Month: May 2025

  • Simple Tips That Will Help Your Neurodivergent Child Enjoy Family Events

    Simple Tips That Will Help Your Neurodivergent Child Enjoy Family Events

    Family Events Shouldn’t Feel Like a Trade-Off

    Do large family events trigger your neurodivergent child? Do you decline attending or even hosting because the exchange of extended family time for a meltdown is an exchange not worth making?

    Not to be dramatic, but after 16 years of parenting an autistic child, we’ve cracked the code to making family events tolerable for everyone.

    On the left side, the Experiential Life logo—a round icon with coral, teal, and navy waves—appears above black text that reads: “CRACKING THE CODE TO FAMILY EVENTS. 16 years in – and yes, hosting parties can be enjoyable again. 5 simple tips to help your autistic child feel safe, seen, and prepared.” At the bottom is the website URL: www.Experiential-Life.com. On the right side of the image is a photo of A, my oldest son, in the middle is C, my autistic son, smiling with his arms outstretched, and on the right is O, my middle son. Behind them is a colorful birthday banner with streamers and balloons hanging from it.

    When Family Events Just Feel Too Hard

    On Friday, my father-in-law turned 90 – And a 90th birthday requires a celebration. 

    But big parties, large events, and long stretches sitting at a table to eat are like kryptonite to C (my autistic teen). 

    For a long time, we just stopped going to and hosting family events. They triggered meltdowns. Well-meaning people inserting themselves with (un)helpful advice or offers to calm him down. None of which helped.

    It only made the meltdown worse – keeping us locked in a space no one wanted to be in any longer.

    We thought hosting would fix it. It didn’t.

    Then we started hosting parties. We could control the people, and C is comfortable in our space.

    And it worked better, but he still hated people touching his things, feeling forced to be present – at the table or in the family room – with ALL the people.

    Letting C Decide Changed Everything

    One holiday, as a family, we agreed C should join when he wanted, how he wanted – and that’s when everything changed for us.

    The Moment Everything Changed

    We spent so much time worrying about accommodating everyone else’s needs – we forgot that it’s our son who needs the most accommodations and support. 

    It sounds silly, looking back. 

    But that’s ableism at work…

    Ableism is when people treat someone unfairly or unkindly because they have a disability. 

    It’s when someone thinks a person isn’t as smart, strong, or important just because they move, talk, think, or learn differently.

    Everyday Examples of Ableism in Real Life

    It shows up in a lot of ways – some obvious, some subtle: 

    → Assuming someone isn’t smart or can’t understand just because they don’t speak. 

    → Making spaces, events, or services that don’t consider mobility, sensory, or communication needs. 

    → Praising someone for “overcoming” their disability instead of accepting them as they are. 

    → Acting like accommodations are “special treatment” instead of basic access. 

    → Designing rules, policies, or expectations based on what works best for non-disabled people and calling it “fair.”

    It wasn’t until we recognized our ableism, C’s sensory needs, and let go of our expectations, that we truly accommodated C.

    We had to let go of our desire to make other people feel comfortable.

    5 Things That Helped C Enjoy Family Events

    So… what changed? 

    Honestly? We stopped accommodating and trying to meet everyone else’s expectations and started focusing on what C needs. 

    – Not some Pinterest version of a perfect party. 

    – Not what makes Gungle feel like he’s bonding.

    – Not even what we were raised to believe family gatherings should look like. 

    To be clear: this didn’t happen overnight. It took trial and error, a few arguments, and a lot of tears.

    But once we stopped pushing C to participate in the way everyone else expected, everything started to shift. 

    This next part isn’t a magic fix. It’s just what’s worked for us over time – and it might give you a place to start.

    Here are 5 things that work for us:

    ✔️ We talk about the family event no less than 1 week before. We tell him who is coming, when they will arrive, what we plan to do, and what time we expect people to leave. 

    ✔️ We keep talking about the event throughout the week – sometimes he will come to us hours after we talk about it to ask questions. We know he needs time to process change and wants a bit of control over what the change will look like.

    ✔️ C doesn’t have to engage with the event or guests at all – unless he chooses to. This is his home, his room is off-limits to guests, but he gets to choose where he wants to be – and we work around that. 

    ✔️ He doesn’t have to eat with us. He has a routine around food and mealtimes. Parties and events disrupt the routine – he can choose to eat with us (sometimes he does), or he can choose to stick to his routine.

