Defining your Social Media Game Plan: #Goals

Thinking about how you use social media and screens can help you make better choices for your mind, body, and relationships. When you take time to notice how you feel, what you see, and how much time you spend online, you can stay in control instead of letting screens take over. Talking with trusted adults and setting goals for your screen time can help you stay safe, feel better, and enjoy the good parts of being online. 

Think about Yourself

Your social media accounts are all about you! Think about why you are using social media or other screens. Is your goal to talk to friends, find cool videos, or learn something new? Thinking about your goals and what you like helps you control how you use social media, instead of letting it control you. To better understand your goals, ask yourself:

  • What is your goal when you open an app or go online?
  • Did you reach your goal, so you can set it down now?
  • Are you in control of how you use it, or does it feel like it controls you?

Think about What You See

Consider what you see and read online. What purpose does this have for you? Is it something helpful and interesting, or is it making you feel bad? Sometimes you might see things that are mean or make you feel sad, anxious, or even angry. If you notice that what you’re seeing online is often upsetting or distracting you from important things, maybe it’s time to look for content that helps you feel better. You can control some of what you see online by only following pages that make you feel good, and by unfollowing or muting accounts that post things that upset you or make you feel bad about yourself.

Think about what you see online and ask yourself:

  • What kinds of things do you usually look at online?
  • What purpose does this content have for you?
  • If some content makes you feel bad, are there other things you could look at online that might help you feel better or learn something new?

Think about How You Feel

Think about how you feel and how you use screens when you’re feeling strong emotions. Sometimes we use phones or games to escape negative feelings, but there are other ways to calm down, like talking to people you trust, taking a walk, or making art.

When thinking about how social media makes you feel, ask yourself:

  • How does using social media make you feel?
  • Does what you see online make you feel good?
  • When you’re feeling sad, bored, or stressed, do you often use screens or social media to feel better?
  • Are there other ways you can help yourself feel calm that don’t involve a screen?

Think about What Screens Get In The Way Of

Screens shouldn’t stop you from doing homework, seeing friends in person, getting enough sleep, or doing other things. Think about how long you are going to use an app or website and set a clear time limit for yourself. That way, you can reach that time and be able to put your phone down because you planned to stop. To help you set a time limit that works for you, ask yourself:

  • How long are you planning to use social media or a screen right now?
  • Did you set a clear time to stop using it?
  • Does using screens stop you from doing other important things, like homework, spending time with family or friends in person, or getting enough sleep?

Think about Relationships

You can talk with a friend or trusted adult about your online life and how you are feeling about it. By sharing about how you feel about friends online and in real life, you can better understand what purpose connecting online has for you. Talking helps you learn how to use screens safely.

When you think about your friends and family, ask yourself:

  • Do you feel comfortable talking to a parent or trusted adult about your online life?
  • If something online made you feel uncomfortable or upset, would you feel okay talking to someone about it?
  • How do you feel about your friendships online compared to your friendships in real life?
  • What purpose does connecting online have for you in your friendships?

Remember, social media should be something that adds to your life—not something that takes away from it.


Identify Your Five

One way to stay safe online is by using the “Rule of 5,” which means having five trusted people you can talk to when something online feels wrong or confusing. These questions can help you identify five people you can trust:

  • Who do I feel safe talking to when something is bothering me?
  • Who listens to me without judging or getting angry?
  • Who has helped me solve a problem before?
  • Who would I go to if I saw something online that made me feel scared or confused?
  • Who do I trust to keep me safe and give good advice?
  • Who do I feel comfortable being honest with, even if I made a mistake?
  • Who do I know that cares about me and wants the best for me?
  • Who could I call or message quickly if I needed help right away?

Once you’ve identified five people, write them down or save their contact info in a safe place.

Final Thoughts

Taking control of your social media use starts with understanding your goals, feelings, and habits. By reflecting on how, why, and when you use screens, you can make choices that support your well-being and help you stay safe online. Whether you’re setting time limits, curating your feed, or reaching out to trusted people, every small step counts. Keep checking in with yourself, stay curious, and remember—you have the power to shape your digital world in a way that works for you.

Learn More

This self-reflection guide was developed as a practical tool to help implement the strategies outlined in Level Up Your Social Media Game: Digital Safety Tips for Youth and Young Adults with Disabilities.  It is designed to encourage thoughtful engagement with the digital safety concepts presented in that article, supporting users in applying them to their own online experiences.

Family caregivers and professionals can learn how to support kids’ health and emotional well-being by helping them use social media safely. A great place to start is the American Academy of Pediatrics’ “5 Cs of Media Use” guides.

Level Up Your Social Media Game: Digital Safety Tips for Youth and Young Adults with Disabilities

Social media has both benefits and disadvantages. To use social media safely and effectively, it’s important to practice digital safety and self-awareness. This guide teaches tips and tools to help you make smart choices and stay in control online.

Brief Overview

  • Social media helps people with disabilities connect, express themselves, and find support—but it also comes with risks that users need to understand.
  • A trusted adult is someone you know in real life who cares about your safety and can help you make good choices.
  • Not everyone online is who they say they are.
  • People may act mean online or post things just to get attention.
  • Be careful what you share and talk to someone you trust if something feels wrong.
  • Anything you post online can be copied and shared. Think before you post, especially if someone is pressuring you to share something quickly.
  • Not everything online is true. Learn how to check facts and find trusted websites so you can tell what’s real and what’s not.
  • Asking for help is smart and keeps you safe.

Introduction

Social media is everywhere and isn’t going away. For people with disabilities, it opens up new ways to connect, communicate, and participate in conversations that might otherwise be difficult.  It can help you feel included and connected. It can be a powerful tool for inclusion and accessibility.

However, while social media offers many good things, it also comes with risks that everyone, especially youth and young adults, need to know about.

Knowing Who to Trust

One of the most important ways to stay safe is by knowing who you can trust, especially when talking to people online. Not everyone you meet online is the same as the people you know in real life. A trusted adult is someone you know in real life who truly cares about your safety and wants to help you make good choices. This could be a parent, teacher, school counselor, coach, or another grown-up you feel safe talking to. They listen to you, respect your feelings, and are there to help you when something is wrong. They are someone you can count on in real life. This is very different from a social media “friend” or “follower” who might be someone you’ve never met in person. Just because someone is nice to you online doesn’t mean they are safe or honest. People online might pretend to be someone they are not, like acting like they are your age to try and gain your trust. This can be part of a trick to try and get your personal information or pictures. Remember, a trusted adult is someone you can rely on for help and safety in the real world, not just someone who sends you messages online.

The Evolving Purpose of Social Media

Social media began as a way for people to connect, talk, and share things with each other. It can be a fun place where kids connect with friends, explore their interests, and learn new things. It can also help kids feel supported and included, especially those with disabilities.

Social media apps and websites are free to use, which makes them easy for lots of people to join. Even though you don’t pay money to use them, social media companies still make money—by showing you ads. The longer you stay on the app, the more ads you see, and that helps the company earn more. In other words, the social media companies are making money from your time and attention. That’s why it’s important to remember that you’re in control of how much time you spend online. When you use social media in a smart way, it can be fun and helpful—just make sure it’s working for you, not the other way around.

Social Media Risks and How to Stay Safe Online

But social media isn’t always safe. Some people feel like they can say mean things online because they think no one will find out who they are. Since they can’t see your face or how you feel, they might not realize how much they’re hurting you—and that makes them less likely to stop. Also, when kids see others being mean online, they might think it’s okay to join in. And sometimes, trying to get likes, shares, or views can lead kids to post things that hurt someone else, even if they didn’t mean to. That’s why it’s important to learn about these risks and talk with friends and family about how to stay safe and kind online.

Cyberbullying

Cyberbullying is when people are mean to you online by sending hurtful messages or making unkind posts. Sharing or forwarding mean content that someone else wrote can is also a form of cyberbullying. Studies show that youth with disabilities are more likely than other kids their age to be cyberbullied.

If someone is being mean to you online, you don’t have to handle it by yourself. Talk to an adult you trust, like a parent, teacher, or school counselor. They can help you figure out what to do next. STOP.THINK.CONNECT, a website that specializes in online safety and cybersecurity awareness, says it’s usually best not to talk back to the bully. Instead, save a screenshot or copy of what they said and show it to your trusted adult. That way, they can better understand how to help you. You should also learn how to block or report the person on the app or website you’re using. Most sites have tools to help you stay safe.

Social Engineering and Trickery

Sometimes, people use social media to trick others into giving away personal information—this is called social engineering. It can happen when someone pretends to be your friend, asks you to click a link, or says something that makes you feel scared or rushed. They might try to get your passwords, address, or other private details. This can be especially confusing if you have trouble telling when someone is being dishonest. That’s why it’s important to be careful about what you share online and to talk to a trusted adult if something doesn’t feel right or makes you uncomfortable.

You have the right to say “No” if someone—even someone you know—makes you feel uncomfortable online. It’s okay to stop talking to them or to question what they’re saying. If something doesn’t feel right, trust your instincts and talk to a friend or trusted adult. Some people online may pretend to be kids or teens when they are actually adults with harmful intentions. That’s why it’s important to be careful about who you talk to and what you share in conversations. You don’t have to handle anything alone—there are people who care about you and want to help.

Anything you share online or through your phone—pictures, posts, texts, comments, everything!—can be copied and shared. Once you post or send something, it might be used in ways you didn’t expect or want. Before you share anything, ask yourself if it includes private information or something you wouldn’t want everyone to see. If someone is pressuring you to send something quickly, that’s a red flag. Take a moment to think, and don’t let anyone rush you. Talk to a trusted adult if you’re unsure. Being smart about what you post helps protect your privacy and keeps you safe.

