Self-Advocacy: Becoming an Active Member in Your Community

Brief overview:

  • Self-advocacy means taking responsibility for telling others what you need and want in a respectful and direct way. Anyone can be a self-advocate
  • This article will share ways to learn and practice self-advocacy.
  • It will share ways you can get involved in your community and how being a good self-advocate can help you do that.

If you have ever defended your rights or the rights of other people, you were acting as an advocate. Self-advocacy means taking responsibility for telling others what you need and want in a respectful and direct way. Anyone can be a self-advocate. Speaking up for yourself or someone else can help you be independent, and in charge of decisions for your life. However, it’s not always an easy thing to learn to do. It takes time and practice. This article will share ways to learn and practice self-advocacy. It will share ways you can get involved in your community and how being a good self-advocate can help you do that.

When you might need to be a self-advocate:

  • In your IEP meeting if you are in high school
  • When you ask for accommodations in high school or college
  • Asking for accommodations on the job
  • Asking for assistance and accommodations so you can be involved in your community
  • At a medical appointment

Things you need to know to become a better self-advocate:

  • Understand your civil rights and responsibilities
  • Know about the topic you are speaking about
  • Listen to other people and think about what they are saying
  • Make decisions based on what you need or want
  • Know that it’s ok to change your mind
  • Know that it’s ok to make mistakes
  • Express your feelings clearly and calmly
  • Ask to be always treated with dignity and respect
  • Learn to be assertive without being aggressive or disrespectful

Nemours TeensHealth has resources that can help you practice self-advocacy by being assertive. Assertiveness is the ability to speak up for yourself in a way that is honest and respectful. The articles have a built-in listening app (ReadSpeaker) to hear articles instead of reading them.

One way to help meetings and discussions be calm and respectful is to ask for meetings to be a “gracious space”. “Gracious space” is about people meeting together in person or online. It has a lot in common with being a good self-advocate. “Gracious space” is a way to describe how meetings and discussions can include people, and how people can behave during a meeting.

  • If the meeting is in-person, the physical meeting space is accessible for people with all types of disabilities. If it is online, the people setting up the meeting make sure the online platform is accessible for people with all types of disabilities.
  • People feel safe in the meeting. This means everyone treats everyone else with dignity and respect. Make an agreement about how everyone at the meeting will behave with each other.
  • People in the meeting are willing to listen and think about different opinions
  • The people in the meeting get to know each other

Learn more about Gracious Space:

Person Centered Planning:

Your person-centered plan, if you have one, can help you find ways to be involved in your community. Your person-centered plan team can help you practice being a self-advocate with people you already know and trust. If you don’t have a person-centered plan, and are interested in how they work, here are links to information from PAVE: What is Person Centered Planning?

PAVE has programs and resources to help individuals build and strengthen self-advocacy skills.

Ways to get involved in your community, including people with and people without disabilities

  • What are you interested in? Here are some ideas:
  • Work with other people to change government policies and advocate for people with disabilities
  • Volunteer for a cause you believe in
  • Share what life is like living with a disability with other people with your type of disability
  • Careers and businesses that can work well for people with disabilities.
  • Friendship and socializing with other people with disabilities
  • Join a club or group to do activities you like, such as sports or crafts or music or board games or movies

When you join a group or talk with someone in a group you are interested in, you can use your self-advocacy skills to make sure that people in the group or program can give you assistance, accommodations if you need them, and treat you with respect.

You can find groups and organizations that do all these things on social media!

Social media gives you ways to meet people through online groups, if you have difficulty with in-person activities. You can check if a group or organization is disability-friendly in their profile. Remember to use social media safely!

You can also do an internet search using terms like “disability organizations in [name of state or town]. And of course, you can ask your family and friends and, if you have one, the people on your person-centered plan team!

Becoming a strong self-advocate is important for successful independence and healthy living as an adult in your community. Always remember there are many people who are ready and willing to help you, so don’t be afraid to reach out and ask for assistance along the way!

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.

