If you’re raising a child with cerebral palsy, epilepsy, or Down syndrome, you’re probably already living a reality many people wouldn’t understand:
- navigating therapy schedules, medical appointments (like EEGs!), and medication;
- advocating for inclusion and accommodations at IEP meetings;
- overcoming stigma, stereotypes, and misconceptions (even from providers?!);
- juggling overlapping needs like support with mobility, communication, behavior, and learning — especially since these conditions can co-occur with other disabilities;
- and the emotional rollercoaster that comes with it all.
This week, we’re digging into what these diagnoses really mean for your child’s day-to-day — from navigating safety and independence to making sure your kid isn’t just protected, but thriving in a world that doesn’t always know how to show up for them. Whether the diagnosis is brand new or something you’ve been navigating for years, we’ve got insights from experts and real-world tips from parents who get it.
Epilepsy resources for parents
“Oftentimes there’s a lot of stigma [with epilepsy] which arises from fear. People don’t really understand what epilepsy is and it scares them to think, ‘My friend might have a seizure in front of me,’ or, ‘The person I’m babysitting may have a seizure in front of me.’ It’s really important that people have those open and honest discussions, and that people really feel empowered on how to manage seizures and what to do if somebody has a seizure… It’s really important for persons with epilepsy to be part of class trips, sports activities — things like that. They can’t be living in a bubble.” — Elaine Wirrell, MD, pediatric epileptologist and co-editor-in-chief of Epilepsy.com
Find more in our articles:
- Epilepsy 101
- Supporting a Child with Epilepsy at Home, at School, and in the Community
If you’re more of an auditory learner, or just a parent on-the-go, catch the bite-sized, AI-powered podcast here!
Cerebral palsy resources for parents
“A lot of people still talk to [my son] like he’s a baby. People can’t figure out how to be around him and talk to him. And I think that goes for a lot of people with disabilities. The world just doesn’t really know what to do or how to talk to them. But he’s highly intelligent. He’s hilarious. He’s so brave. He is the hardest worker. He never gives up. And I think it’s really important to teach that to these kids, too.” — Lelah Coppedge, RN, whose son Jack has CP
Find more in our articles:
- Cerebral Palsy (CP) 101
- Supporting a Child with Cerebral Palsy at Home, at School, and in the Community
- Common Cerebral Palsy Therapies and Specialists
Down syndrome resources for parents
“We should be educating families on their rights to question cognitive testing — what instruments were used and whether the results are in fact valid measurements based on their child’s disability. We should be educating parents on understanding their rights as far as receiving a full, comprehensive overview of the report such that they fully understand their child strengths and weaknesses, and then we need to assist parents in using that information to ensure their child’s IEP is comprehensive and written to their child’s strengths and to support their areas of need.” — Dr. Sarah Pelangka, special education advocate and owner of KnowIEPs
Find more in our articles:
- Down Syndrome 101
- Supporting a Child with Down Syndrome at School
- Common Down Syndrome Therapies and Specialists
- Teaching a Child With Down Syndrome to Read
Undivided Updates
California
- Unfortunately, the $22.5 million in cuts (for 2025-26 and $45.5 million in ongoing cuts) to the Self-Determination Program are still in the California budget, and the legislature is working on a bill to finalize language about new restrictions for SDP.
- What can you do?→ Now’s the time to email your Assemblymember and share how SDP has helped your family, especially the ability of SDP to address your child’s unmet needs. Get more details about these updates in our article on California budget proposals.
Federal
- On June 16, the Senate voted to approve their version of the One Big Beautiful Bill, which includes steeper cuts to Medicaid than the House bill. Next, there will be a joint committee of both houses to resolve the differences.
- What can you do?→ There are more meetings before this is a done deal, so please write to your representatives. The administration is aiming to sign the final bill on July 4.
Some good news for disability rights
- A June 12 Supreme Court decision will make it easier for families to use the Americans with Disabilities Act to protect children’s equality of opportunity in education. See details in our article here under the section “A. J. T. v. Osseo Area Schools.”
Catch the event recap
Whether you missed our live conversation with Denise Marshall, CEO of the Council of Parent Attorneys and Advocates (COPAA) about how federal proposals could affect our kids, or you’re looking for a refresher on the key points, check out the event recap and replay video here. Our main takeaway: the proposed changes are not set in stone yet. The federal budget needs to be decided by September 30, so there’s still time to make a difference for our kids. Marshall says, “Tell your Senators no, do not pass this budget. It’s already passed the House, but just in case there’s future activity there, depending on what happens in the Senate and with the reconciliation, tell all your elected officials. Our kids’ lives are too important.”
Join us for expert office hours
Do you have questions about funding your child’s medical needs through Regional Center, Medi-Cal, IHSS, and other public benefits in California? Join us on Wednesday, June 25 at 12:00 p.m. PT for expert office hours with Undivided Public Benefits Specialist Lisa Concoff Kronbeck. Lisa will be available to answer your questions directly on Zoom. If you’re not an Undivided member yet, get started here to join us for office hours every week.
Catch an Undivided Conversation
Tune into our Facebook page this weekend to catch the re-streams of these Undivided Conversations:
- Saturday, June 20 at 10:00 a.m. PT → Found out your child has Down syndrome? Congratulations! Catch Karen Cull, Undivided’s writer and content specialist, in this re-stream with Nancy Litteken, executive director at Club 21 Learning and Resource Center, and Emily Mondschein, executive director at GiGi’s Playhouse Buffalo, on how to best support your child and yourself during this journey.
- Sunday, June 21 at 10:00 a.m. PT→ Epilepsy Basics: Diagnosis, Support, and School Services. We cover the basics — what epilepsy is, how it’s diagnosed, and what it can look like in day-to-day life. We also dive into how epilepsy may affect learning, behavior, and access to school services like IEPs or 504 plans.
One of our parent members told us, “When we first learned about my son’s diagnosis, we felt overwhelmed and isolated. It was hard to find people who truly understood our daily unique challenges. From the moment we became members of Undivided, everything changed. The first meeting we attended felt like a breath of fresh air. Through Undivided, we learned about various therapies, resources, and educational programs we hadn’t considered before. Undivided has provided us with not only support and resources but also a sense of belonging. It has truly made a positive impact on our daily lives, giving us hope and confidence in our journey as a family.”
How do you record potential seizure episodes to help your doctor provide prompt testing and treatment? Hear expert tips from Dr. Elaine Wirrell on our YouTube channel→
Thank you to members of our parent community who are sharing upcoming webinars, workshops, and local events! Join the discussion in our private Facebook group→
Did you see the breaking news about the Supreme Court’s decision that will affect disability discrimination claims? It’s a major win! Check it out on our Instagram→
Help us spread the word about pending legislation updates and other resources that affect families raising kids with disabilities! Connect with Undivided on LinkedIn→