    ✔️ When everyone is leaving, he can choose to say goodbye, give hugs, or keep his distance. Once everyone has left, he gets as much time and space to decompress in his room (his safe space) as needed. We drop ALL expectations and demands. If he wants his normal bedtime routine, we do it – but if he needs to hide under the covers with the iPad until he falls asleep – that’s what he gets.

    It’s Hard, But You’re Not Alone

    It’s hard to feel disconnected from family and friends – and know that big, loud, crowded events can be a sensory nightmare for our neurodivergent kids. 

    It’s also hard to explain to family and friends why we parent the way we do – it is a low-demand and much softer approach to parenting. 

    But meltdowns and tears – plus missing our family and friends – led us to this approach. 

    If this sounds familiar, you’re not alone.

    How do you navigate family functions or parties with friends? 

    I’d love to hear how your family navigates events, parties, and/or holidays. Drop your go-to strategies in the comments below. 

    And if this helped, send it to someone in your circle. Want more like this? Subscribe to get future tips, stories, and support from the Experiential Life community.

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    • From Sit-Ins to Spotlights: Protecting Disability Rights

      From Sit-Ins to Spotlights: Protecting Disability Rights

      Last weekend, my autistic son performed with 59 other kids (with and without disabilities) on an accessible stage, in front of nearly 1,000 community members. .

      My middle son (we call him O around here) sits on the left wearing his High School Musical t-shirt and shorts. C, my autistic son sits in the middle, wearing a Hawaiian shirt and grey pants. I sit on the right, with a black blouse and hot pink pants. We are sitting on the stage, with the East High School logo and mascot behind us - the same one from High School Musical.
      My middle son (who we call "O" around here) sits on the left with C, my autistic teen, in the middle, and I am on the right. We are sitting on the stage right before closing night.

      No one left the theater without shedding a tear. 

      That moment exists because in April, 47 years ago, disabled advocates occupied a federal building for 26 days. Their protest led to Section 504 – the first major disability civil rights law in the U.S.

      Because of their advocacy, my son has a place to belong. But this legacy is being tested again.

      Two Supreme Court cases could change how disability rights are defined, enforced, and protected. One questions who gets coverage under Section 504. The other could make it harder for families to fight discrimination in schools.

      Disability rights. Community living. Inclusion. Public access.

      All possible – in part – because of the 504 Sit-In in 1977. That peaceful protest lasted 26 days, making it the longest nonviolent occupation of a federal building in U.S. history.

      It led to the enforcement of Section 504 of the Rehabilitation Act – the first federal civil rights protection for people with disabilities. It laid the groundwork for the ADA. It made clear that disabled people as citizens of the United States also “are endowed, by their Creator, with certain unalienable rights, that among these are life, liberty, and the pursuit of happiness.”

      But the last 100 days have shown these protections are fragile. And they’re being challenged in court again.

      On the left is an image of Judy Heumann - disability advocate - holding a sign that says, "No more negotiation - Sign 504." To the right is the caption, "They fought for our rights. Now it’s on us to protect them. What happens next could limit your neurodivergent child’s rights."

      A Stage Built on Advocacy

      C spent his childhood watching his brothers perform on stage. He LOVES the theater. He LOVES music.

      He wants to be on stage, he wants to perform.

      But finding an inclusive theater program is like finding a needle in a haystack.

      And then, the children’s theater company that we’ve been involved with for over a decade partnered with The Penguin Project – and C found his place – his purpose.

      He found friends and community.

       

      Being inclusive and accessible should not be radical – but it is

      Watching my autistic son perform on stage should not be radical – but it is.

      That moment was made possible by the disabled advocates and activists who came before us. Who sat for 26 days, so he and his friends could shine in the spotlight.

      Their fight led to ramps, accessible seats, inclusive programs, and anti-discrimination protections.

      And now, we fight to keep the protections in place.

      If you haven’t heard about these court cases yet, you’re not behind.

      The systems count on us being too buried in real life to notice.

      That’s exactly why I’m breaking it down here.

      Today’s Legal Threats to Section 504 and Disability Rights

      Two Supreme Court cases could reshape how Section 504 is understood and enforced.

      Texas v. Kennedy (formerly Texas v. Becerra)

      What is this case about?
      In 2024, a group of 17 states – led by Texas – sued the federal government to try to block new disability rights regulations. At first, they went as far as to argue that Section 504 of the Rehabilitation Act (the law that protects disabled people from discrimination) was unconstitutional.