Summer Reading Tips for Families

A Brief Overview

  • Learning Heroes provides help to figure out a child’s reading level, useful when asking for summer reading recommendations from a teacher or librarian.
  • Any format that captures a child’s imagination and makes them enjoy reading is valuable. Consider graphic novels, audio books, read aloud online videos, or e-readers in addition to traditional books.
  • Consider rewards and prizes for reading achievements. The local library might have a summer program. Read on for ideas.
  • Some students will have school-based services over the summer through Extended School Year (ESY), Recovery Services (additional services due to pandemic impacts), or something else. See PAVE’s article: ESY Helps Students Who Struggle to Maintain Skills and Access FAPE.
  • PAVE provides a video and an article about supporting students with specific learning disabilities related to literacy.

Full Article

Summer days offer time to focus on play, creativity, and family fun. Reading can also be fun! If summer days include time for reading, it helps children keep the skills they worked on during the school year. PAVE has some tips for families to keep kids interested in reading, while still having fun! 

Check your child’s reading level

If possible, ask a teacher for information about the child’s reading level before school’s out. This information will help you use any reading guides provided by the school or library. Here’s another option: Learning Heroes provides help to figure out a child’s reading level.

Follow your child’s lead

Ask a librarian to show you where to find books in your child’s general reading level, then turn your child loose to explore. Children will often gravitate to books that look interesting and accessible.

Don’t worry if the child wants to explore a book that seems too easy or too hard. Keep in mind that the point is to keep the child interested in reading. Sometimes children need something easy to keep it fun, and sometimes the subject of a harder book makes it more fascinating.  

Some children choose comic books or books with diagrams, which are rarely included on teacher lists but can keep kids going to the library. Consider whether guilt-free reading options might reduce battles and keep eyes engaged on the page. Any format that captures a child’s imagination and makes them enjoy reading is valuable. Consider graphic novels, audio books, read aloud online videos, or e-readers in addition to traditional books.

Pull words from the page

Some children prefer or need books that are more interactive. Here are some options:

  • A read-aloud, with an adult or child doing the reading
  • Read together and share questions and answers along the way
  • Act out a book
  • Participate in a read-a-thon
  • Check out audio books
  • Seek applications and video programs that show words and provide narration

An agency called Bookshare provides e-books for children with learning disabilities, vision problems, or conditions such as cerebral palsy.  The agency provides alternative reading options, such as braille, audiobooks, large print books, and more.

Make reading part of everyday activities

Children learn reading habits from their family, and when adults show they love to read children will often model that behavior.

Read during everyday activities. Notice and read signs and billboards while you travel around town. Ask children to read the recipe while they help prepare a meal. They can help read a text message, an email, or a letter that came in the mail. Turn on the television’s closed caption feature so a favorite show includes the words to read and follow along.

Understand reading milestones

Washington State’s Office of Superintendent of Public Instruction (OSPI) provides guidance for teachers and families through Early Literacy Pathways. The downloadable booklet provides a chart of developmental milestones linked to literacy. An alternative place to get this type of information is from Understood.org: Reading skills at different ages.

Resource locations for summer reading

Washington’s Secretary of State provides a website page with information about a statewide Summer Reading Program. Included is a tool to find your local library.

Ask the teacher or school district what they offer over summer. Many schools partner with local organizations or offer school-supported access to digital learning applications, such as

The Barnes & Noble summer reading program is for all ages and allows any child to pick a free book from a predetermined list of books after completing the program. Visit the store to ask for a journal to track summer reading.

Scholastic Summer Challenge (Scholastic.com) has a summer reading challenge called “Readapalooza.” Kids log their reading minutes, unlock badges, and earn rewards.

Search locally online for “summer reading [your city]” or  “summer reading program near me” because many local or state-specific businesses and restaurants host summer reading programs.

Happy reading this summer and always!

