Some conversations stay with you long after they're over. This is one of them.
Karen Mayer Cunningham sits down with Sarah Harter - mom, anesthetist, and one of the most devoted advocates her daughter Mia has ever had - to share a story that is honest, hard, and full of hope.
Mia was born five weeks early. For two years, Sarah brought her concerns to doctor after doctor - and was told she was being a worried first-time mom. She kept showing up anyway. At two years old, the MRI showed a brain tumor. Five months after a 17-hour surgery, Mia started school. And then another system had to be pushed before it showed up the way she needed.
But this is not a story about everything that went wrong. This is a story about a family who refused to stop believing in their daughter - and what happened because they didn't.
What Sarah and Karen talk about in this episode:
- What it really feels like to be dismissed for years - and to finally be told your instincts were right
- How Mia went from learning to walk again after surgery to dancing on a team when her neuropsych testing said she shouldn't be able to
- The difference between maintenance therapy and intensive therapy - and why it changed Mia's entire trajectory
- What the school got wrong about Least Restrictive Environment - and what the family quietly, persistently did about it
- MNRI (Masgutova method), vision therapy, NUCCA, and approaches that helped when standard care had gone as far as it could go
- What families of medically complex children are almost never told about related services at private schools and homeschool
- Lighthouse Family Retreat - why Sarah's family went from being served to going back every year to volunteer
- American Printing House for the Blind, free lifetime audiobooks for children with disabilities, and resources most families never find out about
- How to love and support a family walking through something hard - even when you don't know what to say
CHAPTERS:
0:00 Welcome - Karen Mayer Cunningham with Sarah Harter
1:30 Mia Is Born Five Weeks Early
3:00 Two Years of Trusting Her Gut
5:00 The MRI - What the Scan Showed
7:00 The Diagnosis - Learning to Breathe Again
9:00 The 17-Hour Surgery
11:00 Starting School Five Months Later
13:00 What the School Recommended - and Why It Wasn't Right for Mia
15:00 Voluntold - When You Are Given One Option and Called It a Choice
17:00 Moving to Private School - What They Didn't Know About Services
19:00 Maintenance Therapy vs Intensive Therapy - Why the Difference Matters
22:00 Neuroplasticity - How Mia Learned to Walk Again and Then Dance
24:00 Vision Therapy - Three Years to Regain Eye Fusion
27:00 MNRI and the Masgutova Method
30:00 When Your Community Gets Smaller - And Richer
33:00 Lighthouse Family Retreat
36:00 American Printing House for the Blind and AFB Resources
38:00 Free Audiobooks for Life for Children with Disabilities
40:00 Do What Is Right for Your Child
42:00 When We Get It Right for the Child We Get It Right for Everyone
RESOURCES:
Lighthouse Family Retreat: https://lighthousefamilyretreat.org
American Printing House for the Blind: https://aph.org
American Federation for the Blind: https://afb.org
Book: The Boy Who Could Run But Not Walk
Special Education Academy: https://specialeducationacademy.com
Epic IEP Book Bundle: https://theepiciep.com
Email Karen's team: advocate@specialeducationacademy.com
Karen Mayer Cunningham is the Special Education Boss - advocate, trainer, and bestselling author of the Epic IEP book series. She trains everyone at the 504 and IEP table to navigate and negotiate successful student outcomes.
Subscribe and join Karen live every Monday at 8PM inside the Special Education Academy.
#SpecialEducation #MedicallyComplex #BrainTumorSurvivor
Karen Mayer Cunningham sits down with Sarah Harter - mom, anesthetist, and one of the most devoted advocates her daughter Mia has ever had - to share a story that is honest, hard, and full of hope.
Mia was born five weeks early. For two years, Sarah brought her concerns to doctor after doctor - and was told she was being a worried first-time mom. She kept showing up anyway. At two years old, the MRI showed a brain tumor. Five months after a 17-hour surgery, Mia started school. And then another system had to be pushed before it showed up the way she needed.
But this is not a story about everything that went wrong. This is a story about a family who refused to stop believing in their daughter - and what happened because they didn't.
What Sarah and Karen talk about in this episode:
- What it really feels like to be dismissed for years - and to finally be told your instincts were right
- How Mia went from learning to walk again after surgery to dancing on a team when her neuropsych testing said she shouldn't be able to
- The difference between maintenance therapy and intensive therapy - and why it changed Mia's entire trajectory
- What the school got wrong about Least Restrictive Environment - and what the family quietly, persistently did about it
- MNRI (Masgutova method), vision therapy, NUCCA, and approaches that helped when standard care had gone as far as it could go
- What families of medically complex children are almost never told about related services at private schools and homeschool
- Lighthouse Family Retreat - why Sarah's family went from being served to going back every year to volunteer
- American Printing House for the Blind, free lifetime audiobooks for children with disabilities, and resources most families never find out about
- How to love and support a family walking through something hard - even when you don't know what to say
CHAPTERS:
0:00 Welcome - Karen Mayer Cunningham with Sarah Harter
1:30 Mia Is Born Five Weeks Early
3:00 Two Years of Trusting Her Gut
5:00 The MRI - What the Scan Showed
7:00 The Diagnosis - Learning to Breathe Again
9:00 The 17-Hour Surgery
11:00 Starting School Five Months Later
13:00 What the School Recommended - and Why It Wasn't Right for Mia
15:00 Voluntold - When You Are Given One Option and Called It a Choice
17:00 Moving to Private School - What They Didn't Know About Services
19:00 Maintenance Therapy vs Intensive Therapy - Why the Difference Matters
22:00 Neuroplasticity - How Mia Learned to Walk Again and Then Dance
24:00 Vision Therapy - Three Years to Regain Eye Fusion
27:00 MNRI and the Masgutova Method
30:00 When Your Community Gets Smaller - And Richer
33:00 Lighthouse Family Retreat
36:00 American Printing House for the Blind and AFB Resources
38:00 Free Audiobooks for Life for Children with Disabilities
40:00 Do What Is Right for Your Child
42:00 When We Get It Right for the Child We Get It Right for Everyone
RESOURCES:
Lighthouse Family Retreat: https://lighthousefamilyretreat.org
American Printing House for the Blind: https://aph.org
American Federation for the Blind: https://afb.org
Book: The Boy Who Could Run But Not Walk
Special Education Academy: https://specialeducationacademy.com
Epic IEP Book Bundle: https://theepiciep.com
Email Karen's team: advocate@specialeducationacademy.com
Karen Mayer Cunningham is the Special Education Boss - advocate, trainer, and bestselling author of the Epic IEP book series. She trains everyone at the 504 and IEP table to navigate and negotiate successful student outcomes.
Subscribe and join Karen live every Monday at 8PM inside the Special Education Academy.
#SpecialEducation #MedicallyComplex #BrainTumorSurvivor