Thursday, September 13, 2012

Our piece of the puzzle...

(To everyone reading this who has been reading everything I write, always - I just wanted to point out that, this entry, is entirely public.)


The clock said 4:00 am... My little cat was snuggled up next to me, sleepily looking up at me - her ears a bit flattened to show her irritation with me... I had just sat straight up in bed... my heart racing - adrenaline chased the panic through my veins. "It’s alright..." I assured myself... "just a dream... no, a nightmare..."

Yet, I can’t help it. I stumble out of bed, and carefully down the stairs. I walk gently into my children’s room and spend a moment in time - a brief snapshot of life - just watching them breathe. I then take a moment and kiss each one of them on the forehead, and I lay my hand on each of their chests, only for a second... I feel the exhale... and then the inhale... and only then, can I carry myself back to bed. If only for a little while longer anyway...

What brought me to that moment? I had thrown myself awake - as I had lunged for my daughter. (In a dream - I don’t want to confuse you here!) We had been walking down a very busy nighttime street - walking "home" - but, it was not home... the closest I can describe it too, is as if we were in Soho (a part of New York City) - and somehow Jilly broke away from me. She was running... she was a bit younger than she is now... I called out her name, but she just kept running.... totally unaware of the dangers around her. I knew she could hear me. I knew she wanted to listen, yet she ran... and I chased... and then - there was a car. She was in the direct path of this car.... and I jumped for her... just as I wrapped my arms tightly around her, and put myself between her and this car... as the bumper and headlights of the car began to throw me into oblivion... I awoke. (To my annoyed cat, wondering what the hell was wrong with me...)

Why? Why have that dream now? Where is the message? She wasn’t listening - it wasn’t "normal." Ahhhh... that is why. Autism. Autism has been everywhere the past few days. From the news... to the articles that "this" or "that" well meaning friend is sending to me to be sure I have seen - (don’t stop, I want those!) To the bracelet I dug out of the depths of my drawer I am wearing around my wrist... Autism is permeating the air around me these days.

Good. It needs to be everywhere. 1 in 150 of our children will be diagnosed with Autism according to the current national averages. (10 years ago, it was 1 in 10,000 or so) Every 21 minutes another child is diagnosed with Autism. This year, more children will be diagnosed with Autism than with AIDS, Diabetes, and Cancer - combined. And yet - we know so very little about it...

Each case is so unique. No parents story will be the same... and yet - here we are, in all too many cases the sole advocates for our children... the front lines of the fastest growing epidemic in history. So, finally - finally a "Day" and a "Month" have been created to draw attention to this.

What is my story? I am not even sure where to start it - I am not sure it is a story I have ever fully "told" - it is of course, an ongoing story as well.

It began innocently enough.... my baby girl never slept well at night. Ever. We would come up with extravagant things, and ways to buy ourselves even a moment of silence at night... where she would be asleep, alone, in HER bed. Then, slowly, other things became apparent. She spoke - quite well - yet... repetitively. "Jilly, what did you do today?" You would ask her... and, the concept of a "question" would be lost on her. Instead, she would say "what did you do today?"

She always referred to herself in the third person... and then I realized - she never said "I love you." I have theories about why - she could not "see" it, so - logically the phrase made no sense to her - so then, why say it. Even with my horrible memory, I remember the first time she truly said it to me - she was 3 years, and 1 month old.

Her eye contact was also sporadic... you would not think she was not looking at you though. She had (and still does) this cute little head tilt thing she does - and when she does that - she is not looking into your eyes. She also would walk on her toes... there were a number of things that started to add up... and then, her little brother, who is 14 months younger than she is - began to catch up with her on a number of things. Verbally, and emotionally... so - it was not something that COULD be ignored any longer.

Things with raising her as she was little, had always seemed very HARD - but - to me, it was simply normal. I had no other children before her... I had nothing else to go by. No one told me it was not supposed to be that hard. And so, we pressed on.

Then... one day after a particular Christmas where my (then) husband’s brother had visited often over the course of about a month, my (then) husband came to me - his voice a bit agitated... (as if he was expecting my reaction to be defensive - because he himself had gotten defensive about it) and he said "do you KNOW what he said to me?? That, Jilly may have, signs of.. Autism!!!" The word came out of his mouth full of disbelief and frustration. Do you know what I did? I simply said: "I know." (This is a story for another blog, but, he had/has problems with actually giving anything I say any credence, and he always has to "verify" it somewhere else... that has irritated me for years.... anyway...) So - someone else had opened the door for me. His brother had brought it up to him - not me. He was willing to believe it... and I was able to hunt down the right doctors, and systems....

And so, it began.

And, here we are. When people see her now - people who saw her a year ago... or more - they are simply astonished by the difference in her. By how far she has come. And I see it - but I don’t see it like that I guess. The change has been gradual to me... and I am SO very proud of her. I never saw her as having it "that badly" - but now, with the early intervention programs we got her into - and one amazingly patient Chiropractor (who also doubles at this point, as an amazing friend) I see people react to her so differently. You really can not tell she is "Autistic" unless you catch her on a very bad day. And, apparently, a year or so ago, you could have. Amazing.

Sometimes I am asked - if I could, would I simply "cure" her. That is such a hard question for me. I know there are Autistic children who are very disabled by it... but Jilly is not. She is "high functioning" - and of course there are moments where my heart just wants to break in two. Yesterday she said two girls on her bus called her "annoying" - and she did not really understand it. She just wanted to talk to them... and that started her mood out badly when she stepped off the bus... and we had a very rough time for a bit there. And I hope that she continues to get better - so she does not deal with things like that often in life - children can be so cruel, this I know. But her "Autism" - it forces her to be rigidly logical in so many ways - and forces me to be creative to work through issues with her. I see the world through an entirely different set of eyes... and it is amazing. It is a gift. SHE is a gift.

We have come so far through this together... I don’t even realize just how far we have come... how hard a battle we have fought - until I really sit down, and think about it. And then I am just beside myself.

She is just, amazing.



Posted Date: : Apr 3, 2008 1:05 PM

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