Parent Participation in Special Education Process is a Priority Under Federal Law

A Brief Overview

  • Schools are required to accommodate parents to ensure their attendance and participation at meetings where their child’s special education services are discussed. Those rights are affirmed in a court decision from 2013: Doug C. Versus Hawaii.
  • A meeting that includes family is a higher priority than a renewal deadline.
  • If a deadline is missed, a student’s IEP services continue uninterrupted while meeting schedules are arranged to include family participation. The student’s eligibility does not expire.
  • The Washington Administrative Code (WAC) describes the participation rights of parents (WAC 392-172A-05001).
  • Failure to accommodate parent access to meetings when a child’s eligibility or services are discussed is a denial of the student’s right to a Free Appropriate Public Education (FAPE).

Full Article

Parents have the right to participate in all meetings where a student’s special education services are discussed. Those rights are protected by federal and state laws.

Students have a right to attend meetings about their school services at any age. Schools must invite students once their Individualized Education Program (IEP) includes a Transition Plan—a legal requirement by the school year when a student turns 16. The student is not required to attend but must be invited and accommodated to participate if they choose to.

A court decision in 2013 includes statements that family rights are more important than other legal requirements, such as renewal deadlines. More information about that case, Doug C. Versus Hawaii, is included later in this article.

Accessibility is a right

When inviting families to participate in meetings, the school is required to accommodate their needs related to scheduling, language access, parent or student disability, or something else. If a parent is ill, for example, the school is responsible to wait until the parent is well enough to meet. The school is responsible to provide a meeting format to meet the family’s needs, including through in person, virtual, or telephone attendance with any interpretation services needed for full participation.

IEP eligibility and services do not lapse or expire because the school delayed a meeting to accommodate the family. If a deadline is missed, a student’s services continue uninterrupted while meeting schedules are arranged to include family participation.

Here are examples of meetings where a parent/guardian must be invited and accommodated to participate:

  • Referral meeting to discuss whether to evaluate a student for eligibility
  • Evaluation review meeting
  • IEP meeting
  • Placement meeting
  • Transition conference to discuss moving into a new school or level of school (preschool into kindergarten, for example)
  • Meeting to discuss a Functional Behavioral Assessment (FBA) or Behavior Intervention Plan (BIP)
  • Meetings related to discipline, truancy, or complaints about Harassment, Intimidation, and Bullying (HIB)
  • Any other meeting where school-based services are discussed

What does the state say about parent rights to participate?

The Washington Administrative Code (WAC) describes the participation rights of parents (WAC 392-172A-05001).

The WAC explains that schools are not required to invite parents for “informal or unscheduled conversations involving school district personnel and conversations on issues such as teaching methodology, lesson plans, or coordination of service provision. A meeting also does not include preparatory activities that school district personnel engage in to develop a proposal or response to a parent proposal that will be discussed at a later meeting.”

The WAC includes information about a parent’s right to visit school: “A parent of a student eligible for special education services may request permission to observe their student’s current educational placement, and to observe any educational placement proposed or under consideration either by a parent or a group that makes decisions on the educational placement of the parent’s child, in accordance with applicable school district policy and state law.”

Here is a key statement from the WAC related to parent participation:

“The parents of a student eligible for special education services must be afforded an opportunity to participate in meetings with respect to the identification, evaluation, educational placement and the provision of FAPE to the student.”

What is FAPE?

The statement above includes the word FAPE. FAPE stands for Free Appropriate Public Education. FAPE is what a student with a disability is entitled to receive. The school district is responsible to deliver FAPE.

The district must ensure that students with disabilities receive accessible, equitable, and appropriate services: All are elements of FAPE. PAVE provides a video training with more information about these key features of student rights: Student Rights, IEP, Section 504, and More.

An IEP provides FAPE through specially designed instruction and goal setting, progress monitoring, supplementary aids and services, accommodations, a thoughtfully chosen placement, and more. The IEP team meets to discuss all of this and make sure FAPE is being provided. Parents are equal partners for discussing all aspects of a student’s education.

TIP: Ask for a draft copy of the IEP or any other documents that will be discussed with enough time to review them before a meeting. The draft IEP is unfinished until it’s been reviewed and finalized in a team meeting that includes family participation.

Families have always been a priority under the law

The collaborative process of an IEP team that includes the family has been part of special education since federal laws were written to protect a student’s right to receive an education designed just for them. Parent participation is one of six primary principles of the federal Individuals with Disabilities Education Act (IDEA).

