Lifeline

Lifeline

I find it increasingly frustrating to hear from friends having a hard time getting information to help their children. Wouldn’t it be great to have a manual or FAQs packet of individualized data to help you help your child once you get an official diagnosis. The saying, “When you know one person with autism, you know one person.” I’m always hoping someone will add “…and…..” with more advice at the end of that sentence! What does that mean? Why can’t you tell me anything else? Where can I go to get help? Who should I trust? How long is this going to last?

Over the years of trying to find the right answers to lead me to the right path to walk with my son’s particular issues, I’ve read many publications and webpages on varying topics such as autism, mito diseases, vaccine injury, communication disorders, educational therapies and biomedical interventions. I always look for the most current scientific news, compare it with past trends and follow it up with reading blogs for a parents’ perspective. I haven’t found all the answers to help me understand everything that affects my son Ronan but I have gathered an incredible stack of books for my personal library, saved webpages to my favorites on my computer and kept business cards of professionals who I can call or email should concerns crop up.

With all the reading and asking I have done for Ronan, I have always offered to share what I learn with other local families. It’s through those that have walked before me that I learn where to research, who to trust, what to expect and how to manage all of the above. I’ve made it a point to pay it forward with telling our story so that others can learn and make their child’s life better. It saddens me to know that thousands have been affected before Ronan was part of the statistics. With the rates dropping, more will be part of his generation of sick children and I can’t sit still watching that happen.

My lifeline includes groups like Autism One, Generation Rescue, SafeMinds, Age of Autism, TACA, National Autism Association and now the UMDF and MitoAction as I search for more information on mitochondrial disease. Almost all of those groups are parent-founded and continue to be parent-run. I wouldn’t be where I am today without the families who have raised their voices and made a difference. I am also depend on the strength of the support groups that have opened their hand to hold mine as it trembles. Until I can all find the answers and the peace I need to feel while healing and helping Ronan, I will continue to depend on the brave parents a few steps ahead of me.