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Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 2 of 2

January 15, 2025

Have you ever been told you're wrong about your child’s needs, only to trust your gut and be proven right?

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Tags cvi, cortical visual impairment
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Seeing the Unseen: Navigating CVI and the Power of Being Heard - Part 1 of 2

January 8, 2025

What happens when a medical professional dismisses your concerns about your child’s health? How do you move forward when you're made to feel like you're imagining things?

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Tags CVI, cortical visual impairment
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The Power of Accepting Help: A Farewell to Shawdiya

January 1, 2025

Have you ever struggled with the idea of asking for help--feeling like you need to power through alone? What if embracing help could transform your family’s well-being?

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Unlocked: Tess’s Midnight Adventure and the Lessons It Taught Us

December 25, 2024

Have you ever woken up in the middle of the night to a situation so surprising, it leaves you both laughing and shaking with relief?

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Turning the Tables: How to Face Evaluations and Advocate for Your Child

December 18, 2024

How do you handle evaluations when every question feels like a punch to the gut, and the evaluators hold all the power over your child's future?

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Burnout Busters: How Caregivers Can Find Energy and Connection Outside the Home

December 11, 2024

Feeling burned out as a caregiver? What if the simple act of leaving your house could be the key to restoring your energy and creating meaningful connections?

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Filling Your Bucket: Stress-Free Holidays for Rare Disease Families

December 4, 2024

Are the holidays leaving you feeling drained instead of joyful?

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Uncharted Territory: ADHD, Rare Disease, and the Struggles with Medication

November 27, 2024

What happens when your child with a rare disease reacts unpredictably to a medication meant to help them focus and thrive?

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Tags ADHD, attention, anxiety, medication
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Cha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting

November 20, 2024

What would you do if your child faced anxiety so intense it disrupts their daily life, paired with impulsivity and struggles with focus?

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Tags ADHD, anxiety, attention
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Breaking Through Isolation: Finding Connection as a Rare Disease Parent

November 13, 2024

Have you ever felt isolated, like no one around you understands the unique struggles you're facing? For parents of children with rare diseases, this feeling can be a daily reality.

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Refuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents

November 6, 2024

Ever feel like you’re running on empty, with no time to refuel? What if you could recharge without needing hours to yourself?

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Building Your Child's Dream Team: Navigating Therapies for Rare Diseases

October 30, 2024

Are you feeling overwhelmed by the countless therapies and appointments involved in caring for your child with a rare disease?

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Stronger Together: Aligning with Your Partner on the Rare Disease Journey

October 23, 2024

Are you and your partner truly aligned when it comes to supporting your child with a rare disease, or are you struggling to get on the same page?

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Tech Solutions for Easier Communication: Helping Your Neurodiverse Child Express and Self-Soothe

October 16, 2024

Have you ever struggled to find the right tech tools to help your neurodiverse child?

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Tags AAC, communication, augmentative and alternative communication, PECS
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Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2

October 9, 2024

Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze?

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Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 1 of 2

October 2, 2024

Ever found yourself dreading travel because of the unique challenges autism brings along? What if I told you 14 hacks could make your next trip a breeze?

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Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2

September 25, 2024

Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions?

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Tags diet, gastroenterology
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Unlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2

September 18, 2024

Have you ever wondered if a simple change in diet could dramatically improve your child’s cognitive function and overall health?

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From Stares to Support: Navigating Public Reactions and Guiding Loved Ones in Caring for Your Child

September 11, 2024

What do you do when people stare at your child with a rare disease? How can you turn that awkward moment into an opportunity for connection?

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Eight Tools to Get Organized and Run Your Household Better

September 4, 2024

Are you looking to get organized and level up your productivity?

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Start at the beginning.

I've been writing about Tess since February 2014.

If you want to read more about my life with Tess, head over to my personal blog, bobigelow.com, and start with the first post.


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