Harmful Content

Social media can sometimes show things that make people feel bad, unsafe, or want to do things that aren’t healthy. This is called harmful content. You might see pictures or videos that make you feel bad about your body or tell you to do unhealthy things, like not eating enough. This kind of content can hurt your self-esteem and mental health. Many of the photos and videos online are edited or only show the best parts of someone’s life, not the full picture. These unrealistic expectations can make people feel like they have to be perfect all the time, which isn’t fair or healthy. Everyone has good days and bad days, but social media often hides the hard parts.

To protect yourself, remember that it’s okay to be yourself and that nobody is perfect. Try to follow people who are honest and positive, and take breaks from social media when you need to. If something online makes you feel bad, talk to a friend or trusted adult.

Privacy

When you share personal information online—like your full name, address, phone number, or passwords—it can be used in ways you don’t expect. That’s why it’s important to protect your privacy by being careful about what you share and who can see it. Some companies collect your data to show you ads or sell your information, and strangers online might try to trick you into giving away private details. To protect yourself, don’t share private details online, especially with people you don’t know.

When playing games or talking with people you don’t know online, you can use game names and avatars to protect your privacy. Often, online game websites and apps will help you to create a random name that doesn’t require any personal information.

Use strong passwords and keep them secret. You can also check your privacy settings on apps to control who sees your posts.  The National Cybersecurity Alliance (StaySafeOnline.org) provides a list of links to the official privacy settings pages for popular websites and mobile apps, including major social media sites, and a guide to creating and using strong passwords.

Misinformation and Digital Literacy

Not everything you see online is true. Sometimes, people post things that are made up or not based on real facts. This is called misinformation. It can spread quickly on social media because the internet often cares more about what gets attention than what is true. It’s important to check if something is true before you believe it or share it. You can do this by looking it up on trusted websites or asking an adult to help you. 

Learning how to tell the difference between real and fake information online is called digital literacy, and it helps you stay smart and safe online. A big part of being digitally literate is knowing where to find information you can trust. Websites from certain places are often trusted sources. These kinds of websites are generally considered places that share reliable facts and safety tips backed by research:

  • Websites that end with .gov usually belong to the U.S. government, like places that share safety tips or resources.
  • Websites ending with .ed or .edu are often connected to educational organizations or government education departments.
  • Websites ending with .mil are for the U.S. military.

Looking for these endings can be a helpful way to find information you can trust. It’s a good idea to stay current and check trusted websites for the latest information.

Scams

 Scams are tricks people use to try to steal your money or personal information. Scammers might pretend to be someone you know, like a friend or family member, or even act like they’re from your bank or a company you trust. They might send you messages asking for your password, bank info, or to send them money.

If something feels weird or too good to be true, it probably is. One way to stay safe is to check with a trusted adult that you know in person—before you respond.

Rule of Five

One way to stay safe online is by using the “Rule of 5,” which means having five trusted people you can talk to when something online feels wrong or confusing. These people could be parents, teachers, counselors, or other adults who care about you and want to help. If you get a message or see something that makes you feel uncomfortable, it’s always okay to stop and check with one of your five trusted people before you respond. Even if you feel embarrassed or worried, asking for help is the smart thing to do. Your safety matters more than keeping a secret or being afraid of losing your phone. Trusted adults are there to support you, not to get you in trouble.

Here are some questions you can ask yourself to help you identify five people you can trust:

  • Who do I feel safe talking to when something is bothering me?
  • Who listens to me without judging or getting angry?
  • Who has helped me solve a problem before?
  • Who would I go to if I saw something online that made me feel scared or confused?
  • Who do I trust to keep me safe and give good advice?
  • Who do I feel comfortable being honest with, even if I made a mistake?
  • Who do I know that cares about me and wants the best for me?
  • Who could I call or message quickly if I needed help right away?

Once you’ve identified five people, write them down or save their contact info in a safe place.

Final Thoughts

Social media is a tool, and like all tools there are right ways and wrong ways of using it. Social media should help you—not control you. When you know how to stay safe, set limits, and ask for help when something feels wrong, you can enjoy the fun parts of being online. Always try to be kind and respectful, just like you would be in person. With the right tools and support, you can find ways to make social media work for you, not the other way around.

Learn More

Check out the related article, Defining your Social Media Game Plan: #Goals, for self-reflection questions to help children, youth, and young adults identify their goals for social media.

Self-Care is Critical for Caregivers with Unique Challenges

Caring for individuals with disabilities or complex medical needs can be emotionally and physically draining, making intentional self-care essential for long-term well-being.  Simple practices like mindfulness, getting enough sleep, going for a walk, or taking a few deep breaths can help reduce stress and build resilience. Talking to others who understand and finding time to rest can also help caregivers stay strong and healthy.

A Brief Overview

  • 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.
  • PAVE provides a library with more strategies to cultivate resilience, create calm through organization, improve sleep, and more: Self-Care Videos for Families Series.

Introduction

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.

Two Feet, One Breath

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

Two Feet, One Breath infographic. Calming practice that can help your mental health.

Download this infographic, Two Feet 1 Breath:
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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.

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!

Almost everyone knows or cares for someone with special needs. According to the Centers for Disease Control (CDC), at least 28% of the American population experiences a disability. The result is widespread compassion fatigue, which is a way to talk about burnout from giving more than you get.

Below are some ways to use self-care to avoid burnout!

Connect with others

Building a support network with others who share similar life experiences can be incredibly valuable. When you’re going through a challenging or unique situation—like parenting a child with special needs or managing a family health issue—it can feel isolating. These connections offer emotional validation and a sense of understanding that can be hard to find elsewhere—you don’t have to explain everything because others simply get it. Research shows that social support can significantly reduce stress, anxiety, and depression, enhancing overall well-being and resilience. Beyond emotional comfort, support networks empower individuals by helping them build confidence, understand their rights, and even engage in advocacy efforts that benefit their families and communities.

Here are some communities and resources to help you get connected:

Parent-to-Parent Connections
The Parent-to-Parent network can help by matching parents with similar interests or by providing regular events and group meetings.

Support for Families of Youth Who Are Blind or Low Vision

Washington State Department of Services for the Blind (DSB) offers resources and support for families. You can also hear directly from youth about their experiences in the PAVE story: My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind.

Support for Families of Youth Who Are Deaf or Hard of Hearing
Washington Hands and Voices offers opportunities for caregivers of youth who are Deaf or Hard of Hearing (DHH) to connect, share experiences, and find community.

Resources for Families Navigating Behavioral Health Challenges
Several family-serving organizations provide support, education, and advocacy for caregivers of children and youth with behavioral health conditions: 

  • Family, Youth, and System Partner Round Table (FYSPRT). Regional groups are a hub for family networking and emotional support. Some have groups for young people.
  • Washington State Community Connectors (WSCC). WSCC sponsors an annual family training weekend, manages a Substance Use Disorder (SUD) Family Navigator training, and offers ways for families to share their experiences and support one another.
  • COPE (Center of Parent Excellence) offers support group meetings and direct help from lead parent support specialists as part of a statewide program called A Common Voice.
  • Dads Move ​works to strengthen the father’s role in raising children with behavioral health needs through education, peer support and advocacy.
  • Healthy Minds Healthy Futures is an informal network on Facebook.

PAVE provides a comprehensive toolkit for families navigating behavioral health systems, including guidance on crisis response, medical care, education, and family support networks.

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 Your 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.

The Mayo Clinic has this to say 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 the 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. Exercise can also improve your sleep, which is often disrupted by stress, depression and anxiety.

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, but it should be something that you find at least somewhat enjoyable that requires some concentration.  Some possibilities are working on artwork, cleaning the house or car, crafting, working on a puzzle, cooking or baking, taking a nature walk, or building something.

For more mindfulness ideas, check out PAVE’s Mindfulness Video Series. From this playlist, Get Calm by Getting Organized, explores how getting organized provides satisfaction that releases happiness chemicals and hormones.

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 activities, 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!

Time management is a key part of stress management! This article, “Stress Management: Managing Your Time” from Kaiser Permanente, gives tips for managing your time well, so you can reduce the pressure of last-minute tasks and make space for the things that matter most to you.

Seek Temporary Relief

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 and caregivers 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). PAVE provides two training videos about eligibility and assessments for DDA. For more information about the application process, Informing Families provides a detailed article and video.

Download the Emotional Wellness Tips for Caregivers

Dating on the Spectrum

This article is written for older youth and young adults who are neurodivergent, with an emphasis on autistic neurodivergence. It is based on research and the life experiences of autistic individuals, who chose the term “autistic person” rather than “person with autism” as their person-first term.

Definitions:

  • Neurodivergent: when a person’s mental or neurological function is different from what is thought of as typical or normal. It is often used to describe autistic people or people with other brain-based conditions like attention deficit hyperactivity disorder (ADHD).
  • Ableism: when a person, or most people in a society, believes that being normal means not having a disability. This belief results in discrimination against people with disability because they are viewed as “not normal” or “less than normal.”
  • Infodumping: sharing a large amount of detailed information about a topic all at once, without the back-and-forth of most conversations. It’s a term and communication style that is common among neurodivergent people.
  • Stim, stimming: short version of “self-stimulatory behavior.” Repeated movements, sounds, or other actions by people to regulate their emotions, cope with sensory overload, or express themselves. For example, an autistic person might jiggle their leg while eating dinner with a large group of people or in a noisy room.