Here’s more language that describes FAPE: The IEP must be “reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.”

This phrase—progress appropriate in light of the child’s circumstances—comes from another court decision, referred to as Endrew F. That Supreme Court decision established that meaningful progress must be tracked and monitored, and that the IEP must be adjusted if meaningful progress isn’t being made.

The IEP meeting is where families participate in tracking and monitoring that progress. Parents contribute important information about the progress or unmet needs of their children. Their observations provide critical information for team decision-making, and the federal laws were written to acknowledge the value of those contributions. That’s why parent participation is required for FAPE

TIP: Here’s a way to talk about parent rights within the process of special education: Failure to accommodate parent access to meetings when a child’s eligibility or services are discussed is a denial of FAPE.

What if parents cannot attend a meeting by the required renewal deadline?

Legal protections for students and families require a timely process. Schools are responsible to host a meeting that includes the family to update a student’s IEP at least every year. The IEP lists an “annual renewal date” on its cover page.

The school is also responsible to re-evaluate the student at least every three years to determine ongoing eligibility and to ensure that information about the student’s strengths and needs is up-to-date and the student is appropriately served through the IEP.

Sometimes there is a conflict when an evaluation or IEP renewal date sneaks up on the team and meetings aren’t scheduled early enough to accommodate the family and meet the deadline. It’s also possible that a family emergency or illness could prevent their timely participation.

In those situations, federal law has made it clear that the family’s participation is more important than the re-evaluation or IEP renewal deadline. The school can document the reason that the deadline is delayed, and a student’s services can continue without interruption until the meeting happens with family participants.

A student’s IEP eligibility does not expire because an evaluation is delayed, and the IEP does not lapse. Families can share this article and information about the federal court ruling if there is confusion.

What did Doug C. Versus Hawaii say?

The Ninth Circuit Court of Appeals handed down a decision on June 13, 2013, that reversed rulings by lower courts. The final ruling meant that the school in Hawaii was held accountable for having an IEP meeting without a parent. 

The court explained that schools must include parents at meetings unless they “affirmatively refused to attend.” Other legal language uses the phrase “good faith effort” to describe how schools must attempt to include families.

In the case of Doug C., the court found the school did not try hard enough to include the parent. In a hearing, the parent was able to share documentation showing he had provided the school with explanations each time he was unable to attend a meeting at the school’s suggested time and location. One documented explanation was that he was ill. In that case, the school held the meeting without him because they believed the IEP was about to “expire.”

The court said this rationale was based on a flawed premise. Earlier court rulings already had found that services do not end because an IEP renewal deadline is missed.  

In its decision, the court stated, “Parental participation is key to the operation of the IDEA for two reasons: Parents not only represent the best interests of their child in the IEP development process; they also provide information about the child critical to developing a comprehensive IEP and which only they are in a position to know.”

A place to get more information about court rulings related to special education is Wrightslaw.com. A Wrightslaw analysis of Doug C. Versus Hawaii includes a question-and-answer summary of the case. Here are highlights from that information:

Question: If a meeting is held after an annual renewal deadline, do IEP services lapse?

Answer: No. A child’s IEP does not lapse. Continuing to provide services based on the most recent IEP does not deny FAPE or “deprive a student of any educational benefit,” the court determined. The court further explained that there is no basis for assuming a school cannot provide services for a student whose annual IEP review is overdue.

Question: If there are scheduling conflicts, is priority given to school staff or the parent?

Answer: Priority is given to the parent. The court stated, “The attendance of [the]. . . parent, must take priority over other members’ attendance . . . an agency cannot exclude a parent from an IEP meeting in order to prioritize its representatives’ schedules.”

Question:  If the school has a meeting without the parent, can they make it okay by having another meeting within 30 days?

Answer:  No. The court found that parental involvement after-the-fact is not enough because “the IDEA contemplates parental involvement in the creation process.”

Question:  If a school district violates a procedural safeguard, such as parental involvement in meetings, does there need to be another finding of fault to show denial of FAPE? For example, would a court need to show that a child wasn’t receiving meaningful educational benefit from the services?