      That part of the lawsuit has since been dropped.
      But the case is still moving forward, and it still matters – a lot.

      What’s still being challenged?
      The states are trying to block new 2024 rules from the U.S. Department of Health and Human Services (HHS) that strengthen disability rights. These rules reinforce:

      • The right to community-based services– so that disabled people can live, work, and learn in regular community settings, not be forced into institutions.
      •  
      • Protections for people with gender dysphoria– acknowledging that they may be protected under disability law.

      Why I and other advocates are watching this case:

      These rules reflect decades of advocacy – especially the landmark Olmstead v. L.C. decision, which said people with disabilities have a legal right to live in the most integrated setting possible.

      If the Supreme Court allows states to block these regulations:

      • 👉It could make it easier for states to limit or cut services that allow disabled people to live in the community.
      • 👉 It could send a message that federal protections can be weakened or ignored by states – especially around who qualifies for services.
      • 👉 It could have long-term effects on what services your neurodivergent child has access to now and into adulthood.
      •  

      Even though the states dropped the push to get rid of Section 504 itself, this case is still a serious threat to how that law works in real life.

      A.J.T. v. Osseo Area Schools

      What is this case about?
      This case comes from a family in Minnesota. Their child, A.J.T., has severe epilepsy and other disabilities. The family says the school repeatedly failed to provide safe and appropriate accommodations – including ignoring medical advice – which led to serious harm.

      The family sued under Section 504 and the Americans with Disabilities Act (ADA). But here’s the problem:
      In their region (the Eighth Circuit), families have to meet an extremely high legal standard to win a case like this.

      They must prove that the school acted with “bad faith or gross misjudgment” – not just that they failed, but that they basically intended to do harm.

      Why we’re watching this case:
      The Supreme Court heard oral arguments on April 28, 2025, and we’re waiting for a decision.

      If the Court upholds this harsh standard:

      • 👉 It would keep the burden on families to prove intent, not just harm – making it almost impossible to hold schools accountable.
      • 👉 It would allow schools to continue denying services or making unsafe decisions without consequences, as long as they claim it wasn’t intentional.
      •  

      But if the Court rules in favor of the family:

      • 👉 It could lower the standard nationwide, making it more fair and accessible for families to bring legitimate discrimination claims.
      • 👉 It could lead to more accountability and better protections for disabled kids in schools – including neurodivergent students whose needs are often minimized or dismissed.
      •  

      Justice Amy Coney Barrett and others questioned whether the current standard is too extreme – which is a hopeful sign.

      So... What Now?

      A graphic featuring the quote: “Progress isn’t inevitable. It’s made — and defended — by families like ours.” On the left is a black-and-white photo of the 504 Sit-In protest. On the right is a photo of my autistic son and middle son playing air guitar during a rehearsal.

      Like the advocates and activists that came before us – we need to organize – not panic. 

      We need to pay attention – because what’s happening in the courts right now could reshape how (or even if) our neurodivergent kids get support in school, in their community, or anywhere they deserve to belong.

      And, if you’re wondering what to do next without doomscrolling, here’s where to start:

      ✔️ Call your people. That means your reps – and if you live in one of the 17 states behind Texas v. Kennedy, your state attorney general too. 5calls.org makes it easy to find contact info. Ask why they’re challenging rules that protect disabled people’s right to live in the community.

      ✔️ Get in community. Share this blog with someone raising a disabled or neurodivergent kid. Then come join us inside the Experiential Life app – where we break down what’s happening in real time, unpack the impact without judgment, and remind each other we’re not alone in this.

      ✔️ Speak up. Even if your voice shakes. Even if you don’t have a law degree. Because community advocacy is legacy work — and our kids are watching.

      That stage my son stood on?
      It wasn’t a gift.
      It was won – through protest, policy, and persistence.

      What we do now decides what future kids inherit next.
      Let’s not hand them silence.

      Let’s protect what we’ve built.
      Let’s keep showing up.
      Let’s stay loud – and stay together.

      AND, if any of this resonates, please share this article with your network and subscribe to the newsletter to get instant access to future articles, weekly advocacy tips, exclusive event invites, and news you can use.

      Do you crave trustworthy information and resources to help you support your Neurodivergent child?

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