Brief Overview:

  • Dating while neurodivergent often looks very different than traditional dating, and there are many aspects to be aware of as you seek out a prospective relationship.
  • Ableism can influence attitudes about dating, relationships, partners, and yourself, so it’s important to think about it and try to change those beliefs both in yourself and in your relationship.
  • Individuals with disabilities are at much higher risk for abuse, sexual victimization, and other issues, so it is important to teach boundaries and use precautions.

Introduction

Neurodivergent individuals are rarely shown as romantic partners in the media. They’re often shown as emotionless robots, or as people who can’t connect well with others. Society often views neurodivergent people dating negatively, which can make it tough to think about relationships.

Still, neurodivergent people do find love, long term partners, and start families. However, they may face more challenges in relationships and are at higher risk of being hurt or abused.

If you accept your neurodivergence and disability as a part of who you are, believe in your ability to act, and learn to express your needs and boundaries (your limits), you will have a better chance of having healthy romantic relationships.

How ableism appears in relationships and stereotypes

Ableism is everywhere, and it can have a tremendous impact on your relationship. Even when you are both disabled, you may have accepted beliefs, stereotypes, and expectations that can affect your wellbeing together.

All these beliefs are false. You can be aware of them, and work to avoid them:

  • People with disabilities can’t get better, it’s pointless to try.
    • Like anyone else, people with disabilities need to work on their own self-improvement, especially in the context of a relationship.
  • It’s ok to stereotype people with disabilities.
    • There’s a lot of media with stereotypes about neurodivergent women in particular. You are more than your diagnosis, and people trying to date you based on your diagnosis should try to understand you as a person rather than a negative stereotype. If they can’t see past those stereotypes, you may want to move on.
  • People with disabilities deserve whatever they can get, it’s ok to mistreat them.
    • It is never ok to mistreat another person. People with disabilities can be successful dating and can choose a partner that’s right for them.
  • People with disabilities can’t be in real relationships.
    • People with disabilities can date, form relationships, get married, move in, become sexually active, and start families. It is absolutely possible to form a healthy, happy relationship. Don’t let anyone tell you otherwise.

Why date?

Forming relationships in the 21st century can be difficult. Between navigating dating apps, social media, and shifts in how people look at dating and relationships, it can be hard to know how to approach things. Recent studies show that increasing numbers of young people aren’t pursuing relationships , and with social media sex scams  on the rise, there’s less enthusiasm to partner up. Yet, people still want relationships and it’s important to reflect on your own wants and needs when looking for partner.

Common reasons to pursue dating and relationships include romantic companionship, fun, sexual intimacy, exploring your romantic self, financial stability, and starting a family.

The case for dating neurodivergent partners

Do you want to date someone with a similar disability? Many neurodivergent individuals prefer to date others who are neurodivergent, saying that they tend to understand disability better, they are easier to communicate with, and they often have shared interests and challenges.

However, you may find yourself interested in someone without a disability. In this case you may have a stronger need to know how to advocate for your own needs as someone who has a disability and educate your partner on challenges you face. Self-advocacy, setting boundaries, and having meaningful conversations about expectations, accommodations, and your needs are all skills you can use to help your romantic relationships thrive.

With a neurodivergent partner, relationships are not automatically easy

There’s an old saying: If you’ve met one autistic person, you’ve met one autistic person. It’s true! All autistic people are different. When you are in a relationship with someone, your neurodivergence and their neurodivergence are going to interact, and sometimes, they mesh very well. For example, you both may love the same tv shows and enjoy infodumping about your shared interests.

However, sometimes they may create friction. For example, your partner may prefer to use an electric toothbrush, and you may find the noise horrible. Figuring out how to create fair solutions that meet everyone’s needs is a challenge, but a critical skill for being in a relationship. As you get closer to a person, you discover all the “sharp and rough edges” of their personality and behaviors. At these points it’s good to remember to love your partner as a whole, because challenging traits and behaviors are as much a part of them as the fun parts.

Know what you want, be open and respectful

As you think about dating, it’s important to know what you want from dating, and look for potential partners whose goals match yours. If you want to start a family, but your romantic partner is seeking a summer fling, neither of you may be satisfied with the relationship. Think clearly about what you are looking for and be willing to communicate your dating or relationship goal with the person you are dating.

Realize that things may change, that a “summer fling” might get serious and turn into a “want to start a family.” It’s important to be open about what you want and be true to yourself about your desires for the relationship, while respecting your partner as an individual with the ability and right to make their own decisions and communicate their own needs.

Self-advocacy

Self-advocacy is the ability to speak up respectfully for your own needs. It might be stating that you need your partner to not spring things on you at the last minute, not slurp soup loudly, or to tell you directly when they are upset with you. In turn, you can make sure that when they self-advocate, you are there to listen to their needs and not become defensive.

It’s helpful to be patient, be an active listener who focuses on the other person and responds thoughtfully and kindly especially when someone advocating for their own needs may seem like criticism.

Some things that can help include:

  • “I” statements: “I feel left out when you don’t tell me that you’re unhappy.”
  • Writing things down to share with the other person
  • Scheduling conversations for times when you can both listen but take breaks as needed.

Here is an article from PAVE with more tips about self-advocacy: Self-Advocacy: Becoming an Active Member in Your Community.

Building neurodivergent joy and identity

A big part of being able to advocate for yourself socially is the ability to think of your neurodivergence in a healthy way. This means thinking of it as part of your identity, finding joy in your neurodivergence, and the ability to explain that your neurodiverse behaviors are a part of you. In a society that is not designed for neurodivergent people, they are often stigmatized or seen as wrong or broken. Creating a culture of acceptance in your relationship can help you and your partner see yourselves in a more positive light.

Here are some ways you can do this:

  • Explain your neurodivergent traits and what they mean in your own words. You might say, “I like to stim like this because it helps clear the fog out of my head and helps me get centered so I can relax with you on the couch.”
  • Finding the joy may be difficult in a world not designed for neurodivergent happiness, but being able to infodump, explore pleasant sensory experiences, or stimming together can help build a sense of shared joy.
  • Finally, making neurodivergence part of your identity can be very powerful. By making it your own, and taking pride in it, you take away much of the power of people who would call you broken. By building a healthy sense of identity and ownership of your disability in your relationship, you set yourself up for a healthier view of yourself and your relationship, not as people who are defined by being broken, but defined by being different.

Safety

Safety in a relationship is critical, because if you don’t feel safe in a relationship, it is not a healthy relationship. If you cannot advocate for your own safety needs, it is time to look out for yourself and leave the relationship.

Unfortunately, the rates of abuse in autistic relationships are high.  Some say abusers target disabled individuals because abusers think the disabled person is less likely to leave, others feel that the higher levels of stress in autistic relationships can trigger unhealthy relationship dynamics. It becomes very important to educate yourself on the various types of abuse and keep or build a community of supportive people who can help you if you need to leave an abusive relationship.

Self-advocating for safety: sometimes relationships can start to feel uncomfortable or not safe. You can tell your partner that you don’t feel comfortable and need things to “stop right now.” An example: your partner has started drinking a lot, and you do not feel safe with them when they’re drunk. You want to tell them you don’t feel safe when they’ve been drinking more, and they need to reduce how much they drink if they want the relationship to continue.

One healthy way to set boundaries is to use the ‘If you do X, I will do Y.” method, which focuses on their behavior, and your response. For example, “If you yell at me again like that, I will go to my parents for the weekend.” That way, you set an expectation, and your response is your own. These conversations are difficult, and can be intimidating, but it’s better to address things and come to a resolution, than be stuck in an unsafe situation which may get worse.

Working on yourself as a romantic partner

While your disability can play a large part in your relationship, that doesn’t remove the need to see yourself as a romantic partner first, with your own strengths and challenges. Some of these may be related to your disability, some of these might simply be personal traits.

When you know which strengths and challenges are due to disability, and which are due to personal traits can help you and your partner work through conflicts more easily. As an example, becoming dysregulated and upset when your partner cooks with garlic, a serious sensory challenge for you, may be tied to your disability.

However, becoming upset because your partner wants you to help more with cooking when you’d rather play videogames may be something to work on as a partner.
When you discuss these issues or situations with your partner, a need based on your disability is not something you can change, while choosing to play video games over helping to cook is under your control.


Being a good partner is being able to grow and inspire growth with your partner. When you understand the nature of the challenge, know how to communicate it, and can help figure out a solution that works for everyone, that’s a sign of a healthy relationship and being a good partner.

A final note on this: it can be helpful to find other neurodivergent couples and seek their advice on what works, or a relationship counselor who specializes in neurodivergent relationships. There’s no shame in getting help if you need it.

Challenges

Unfortunately, dating while disabled comes with several challenges from living in a society where neurodivergence and disability are not always supported.

  • Marriage penalty: Due to the limit on assets to receive disability benefits, you may lose your SSI benefits if you get married.  Because of this, many disabled couples do not get married as they would lose their lifesaving benefits.
  • Scams: There has been a marked increase in internet scams targeting people with disabilities. Educating yourself on the various scams and online threats out there is very important. 
  • Lack of trained therapists and appropriate sexual or relationship education: Finding neurodiversity-affirming couples therapy and sex-ed can be difficult. Couples’ therapists may not be trained to understand the experiences of neurodivergent couples. In addition, many neurodivergent and disabled people may not receive sexual or healthy relationship education. Those who do receive this education may find it’s not effective for them (i.e., abstinence-based education) or based around neurotypical relationship norms.

It’s up to the individual or couple to look for community resources on healthy neurodivergent relationships if you need more support or information.

Living your best disabled life together

There’s a scene in the film Tekkon Kinkreet’ where an autistic boy says of his mentally ill brother, “I’m missing pieces, and he’s missing pieces. But he’s got all the pieces I need, and I’ve got all the parts he needs!” This can be a big reality for a lot of disabled couples; you are stronger together and can use your unique abilities to help your partner out. Find ways to use the strengths and skills that come with your disability to support each other.