Answer:  No. The court does not need to determine a second violation. The denial of a parent’s right to participate in meetings is a violation of FAPE.

A parent’s right to participate in IEP process is part of the Procedural Safeguards that are written into the Individuals with Disabilities Education Act (IDEA). Schools are responsible for sharing a copy of the Procedural Safeguards at every formal meeting or whenever a parent requests them.

A copy of the Procedural Safeguards is downloadable from the website of the Office of Superintendent of Public Instruction (OSPI). An OSPI page titled Parent and Student Rights lists multiple translated versions of the Procedural Safeguards available for download.

Self-Care Videos for Mindfulness – Families Series

Feel What You Feel

When emotions overwhelm us, we sometimes react in ways that we later regret. “Name it to Tame it” is a concept from neuroscientist Dan Siegel. It means that if we identify our emotions and work with them, instead of pushing them away, we are better equipped for self-control. This simple body sensing meditation creates a way to practice emotional self-awareness and build mental muscles for emotional regulation.

For more videos about mindfulness, please go to wapave.org Thanks for watching!

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.

Parent to Parent (P2P) Connects Caregivers Statewide for Support

A Brief Overview

Full Article

Family caregivers for children with disabilities and special healthcare needs may feel isolated or uncertain about where to seek help for their children and themselves. A place for support is Parent to Parent (P2P), a network that connects families to trained parent volunteers who have experienced a similar journey with their own children. In addition to resources and information, parents share personal support and encouragement.

Families new to the disability world can find preliminary information and request help right away by filling out a short form on a website page designed just for them, hosted by The Arc of Washington: Getting Started/Contact Us…Welcome to our World.

The first P2P program started in Nebraska in 1971. Programs started in Washington State in 1980. A national P2P network was established in 2003 to provide technical support to the statewide networks, with a goal to reach all 50 states. P2P USA provides an historical timeline.

Washington has a network of P2P programs that serve every corner of the state. The Arc provides support to the regional programs and links them to national P2P resources. Families can go to arcwa.org to find a list of P2P coordinators, organized by region and listed under the counties served.

¿Hablas español? Para más información y hacer referidos, llama a su condado abajo: Coordinadores de Enlance Hispano.

Families can request a parent match 

When reaching out to the local P2P network, families can request a “parent match.” P2P leaders will locate a helping parent volunteer who has a similar lived experience and help the families get connected. From there, a supportive relationship can develop, where empathy, hope, and strength are shared.

Helping Parents cannot provide all answers, but they share insight, solidarity, and role modeling. They also share the joy and pride they’ve experienced while watching their child grow and achieve. A phrase commonly shared is: “I know, and I understand.”

In keeping with evidence-based practices promoted by national and state P2P organizations, the helping parent volunteers are training following a specific process and all personal information is kept confidential.

P2P services are free and include:

  • Emotional support for family caregivers of children with special needs
  • Referrals for community resources
  • Information sharing about disabilities and medical conditions
  • Family matching with trained helping parents
  • Social and recreational events
  • Training for parents who would like to become helping parent volunteers
  • Disability awareness and community outreach

Someone to listen and understand

Washington’s statewide P2P is funded by The Arc of Washington State, the Developmental Disabilities Administration (DDA), and the Department of Health/Children with Special Health Care Needs. Individual county programs receive funding from host agencies, county DDA offices, the United Way, local grants, private donations, and more.

The Council for Exceptional Children published a research paper about P2P in 1999. Respondents to a national survey reported the following benefits from participating in P2P:

  • Someone to listen and understand (66 percent)
  • Disability information (63 percent)
  • Care for my child (58 percent
  • Ways to find services (54 percent)

Statewide, various agencies and family-led organizations host local P2P programs. An interactive map of Washington State provides an easy way to locate information in English and Spanish about a P2P program in your area.

Another way to begin is to contact the statewide P2P coordinator, Tracie Hoppis, by sending an email to: parent2parentwa@arcwa.org.

