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Shaking March 20, 2007

Filed under: Autism — katy @ 11:49 am

I just got off the phone for an autism survey.  One and a half hours of talk about Owen, our family and the diagnostic process.  I can’t even begin to tell you how important it is to me to further the research of autism.  Any research really.  If I can help make the world a better place or something less difficult for another person.  She taped our conversation and is going to email me the transcript as well as the time line of Owen’s–what?  It hasn’t been a journey.  That is far too nice a description.   And it’s not "just" a diagnosis.  I amaze even myself with the positive attitude.  Focusing on the strength of my marriage and the compassion of my children.  Even the hard work Owen does every single day.  But it is hard too–facing the realities of the difficulties autism has created for him and us.  I try not to think about the sad things anymore…never having friends or getting married or driving a car.  I don’t like to think about the trips we never take–locally or further away.  I don’t think it is denial as much as it can be survival.  Talking about it with this researcher though…a categorical and directed conversation.  It’s not easy to describe the feelings I have.  I shared with her some feelings I share with no one and am ashamed to even put out here.  I had to be honest for research sake. 

I don’t mean for this to be a whinge.  I am just so overwhelmed with feelings right now.  I can’t even knit.


22 Responses to “Shaking”

  1. Jennifer Says:

    I don’t even know you, yet consider you one of the stongest people I know. I can’t imagine the struggle you have every day–but I think about you and check in to see how you are doing. You even managed a home renovation! I can’t even muster the effort to re-paint my living room.

  2. margene Says:

    You’re life has a purpose…not the one you thought, but one chosen for you. You’re doing a great job of meeting the challenge. Hugs to you dear one!

  3. Nancy J Says:

    We each have our own little corner of God’s world to perfect to his wishes…. it’s Spring as of 8:07 tonight and it’s getting warmer and life will be looking better when out of the Winter persuasion. Hugs.

  4. Amy Says:

    Bravery is confronting the things that scare you the most, and that shaking feeling is your body’s attempt to process all the adrenaline you just created while diving into some deep scary shit. You model bravery for the rest of us, every day in little bits and pieces, and today in one giant chunck. Thank you for being so honest.

  5. Carole Says:

    Oh, Katy. Don’t be ashamed of the stuff you feel. You’ve been given a hard row to hoe and, while I think you make it look easy, it’s got to be a challenge about a million times a day.

  6. Christy Says:

    Sending you hugs. That is all.

  7. Susan Says:

    I know what you mean. I have participated in a national study related to my son’s disability (which is most definitely not as life-affecting as autism, so I’ll put that right out there) and I found that it’s just easier to talk to the people doing the study than it is to talk to other people. I think it’s because they understand you even though they’re not going through it with you, and it’s such a relief to have that non-judging yet knowledgeable/understanding ear to hear you. It sounds as though this was cathartic for you, and I think that’s a good thing. (hugs)

  8. Chris Says:

    Good of you to bare it all for the hope that might come of the survey. take some time to regroup and let it go.

  9. greta Says:

    HUGS and few tears darlin’
    Know EXACTLY what you are

  10. Norma Says:

    Oh, as hard as that must have been (and kudos to you for being totally honest for research’s sake), it must have also been somewhat cathartic. This sounds trite and superficial, but I so wish I could wave a magic wand and make it all better. XO

  11. Kathy Says:

    Big hugs to you. Nothing I write can make it better, other than to say that I’m thinking of you. xoxoxo

  12. Kris Says:

    The fact that you even put yourself through that emotional turmoil for the sake of your son (and all the kids who will walk this path after him) says to me that you are one heck of a mom and one heck of a woman!

    I know you have to deal with all of the emotions. Try not to be too hard on yourself….and keep your head above water.

  13. Orli Says:

    I think it’s good your are focousing on the the positive, it’s all about, accept the things we can not change., etc. as little as I know about Autism, I think Owen is doing great considering…and it’s wonderful he has 2 older siblings that love and care for him. You know I don’t have autism yet it’s very hard for me to make friends…and my older brother doesn’t have either but seems to be content to be lonely. He is a worry for my dad.

  14. Nancy Says:

    It’s funny how much more honest we can be with a stranger. There are things we never want to say out loud as if keeping them quiet will make it less true.

    Anything you feel is valid don’t be too hard on yourself. It’s our actions that define us.

  15. Rosane Says:

    Oh, Kathleeny. I can’t imagine how hard it is to do what you do everyday. I second Amy’s comment. Very well put.

    The more I read you, the more I want to run to Granny’s and hug you! 🙂

    Take care,


  16. Maribel Says:

    You are a simply amazing person. Strong, fearless and compassionate. Thank you for sharing your feelings with us. Remember to breathe a little deeper everyday and release it slowly and remember we are all here for you.

  17. Doris Says:

    Thank you for sharing. I am delurking to tell you that I read this post a couple of days ago when we were having a particularly tough time with our 21 year old son who has Bipolar Disorder. I felt, as I read, that you could in many ways be reading my mind and speaking for me. Like autism, his bipolar diagnosis is so much more than a diagnosis, some days it actually feels like a sentence…although I’m not sure what the crime was that we committed (or that he did). Keep hanging in there, your positive attitude is terrific and has to be helping. My husband and I try to keep the positive in our minds, too. I’ll keep you in my thoughts and prayers.

  18. Collette Says:

    It’s not a whinge–it’s how you feel and that’s always valuable. Hugs to you.

  19. Angi Says:

    Hugs to you. You’re an amazing mom and an even more amazing advocate for others in your family’s shoes.

  20. heidi Says:

    I really don’t know what to say, exept I think you are dealing with this in the best way possible.

    I don’t have children but I imagine that you somewhat expect them to have all the things others have, love, satisfying life circumstances like a job you like, family, friends etc. Knowing that he to some extent may not have the things you expecct your kids to have must be groundshaking. And while your world has been turned aroud, the rest of the world carries on as if nothing happened…

    No, I think that you are dealing with this in the best possible way!

  21. Rosane Says:

    Hi Kathleen,

    Hope you’re well. 🙂


  22. Sara Says:

    I’m catching this late – due to my own life busy-ness 😉 It is so darned HARD sometimes. It just plain is hard. It doesn’t mean we love ’em any less – but it adds a poignant difficulty that few understand. Thanks for being there – keep on walking forward (and don’t forget to breathe…), one step at a time 😉

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