For example, if someone with ADHD is dating someone with autism and they move in together, the person with ADHD can handle all the unique chores that only need to be done once or twice a year, while the autistic person handles the weekly apartment cleaning. That way the person with ADHD can handle novel tasks that the autistic person may struggle with, while the autistic person does chores as part of a regular routine that they’re comfortable with.

As a couple, you can define your relationship on your own terms. Maybe the yard is messy, or your apartment isn’t as organized as you’d like, but being able to be together and help each other flourish is what’s important.

Finally, it’s important to realize that your relationship is in some ways an act of defiance against a world that would deem it, and you, wrong, strange, or broken. Things will often be more difficult. You may be more likely to be fired from a job or fail in school. You might have communication issues with others, or your partner. You may run into various barriers within your own abilities, or things that are imposed by the larger society. That is why it is important to be patient and understanding, but able to find those special things that bring joy in a way that is unique to your relationship. Joy in the face of stigma is the ultimate act of resistance.

Conclusion

In conclusion, dating while neurodivergent comes with challenges, but that doesn’t mean it’s impossible. In fact, many neurodivergent people go on to have healthy dating lives, and end up forming families together, or figure out ways to create happy relationships with neurotypical partners. At the end of the day, being in a healthy relationship is your path, and you can make it work for you AND your partner, equally.

Creating Joyful and Inclusive Holidays: Comfortable Social Spaces for Neurodivergent Individuals During the Holidays 

A Brief Overview 

  • Social interactions can be particularly challenging during the holiday season due to frequent and overwhelming gatherings. 
  • Neurodivergent individuals who enjoy socializing may prefer calm, predictable settings. 
  • Structured social activities provide a comfortable way for neurodivergent individuals to engage with others, as they offer clear rules and a shared experience. 
  • Family gatherings can be stressful due to interactions with relatives they don’t see often, leading to feelings of overwhelm. 
  • It’s crucial to respect the boundaries of neurodivergent individuals, allowing them to make their own choices about social interactions and providing opportunities for breaks to avoid overstimulation. 
  • Understanding and respecting their social preferences and boundaries, especially during the holiday season, helps ensure neurodivergent individuals feel safe, respected, and included. 

Full Article 

Navigating social interactions can be particularly challenging for neurodivergent individuals, especially during the holiday season when gatherings are frequent and often overwhelming. While some neurodivergent people enjoy socializing, they may prefer calm and predictable environments where they can engage in structured activities. Understanding their unique needs and preferences is crucial for creating a supportive and inclusive atmosphere that allows them to participate comfortably and meaningfully. 

Comfort in calm familiarity 

Neurodivergent people who enjoy socializing may prefer calm, predictable gatherings. They might like sitting with a friend to play video games, quietly working on a puzzle together, or playing board games. When faced with a loud, busy family gathering, neurodivergent individuals may withdraw or seek out one person they enjoy chatting with—someone who genuinely respects and understands their accommodation needs, and with whom they can happily spend time discussing a single subject. This person feels safe to them. However, it’s important to recognize that their safe person might need a break too, so having multiple people that they feel safe with can be beneficial. 

Incorporating structured activities 

For neurodivergent individuals, having structured social activities like board games or group video games can provide a comfortable way to engage with others. Social rules and nuances can often be confusing, making unstructured mingling feel overwhelming and unmanageable. Structured activities offer a more supportive environment for social interaction with the rules clearly identified and a shared experience to drive conversation. Baking together, wrapping presents, and completing holiday crafts are all shared experiences that have clear instructions and goals. These activities not only make socializing more manageable but also add a festive and inclusive touch to holiday gatherings. 

Overstimulation with unfamiliar relatives 

Even family gatherings can feel strange and stressful. Talking to relatives they don’t see often can be tough for your loved one as they work out how to talk and act around people that feel unfamiliar, even if they are family. This can be overwhelming since they have to understand and respond to different social cues and expectations that might not be easy or comfortable for them. 

To help ease this stress, consider preparing your loved one in advance by discussing who will be at the gathering and what to expect. Shared interests can be a great way to connect with others and make conversations more engaging. Tell or remind the neurodivergent individual of interests they have in common with relatives they don’t see as often to help start conversations. Socializing can be challenging, so it’s important to be patient and provide support without pressure. 

Supporting boundaries and choice 

Even with careful planning and maintaining traditions, the holiday season can still be overwhelming. Back-to-back events can be exhausting for anyone, but they can quickly become overstimulating for neurodivergent individuals. Seeing new people or people they only see once a year, having to navigate complex social hierarchies, and often trying to hide their neurodivergent traits to fit in can be very draining. While it is important to encourage your neurodivergent loved one to engage, it’s also critical to respect their boundaries and teach them how to have agency. Agency refers to their ability to make their own choices and decisions about social interactions, ensuring they feel empowered and in control. Allowing them to sit out some holiday parties for the sake of their own wellbeing can be a gift of emotional recharge, ensuring they don’t come out of the season completely exhausted. 

Conclusion 

Recognizing and respecting the social preferences and boundaries of neurodivergent individuals is essential, especially during the busy holiday season. Providing structured activities and allowing for breaks can help them manage the stress and overstimulation that often accompany large gatherings. By fostering an environment of understanding and support, we can ensure that neurodivergent individuals feel safe, respected, and included, ultimately enhancing their social experiences and overall well-being. 

Learn More about Creating Joyful and Inclusive Holidays 

This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began with Supporting a Neurodivergent Family Member During the Holidays. Meeting Neurodivergent Needs While Traveling provides tips and strategies to support neurodivergent individuals during travel to minimize stress. Learn Sensory-Friendly Tips for Neurodivergent Loved Ones to ensure they can enjoy the festivities and participate in making memories. Finally, Comfortable Social Spaces for Neurodivergent Individuals During the Holidays provides strategies for managing stress and overstimulation in social situations. 

Additional information: 

Creating Joyful and Inclusive Holidays: Sensory-Friendly Tips for Neurodivergent Loved Ones

A Brief Overview

  • This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began in Supporting a Neurodivergent Family Member During the Holidays and continues in Meeting Neurodivergent Needs While Traveling and Comfortable Social Spaces for Neurodivergent Individuals During the Holidays.
  • The holidays bring various sensory inputs that can be joyful for some but overwhelming for others.
  • It’s important to plan for managing these sensory experiences to help neurodivergent loved ones.
  • Identify or create a calm space where the neurodivergent person can decompress and avoid or reduce overwhelm.
  • Preferences for specific sensory supports should be discussed with the neurodivergent individual.
  • Recognize and normalize self-stimulatory behaviors, or “stims”, that do not cause physical harm to themselves or others as coping mechanisms for managing sensory input and stress.
  • Plan for touch-sensitive individuals by setting boundaries, providing scripts for addressing unwanted touch, and having an escape plan.
  • Foster an inclusive environment by understanding and respecting sensory needs, ensuring clear communication, and seeking feedback from neurodivergent loved ones.

Full Article

The holidays are full of sensory experiences. Flickering candles, holiday music, the aromas of food cooking, the fur on an unfamiliar dog, and the sounds of rambunctiously happy family members all provide sensory input. What is a source of joy for one person may be a cause for overwhelm to another. To help manage these varying sensory experiences, it’s important to plan ahead.

A calm space

Identifying or creating a space where to take a break and still have fun eases the intensity and allows your loved one to decompress. The “veg-out room” usually creates itself, when people go there to relax and watch TV marathons while their stomachs settle after a big meal. By dimming the lights and keeping things quiet in this space, you can quickly and easily build a calming environment for neurodivergent family members to retreat, relax, and rejoin social activities when it is right for them.

Sensory systems and preferences

To reduce the potential for being overwhelmed, your loved one may need to wear earbuds or headphones during social periods or other activities. Similarly, weighted clothing or objects (like blankets or stuffed toys) may provide a sense of comfort and security. Sensory supports are not one-size-fits-all, so talk with your loved one about their preferences. If you notice their preferences related to a specific sensory system, they may be interested in exploring other ways to meet their sensory needs at a later time. PAVE provides a downloadable introducing to The Sensory Systems and How to Meet Their Needs in the article, Giving the Gift of Sensory Regulation, Supporting a Happy Holiday Season for All. Resist the urge to introduce new sensory supports without input from your neurodivergent loved one and especially during the holidays, when there are already many unfamiliar experiences to navigate.

Normalizing self-stimulation

Many neurodivergent people do specific repetitive behaviors to manage sensory input, reduce anxiety, or express themselves. These self-stimulatory behaviors, or “stims”, are ways they’ve learned intuitively to comfort themselves, cope in times of stress, and even express joy. Being able to respectfully discuss and normalize stimming that does not cause harm to themselves or others helps to create a more inclusive environment. Thought-out responses can turn an angry retort into a teaching moment, such as, “Everyone has their own way of being and this is her way of pushing through her discomfort to spend this time with us. She is doing her best and we’re glad she’s here!”

Touch sensitivities

Unexpected touch can be very upsetting, especially those who are touch sensitive. Even those who would usually understand touch sensitivity may cross boundaries during the holidays. When consent to touch can’t be communicated or understood, preparation is critical. If your loved one is touch sensitive, there are some things you can do ahead of time to accommodate and support their needs:

  • Plan an escape route to a place where they can find sanctuary.
  • Remind family and friends of acceptable touch before you gather. For example, “I hope your saving your hugs for me and your fist-bumps for Theo!”
  • Provide scripts for addressing unwanted touch from children, pets, and adults. For instance, telling a child, “I really don’t want you climbing on my lap, but you can sit next to me on the couch and show me your Pokémon game.” Communicating to a pet owner, “I’m feeling a little overwhelmed by Cooper trying to put her head in my space. Can you keep her behind the dog gate?”, can help mitigate the overwhelming touch before it happens.
  • Assemble a team of supporters to gently redirect unwelcome touch and serve as a shield. These family members and friends can step in as needed to respectfully uphold boundaries, such as sitting between your loved one and a reaching child or holding a persistent animal to keep it from jumping on them.
  • Prepare an escape plan by arranging for an individual they feel safe with to pick them up, if their touch boundaries are not respected.

