Raising a child with special needs
Welcome to this beautiful unexpected life of raising a child with special needs. You are here because you are caring for a child with special needs. You didn't plan for this life. No one plans for it. Everything changes, is disrupted, life becomes complicated with a child that has complex medical issues. In this site you will find useful information about caring for a child with special needs. I share my experience about my own daughter who lives with a severe and rare form of epilepsy, autism, obsessive compulsive disorder, intellectual and developmental disabilities. You are not alone - welcome to this very special club.
RareREFLECTION
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 confessionThe 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. |
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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.
be considered medical advice. Readers are encouraged to talk to their physician for health-related issues.