Thursday, November 12, 2009

Reality Hits Home....

Trevor has been wearing pull-ups at night since he potty trained. I had thought maybe we could stop using them, but the medication he is on tends to make him constipated which puts pressure on his bladder, and then add in the fact the one medication is to help him sleep, sometimes he doesn't even realize he's gone in his sleep. So right now we have no diapers in the house for him, and the night before last he had wet the bed twice. I stripped his bed, but last night he didn't want me to put a sheet on the bed - so all that was on the bed was the vinyl mattress cover. I felt bad letting him sleep like that, but there are just some things I refuse to fight over, and that was one of them.

So last night, he woke up again having wet the bed, and Karl went in and helped him out. Karl got back into bed after and said he felt awful and when I questioned what he meant, he said in regards to Trevor sleeping like that - no sheet on his bed and his room a mess (another battle I fight with him on almost daily). And I said I know but this what he likes in terms of the no sheet. I got up to go to the bathroom and came back to bed and heard what I thought was crying....sure enough, my tough guy husband, was crying. I asked what was wrong and it all came spilling out. The reality of what Trevor has and who Trevor is has finally really hit home. Before I knew it we were both crying our eyes out...Vicky who was in bed with us, still awake, gave me a big hug and attempted to dry my eyes.

We talked for quite some time....we have all these unanswered questions....why did this have to happen to him? when did it actually happen? granted we saw changes in him along the way but what/when was the defining moment?

I finally came out and admitted to Karl that I miss the Trevor I once knew. I know people have said over and over he's the same Trevor ....but for us he's not the same Trevor. He is most definitely not the child I gave birth to. He's not the happy-go-lucky, always smiling, always giggling, loving little guy I gave birth to. Somewhere along the way, that lil guy was taken from us and replaced with a little boy who avoids eye contact as much as possible, who hates being hugged and kisses, who is angry/sad more than happy, who rages over seemingly nothing, who flaps his arms/hands when stressed, who can't handle crowds or loud noises, whose interests are so narrow, etc. The truth of the matter is, I am mourning the loss of "our" Trevor. When I tell you I miss that boy till my heart hurts and feels like it will explode, I mean it - I can't put it into words any clearer than that. I long to have that little boy back. I want the little boy back who would look into my eyes and tell me he loved me ...who would kiss me a million times and then once more....instead of the little boy who now tells me he hates me on a daily basis...who spits at me....who wishes I were dead....who wants a new mom.

I love my children to the moon and back...I'd step in front of a train for them...take a bullet for them...I'd go to the ends of the earth to protect them....but the honest truth is, I sometimes don't like the child Trevor has become. Some days I feel like I am living with a stranger.

I am left wondering what will become of Victoria....will there be a day when something just changes, just like it did with Trevor, and we will have lost her as well?! I don't know as though I can handle loosing another one of my children to Autism (Asperger's). I am just so scared that Victoria will end up having it as well.

I wish I could go back in time and push the doctors who blew me off in a way when I voiced my concerns about Trevor and his behavior. I was a new mom who didn't know anything about anything when it came down to it, but his behaviors just didn't seem right to me. Why, oh why didn't I pursue it? Why didn't I insist something be done? Why didn't I go with my gut? No one wants to know there is anything wrong with their child, but at the same time, who wants to turn a blind eye to it either and pretend the issues aren't there? Looking back there were so many signs that just were brushed off or explained away....the walking on his tippy toes ALL THE TIME....the repetitive movements...the fixation on vacuums....the arm flapping...the sensory issues with clothing and noise....the banging his head on the floor when upset....just some of the things that struck me as odd but no one including Karl wanted to entertain the idea that I could be on to something.

Of course, Karl now regrets brushing my concerns off, but like myself, he was a first time dad, with much less experience than I had with children and he just didn't want to think anything could be wrong with our Trevor.

I sat yesterday afternoon looking at pictures from Trevor's second year of life and I cried...I miss that boy so much...pictures that show his incredible blue eyes so full of life and silliness....a smile that could light up a room....he was just such a different child before all of it started....

We are trying to do the best we can navigating the world of Aspergers, and I'll be the first to admit we have a lot to learn, and I'd like to think in time things will be easier or at least easier to come to terms with, but right now we mourn for our first born while we come to accept our "new" son.

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