Saturday, August 14, 2010

Mid Aug, 2010: Almost A Year

Hard to believe almost a year has passed since we received Marco's diagnosis. SO many emotions, thoughts and feelings made this past year interesting but challenging. Very challenging.
I've been asked which diagnosis was the most difficult for me, so sometimes I reflect on each of them. There is no easy answer to this question. I look at these diagnoses as part of who my kids are, even part of who Aaron and I are, because each one sent us on a road to self discovery we would otherwise never have travelled. But in no way do they DEFINE any of us. Marco and Annelies are kids; they enjoy their lives, have good days and bad days, quirks, sense of humor, favorite toys, foods and people like all children.
Annelies's diagnosis was like the proverbial thunderstorm out of a clear blue sky so to say. There was never a time we could really deny that she had Ds (I tried for a couple of hours on the day of her birth, but quickly got past that to allow me to deal with all that came with it).
I like to believe I am a realist, but with Marco I allowed myself to be in denial and postpone the appointment that eventually would lead to the diagnosis. I sometimes think: "Oh, if I had only done it sooner..." but then stop myself. I don't want to pave my road to the future with self-blame. A word on denial: I learned it takes too much energy to stay in denial too long. Denial plays a certain role in self-preservation though. When we allow the grief cycle to do its thing, there is a place for denial. I have since heard from friends who know people who have kids who show definite signs of Autism, but don't do anything about it. It can be possible to not do anything if the autism is mild, I guess. If Marco was born in the 70's there is a great chance he would have not gotten this diagnosis, and eventually would have been OK (if not a little different maybe, in behavior). But I think the feeling that 'something seems wrong' has to eat away at those people. I hope they find the strength to deal with it, for the sake of the child and themselves.
I hold dear the memories of both my childrens' births. I had one experience with Marco that I did not have with Annelies, that is a 'typical' birth and new-born experience. I thought Annelies's diagnosis was a punishment towards me, bad Karma (or whatever you want to call it) coming my way for something I did wrong. For a few moments (hours) I thought my life was over, that I would never be happy again. That life with Annelies would be a cross to bear. Of course I realized that this was not the case, but that she was (and is, in every way) such a blessing. Both kids are.
Overall, I think the Autism diagnosis was probably the scariest one for me. I feel that Autism can look so much like an 'invisible' thing that takes over a child. Behavior is distorted, and communication lines are broken (or not established), making it difficult or impossible for the child to tell parents what is wrong. I was also afraid of it 'getting worse'. What if we woke up one day and Marco was like Rainman? Or completely inable to comunicate? What if Marco freaks out in the supermarket and everyone will look at us and think I have no control over my kid? And probably my biggest fear: What if other kids look at him and wonder what the heck is wrong with him? Think he is different, weird? Many thoughts went through my head. But once Marco began his therapies, he also started to speak more and show so much improvement. His communication gets better every day, he for sure can tell us what he needs/wants. He is now used to having a little sister around who wants to get into EVERYTHING he does, and is dealing with that probably like any older brother (from what I hear from my friends). I am no longer afraid that his progress will halt, I know that he will continue to do well.
One note about my biggest fear: I am sure that kids notice Marco is different. But the ones who can see past this and still be his friends, will be his true friends. The ones who don't want to be with him because he may act different...well, Marco would probably not want them to be his friends anyway. I guess this will be the same for Annelies. Maybe that is one of the biggest gifts these diagnosis will give my kids. They will know who are their true friends.

1 comment:

  1. my first time reading your blog, my friend. Wow, you are amazing!!! And the stuff you have to go through.....
    Love you and hugs, Mirela