Comments on: On Desperation http://www.esteeklar.com/2009/03/06/the-form-of-desperation/ The Joy of Autism is about our journey with autism and our opinions about how society views it. Thu, 09 Feb 2012 20:35:00 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Paul Peters http://www.esteeklar.com/2009/03/06/the-form-of-desperation/comment-page-1/#comment-649 Paul Peters Tue, 17 Mar 2009 16:10:03 +0000 http://www.esteeklar.com/?p=1049#comment-649 Estee, thank you for sharing your perspectives. This was my first visit to your site. I was drawn hear after listening to part of your interview from an October 2008 feature on the CBC news (which I picked up on internet) called "Positively Autistic." I was struck with the similarity of your comments about Adam's fun zest for life and those similar qualities in my five year old daughter. She is funny, mischievious, creative and increasingly connecting with the world around her in an active reciprocal way, which makes my heart warm with joy. I think the ability to see the 'joys in autism' is a filter that takes time to appeciate and accept as families follow thier respective journeys. At some points along this journey we cannot see the light and at other points we choose not to as we cope with life, which is a marathon. I have come to appeciate, on most days, the exceptionalities that make my daughter who she is; but like most parents we all struggle with the realities of a harsh world at time and what the future may hold. Your posts are very real and true to life and bring people together. The pictures you share bring warmth and life to your words. As a clinician , also working with autistic children and youth over the past 10 plus years, this forum gives me a chance to voice my thoughts with my parent hat on. My voice is often mislabeled as clinician or parent erroneously within our small community where lines can become blurred. These dual roles bring a mixture of blessings and sorrows. Keep up the good work in sharing your 'joy' and building acceptance, understanding and capacity across a shrinking cyber world. Family experiences a can be quite universal and serve to break down our isolation. Estee, thank you for sharing your perspectives. This was my first visit to your site. I was drawn hear after listening to part of your interview from an October 2008 feature on the CBC news (which I picked up on internet) called “Positively Autistic.” I was struck with the similarity of your comments about Adam’s fun zest for life and those similar qualities in my five year old daughter. She is funny, mischievious, creative and increasingly connecting with the world around her in an active reciprocal way, which makes my heart warm with joy. I think the ability to see the ‘joys in autism’ is a filter that takes time to appeciate and accept as families follow thier respective journeys. At some points along this journey we cannot see the light and at other points we choose not to as we cope with life, which is a marathon. I have come to appeciate, on most days, the exceptionalities that make my daughter who she is; but like most parents we all struggle with the realities of a harsh world at time and what the future may hold. Your posts are very real and true to life and bring people together. The pictures you share bring warmth and life to your words. As a clinician , also working with autistic children and youth over the past 10 plus years, this forum gives me a chance to voice my thoughts with my parent hat on. My voice is often mislabeled as clinician or parent erroneously within our small community where lines can become blurred. These dual roles bring a mixture of blessings and sorrows. Keep up the good work in sharing your ‘joy’ and building acceptance, understanding and capacity across a shrinking cyber world. Family experiences a can be quite universal and serve to break down our isolation.

