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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.

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1. heather - August 29, 2009

My heart has been so heavy for you. I want to be there for you, I want to give you space to grieve and process on your terms. I wonder throughout the day how you are doing, how Oliver is doing. What a gift to get a glimpse of your thoughts and experiences.
I do one last visit and kiss to my kids each night long after they are asleep and just treasure that peaceful moment. As I read about your visit to Oliver hidden away in Julian’s bed I wept at the extraordinary preciousness of that moment, of getting to gather him up and shower that love on him you so wish to comfort him with throughout each day. Oliver is so blessed to have such a loving, capable, advocating, sacrificing, compassionate mom. Blessings to you.


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