Conclusion

Creating a supportive and inclusive holiday environment involves understanding and respecting the sensory needs of neurodivergent loved ones. By providing sensory supports and clear communication about touch boundaries, we can help them navigate the holiday season with greater comfort and ease. Seeking feedback from your neurodivergent loved one and giving them a sense of agency in determining their sensory supports ensures their needs are met effectively. With careful planning and empathy, we can ensure that everyone, regardless of their sensory preferences, can enjoy the holidays and create cherished memories together.

Learn More about Creating Joyful and Inclusive Holidays

This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began with Supporting a Neurodivergent Family Member During the Holidays. Meeting Neurodivergent Needs While Traveling provides tips and strategies to support neurodivergent individuals during travel to minimize stress. Comfortable Social Spaces for Neurodivergent Individuals During the Holidays provides strategies for managing stress and overstimulation in social situations.

Additional information:

Supporting a Neurodivergent Family Member During the Holidays

The holidays are a fun and festive time that can also be overwhelming, especially for those whose brains operate differently from what is typical or expected. This difference is called neurodivergence and it encompasses a variety of brain-based disabilities.

A Brief Overview

Introduction

People often see travel, new food, music, and new social situations as some of the joys of holidays, but those who are neurodivergent can find these experiences overwhelming. This doesn’t mean they dislike the holidays; it just requires some preparation to make the season inclusive and enjoyable for your neurodivergent loved one.

To achieve an inclusive experience, your loved one should feel comfortable explaining their accessibility needs and asking for support when necessary, confident that those around them will respond with understanding and accommodate their needs. Overall, special attention should be focused on providing a sense of agency, which means giving individuals control over their own choices and actions. This includes planning for neurodivergent needs ahead of time rather than improvising and hoping for the best.

Travel

Traveling during the holidays can be particularly challenging for neurodivergent individuals due to changes in routine, unfamiliar environments, and sensory overload. To support your loved one, consider planning travel itineraries that include ample downtime, familiar items for comfort, and clear, detailed schedules to reduce anxiety. Additionally, choosing quieter travel times and less crowded destinations can help create a more manageable experience. Learn more about Meeting Neurodivergent Needs While Traveling in this article.

Sensory Considerations

Sensory sensitivities are common among neurodivergent individuals, making it essential to create a holiday environment that minimizes sensory overload. This can include using soft lighting, reducing loud noises, and providing sensory-friendly activities. Offering options like noise-canceling headphones, weighted blankets, or fidget toys can also help your loved one feel more at ease during holiday gatherings. Some neurodivergent individuals may find certain textures or physical contact uncomfortable or overwhelming. Preparing scripts, promoting awareness, and supporting touch boundaries can help your loved on engage to the best of their ability and personal comfort. For tips to support sensory needs, read Creating Joyful and Inclusive Holidays: Sensory-Friendly Tips for Neurodivergent Loved Ones and download hands-on tools in Giving the Gift of Sensory Regulation, Supporting a Happy Holiday Season for All.

Social Overwhelm

Social interactions can be overwhelming for neurodivergent individuals, especially during large holiday gatherings. Creating comfortable social spaces involves setting up quiet areas where your loved one can retreat if they need a break from the festivities. It’s also helpful to establish clear social expectations and provide opportunities for smaller, more intimate interactions. Encouraging open communication needs and boundaries can ensure everyone enjoys the holiday season. To explore more strategies for supporting your neurodivergent loved one’s social challenges, check out the article: Creating Joyful and Inclusive Holidays: Comfortable Social Spaces for Neurodivergent Individuals During the Holidays.

Routine adaptations

Navigating the holidays can be particularly challenging for neurodivergent individuals when an expected routine does not happen, often referred to as a “routine violation.” Some neurodivergent individuals enjoy doing the same things daily so they feel less distressed by the unexpected aspects of life and better able to cope. For example, eating the same food for breakfast, following the same morning routine, or going on the same walk may help them maintain a sense of stability and predictability. The holidays are full of routine violations, including both fun aspects (like getting presents, which can however cause difficulties around knowing an appropriate response) and more challenging ones (such as unexpected food and not being able to do the things that help you cope).

Planning for routine violations can help, as you can make adaptations that support the individual’s needs. It’s critical to have conversations about what aspects of the routine are the most essential and identify methods to support these aspects with the individual’s feedback. For example, allowing someone to bring fruit bars for their breakfast might be a very easy way to support their daily breakfast routine. Knowing ahead of time that a loved one has a personal routine at a set time every day allows for adaptations in planning, such as driving in separate vehicles or arranging for someone they trust to transport them. Adaptations can support routines, often with little to no impact on others’ holiday experience.

Maintaining holiday traditions that offer familiarity and comfort is also important. Certain traditions, such as White elephant gift exchanges or board games, may be beloved components of every holiday. Much anticipated activities and annual traditions can also positively support routine needs, despite them happening less frequently than daily routines.

Crisis Planning

Sometimes, even with everything going as planned, things can still go wrong. In such cases, a neurodivergent crisis can appear as an individual shutting down or melting down. While a shutdown may be a less disruptive internal experience requiring a quiet space to withdraw to and recover, it is still a crisis. In contrast, a meltdown presents a more challenging situation that may be more obvious and impact others. Having a clear crisis plan ensures everyone knows what to do to support your loved one, where the person can go, and how to keep them safe while avoiding embarrassment or guilt during the holidays. Being prepared can make all the difference in managing these difficult moments effectively and fostering acceptance.

Final Thoughts

While the holidays can be a joyous time filled with celebrations and new experiences, they can also be overwhelming for neurodivergent individuals. By understanding and accommodating their unique needs through proactive planning, clear communication, and providing a sense of agency, we can create an inclusive and enjoyable holiday season for everyone. This involves thoughtful travel arrangements, sensory-friendly environments, manageable social interactions, routine adaptations, and crisis planning, ensuring that the holidays are a time of comfort and joy for all. Empowering neurodivergent loved ones to manage their needs effectively fosters a sense of belonging and acceptance within the family. By fostering an environment of understanding and support, we can help our neurodivergent loved ones fully participate in the festive spirit of the season, creating a better and more inclusive experience for everyone.

Below is an infographic of the information above.

Download this infographic in PDF form

Creating Inclusive Holidays for Neurodivergent Loved Ones

Learn More about Creating Joyful and Inclusive Holidays

This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members. Meeting Neurodivergent Needs While Traveling provides tips and strategies to support neurodivergent individuals during travel to minimize stress. Learn Sensory-Friendly Tips for Neurodivergent Loved Ones to ensure they can enjoy the festivities and participate in making memories. Comfortable Social Spaces for Neurodivergent Individuals During the Holidays provides strategies for managing stress and overstimulation in social situations.

Creating Joyful and Inclusive Holidays: Meeting Neurodivergent Needs While Traveling 

A Brief Overview

  • This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began in Supporting a Neurodivergent Family Member During the Holidays and continues in Sensory-Friendly Tips for Neurodivergent Loved Ones and Comfortable Social Spaces for Neurodivergent Individuals During the Holidays.
  • Social interactions can be particularly challenging during the holiday season due to frequent and overwhelming gatherings.
  • Neurodivergent individuals who enjoy socializing may prefer calm, predictable settings.
  • Structured social activities provide a comfortable way for neurodivergent individuals to engage with others, as they offer clear rules and a shared experience.
  • Family gatherings can be stressful due to interactions with relatives they don’t see often, leading to feelings of overwhelm.
  • It’s crucial to respect the boundaries of neurodivergent individuals, allowing them to make their own choices about social interactions and providing opportunities for breaks to avoid overstimulation.
  • Understanding and respecting their social preferences and boundaries, especially during the holiday season, helps ensure neurodivergent individuals feel safe, respected, and included.

Full Article

Navigating social interactions can be particularly challenging for neurodivergent individuals, especially during the holiday season when gatherings are frequent and often overwhelming. While some neurodivergent people enjoy socializing, they may prefer calm and predictable environments where they can engage in structured activities. Understanding their unique needs and preferences is crucial for creating a supportive and inclusive atmosphere that allows them to participate comfortably and meaningfully.

Comfort in calm familiarity

Neurodivergent people who enjoy socializing may prefer calm, predictable gatherings. They might like sitting with a friend to play video games, quietly working on a puzzle together, or playing board games. When faced with a loud, busy family gathering, neurodivergent individuals may withdraw or seek out one person they enjoy chatting with—someone who genuinely respects and understands their accommodation needs, and with whom they can happily spend time discussing a single subject. This person feels safe to them. However, it’s important to recognize that their safe person might need a break too, so having multiple people that they feel safe with can be beneficial.

Incorporating structured activities

For neurodivergent individuals, having structured social activities like board games or group video games can provide a comfortable way to engage with others. Social rules and nuances can often be confusing, making unstructured mingling feel overwhelming and unmanageable. Structured activities offer a more supportive environment for social interaction with the rules clearly identified and a shared experience to drive conversation. Baking together, wrapping presents, and completing holiday crafts are all shared experiences that have clear instructions and goals. These activities not only make socializing more manageable but also add a festive and inclusive touch to holiday gatherings.

