Raising a child with special needs

Allie, my daughter, lives with PCDH19 epilepsy and autism, and I invite you to join me on our journey of caring for a child with special needs - a journey that can be both beautiful and challenging. As a parent to a child with complex medical issues, I have firsthand experience of how overwhelming life can become. You are not alone, and together we are part of a special and supportive community. My writing focuses on parenting and caregiving for Allie. I am excited to announce my upcoming debut memoir:
DON’T SING HAPPY BIRTHDAY
A MOTHER’S JOURNEY THROUGH AUTISM AND EPILEPSY
​PLUS PARENTING STRATEGIES AND TIPS

Writing has become my therapy, and I feel incredibly lucky to have such a purpose. Thank you for taking the time to visit.

Rare

REFLECTION
RARE DISEASE

February 29 is Rare Disease Day. Not a day I celebrate honestly, but a day of awareness and reflection. My teenage daughter, Allie, was born with a rare genetic condition called PCDH19 epilepsy, which also includes autism, intellectual, and developmental delays.
Since Allie's first seizure at 16 months old, she has suffered thousands of seizures now in her 16th year. She has failed dozens of anti-seizure medications. She has been unsuccessful with medical marijuana treatments. In May 2016 had a vagus nerve stimulator implanted. And, tried various diet restrictions. After all of these efforts, I cannot report she is seizure-free. 
Fortunately, it's not all gloom and doom with this happy spirited teen because PCDH19 Epilepsy is not who my daughter is. Allie is so much more than a diagnosis. She is happy and living a full life. Whether it's skiing down double blacks in Breckenridge CO, swimming on the Special Olympic team with her friends or cleaning up parks with her brother with a trusty metal detector that nana bought; she is loved, she is happy and living her best life. 

what does the future hold? 

mom confession

The Grocery Store Worker That Gave Me Hope

Today I was checking out at my local grocery store. The young man bagging my groceries had special needs. He was very social with excellent eye contact as he asked me if I had any fun plans for the weekend. I smiled and said, “Yes. It should be a nice weekend to grill out.” I quickly asked him, “How about you? Do you have any plans?” He simply and politely said, “I plan to relax at home.” It was a perfect exchange of pleasantries from one to another. ​​

welcome

I'm Joni and I write about Allie, my
daughter living with
PCDH19 Epilepsy and autism
​and our journey. 
Writing is my therapy.
​What a beautiful purpose I have.
Thank you for visiting.
Content on this website and blog are for informational purposes only. Contents on this website should not
​be considered medical advice. Readers are encouraged to talk to their physician for health-related issues.