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
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?
Read MoreFilling Your Bucket: Stress-Free Holidays for Rare Disease Families
Are the holidays leaving you feeling drained instead of joyful?
Read MoreUncharted Territory: ADHD, Rare Disease, and the Struggles with Medication
What happens when your child with a rare disease reacts unpredictably to a medication meant to help them focus and thrive?
Read MoreCha Cha Moments: Navigating Anxiety, Impulsivity, and Focus Challenges in Rare Disease Parenting
What would you do if your child faced anxiety so intense it disrupts their daily life, paired with impulsivity and struggles with focus?
Read MoreBreaking Through Isolation: Finding Connection as a Rare Disease Parent
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.
Read MoreRefuel to Be Stronger: Quick Self-Care Hacks for Busy Rare Disease Parents
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
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
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
Have you ever struggled to find the right tech tools to help your neurodiverse child?
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Traveling with Autism: 14 Essential Hacks for a Smoother Journey - Part 2 of 2
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
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?
Read MoreUnlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 2 of 2
Have you ever wondered how the right diet could drastically improve your child's health, especially if they're dealing with complex medical conditions?
Read MoreUnlocking Tess’s Potential: How a Simple Diet Change Transformed Her Health - Part 1 of 2
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
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
Are you looking to get organized and level up your productivity?
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Empowering the Neurotypical Sibling
Are you struggling to balance the needs of your neurotypical child while raising a sibling with a rare disease?
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Tess Goes to Camp
Quick update about Miss Tess and her adventures at summer camp.
Read MoreMedical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself -- Part 2 of 2
How could you change your mindset about taking your child with a rare disease to the doctor?
Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode is about your mindset--learning to trust yourself and others.
1. Enlist two types of co-pilots for visits to make sure you don't miss anything.
2. Trust yourself, since you know your child better than anyone.
3. Hear from Harvard-educated pediatrician Dr. Bell about the best ways to help your doctor help you.
Tune in now to gain these actionable tips to make the most of doctor visits!
Medical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself
Do you dread the exhausting ordeal of taking your child with a rare disease to the doctor?
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