Fighting for Another Day

January 20, 2014

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After fifteen months of suspicion and wondering, my daughter's neurologist gave me confirmation in the form of a written diagnosis: "Autism Spectrum Disorder, Encephalopathy.” The words echoed in my head throughout the day, and I still replay the moment from time to time. When I called to relay the news to my mom, I got a little tearful, but what I mostly felt was relief. Months and months of early childhood services yielded little to no results and caseworkers couldn't provide me with answers. Multiple self-administered checklists could only tell me "at risk." Now I had it solved! Right?

Wrong.

11630209174_fb48d02467_bLittle did I know that making the conscious and immediate decision to reject the fate bestowed upon her by the neurologist - basically that maybe, one day, she might talk - meant opening my world to include a vast array of overwhelming and absolutely foreign choices. Should I do biomed and, if so, which doctor? ABA or Floor Time or RDI or Son-Rise? What kind of testing should I get done first and who will order it? What about HBOT, homeopathy, chiropractic, essential oils, neurofeedback, muscle testing, hippotherapy?

I honestly knew little about how to approach her circumstances. All those countless hours spent worrying about a diagnosis without one thought given to treatment. But, I instinctively knew I COULD treat it and that she WOULD recover.

Suddenly, autism was my life. I bought stacks and stacks of books, joined groups and followed pages on Facebook.  I googled like it was my job. It wasn't until I stumbled upon an announcement for the upcoming AutismOne 2013 conference that I truly felt hopeful. Discovering that meant finding out that there were hundreds, maybe thousands, of others like me, plus doctors who supported the notion that the puzzle can be solved with a lot of faith and legwork. It also meant finding TACA. This invaluable resource was like a map to guide me. With no close friends in a similar situation, I leaned on information from the conference (as well as all the cool freebies), from books, and especially utilizing the website tacanow.org.

In the several months following the diagnosis, I would try numerous treatments and see many doctors and other practitioners. Not every provider gave satisfactory answers and not every treatment succeeded. But, I would always come back to my TACA guide looking for a fresh start.

I'm happy to say that now, nine months into treatment - with a few dietary and supplement tweaks - we are seeing glimpses of true promise and signs of recovery. Her language, once non-existent save for long bouts of screaming, has blossomed to include almost 25 word approximations and 35 signs. Her imagination has exploded and it turns out that she's quite the comedienne. The tantrums have decreased, but are still there to remind me to keep striving. Most importantly, through the process of investigating underlying conditions, I have uncovered so much vital information about her health, which helps me help her. We haven't yet crossed the finish line and we are early in our journey, but each milestone brings a second wind to push me further and keep me fighting for another day.

For more information on the TACA Autism Journey Guide, please click here.