How to Cultivate Resilience like a Starfish

Starfish are masters at letting turmoil wash around them. They are also excellent models of resilience. This short video uses imagery from the sea and provides a strategy to get grounded, steady the breath, and cultivate four key aspects of resilience: purpose, connection, adaptability, and hope.

Become present and let thinking float away as you treat yourself to this opportunity to take a few minutes to care for yourself.

Breathe Mindfully and Give Your Favorite Stuffy a Ride

Even young children can become grounded and calm if breathing with intention is fun and accessible to them. This short video features two young models showing how they give their stuffed animals a ride while they breathe into and out of their tummies.

Have your child choose a comfortable place to lie down and place their stuffed animal on their tummy. Help them to notice what it’s like to breathe and watch the stuffy go up and down. Ask them what it feels like to notice their breathing and their stuffy taking a ride.

Our five-year-old model says, “I loved it and felt like I could fall asleep.”

Body Sensing Meditation for Help with Sleep

Anxiety around bedtime is a struggle for many people of all ages. Whether the challenge is to fall asleep or stay asleep, worry doesn’t make getting enough zees any easier. Here is a strategy for calming that uses a body scanning strategy combined with breath awareness.

Parents might share this practice out loud to help a child go to sleep. The child also might learn to use all or parts of the technique on their own. Once you understand the basic strategy you can adapt the wording to meet your own needs or the needs of the person you are sharing this with. Some might even fall asleep before you get through the whole practice!

If you or another person experiencing this practice do not have all of their body parts you can ask whether it feels good to imagine those body parts while doing the body scan or whether it feels better to include only body parts that are present. For a person who is deaf or hard of hearing or for people who respond well to sensory touch, there is the option to gently touch parts of the body while moving through the practice. Once learned, the practice can be silent, internal, and personalized. Be creative about how to make it workable and useful for any person who might benefit.

To help with sleep, body sensing starts with the feet…

Please make yourself comfortable in bed or another space where you can relax and listen to the 10-minute meditation provided in this video.

When you are finished listening, if you are not yet ready for sleep, you may wish to begin again with the body sensing, always starting with your feet and traveling awareness up through the body, noticing the breath throughout your own journey into rest.

The Meditation Script

If you prefer to read this script aloud to someone else or to yourself, here are the words from the video:

Notice that you have two feet. On your feet there are toes, big toes, second toes, middle toes, fourth toes, and baby toes. Notice your feet and toes. Notice what your feet and toes are touching. Is it soft or hard? Cool or warm? Are your toes and feet relaxed? Notice that you have ankles. Your legs have a lower part. You have two knees. Your legs have an upper part. You have hips. Notice what your hips, legs and feet are resting on. Is there anything you could change to be even just a little bit more comfortable?

Notice your tummy. Notice that as you breathe in your tummy goes up. As you breathe out your tummy goes down. Notice what it feels like to breathe in and out of your tummy. As you breathe in, you are noticing that your tummy is filling up. As you breathe out, you are noticing that your tummy is getting empty. What does breathing feel like? Just notice.

Notice that behind your tummy is your back. You have a lower back, a middle back, and an upper back. Inside your back there are ribs, and your ribs have a back part, two sides, and a front part. Your front ribs meet at your chest.

Notice that when you breathe in, your tummy fills up and so does your chest. Your ribs get a little wider. When you breathe out your chest goes down and so does your tummy. Your ribs settle in. See if you can notice what it feels like when your tummy and chest fill up with breath and when they empty of breath. Notice how long it takes for a breath to come all the way in and to go all the way back out again. Your body knows how to breathe all by itself and does this all day long. Notice how it feels to pay attention to your body breathing.

Notice that your chest is in between your shoulders. Your shoulders are connected to your arms.  Your arms have an upper part. You have elbows. Your arms have a lower part, and you have two wrists. Notice your hands. You have fingers. Each hand has a thumb, first finger, second finger, third finger and a baby finger. Your hands have a back part and a palm. Notice what your shoulders, arms and hands are resting on. Is it soft or hard? Cool or warm? Are your arms, hands, and fingers relaxed? Is there anything you could change to be even just a tiny bit more comfortable?

