'It hurts every day'

'It hurts every day'

There are 2 comments on the Kansas City Star story from Apr 28, 2006, titled 'It hurts every day'. In it, Kansas City Star reports that:

'It does strange things to your life. It's like a spider web - you're caught in it.' Jane Sondern Ron Johnson likens the discovery that his son Ben, now 18, had autism to the day ...

Join the discussion below, or Read more at Kansas City Star.

Joy

Lenexa, KS

#1 Apr 29, 2006
I can relate to these families. My granddaughter is six now, but she was diagnosed with Epilepsy at 8 months then Cerebral Palsy after a surgery , then Autism, now OCD and ADHD.. It is a struggle for parents, but they and the children persevere. The love they have for their children holds no bounds....
Courtney

Redmond, WA

#2 Apr 30, 2006
About OCD, I've had OCD since I was about 12 years old, and I've wished every day of my life for it to be gone. I'm 56 now, so I guess its not going to happen that I will ever have a life free of it. It hurts too, and the little one who has autism and OCD/ADHD is going to suffer even more. What an enormous set of burdens for a little child.
The symptoms I had of OCD as a child served to seperate be from the world, from my parents, my friends, sometimes my pets because I was afraid to touch them, although I loved them with all my heart. The pain of OCD varies for me, depending on who else it touches. Anything to do with "mental" disorders still has a huge stigma, an unfair one. We are just like other people, and we can't figure out why we do the things we do, so we sure can't explain its eccentricities to anyone else, though I've really really tried. I'm so tired of being labeled "odd", even when I think I'm doing a pretty good job of dealing with it, someone else's observation that I am not doing a good job casts an additional dark shadow on my life. I've thought about killing myself, when I was young, I offered to make a bargain with the devil, having just read a book about that and hearing about it in church and stuff. I was scared to do that, but I just wanted some measure of peace in my life, peace and normalcy I couldn't find and I was desparate. Actually I'm glad it didn't work on that, because I very much want to be "saved" and live in heaven in the afterlife, if there is one.
I get so sad sometimes but mostly I deal with it by shutting myself away from life, from others, certainly from strangers. It makes EVERYTHING so much harder.
My heart goes out to the little ones getting diagnosed with any terrible disease, and the parents too. I know it has to be terribly hard on them, because when you are a parent, and you have this new little baby, you want to look at him/her and dream of all the possibilities of wonderful things for this child, and OCD or anything doesn't fit in those plans.
I'm so tired of people saying I should just stop it. Does anyone tell someone suffering from cancer, or diabetes, or whatever to just "stop it". Its the same thing.

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