Overstimulation with unfamiliar relatives

Even family gatherings can feel strange and stressful. Talking to relatives they don’t see often can be tough for your loved one as they work out how to talk and act around people that feel unfamiliar, even if they are family. This can be overwhelming since they have to understand and respond to different social cues and expectations that might not be easy or comfortable for them.

To help ease this stress, consider preparing your loved one in advance by discussing who will be at the gathering and what to expect. Shared interests can be a great way to connect with others and make conversations more engaging. Tell or remind the neurodivergent individual of interests they have in common with relatives they don’t see as often to help start conversations. Socializing can be challenging, so it’s important to be patient and provide support without pressure.

Supporting boundaries and choice

Even with careful planning and maintaining traditions, the holiday season can still be overwhelming. Back-to-back events can be exhausting for anyone, but they can quickly become overstimulating for neurodivergent individuals. Seeing new people or people they only see once a year, having to navigate complex social hierarchies, and often trying to hide their neurodivergent traits to fit in can be very draining. While it is important to encourage your neurodivergent loved one to engage, it’s also critical to respect their boundaries and teach them how to have agency. Agency refers to their ability to make their own choices and decisions about social interactions, ensuring they feel empowered and in control. Allowing them to sit out some holiday parties for the sake of their own wellbeing can be a gift of emotional recharge, ensuring they don’t come out of the season completely exhausted.

Conclusion

Recognizing and respecting the social preferences and boundaries of neurodivergent individuals is essential, especially during the busy holiday season. Providing structured activities and allowing for breaks can help them manage the stress and overstimulation that often accompany large gatherings. By fostering an environment of understanding and support, we can ensure that neurodivergent individuals feel safe, respected, and included, ultimately enhancing their social experiences and overall well-being.

Learn More about Creating Joyful and Inclusive Holidays

This is part of a four-part series on the topic of creating joyful and inclusive holidays for neurodivergent family members, which began with Supporting a Neurodivergent Family Member During the Holidays. Meeting Neurodivergent Needs While Traveling provides tips and strategies to support neurodivergent individuals during travel to minimize stress. Learn Sensory-Friendly Tips for Neurodivergent Loved Ones to ensure they can enjoy the festivities and participate in making memories. Finally, creating Comfortable Social Spaces for Neurodivergent Individuals During the Holidays provides strategies for managing stress and overstimulation in social situations.

Additional information:

Giving the Gift of Sensory-Regulation: Supporting a Happy Holiday Season for All  

It’s the most wonderful time of the year, that is, until…  

Sensory overload can happen to anyone. It is not specific to any single age or disability. In fact, it can also happen to people who do not have a disability.  Whether your sensory systems are functioning as usual for you or disordered, your body needs both sensory input and a break from sensory input.  

The holidays can be a joyous but chaotic time for the whole family. Planning ahead to ensure your personal sensory needs are met, as well as those of your loved one with a disability, can make the difference between experiencing a beloved tradition and struggling to fulfill holiday obligations. In this article, we will share time-honored tips and innovative ideas for managing sensory needs throughout the holiday season from family members, professionals, and self-advocates.  

 Try out these holiday planning and self-regulatory tools.  

Download “The Sensory Systems and How to Meet Their Needs”  

Get to know the eight sensory systems, what they do for the body, and some quick ideas for getting sensory input for each system.  

Download Holiday Mindfulness Profiles  

Use these worksheets to identify your own needs, as well as the needs of your loved one with a disability. Identify what you find enjoyable, what you dread, and rethink your schedule with time to meet your personal needs. Then, use the second page to discuss and plan for your loved ones’ needs. 

 Download the “Ground Yourself in the Moment Worksheet” 

Apply this strategy of counting down with sensory input to calm yourself or your loved one when you feel anxious. Use this worksheet to help yourself or your loved one through each step in the countdown process.  

This video on mindful breathing can be helpful for calming and grounding:

Parents can share this practice out loud with younger children; the techniques in the video help reduce anxiety and help people of any age fall asleep:

Additional Resources:

Home for the Holidays: The Gift of Positive Behavior Support 

Holiday Survival Tips for Families with Special Healthcare Needs

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

Procedural Safeguards: Student and Parent Rights in Special Education

A Brief Overview:

  • Procedural safeguards are a legal requirement for schools and must be provided to parents once a year and during specific situations (e.g., initial referral, filing a complaint, change in placement due to disciplinary action).
  • The Office of Superintendent of Public Instruction (OSPI) issued a statewide procedural safeguards notice, available for download in multiple languages, that outlines parental rights in special education.
  • The Individuals with Disabilities Education Act (IDEA) requires that each state education agency provide ways to solve disagreements between parents and schools regarding a student’s special education.  Procedural safeguards provide information on the formal and informal dispute resolution options available in Washington state.
  • Specific protections are in place when disciplining students with disabilities, including requirements for conducting manifestation determinations and continuing education services during extended removals.
  • Section 504 includes its own procedural safeguards to protect the rights of students with disabilities who are not eligible for special education under IDEA. The Section 504 Notice of Parent Rights is available for download in multiple languages from OSPI.

Full Article

The Procedural Safeguards are a written set of legal protections under the Individuals with Disabilities Education Act (IDEA) designed to ensure that students with special needs receive appropriate education. IDEA, implemented under Washington State law, requires schools to provide the parents/guardians of a student who is eligible for or referred for special education with a notice containing a full explanation of the rights available to them (WAC 392-172A-05015). Understanding these safeguards allows for effective advocacy in a child’s education and ensures their rights are protected throughout the special education process. They do not constitute legal representation or legal advice.

A copy of the procedural safeguards notice is downloadable in multiple languages from the Office of Superintendent of Public Instruction (OSPI). School districts must provide this notice once a year and during key times such as:

In addition to detailing when the procedural safeguards notice must be provided, the procedural safeguards contain information about several key areas, including:

Prior Written Notice

Schools must give prior written notice (PWN) before making any significant decisions about a student’s education, such as changes in identification, evaluation, or placement. This notice must include a detailed explanation of the decision and the reasons behind it. This document is shared after a decision is made and prior to changes in a student’s educational program.

Parental Consent

Schools must get written parental consent (permission) before conducting an initial evaluation or providing special education services for the first time. Parents can withdraw their consent at any time, but this doesn’t undo actions already taken. Once consent is given, the school has 35 school days to complete the evaluation. This consent is only for the evaluation, not for starting services. If the child is a ward of the state, consent might not be needed under certain conditions. When starting special education services under the initial IEP, the school must get consent again, and if refused, they can’t force it through mediation or legal action. Consent is also needed for reevaluations involving new tests, and schools must document their attempts to get it. However, consent isn’t needed to review existing data or give standard tests that all students take.

Independent Educational Evaluation

If a parent disagrees with the school’s evaluation of their child, they can ask for an independent educational evaluation (IEE) that the school district will pay for. The district must give the parent information on where to get an IEE and the rules it must follow. If the district does not agree to the IEE, they have 15 calendar days to either start a file a due process hearing request or agree to pay for the IEE. PAVE provides a downloadable sample Letter to Request an Independent Educational Evaluation.

Confidentiality of Information

Student educational records are confidential. IDEA provides parents and guardians the right to inspect and review their student’s educational records and request amendments if they believe they are inaccurate or misleading. When the child turns 18 years of age, these rights pass from the parent or guardian to the student. The Department of Education provides a website page called Protecting Student Privacy to share resources and technical assistance on topics related to the Family Educational Rights and Privacy Act (FERPA). The procedural safeguards explain terms about educational records from IDEA and FERPA to help parents understand their rights and protections.

Dispute Resolution

IDEA requires that each state education agency provide ways to solve disagreements between parents and schools regarding a student’s Individualized Education Program (IEP). In Washington State, there are both informal and formal options. When parents and school districts are unable to work through disagreements, the procedural safeguards outline the dispute resolution processes available. These options ensure that parents and schools can work towards a mutually agreeable solution while protecting the child’s right to a Free Appropriate Public Education (FAPE).  The formal dispute resolution options available through OSPI are mediation, due process hearings, and state complaints.

Disciplinary Protections

When disciplining students eligible for special education, schools must follow specific rules to ensure fair treatment. If a student is removed for more than 10 consecutive school days or shows a pattern of removals totaling over 10 days in a school year, it’s considered a change of placement, and parents must be notified. After 10 days, the school must provide services to help the student continue their education. A manifestation determination must be conducted within 10 days to see if the behavior was related to the student’s disability. If it was, the IEP team must address the behavior and return the student to their original placement unless agreed otherwise. If not, the student can be disciplined like other students but must still receive educational services.

Also, schools must keep providing educational services to students with disabilities even if they are removed from their current school setting for disciplinary reasons. This helps the student keep making progress in their education. Parents and guardians have the right to join meetings about their child’s disciplinary actions and can ask for a due process hearing if they disagree with decisions. These safeguards ensure students with disabilities receive necessary support and fair treatment during disciplinary actions.

In special cases, such as carrying a weapon or using drugs at school, the student can be placed in an alternative setting for up to 45 days regardless of whether the behavior was related to the student’s disability.

Protections for Students Not Yet Eligible for Special Education

The procedural safeguards outline protections for students who have not yet been found eligible for special education but for whom the school should have known needed services. A school is considered to have this knowledge if a parent previously expressed concerns in writing, requested an evaluation, or if staff raised concerns about the student’s behavior to supervisory personnel. However, if the parent refused an evaluation or the child was evaluated and found ineligible, the school is not considered to have knowledge. In these cases, the student may be disciplined like other students, but if an evaluation is requested during this period, it must be expedited. If the student is found eligible, special education services must be provided.

