make each breath about the same, counting the same time on the inhale and the exhale.
  • Don’t work to fill or empty your lungs all the way. Keep it easy.
  • Try breathing evenly for at least a minute—longer if you enjoy it.

Bonus Ideas: Consider whether there’s a young person in your house who could learn this breath, practice and then teach it to someone else. Another idea is for a child to practice breathing with a stuffed animal. On their tummy, the stuffed animal goes for a ride. Being hugged, the animal can feel the breath too.

PAVE hopes the ideas in this article might help your family members organize themselves around days and weeks at home that might nourish everyone with moments of peace, personal growth and learning. Understanding how to be with big feelings and breathe with ease can take a bit of practice, but the result can build emotional resilience. We hope all can find simple ways to make emotional learning and self-care part of each day to support the well-being of all.

If you need direct support in caring for children with special educational or medical needs, please click Get Help from our home page, wapave.org.

For serious conditions related to mental health and to find a professional provider, contact the Washington Recovery Help Line: 866-789-1511.

The WA State Department of Health provides a Behavioral Health Toolbox for Families Supporting Children and Teens During the COVID-19 Pandemic, published in July 2020. Each age-specific section (toddlers, school-age children, teens) includes information on common emotional responses, helping children heal and grow, and managing feelings and behaviors children may experience.