Newly diagnosed and need answers?

When my son was diagnosed with Hemiplegia, I was very grateful to have Google! He was born not too long after Google took over as “THEE” search engine and pushed AOL and Yahoo to the side. It was on Google that I found the ultimate support resource for parents with hemiplegic kids. It’s called CHASA and this acronym stands for Children’s Hemiplegia and Stroke Association.

CHASA was started by a mom who needed support and answers after her daughter was diagnosed and there were no parent resources on the web or in the form of a non-profit association that could bring the awareness and support that children with hemiplegia required. This woman most likely didn’t realize years ago that she would be such an integral and important part to each and every newly diagnosed family that would find the help and answers they seek after diagnosis on CHASA. She is a powerhouse and I’m so grateful for all her hard work and dedication to CHASA and her daughter is graduating from college this year!

A few years ago, the CHASA support group transitioned from a List-Serve type forum and switched to Facebook which had a far greater reach and the amount of members joining our private CHASA groups surged. There are CHASA groups for different age levels, for homeschooling, for additional diagnosis like Epilepsy, regional groups for your closest metro, etc. Since my son’s diagnosis, we were just handed a diagnosis and that was about it. No doctor, not his neurologist or primary care doctor could tell me what to expect with my child. Some obvious things like possible speech impairment and delayed walking were addressed, but no mention of swallowing issues, sensory issues, sleeplessness, chronic constipation, highly susceptibility to respiratory infections, ADHD, and the multitude of complications that arise from traumatic brain injury. CHASA is where parents, new and veterans alike of the hemiplegia journey congregate and compare notes about chronic issues, suggested therapies, new inventions, recommend hospitals and doctors, or simply to vent about the grief and frustrations of parenting a special needs child. It is a magnificent and an all-encompassing resource for information and support and without CHASA, I would have been lost in this complicated journey that we embarked on to help our son rehabilitate from his massive stroke.

This summer will be the second time that we attend the CHASA national retreat which will be hosted in Kentucky this year. We attended in 2009 when my son was two, so he doesn’t remember it and is very excited to go spend a few days with kids just like him. I attended in 2009 in Alabama for my own piece of mind and I got to meet and attend presentations where former CHASA kids were now teens and adults and I knew my boy would be okay. The comfort and relief that retreat brought me was exactly what I needed at the time. This year we made it a priority to attend because my son is now 9 years old and his disabilities are more pronounced and making friends is very difficult for him. He is very shy, but I believe that around kids just like him, he will break the ice more easily and be himself. He is the sweetest kid, a goof ball, and super observant. You wouldn’t suspect that only half of his brain works, he’s a smart ass to boot!

Sadly, everyday CHASA welcomes a new family with yet another child who survived a stroke and are searching for comfort and help. I’m just glad that CHASA and its large group of parents are there to support all the new and existing families 24/7.

Please checkout CHASA on its website: www.chasa.org

On Facebook, search for “CHASA” or “Children’s Hemiplegia and Stroke Association”

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