Wednesday, June 30, 2010

False Hope

Hope is, by definition at, "the feeling that what is wanted can be had or that events will turn out for the best" - now you know where I get most of my information and you are also probably wondering where I am going with all of this. Sometimes, I might question if I have true or false hope but I never question that it's mine and it belongs to me; I can't share it if it's not wanted and I don't have to give it up if I don't want to.

This whole wondering-about-hope business started when I got my 15 seconds of fame last Monday. Autism Speaks decided to publish on their official blog one of my blog entries entitled: "Autism Remission?" They chose to publish me, a regular mom with no official knowledge of pretty much anything, not an expert in any matter and a beginner at everything. There I was, being read by many, many people and getting judged by the good, the bad and the ugly. Hey, public humiliation has never been a problem for me, reason why I choose to write my thoughts on line instead of keeping an obscure journal somewhere in a drawer...besides, I don't even think anyone is reading it anyway! But, it's one thing to have the skin to go public and it's another one to be ripped apart by strangers...all 50+ of them, at the same time, on the same day! Sure, there were many thumbs ups, tons of positive comments but I couldn't get over all the negative noise my blog entry stirred. I was called gullible, mislead, misinformed but mostly, I heard complaints that my writing gave them "false hope." It only took me about 48 hours to process why were these people so insulted with my writing and with Autism Speaks for publishing me; all the while I kept on wondering exactly what is wrong with hoping? Autism Speaks is set out to find a cure for Autism and just this very word, "cure" is enough to ruffle the feathers of a lot of people...but why? because we are so afraid to hope, to really believe that there would be a day when there will be no Autism? what is so wrong with that?

Like I said in my blog entry, which by the way was not a "happy-go-lucky" one like most of my entries are, I honestly can't figure out what we did differently when working with Frankie's early intervention team. We did everything we were told to do and then some but mostly, we hoped. I hoped for the best and prepared for the worst. I hoped hard and long and I'm still hoping. I don't think I'll ever stop doing so....and I'm not sorry for this. I'm done apologizing for the hardships of other families in the spectrum and although I feel their pain, I'm done feeling ashamed because my child's story is different. Every child with ASD, PDD-NOS or Asperger's is unique and successful within their own frame of reference and it's not fair to compare notes - we can only compare hope.

Frankie is no longer ASD, he is PDD-NOS and yes, he is still in the Autism Spectrum. He is better off today than he was two years ago and today he's also worse off than he'll be two yeas from now. His recovery is real and ongoing. I owe nobody an apology for this. My blog is full of small wonders that kept me going through his treatment but it also has its moments of despair; I had to walk through very dark roads and the only thing I had to pull me through was the hope to find the light. If people feel that my struggle gives them hope I celebrate that and to the ones who feel offended by it, I say fight your own battles and inspire yourself, perhaps along the way you can inspire others too.

It's easier to destroy than to build and it's better to have false hope than no hope at all.

Tuesday, June 1, 2010

An emergency pillow and a tale of two brothers

Everyone needs an emergency pillow! I hope you have one because if you don't, what would you do in case of an emergency? Now, what kind of emergency would require an "emergency" pillow? well, in Frankie's own words, an "emergency" would be when your brother decides to visit your bed in the middle of the night but forgets to bring along his pillow...This is when an emergency pillow comes in handy! But the emergency pillow is not for your brother, it's for you...your brother gets your pillow because he is the guest at your bed and you get your handy-dandy-big orange pillow that always remains on the side of your bed just in case of an "emergency" - check!

Frankie understands, as well as a four-year-old is able to understand, how important it is for him to be there for his big brother. What he doesn't understand yet is that this bond will carry them in the future through the good times and the bad times, and an emergency pillow will come in different shapes as they grow up. It will become a place to stay; an ear to listen; a shoulder to lean on; a warm meal; a drink to celebrate or to grieve together; a word of advice. Victor knows that his job as a big brother is to protect and to guide Frankie but even a super-cool-big-brother like Victor needs a loving little brother like Frankie from time to time. There is nothing better in a dark, scary night than a little brother who always has a warm spot for you in his bed and who understands your fears without judging. Childhood memories and the magic they have doesn't have to wear off with the passing of the years because there will always be bad monsters, bad nights and dark times, no matter how old you are but there will always be big brothers and little brothers to face them together.

Good night and dream on...