Research is my new Hobby

Something no one talks about when you become a special needs parent is the amount of reading, web surfing, library time, podcast listening, phone calling, and just good, old-fashioned research that slowly becomes your new hobby.

Every minute of downtime gets repurposed. Riding in the passenger seat, waiting in a line, waiting to pick-up a boy – I’m on my phone Googling.  Driving these boys around all of creation or getting ready for the day, I probably have podcast in my ears.  

And it’s not just research to desperately try to understand and support your child, but also research to desperately trying to convince yourself you’re not crazy.  

“8 year old won’t make eye contact”
“Child panics over simple requests”
“Can anxiety look like defiance?”
“Signs you’re overreacting as a parent”

You type in fragments of your fear and hope the internet spits back clarity.  Sometimes it does.  Sometimes it sends you spiraling.  Before there are official words, there are wide-open searches between you and Mr. Google.

→ Random phrases.
→ Disconnected observations.
→ Things you’ve noticed but can’t quite name.

Then the diagnoses come.  And suddenly you’re not searching in the dark anymore — you’re researching with purpose.  ADHD, Autism, Dyslexia, Dyscalculia, PDA.

You’re reading clinical definitions.
Watching webinars.
Comparing symptom lists.
Trying to understand what fits your child — and what doesn’t.

You’re learning the difference between:
• regulation and compliance
• meltdown and shutdown
• skill deficit and skill access

You become fluent in acronyms no one taught you.  IEP, SLP, OT, 504… And heaven help the professional who assumes you haven’t read up before that meeting.

Then there’s the care team research

Finding providers who are covered by insurance,  have availability before your child graduates high school, actually answer their phones, believe you, and can work alongside the other providers without ego.

That alone feels like earning an advanced degree.  You become the project manager of your child’s brain.

Coordinating.
Scheduling.
Following up.
Tracking data.
Remembering who said what and when.

And you do it quietly.

Then come the practical searches.

“How to stop panic attacks in kids.”
“Strategies for demand avoidance.”
“Best math programs for dyscalculia.”
“Autism friendly birthday party ideas.”
“How to help sibling of special needs child.”

Every new behavior, every new regression, every new school struggle.  Back to the search bar you go.

At some point, Google stops being your panic button and starts becoming your toolkit.  You stop searching to prove your gut and start searching to build your strategy.

You learn to filter. 
To verify.
To ask better questions.
To trust your gut alongside the data.

You realize you aren’t obsessive – you’re protective.  You aren’t dramatic – you’re informed.  And that shift?  That’s when things start to change.

🪙 Nickel from the Jar #1:
No one hands you a degree in parenting a special needs child. You earn it — one late-night search, one hard question, one brave appointment at a time.

So, if you’ve found yourself in a similar Google black hole, here are some resources I’ve found helpful. I do encourage you stay open-minded and verify the information you read before taking everything as Gospel, but these will definitely get you started.

If you’re where I was — late at night, trying to understand what all these words mean — here are a few places I’ve found helpful:

For understanding Autism & PDA:
PDA Society (UK) – clear explanations of the PDA profile
Autism Research Institute – broader autism resources
National Autistic Society (UK) – practical guides

Side note: Some of the most helpful information I found came from UK-based organizations, where the PDA profile is more formally recognized. While it isn’t currently a standalone diagnosis in the U.S., the framework helped me better understand my child.

For ADHD:
CHADD (Children and Adults with ADHD) – evidence-based info
ADDitude Magazine – real-life strategies (take what fits, leave the rest) – there’s also an app!

For Dyslexia & Dyscalculia:
International Dyslexia Association
Understood.org – great plain-language breakdowns

Other Miscellaneous Resources:
Dr. Mona Delahooke (Beyond Behaviors)
Polyvagal Theory resources by Dr. Stephen Porges
The Explosive Child by Dr. Ross Greene
Forever Boy: A Mother’s Memoir of Autism and Finding Joy, by Kate Swenson
Autism Out Loud: Life with a Child on the Spectrum, from Diagnosis to Young Adulthood, by ASD mothers Adrian Wood, Carrie Carriello, and Kate Swenson

🪙 Nickel from the Jar #2:
Google is loud. Not all information deserves your nervous system. Start with sources that leave you feeling informed — not afraid.

Susan