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What is in a label? August 30, 2009

Posted by caizooka in Uncategorized.
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As I listened to Peter telling his dad about O’s diagnosis I heard the wisdom of his words, ‘O is still O. The doesn’t change who he is or how we feel about him’. True. Very true. As Peter and I are each enduring our own process of acceptance, I realize that everyone is going to have to come to terms with this on their own, at their own pace. Ones belief system and past histories provide you with you ability or inability to cope. For people who have no history with, or a negative history with Autism, this will be a more difficult challenge. For people who know me, know O, this doesn’t change anything. Hopefully. I’m so grateful for my wonderful support group whom I shared this blog with. The words of love and support are so valuable. They are helping to lift me to a place of peace and understanding. There are going to be setbacks along the way, but I’m feeling incredibly encouraged.

One notion that is stuck in my head is the whole idea of ‘normal’. I think in trying to reassure us that Oliver’s going to be ‘OK’, that the doctor told us that there are many early interventions that we can try to help him appear to be ‘normal’. God forbid, I don’t want any of my kids to be ‘normal’. What is that anyways?!! Is normal a range? What is the range? I fought so hard to be normal my whole life. Normal for me has meant being a wealthy Catholic girl from Bel Air, not a half Japanese American girl from West LA. Normal has often meant being Japanese, not half Japanese, being white, not Japanese. Being tall, not short, being short, not tall. Assimilate, assimilate, assimilate. That’s all that I ever wanted. Ironic that now all I want for me is to NOT be normal. Yet, now is what we seek for O is to be perceived as ‘normal’. Yikes, I think that I’ve hit a road block. I cherish the parts of him that make him different. Maybe people are just referring to giving him the tools so that he feels safe and not abnormal. So that he has the chance to achieve his own pursuit of happiness. Maybe it’s about opportunity. Is being different not normal?!

Interesting that O chose us to be his family. Each of us has had our struggles to fit into different societies, families, and cultures. We have a lot to teach and to learn from him. We are what he needs. He is what we need.

Attaching the label of ‘autism’ to O makes me feel a bit ambivalent. On one hand, it seems like now we have a place to start to discover the tools that we need to help O. Increased resources. On the other hand, it confines him. Yesterday Oliver misused the pronoun ‘she’. He constantly confuses it with ‘he’. Someone tried to correct him. I felt a strange mix of feelings. Do I tell that person, ‘Oh, he has AUTISM so he often can’t discern between he and she’, or do I say, ‘it’s confusing for him’. Do I say nothing at all? I chose the middle response.

Today O is sick. So is Emil. It is very loud in our house. Everything is so loud and there doesn’t seem to be any possible way to get him to be quiet. Even quieter. O is having a respiratory response to his cold which means he has to be on inhalers. He doesn’t like them. Who would. It takes a great deal of patience to get him to use them. I’m not sure that I have it in me today. I need ear plugs.

My first inclination is to research, research, research. What to do? What works? I know for myself that nutrition is a huge factor. We’ll be meeting with our doctor next week to talk about this. I’m excited for this change. Since reducing the gluten in my own diet, I feel like a different person. I am hoping that the impact will be great for O as well.

I’m looking into this GFCF (gluten-free, casein-free) diet.

I’m intrigued by Jenny McCarthy’s path to ‘cure’ her son of autism.  Her Generation Rescue is a great network of people that I’m looking forward to meet.

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Comments»

1. Ardeth - August 30, 2009

I often “translate” words I hear from others into my own belief system. I became aware of doing this years ago in college when I would go to church. I realized that although I loved the feeling of community and had incorporated the values into my belief system, I did not believe a lot of the dogma. So I would translate the words into what I believed.

Maybe you could do the same with the word “normal.” What we moms really want for our kids is to live the best, most complete life that they can live. Whatever tools, research, ideas that you can gather to help Oliver be the best he can be, will be helpful. Meanwhile, I am convinced that none of us are normal!!! :-))

Hugs, A

P.S. I have some earplugs you can borrow.
P.P.S Oliver is so lucky to have you and Peter.

2. Marne - August 30, 2009

Karen –

Your blog is beautiful- just as all of your children are beautiful – just as you are beautiful.

As I sit here and read it I am brought to tears. Ollie will be fine, not only will he be fine but he will flourish. I have come to believe that we all have different challenges in life, this is his. He will be strong in many ways where others are not. He will bring a new dimension to your lives that wasn’t there before. It is always better to know than to not know because now you have options…autism does not define Oliver- just as dyslexia does not define Zach.

Your in my thoughts.

xoxo,

Marne

3. Julie Burke - August 31, 2009

Karen, I am struck by Oliver’s diagnosis. I am struck by the fact that I know very little and need to learn much more about autism so that I can better understand what Oliver is going through – what you’re going through. I am struck by the intensity with which I feel the raw emotion you courageously share here. I am struck by the fact that it’s in those who celebrate their differences that I find inspiration – and until now, I didn’t consciously realize that’s one of the things I have always admired in you. I am struck by what you described to me once before his diagnosis and that you repeat again here – that Oliver chose you to be his family – he’s one smart cookie!

Thank you for opening up and letting me listen and learn. I hope through what you share, I can be a support to you in this journey.

Love, Julie

4. Deb Glazer - September 5, 2009

Karen,
As your new friend and neighbor, I feel lucky to have met you and have you in our family’s life. Doug and I have felt the universe was in sync when we bought our home, and how pleasant a surprise when we found out you and Peter had 3 boys. My initial impression of you and still is of a mom “who really has it all together”. I have no doubt that you will be a strong advocate, protector, educator, and loving mom to Oliver and all of your children no matter what life throws your direction.

As for what is in a label, I like to learn from watching how other children see the world. Jacob sees Oliver as his friend and neighbor , and Julian’s little brother. (and Emil’s big brother!). Words like autism do not mean anything to children. Oliver is an adorable 4 y/o little boy who will teach you and all of us much about life. I have often pondered about wanting our children to be “normal” and how all of us want to protect our children from being labeled anything. Trust yourself, have faith, and believe from the deepest place in your heart that Oliver will be ok in the world labels or no labels.

Thank you so much for including me in your blog. I wish I knew the right thing to say to make all of this easier for you, but I won’t pretend to. I guarantee you I will probably say the wrong thing sometimes, so I am hoping you can teach me a thing or two. 🙂 Please feel free to yell over the fence when you need. Afterall…what are neighbors for??


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