]]> By: JeniferWestphal http://www.esteeklar.com/2009/03/06/the-form-of-desperation/comment-page-1/#comment-495 JeniferWestphal Sat, 07 Mar 2009 15:51:11 +0000 http://www.esteeklar.com/?p=1049#comment-495 Estee, I am new to your blog and appreciate your perspective. I too have been involved with autism for many years. In the beginning, I too felt bitter, angry, full of self pity, wishing for a different child. I am so happy those wishes did not come true. Is autism a club you would voluntarily sign up for? No. But the journey is one I wouldn't trade for anything. Today, my son Kyle is a wonderfully active 16 year old, a truly beautiful child living a full life because his autism is such a wonderful part of him. Because of my experience, moving from a feeling of hopelessness to one of hope, I too have dedicated my self to helping others find treatment options...a community...and feel empowered to reach their kids. I've had a number of parents spit on me for this...most recently the blogger at About.com who continues to advocate that we aren't experts of our kids, how trying anything is too much of a burden on families, how basically we must not feel that much joy in autism. Baloney. I don't care what anyone says, and thankfully you don't either, I'm sticking with the joy part. Autism has taught me patience, when I thought I had none left; autism has taught me to be a kinder, more understand person (of myself, and others); and autism has taught me to feel joy in the face of the unknown. Although not in divorce court yet, I know the journey of changes in all my relationships - from my husband to many, many friends. In the end, it's all good. Thank you. Jenifer Westphal www.kylestreehouse.org Estee, I am new to your blog and appreciate your perspective. I too have been involved with autism for many years. In the beginning, I too felt bitter, angry, full of self pity, wishing for a different child. I am so happy those wishes did not come true. Is autism a club you would voluntarily sign up for? No. But the journey is one I wouldn’t trade for anything. Today, my son Kyle is a wonderfully active 16 year old, a truly beautiful child living a full life because his autism is such a wonderful part of him. Because of my experience, moving from a feeling of hopelessness to one of hope, I too have dedicated my self to helping others find treatment options…a community…and feel empowered to reach their kids. I’ve had a number of parents spit on me for this…most recently the blogger at About.com who continues to advocate that we aren’t experts of our kids, how trying anything is too much of a burden on families, how basically we must not feel that much joy in autism. Baloney. I don’t care what anyone says, and thankfully you don’t either, I’m sticking with the joy part. Autism has taught me patience, when I thought I had none left; autism has taught me to be a kinder, more understand person (of myself, and others); and autism has taught me to feel joy in the face of the unknown. Although not in divorce court yet, I know the journey of changes in all my relationships – from my husband to many, many friends. In the end, it’s all good. Thank you.

Jenifer Westphal
http://www.kylestreehouse.org

]]> By: Estee http://www.esteeklar.com/2009/03/06/the-form-of-desperation/comment-page-1/#comment-492 Estee Sat, 07 Mar 2009 15:05:29 +0000 http://www.esteeklar.com/?p=1049#comment-492 Phil, You got THAT right. Maybe it has already been written. Phil,

You got THAT right. Maybe it has already been written.

]]> By: Phil Schwarz http://www.esteeklar.com/2009/03/06/the-form-of-desperation/comment-page-1/#comment-482 Phil Schwarz Sat, 07 Mar 2009 03:51:14 +0000 http://www.esteeklar.com/?p=1049#comment-482 The end of one book and the beginning of the next. Hazaq, hazaq, ve-nithazeq... The end of one book and the beginning of the next.
Hazaq, hazaq, ve-nithazeq…

]]> By: Marilen http://www.esteeklar.com/2009/03/06/the-form-of-desperation/comment-page-1/#comment-475 Marilen Fri, 06 Mar 2009 21:09:49 +0000 http://www.esteeklar.com/?p=1049#comment-475 It is interesting that as we get our children labeled, we, parents, get labeled as well. Whatever hopes and joys we have, the world seems to think that they are merely masks. Whereas the challenges are very real, so are the joys and things that make us hopeful. We are capable of living well. That's how strong human spirit can be. Estee, thank you for sharing your thought s and experiences. I take joy in reading your blogs. Warmest regards, Marilen It is interesting that as we get our children labeled, we, parents, get labeled as well. Whatever hopes and joys we have, the world seems to think that they are merely masks. Whereas the challenges are very real, so are the joys and things that make us hopeful. We are capable of living well. That’s how strong human spirit can be.

Estee, thank you for sharing your thought s and experiences. I take joy in reading your blogs.

Warmest regards,

Marilen

]]> By: Kristina http://www.esteeklar.com/2009/03/06/the-form-of-desperation/comment-page-1/#comment-472 Kristina Fri, 06 Mar 2009 19:02:15 +0000 http://www.esteeklar.com/?p=1049#comment-472 And glad that we can all walk together on the way to that other side----thinking of you and Adam. And glad that we can all walk together on the way to that other side—-thinking of you and Adam.

]]> By: Clay http://www.esteeklar.com/2009/03/06/the-form-of-desperation/comment-page-1/#comment-471 Clay Fri, 06 Mar 2009 16:19:10 +0000 http://www.esteeklar.com/?p=1049#comment-471 Yeah, whatever doesn't kill us, makes us stronger. Too true. Yeah, whatever doesn’t kill us, makes us stronger. Too true.

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