Requirements for Placement in Private Schools

If parents believe the public school cannot provide FAPE and choose to place their child in a private school, there are steps to request reimbursement from the district. If the child previously received special education services, a court or administrative law judge (ALJ) may require the district to reimburse the cost of private school enrollment if it is determined that the district did not timely provide FAPE and that the private placement is appropriate, even if it does not meet state educational standards.

Reimbursement may be reduced or denied if the parent did not inform the IEP team of their rejection of the proposed placement during the most recent IEP meeting, failed to provide written notice to the district at least 10 business days before the removal, or did not make the child available for a district evaluation after prior written notice. However, reimbursement cannot be denied if the district prevented the notice or if the parent was unaware of their responsibility to provide it. The court or ALJ may also choose not to reduce reimbursement if the parents are not able to read or write in English, or if reducing or denying the reimbursement would cause serious emotional harm to the child.

This PAVE article, Navigating Special Education in Private School, explains the rights of students to receive equitable services in private schools, regardless of whether they are placed there by their parents or through an Individualized Education Program (IEP) decision.

Procedural Safeguards under Section 504

The procedural safeguards under Section 504 ensure that parents are informed of their rights before any evaluation or development of a 504 plan begins. These safeguards include the right to request a referral for evaluation, the formation of a 504 team to assess the student’s needs, and the requirement for parental consent before any evaluation or implementation of the plan. Parents must be provided with a copy of their rights at key points in the process. Additionally, the school must review and evaluate the 504 plan annually and re-evaluate the student’s eligibility at least every three years. Parents also have the right to file formal complaints if they believe the school is not following the 504 plan or if their child is experiencing discrimination or harassment. The Section 504 Notice of Parent Rights is available for download in multiple languages from OSPI.

Conclusion

Procedural safeguards are a requirement under the Individuals with Disabilities Education Act (IDEA) that ensure the rights of students with disabilities and their parents are protected throughout the special education process. By outlining the legal protections available, these safeguards empower parents to actively participate in their child’s educational planning and decision-making. Understanding these rights—from prior written notice and parental consent to confidentiality and dispute resolution—allows families to advocate effectively and collaborate with schools. Through adherence to these safeguards, schools and parents can work together to provide a Free Appropriate Public Education (FAPE) tailored to the unique needs of each child.

Additional Resources:

  • OSPI’s Special Education webpage includes information about data collection, dispute resolution, funding information, guidance for families, legal procedures, program improvement initiatives, resource libraries, and support for secondary transition services.
  • Special Education Parent & Community Liaison provides non-legal support by phone (360-725-6075) or through an online message portal, Ask OSPI web page.
  • PAVE provides direct support to parents and guardians, youth with disabilities, adult self-advocates, and professionals. Complete the Get Help request form to be connected with individualized information, resources, and training.

When Parents and Schools Disagree: Navigating Special Education Disputes

A Brief Overview:

  • If parents win a due process hearing or civil lawsuit, the school district might have to pay their attorneys’ fees. Conversely, if the complaint is deemed frivolous, parents might have to pay the school district’s fees.
  • Protections are in place for children not yet identified as needing special education if disciplinary actions are taken.
  • Every school district has a process for filing complaints related to harassment, intimidation, and bullying (HIB).
  • Complaints about discrimination involving students with disabilities can be filed with OSPI or the U.S. Department of Education’s Office for Civil Rights (OCR). OCR will not handle cases already being addressed by another agency or school process unless the process is completed and the complaint is filed within 60 days.

Full Article

The Individuals with Disabilities Education Act (IDEA) requires that each state education agency provide ways to solve disagreements between parents and schools regarding a student’s Individualized Education Program (IEP). These options ensure that parents and schools can work towards a mutually agreeable solution while protecting the child’s right to a Free Appropriate Public Education (FAPE). The Office of Superintendent of Public Instruction (OSPI) offers both informal and formal dispute resolution processes.

These dispute resolution options provide structured processes for addressing and resolving disagreements, ensuring that the rights of students with special needs are upheld and that they receive the education and services to which they are entitled.

Informal Dispute Resolution

IEP facilitation is a voluntary and informal process where parents and school districts can address their special education concerns with the assistance of a trained, neutral facilitator. This process allows both parties to resolve issues collaboratively without the formality of mediation, and it is provided at no cost. OSPI contracts with Sound Options Group to offer free facilitation services from facilitators skilled in conflict resolution to help clarify disputes, set agendas, and work towards mutually agreeable solutions. Participation in facilitation is entirely optional for both families and districts.

The IEP facilitation process starts when either a family or a school district contacts the Sound Options Group to request help. A parent can request facilitation by contacting Sound Options Group directly by phone at 800-692-2540 or 206-842-2298 (Seattle) to request a mediation session. For Washington State relay service, dial 800-833-6388 (TDD) or 800-833-6384 (voice). Sound Options Group gathers initial information about the student and the needs of both parties, confirming that both the family and district agree to proceed with a facilitated IEP meeting. Once the IEP team sets a date for the 3–4-hour meeting, the facilitator is assigned. The facilitator helps everyone prepare by sharing documents, setting a mutually agreeable agenda, confirming the meeting details, and preparing both parties for the meeting. After the facilitated IEP meeting, a case worker from Sound Options Group and the facilitator review the session and decide if another meeting is needed. A successful facilitated IEP meeting will result in the development of an IEP that is tailored to meet the unique needs of the student.

Another option for informal dispute resolution is Washington State Governor’s Office of the Education Ombuds (OEO), which helps parents and schools resolve disagreements about special education services. Acting as a neutral and independent guide, the OEO helps parents and educators understand special education regulations, facilitates problem-solving, and advises on communication strategies to support a team approach to a student’s education. The OEO does not provide legal advice, act as an attorney, conduct investigations, or advocate for any party. OEO can be contacted through their online intake form or by phone (1-866-297-2597) with language interpretation available.

Formal Dispute Resolution

When informal methods are unsuccessful, families and schools can turn to formal dispute resolution processes outlined in the procedural safeguards  and available through the special education system. A copy of the procedural safeguards notice for Washington is downloadable in multiple languages from the Office of Superintendent of Public Instruction (OSPI).

In Washington state, the formal dispute resolution options are:

1. Mediation

Mediation is a voluntary process provided at no cost to parents and schools. It is designed to resolve disputes related to the identification, evaluation, educational placement, and provision of FAPE. Both parties must agree to participate in mediation. Mediators are trained, impartial individuals knowledgeable about special education laws. OSPI contracts with Sound Options Group to provide trained, neutral mediators to facilitate effective communication and problem-solving between parents and school districts. This brochure, Mediation in Special Education, outlines the services provided by Sound Options Group. Discussions during mediation are confidential and cannot be used in due process hearings or civil proceedings. If an agreement is reached, it must be documented in writing and is legally binding. Parents can contact Sound Options Group directly to request mediation.

2. Special Education Complaint

Any individual or organization can file a special education complaint if they believe a school district or public agency has violated Part B of the Individuals with Disabilities Education Act (IDEA). Complaints must be filed within one year of the alleged violation. OSPI investigates the complaint, gathering information from both the parent or guardian and the school district. OSPI then issues a written decision addressing the complaint and any corrective actions required within 60 days of receiving the complaint. PAVE has developed this training video, Procedural Safeguards: How to File a Special Education Complaint, that walks through OSPI’s community complaint form with a pretend scenario.

3. Due Process Hearing

A due process hearing is a formal meeting to resolve disputes about a child’s identification, evaluation, placement, or FAPE. Either parents or the school district can request this hearing, but they must do so within two years of the issue, unless there was misrepresentation or withheld information. The request for a due process hearing must be in writing, signed, and include:

  • the name, address, and contact information of the student (even if homeless)
  • the name of the student’s school
  • the school district responsible for the IEP
  • a description of the issue, the facts, and related events
  • your proposed resolution

The original request must be provided to the other party – the parent or guardian must send it to the superintendent of the student’s school district, and the school district must provide the original to the parent or the guardian of the student. In addition, a copy of the request must be sent to the Office of Administrative Hearings by mail (PO Box 42489, Olympia, WA 98504-2489), fax (206-587-5135), or email (oah.ospi@oah.wa.gov). The party asking for a due process hearing must have proof that they gave their request to the other party.

Before the hearing, the school district must meet with the parents and relevant IEP team members within 15 days to try to resolve the issue at a resolution session. OSPI provides a direct to download form, Information and Forms on Resolution Sessions. During the hearing, both sides present evidence and witnesses. Parents have the right to bring a lawyer, present evidence, and question witnesses. An administrative law judge (ALJ) makes a decision, which can be appealed in state or federal court. The decision is final unless it is appealed and the decision is overturned. If an agreement is reached before the hearing, it must be written down in a settlement agreement.

For disputes about disciplinary actions that change a student’s placement, expedited due process hearings are available. These hearings happen faster than regular ones to resolve urgent issues quickly.

Dispute Resolution Outside of Special Education

If parents disagree with the decision made in a due process hearing, they have the right to file a civil lawsuit in state or federal court. This must be done within a specific time period, often 90 days, after the due process hearing decision. The court will review the administrative record, hear additional evidence if necessary, and make a ruling (decision) in the case. The civil lawsuit is not a part of the special education dispute resolution process and there are additional costs associated. Please note that PAVE is not a legal services agency and cannot provide legal advice or representation. Washington State Office of Administrative Hearings has compiled this Legal Assistance List for Special Education Due Process Disputes.

If parents win a due process hearing or lawsuit, the school district might have to pay their attorneys’ fees. But if the court decides the complaint was frivolous or filed for the wrong reasons, parents might have to pay the school district’s attorneys’ fees.

