Sunday, 22 May 2011
I think every set of parents have their own terms for what goes on with their children with Autism. We have lots of them, but the two most important ones are Away and Awakening.
"awakening"= these are times when he is connected, communicating, engaged and literally just bursting with thoughts, ideas, feelings and conversation. This is when we are euphorically happy.
"away" = this is when he seems withdrawn and inside himself. I think lots of things bring these on but I'll save that for another post: THIS SUCKS !! This feels a lot like having your child kidnapped. You see them, touch them, kiss them, but they aren't there. You know this and you pretend they are because you have to and because in you heart you know they are they just don't look like it. These can go on for months. He self stimulates constantly by snapping his hands, flapping and rambling dialogues from movies, TV, commercials, star fall, lessons etc. When he's away we get brief moments of "awakening" but they are fleeting and brief. When he's having an "awakening" the "away" times are fleeting and brief. This last round we added anger to his repetoir and this was new and SUCKED extra hard.
Recently I took the kids to my father's and then camping during spring break. Our spring breaks have always been a bit monumental and usually just me and them. Aidan was "away"... it was emotionally exhausting for me but I kept going. About halfway during our vacation... I broke down. This wasn't from one week, but from months of missing him. My daughter Ryan wanted to go on a helicopter ride and I was so overcome with pride at how she was spending her money on experiences vs. things and yet devastated that my son was "away". That morning Aidan was lashing out, angry and very "away". After months of dealing with his away time and smiling as I tried to cope, I broke down crying like a baby. I was camping in the woods with my two children trying to create lifelong memories and my son was gone and honestly I was so broken-hearted that I could barely move, but I did because that's what you do. We took that ride all three of us and I rambled on like I'm prone to ... look at that Aidan, isn't this fun, we're in a helicopter, we're flying over the ocean, look at Ryan in the front seat, isn't this amazing, can you see the people, we're in the sky, we're flying Aidan.. well, you get the idea. He said nothing. He stared off blank-faced and even got mad and hit me twice while in the sky. Looking at my gorgeous daughter sitting in the front seat marveling at the view and her smart thinking and really enjoying every second of that 3 minute ride. Inside I did NOT allow myself to wish Aidan could feel that too, because I'd lost it earlier and well, I couldn't do that again. The vacation went on without a hitch really. We swam in the ocean, we took walks, we found cool stuff on the beach and we saw the most amazing orange moon I'd ever seen in my life. All the while I did what I do, I ramble on like an idiot. Look at that moon Aidan, it's orange, who's ever seen an orange moon? I haven't... He didn't say anything and we kept going. It was an amazing time with them. Another memory-making spring break with my children that I'll remember and one they'll certainly never forget... at least I hope not.
So after we got home and back into our routines it happened.... an awakening. I felt like I'd waited a lifetime for this one. He'd been angry for months and it felt like years. I teetered on my sanity and those really close to me know when I'm like this and they hold me up with their love..honestly. My son started rattling on like he'd been gagged for months. He said these things to me and he continues to say them because he kept them in for a while and he enjoys reliving them:
Mommy did we go camping? Did we see an orange moon? Did we take a helicopter ride. Mommy I was in the helicopter with you and Ryan and Daddy? NOOOOOOO Daddy wasn't there. He was working. Did we sleep in the tent Mommy? WE DID. I slept with Mommy in the tent. Did we see UdderMomma and PapaLarry (my father and stepmother), did we eat at Wendy's with them? Mommy did we fly over the ocean? Did Ryan sit in the front Mommy? Well, you get the idea... Music to my ears and frankly all I need in the world to know that everything I do while he's "away" matters and he's there and as much as it hurts, he always come back stronger, smarter and improved.
So I ask myself... is he ever REALLY away? He's not... He's NOT !!