When Survival As A Caregiver Relies On Broken Systems
When Survival As A Caregiver Relies On Broken Systems
If your weekend went nothing like you hoped – if it was full of meltdowns, stress, or canceled plans – same.
I imagined baking cookies, decorating the tree, maybe driving around to look at lights before curling up on the couch for a holiday movie.
We even had tickets to see my middle son perform in the Nutcracker.
But that’s… not what happened.
We had snow on Friday, so Saturday’s performance was cancelled.
It was also my middle son’s birthday week, but with tech rehearsal, school, and work – he wasn’t home long enough to celebrate.
And C did not take any of it well.
Like, at all.
It was meltdown after meltdown.
And it was exhausting
My husband and I took turns – “tag, you’re it,” – trying to help C regulate when his nervous system was firing on all cylinders.
This, my friend, is why we need layers of support – not just strategies.
The Hidden Mental Load Caregivers Carry Every Day
I talk to families every single day who feel exactly like this – trying to survive the day they’re in, while feeling vaguely panicked about the things they might be missing for the future.
Planning for next week feels impossible.
Planning for adulthood? Out of reach.
If that sounds like you… lean in for a second.
You’re doing great.
You’re not failing your child.
You’re not behind – you’re overloaded.
Parenting is hard. Parenting a neurodivergent child in a changing, underfunded, politically volatile system is harder.
There’s no handbook, no roadmap, no checklist that fits your child exactly.
And even when you do use the tools, do the work, stay regulated, and prepare… life still happens.
Holidays still disrupt everything. Meltdowns still show up. Exhaustion still wins.
Neurodivergent Families Rely on Complex Systems of Support
And this is where it gets even more complicated.
Families like ours rely on a network of supports that should be working with us:
✔️ Schools providing accommodations and services
✔️ Funding to cover therapies, tutors, programs, and respite
✔️ Medical professionals and specialists for co-occurring conditions
✔️ Government-funded programs that allow disabled adults to live with autonomy and dignity
But this year?
Everything feels like it’s shifting, and not for the better.
Here’s why parents are feeling a level of fear, confusion, and overwhelm that’s bigger than the holidays:
● Dismantling the Department of Education
● Medicaid funding cuts + proposed changes to eligibility
● Attacks on Section 504 of the Rehabilitation Act
● Public figures using slurs to describe disabled people
● Calling neurodivergent people “threats to the American way of life”
If it feels impossible to stay informed… it’s because it is.
Staying Informed Without Burning Out
You shouldn’t have to be a policy expert or stay up until 1am Googling terms you’ve never heard of just to keep your kid safe.
That’s why connection to trusted disability advocacy spaces matters.
Here are a few I rely on for accurate updates:
→ 5calls
→ KFF (Kaiser Family Foundation)
→ The Arc of the United States
→ ASAN (Autistic Self-Advocacy Network)
→ National Down Syndrome Congress
They help cut through the noise – and keep families informed without doomscrolling.
A Supportive Community for Overwhelmed Families Raising Neurodivergent Children
This is also why I created Experiential Life.
Because when families feel like they’re failing, it’s almost always a reflection of the system failing them – not their parenting.
Because you don’t know what you don’t know.
And you can’t find information about something you don’t know exists.
Experiential Life was built to be the shortcut:
📲 Accurate, timely, relevant information
👩💻 Monthly expert calls you don’t have to chase down information
📋 Downloadable scripts and guides
💬 A private community of parents who get it
A place to land when everything feels like too much
If this feels like where you are right now – there’s room for you inside.
You don’t have to plan everything today.
But you can join the place that will have it ready when you are.
And for the month of December, I have a gift for you:
Use code CHEER25 for 30 days FREE + $10 off your monthly membership, for as long as you stay a member.
It’s support you’ll actually use – for less than a co-pay a month.
AND, if any of this resonates, please share this 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.