Tips to Organize Your Child’s Medical and School Documents

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 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

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?

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.
  • Use technology: Dr. Hempel Digital Network provides 10 health-record applications with four options that combine electronic medical records with telehealth capabilities. Other applications work with cellular phones. Here are three: MTBC PHR, Medical Records, and Medfusion Plus.

Tools to help you begin

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

  1. Portable Medical Summary from Seattle Children’s Hospital
  2. What’s the Plan from the Washington Department of Health

Guidance to help you 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 employment supports through DVR. 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:

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.