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The next day August 29, 2009

Posted by caizooka in Uncategorized.
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There is something to be said about getting a good, solid sleep. Clarity. Both little guys woke up with colds this morning. Brace yourself world. Sick O is a different O and one that there is even less predictability than on a normal day. Where you might have some wiggle room on a normal day and be able to convince him to do something, when he is sick, there is no peace. For him or for you. The usual happiness disappears and it filled with a child who his constantly screaming and crying and yelling, who is angry. That anger often translates to violence…usually to just me, but also extends to his daddy and brothers. Less to his younger brother thus far. The part that is so worrisome is the increased amount of spacing out periods. It’s so hard to reach him on a normal day, furthermore on a day like today.

Now that evening is here, I am thankful to say that O didn’t present to be as sick as he was this morning. He is tired and has a cold, but with the presence of M in his life, he doesn’t have much time to dwell on it. He was a busy guy today. He, E, M, and B went to The Children’s Museum. What fun they had!

As I watched O today, the diagnosis of ‘Autism’ was so prevalent in my mind. I was looking for it, searching for what that means and it is so apparent. Glaring at me. It is scary. I spent a bit of time today glancing at a couple of websites…autismspeaks.org. I signed up for their 100 day kit. It was recommend by our doctor. It is for families of children recently diagnosed with Autism. I am hoping that it will provide us with some guidance.

http://www.autismspeaks.org/community/family_services/100_day_kit.php

I also ventured to see about their walks for fundraising. No better way to understand this than meet families that are living it. They are having one on Saturday, October 3rd at UW. I am terrified to go. I will go. I will be in a better space to understand what we are truly dealing with. I’m afraid to see the other side of the spectrum. It will be our community soon and I need to embrace it. There is so much to learn from these people and part of me is so terribly excited to jump both feet first into this new world and the other half of me is holding onto the dock for dear life, still grasping the life I had before we had this diagnosis. Still hoping, ever so unrealistically, that the doctor would come back with a diagnosis of ‘well, it looks like your son is just allergic to peanuts. Here is a pill. He’ll be all better by the morning. He might sleep in an extra hour, but it will be okay’. God…if only.

Today was a good day. Only a few sudden outbursts of tears. I’m deciding to go with it. When you’re sad, be sad. When you’re happy, be happy. I’ve grasped the concept of that for the last decade. It works. Go with how you feel. It’s real, it’s present, and it’s here. I’ve found that the harder you work to defer your feelings, the longer the bout lasts. Now I choose to go with it. And, I’m sad. I’m grieving. The question that I’m asking myself, though, is ‘what am I grieving’? Am I sad for O? What will he miss in his life? But, on the other hand, what will he gain? He doesn’t seem to be at all affected by what others think of him. Am I sad for me? How could I be when his mere presence in my life can make my heart sing in such a remarkable way. Am I sad for my family? Maybe, but how could that be when they have so much to gain. What amazing compassion we all possess and will continue to foster through him. So, why am I sad? Is it selfish? I don’t know. I have a feeling that this will be an open discussion that I’ll have with myself for some time. I’m open to that. I have alot to learn.

Next subject on my mind…how to tell people. Do they need to know? What do they need to know? Will they judge him ‘an autistic boy’ before they see him as ‘O’? Is this hurtful or a hidden blessing? Do we weed out the kind of people that we don’t want to have in our lives in the first place? I sense that there will be a great deal of pain associated with what is to come in this realm and I find myself holding my breath as I type these mere words on the keyboard. But, I think that the question I will have to constantly raise with myself is, ‘Is it me that is affected by this, or is it O’? I think that there will often be two different answers to this. O is O. Anyone who meets him and gets to know him will agree to that whole-heartedly. He doesn’t let others opinions of him infiltrate his world. He is in OliverWorld. For a person who has lived her life caring so unbelievably much what others think of her, seeing the world in these new eyes is refreshing and wonderful. I cherish it. I hope that it remains this way for him. For me, his mom, I will try and see both. One side to understand him, and one side to protect him.

O…I see you. I see you trying to communicate what is going on in your head to me. Keep on trying. I am hear to listen. I want to speak your language. Please teach me. Please let me in. I want to understand.

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Comments»

1. Krista - August 29, 2009

Karen – you are such an incredible woman and I applaud your brave heart and gentle soul. Oliver is so lucky to have such a wonderful Mother. We all love Ollie and are sad and scared to hear of his diagnosis. No matter what, we will be here for you and your family. Thanks for sharing this journey of life with me. You, more than most, have helped me accept change and press forward with the best outlook possible. I’m here for you and would love to join you on the walk on 10/3. Love you. K

2. Sue - August 29, 2009

Dear Karen,
What a beautiful sharing of your feelings. We are feeling this shock with you and are here to support our little Oliver. I love this little guy so much, as we all do. Thank you for sharing. Love, Mom

3. Danielle - August 29, 2009

Karen – I am so proud of you. You are an amazing mother and friend. You are an inspiration. Your strength, passion and determination have always pulled you through and that is true now as always.

Oliver is a great kid and he has souch to offer the world just the way he is. This diagnosis protects him, and gives him the space to be himself. No need to wonder why he does what he does anymore. You get to enjoy all of him without trying to fix or redirect him.

I am happy you are writing this blog. Thanks for sharing yourself and your slice of Olivers story.

4. Kassandra - August 29, 2009

I saw this documentary Positively Autistic a month or so ago and it presented a side of autism I’d never considered before.

http://www.cbc.ca/national/blog/special_feature/positively_autistic/positively_autistic.html

Karen – thank you so much for sharing. Also my sister has been a teaching assistant in the Victoria school district for 15 years working with autistic spectrum kids. She is also currently training to be a teacher and is very invovled in advocating for her students and planning curriculum for them when their classroom teacher are not capable. If you like I can put you in contact with her, she’s on my facebook too.

5. Emily - August 29, 2009

Karen,
I realize that it’s not easy to share such feelings. It takes a lot of courage to be as open and honest as you are. Thank you so much for sharing such a part of yourself here. I admire the strength and transparency and love with which you are facing this new chapter in your guys’ and Oliver’s life. I love Ollie so dearly…he is truly a special kid and I am here to support you however I can. Love you!

6. Ardeth - August 30, 2009

What a difference a day makes……I just read your email, the blog, and the comments. I was struck with many random thoughts: how well you put your emotions into words, how lucky all three of your children are to have you and Peter as their parents, how Oliver’s world is exactly the same today as it was yesterday, while yours is completely flipped upside down, how very special that you already “get” that while autism will be difficult at times for all members of your family, it can also be a real positive.

You are a very special woman/wife/mother who is surrounded by a wonderful group of family and friends. Please know you are in my heart!

Big hugs,
Ardeth


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