Notice that your heart is beating inside your chest. You are breathing, and your heart is beating. Your body is taking care of its basic needs to be healthy and alive. Notice that right now you are safe. Notice the room you are in and whether there is lightness or darkness or some of both. Notice any sounds that are near or far. Notice that your body is breathing. Your chest and belly fill up each time you breathe in and empty each time you breathe out. Make any little changes that you need to be slightly more comfortable.

Notice that you have a neck and a head. Notice what the back of your head is resting on. Your head has a top part and two sides. You have eyebrows and two eyes. Your eyes can close so that your top eyelashes and your bottom eyelashes touch each other. Imagine that there is a color behind your closed eyes that is a soft dark blue. Notice how you feel when you peer into this deep blue space behind your eyes. Notice if there are any edges to the dark blue or if it seems to stretch forever, like the night sky.

Notice that you have a mouth. Inside your mouth there is a tongue, and you have teeth. Your mouth has a right side and a left side. Your mouth is resting.

Notice that you have a nose with two nostrils. Air comes into your nostrils and goes out through your nostrils. Notice that air traveling into your nostrils moves down into your chest and tummy. After the air empties from your tummy and chest it leaves through your nostrils. Notice the long journey that your breath takes through the body, from the nostrils to the chest and belly. Out from the belly, the chest, and the nostrils. What does it feel like to watch your body breathing?

Notice the shape of your whole body and what your body is resting on. You have feet and legs. You have a tummy and a back. Your arms and hands are resting. Your whole body is comfortable and resting. You are breathing with your nose, your chest and your belly. Your eyes are closed, and there’s a dark blue color behind your eyelids. We’re breathing in and breathing out through our noses. We are safe and resting. We are noticing what it feels like to rest.

Download the meditation script

Telling Your Story with a Purpose: How to Inspire Action in Two Minutes

Every person’s story has the potential to impact how others think or act. Disability rights have been legislated because of individuals who spoke up and sparked change. This video introduces a strategy for telling a potent story in two or fewer minutes, using your own hand to guide the process. Think of this as a hand model for an inspirational elevator speech to improve or inspire:

  • Self-advocacy
  • Public comment
  • A meeting with public officials
  • Legislative forums or candidate meetings
  • Community education

 The Arc of Washington State provides pathways for people to participate in legislative advocacy. The Arc serves people with intellectual and developmental disabilities of all ages and their families. 

Some staff members at PAVE are certified to teach Telling your Story with a Purpose, a training created by the state’s Department of Health and Seattle Children’s Hospital. For support to create your story, fill out a PAVE Helpline request, and a trained staff member will contact you.

Questions to consider first:

  1. What is the challenge or problem that you, your child or your family faces? Think of a problem that also affects other people and families. Consider writing one sentence about people in general and one sentence about your own story, child, or family. 
  2. How does this challenge affect others?
  3. How might this challenge affect others if nothing changes?
  4. What needs to change?
  5. What can be done to improve the situation?
  6. Who has the power to make a change? 

Key information for your story:

  1. Who are you?  Be sure to say your name and the district, city, or town you live in.
  2. If you want to include information about other people be sure you have permission before sharing anything confidential, such as names, ages, or health information.
  3. Clearly and simply describe the problem or challenge.
  4. Explain why this is important.
  5. Include a short story (4-5 sentences) about how this issue has affected you and your family. If possible, use a positive example – a situation where things went well and why you want others to have a similar experience.
  6. What do you want your listener to do? State your request in one sentence with 30 or fewer words. Avoid a general request for “support.” Provide a clear action:
    • “I ask you to vote for…”
    • “I want you to change this policy in order to…”
    • “I want you to fund a program that…” 
  7. Stop and check: Consider if your comments might make the listener feel criticized or attacked. Focus on the solution. Make sure you’ve included statements about how others in the community can benefit.
  8. End by restating your request and saying thank you. When possible, thank the listener for something they have done in the past that you appreciate–voting for a bill, serving on a committee, funding a program.