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How did this happen? August 31, 2009

Posted by caizooka in Uncategorized.
3 comments

After watching the Dateline piece on the link of the MMR vaccine to autism, it started my mind working about HOW this happened. I know that every parent out there who has a child with autism wonders the same thing. Did I eat something toxic, non-organic while I was pregnant that caused this? Did he ingest something to cause this? Is it in the air? Is it in the vaccinations? The water? Is it genetic? Is it mold? Some people are better at accepting things with out understanding the reasoning behind them. I wish I were one of those people sometimes. I feel that if I don’t understand the source of the problem that I’m just treating the symptoms. It seemed to me that with his diagnosis, they kind of indicated that. He IS autistic. You can make it better (treat the symptoms) but he will always be autistic. I’m not sure that I’m willing to accept that yet, or ever. I’m not willing to accept that because I don’t know what it means. There are no two cases of autism as they all display different symptoms. Until we understand the reason for O’s autism, we will pursue the education offered to us as well as the various therapies. Of course we will try anything.

So, we are on day 3 of O being sick. I had forgotten this side of O. He was doing so well this summer. He hasn’t been sick for awhile and has been flourishing with the arrival of M in our lives and our home. Everything has been clicking for him lately. There are some outbursts and some difficulties, but nothing drastic. This morning I told him that he couldn’t watch Scooby Doo. He started yelling and screaming at me. I conceal my fear that he might lash out, but sure enough, he did. He picked up a plastic toy (E’s favorite one!) and threw it at the tv. The screen shattered as did my hope that that part of him had disappeared. At our old house he did something similar and broke one of the leaded glass windows. We can get a new tv, we can get new windows, albeit not cheap, but these things are not necessary, they are just things. What is terrifying about the experience is the reminder of the power that this has over him and over us. Within a few minutes he was remorseful and saying that he was sorry. It will happen again. The unpredictability from one minute to the next is frightening. One minute he’s laughing and playing with his brother, the next, he’s throwing Elmo toys into the tv.

I need to protect him from himself. I’m going to order the Guardian Angel Window Guards for his bedroom and the playroom. I can’t predict if he might suddenly decide to do something dangerous. I hate to do this, but this is necessary. Keeping my kids safe and healthy is necessary.

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. ┬áHer Generation Rescue is a great network of people that I’m looking forward to meet.

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.

the diagnosis August 28, 2009

Posted by caizooka in autism parenting.
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Well, today marks the beginning of a different parenting journey. The one of a parent of an Autistic child. We have been going through diagnostic testing with Oliver for about 1 1/2 months now. This should have not come as any surprise. Hello…we had the ADOS test completed at the Children’s Hospital AUTISM Center. How could this catch me so off guard then? I went in this morning with Peter to our appointment for feedback to hear that he has ‘Aspergers’. I had somehow made the ‘Aspergers’ diagnosis okay in my head. Lots of successful people have aspergers and aspergers seems to be somewhat socially acceptable. Aspergers is ‘Autism-lite’. Then to be confronted with a full blown ‘your son has autism’ diagnosis caught us a bit off guard. I have spent most of the day breaking into tears. Trying to break down the tears. Unable to cope with Emil. Thank God for Mizan and Lyla for helping out so much today. I never, ever cry in front of people. I usually only cry in my bathroom or my car, but for some reason I was crying everywhere, all day today. I’m sure that I have a somewhat of a psycho-crazy woman persona going on to the outside world;)

I am so appreciative of Peter today. For being supportive and strong and compassionate. You really never know what or how people will respond, so it was a nice surprise to be together and in sync on this day. I haven’t decided how to approach the world on this subject. We’ll figure that out. I feel extremely blessed to have some incredible friends with me on this journey. How lucky am I to live two doors down from Barb who just totally gets it. Seriously gets it. Sobbing together and hearing her memory of her daughter being diagnosed with Prada-Willis made me feel less alone in this.

I do know that I will find strength and empowerment in this part of my journey, but today I feel a bit defeated and tired. Receiving the diagnosis, the pages and pages of ‘things to do’ was extremely overwhelming and made me feel powerless. I’m glad that Julian is in LA having a good time with his cousins so that he didn’t have to absorb the energy that poured out of me today.

Oliver…tonight I went and looked for you after you fell asleep and you weren’t in your own bed. You were in Juju’s bed. Fast asleep. I pulled you in and held you as I had wanted to all day but you wouldn’t let me. You won’t let me help you and that scares me. You won’t let me take your pain away by hugging you and that hurts. God bless you, Oliver, you are going to be more than fine. You are going to be the best Oliver ever, I know that! You are divine just as you are.