Additional Considerations

If a child hasn’t been identified as needing special education but parents think they should be, there are protections if the child faces disciplinary actions. If the school knew the child might need special education services before the behavior happened, they must follow special education disciplinary procedures.

Every school district has a process for filing a formal complaint related to harassment, intimidation and bullying (HIB). PAVE has compiled information and resources to address bullying in this article, Bullying at School: Resources and the Rights of Students with Special Needs.

Complaint Processes Related to Discrimination

OSPI’s Complaints and Concerns About Discrimination page states, “Each student must have equal access to public education without discrimination.” This page contains Discrimination Dispute Resolution Information Sheets that contain definitions of key terms, information about the role of district Civil Rights Compliance Coordinators, and instructions and requirements for filing different types of complaints, available for download in different languages. Anyone can file a complaint about discrimination involving students with disabilities in a Washington public school, which is prohibited by Washington law (RCW 28A.642.010). Formal discrimination complaints must be written, and the complaint must contain:

  • a description of the incident
  • why it is allegedly discriminatory
  • proposed corrective action the district or charter school can take

The formal discrimination complaint must be hand carried, mailed, faxed, or emailed to district superintendent, administrator of the charter school, or Civil Rights Coordinator. When a school district or charter school receives a complaint, it must investigate and respond within 30 days, unless an extension is agreed upon. The civil rights coordinator provides the complaint procedure and ensures a thorough investigation. If exceptional circumstances require more time, the school must notify the complainant in writing. The school can also resolve the complaint immediately if both parties agree. After the investigation, the school must respond in writing, summarizing the results, stating whether they complied with civil rights law, explaining appeal options, and detailing any corrective measures, which must be implemented within 30 days unless otherwise agreed.

Students with disabilities in public schools are also protected against discrimination by federal laws, including Section 504 of the Rehabilitation Act of 1973 and IDEA. The U.S. Department of Education’s Office for Civil Rights (OCR) accept complaints with overlapping civil rights concerns, such as racism and disability discrimination. An OCR complaint must be filed within 180 calendar days of the alleged discrimination. If the school district’s dispute resolution process is already handling the case through a means like what OCR would provide, OCR will not take on the case. Once the school district’s process is completed, individuals have 60 days to file their complaint with OCR, which will then decide whether to accept the result from the other process. OCR provides step-by-step instructions for filing a discrimination complaint.

Some families are anxious about questioning actions taken by the school. Parents have protections under the law. The Office for Civil Rights maintains specific guidelines that prohibit retaliation against people who assert their rights through a complaint process. 

Additional Resources:


What is a Medical Home?

Brief Overview 

  • A “medical home” is a coordinated care team with a coordinated care plan for an individual’s medical needs.   
  • Medical homes can be very useful any time an individual has more than one provider and more than one provider prescribing medications or treatments. They are not only for highly complex medical conditions. 
  • Medical homes have many advantages, but it’s important to select providers with the interest and qualities to make it work 
  • This article offers tips and questions to ask yourself and your family’s providers to help decide if your child or other family member needs a medical home. 

Medical Home: What is it? Does my child need one?  

A medical home creates a coordinated team and a coordinated care plan around all your child’s medical needs. When a family or youth works with a physician or clinic to build (create) a medical home they all work together to “wrap around” the different medical providers and services needed for that person’s best health and wellbeing.   

Medical homes don’t happen right away and don’t always look the same. Often a medical home is started and/or managed through a primary care or pediatric clinic, but if a person has complex medical needs, a specialist provider, practice, or clinic may be a useful “site” for the medical home. 

Medical complexity, or a diagnosis that affects multiple systems in the body or has the potential to be life-threatening, adds its own set of challenges to a medical home. A medical home for an individual who is considered medically complex often has multiple specialists as well as therapists, medication management, and other systems such as school or early intervention. A good medical home can be a communication hub that helps this large multi-disciplinary team stay on the same page and not work at cross purposes.  

No matter who provides coordination, a medical home supports your child and helps you as the parent or guardian with care coordination. Some families have medical homes “built” through a specialist’s office, some a primary care pediatrician, and others who are on Medicaid can have that coordination through a managed care patient care specialist.  

There doesn’t need to be medical complexity to start discussing a medical home with a child’s team; there just needs to be more than one provider working with the child/youth or young adult, and with different medications prescribed by different providers. A medical home helps everyone be on the same page and you as a family to be part of the overall care plan.  

When working with a provider to develop a medical home, remember that respect is a two-way street. Working with complex needs can be frustrating and scary and just because someone is a physician doesn’t mean they have all the answers.  

Ask questions and let your providers know when you don’t understand a decision or if you disagree with their decision. This can be done respectfully and can help build a strong line of communication.   

A medical home set up under this mutual respect with the family and patient at the center and as co-creators of care is at the heart of the medical home idea and an essential foundation for a medical home that works.   

When choosing a provider to help you create a medical home, here are questions to ask yourself:  

  1. Who is being valued and honored as the expert on the child or youth? Is it the family and the individual?  
  1. Is this team family and patient-centered?  
  1. Is there trust and respect that goes both ways?  
  1. Are Culture, race, language, and religion being honored?  
  1. Is an effort being made to understand not only the diagnosis but also its long-term impact on the patient and the family?   
  1. Are all an individual’s healthcare needs included in the care plan, including well-child and required immunizations?  
  1. Can you get help to find specialty care and community services when needed?  
  1. Do you feel supported in managing the care plan as a caregiver, family, or individual?  
  1. Is information provided to help understand choices and options in care, and is time set aside for discussion, with the family and/or patient being the person who decides?  

What other qualities are important when choosing a provider or practice to create a medical home? 

  • It’s helpful if your provider has at least some experience with the diagnosed condition. The relationship of the provider with a patient and their family can be just as important.  
  • Is the provider a good listener? Open communications are important so decisions are developed together, and the provider recognizes that the family and their youth/young adult are the experts in developing the young person’s care. 
  • If your child is a transitioning youth an important consideration may be a provider or clinic’s connection to adult care and their willingness to work with the youth rather than the adult caregiver in developing care plans. 
  • Does a provider work well with the other members of a child’s care team?  Are they willing to communicate and think proactively about sharing information? When a family with their child, youth, or young adult works with a provider in a medical home to make decisions together as a team, and information is shared with all members of the team, it provides a robust model for long-term working care plan development no matter who moves in and out of that family and individual’s medical home.  
  • A willingness to work with supports inside and outside the medical profession is also something to think about. A physician that is willing to work with a school and advocate for the child’s needs in a school environment goes a long way in setting up a strong IEP or 504 education plan.  

Additional advantages to consider taking time to work with a provider to develop a medical home:  

  • It can help in the early identification of additional healthcare needs or potential complications, creating a proactive approach  
  • Provides consistent, ongoing primary care   
  • Continuing coordination with a broad range of other specialty services  
  • Medical home team’s support can help in finding more medical services when needed  
  • More cost-effective care overall  
  • A child or youth’s doctors will get to know their needs and individual circumstances better  
  • The integrated partnership approach creates better healthcare outcomes  
  • Information is easier to share across the different providers, with therapists, schools, and the patient and families themselves  
  • Strong relationship building is emphasized in care  
  • Fewer visits to the emergency room and hospital when problems are found more quickly  

Family can be a constant in many children’s lives. They know the history of the child and they will be there in the future.  

Bringing a trusted medical provider into that circle to help with medical coordination and care can increase a family’s ability to look beyond the need to juggle the many issues of caring for a child with special healthcare needs.  

A medical home can spread the burden of coordination and decision-making between many hands and can keep everyone on the same page. This alone can be worth the extra work that you may face in the beginning.  

Resources  

Here are some useful online resources for creating and using a medical home: 

American Academy of Pediatrics  

Washington State Medical Home  

Related  

Tips to Organize Your Child’s Medical and School Documents 

  

Ages 3-5 Transition Toolkit

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Ages 3-5 Transition Toolkit

A Guide to Washington Services for 3-5 Year Olds with Disabilities


New parents have a lot to manage. Concern about whether a child’s growth and development are on track can be confusing. This toolkit provides places to begin if caregivers suspect that a baby or young child may need services due to a developmental delay or disability.

Presenting our newest resource – the 3-5 Transition Toolkit – A guide to Washington services for 3-5 year olds with disabilities. This toolkit encompasses a collection of our informative articles, complemented by sample letters to provide you with a solid foundation as you navigate through this crucial transition period.

Toolkit now available in Russian, Vietnamese and Spanish!

A user – friendly toolkit for families, Each section is detailed below:

Early Learning Articles:


Where to Begin When A Student Needs Help

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Where to Begin When A Student Needs Help

A toolkit to guide you through the special education process in Washington State


When a student has unmet needs and may need new or different school-based services, figuring out what to do next can feel confusing or overwhelming. PAVE provides this toolkit to support families in taking initial, critical steps. These guidelines apply regardless of where school happens.

Presenting our newest resource – the Where To Begin When a Student Needs Help.  This user-friendly toolkit has been created to give you and your family the guidance you need when you are navigating the special education process in Washington State.

A user – friendly toolkit for families, Each section is detailed below:

Where to Start Articles:


Planning my Path – A User-Friendly Toolkit for Young Adults

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Planning My Path

Practical Tips and Tools for Future Planning


Presenting our newest resource – the Planning My Path Practical Tips and Tools for Future Planning. This toolkit encompasses a collection of our informative articles, complemented by easy to understand timeline charts to provide you with a solid foundation as you navigate through this crucial transition period.

A user – friendly toolkit for young adults, Each section is detailed below:

Articles to help Young Adults: