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post #46 of 241 (permalink) Old 10-01-2013, 08:21 PM Thread Starter
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Kenji's journey

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I'm sorry for what you're going through, Drerio. I've been going through something of my own with one of my kids. I know what it's like to feel like a failure as a parent. Yet, I still have to believe that God gave US these particular children because it was best for THEM - - maybe not the best for us. Try to imagine how their lives could have been if they'd been given to parents who were not so loving and understanding.
Thank you. It means a lot. Aloha

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post #47 of 241 (permalink) Old 10-02-2013, 12:43 AM
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Kenji's journey

I think as parents we all have felt like failures from time to time. We want to protect our children from the hurt of life's realities. We wish we could absorb their pain, wash away their frustration and give them peace and happiness.

Like you drerio I used to beat myself up and feel as thou I'd somehow failed my kids. My son changed that when he told me that I can't take away his hurt. He loves me because I want to take it away and because I stand by him strong while he deals with this pain. I think your son would say the same if he could.

I know he would tell you that you haven't failed him, you've been by his side when he needed you. You're a good father and your wife a good mother. I can't possibly know what it's like to raise a special needs child but I know it must take tremendous strength and love.

My positive thoughts go out to you and your family.

Music washes away from the soul the dust of everyday life. - Auerbach
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post #48 of 241 (permalink) Old 10-02-2013, 01:20 AM Thread Starter
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Re: Kenji's journey

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I think as parents we all have felt like failures from time to time. We want to protect our children from the hurt of life's realities. We wish we could absorb their pain, wash away their frustration and give them peace and happiness.

Like you drerio I used to beat myself up and feel as thou I'd somehow failed my kids. My son changed that when he told me that I can't take away his hurt. He loves me because I want to take it away and because I stand by him strong while he deals with this pain. I think your son would say the same if he could.

I know he would tell you that you haven't failed him, you've been by his side when he needed you. You're a good father and your wife a good mother. I can't possibly know what it's like to raise a special needs child but I know it must take tremendous strength and love.

My positive thoughts go out to you and your family.
Thank you
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post #49 of 241 (permalink) Old 10-07-2013, 04:10 PM
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Re: Kenji's journey

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So, yesterday we had a team meeting with the school, teacher, administrators, district autism consultant, his school coordinator. We had him, Kenji, enrolled in a diploma track and hoped it would work but we knew him and knew his limitations. Thought we would at least give it a quarter. Well it has not been going well. The work was stepped up from what he was used to in middle school and elementary school (as it should); the added external stimuli and expected social norms; he has completely fallen apart. We suspected it would be too much. He had 22 incidences of aggression (outward but mostly trying to hurt himself) in the last month alone. I just want to cry. I feel like such a failure as a parent. I wish want to cry. I want to cry. Even though we knew this day would come it still feels like we failed our son. We said nothing to each other (wife and I) last night. He is going to a certificate track starting second quarter. Though I know it is more appropriate for him, I know what it also means for his long-term future. He will be safer there, he will still be given some academics, but the major focus is on eventually job training (low level work). My heart breaks when I think how much hope I had for this precious life. I still remember on occasions when I would rock him back to sleep at 2 am and sing to him. Talking and whispering to him, telling him how much I loved him. How much I wanted the best for him. My heart breaks.
I don't know if this quote will resonate with you, Drerio, but it came to mind when I read your post:

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Emily Perl Kingsley
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post #50 of 241 (permalink) Old 10-08-2013, 09:21 AM
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Re: Kenji's journey

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I still remember on occasions when I would rock him back to sleep at 2 am and sing to him. Talking and whispering to him, telling him how much I loved him. How much I wanted the best for him. My heart breaks.
As parents, a society... we all have to adjust what "best" means. Typically it means a high level of education and socialization resulting in a socially respected, high paying job.

But there are plenty of non-ASD people who shun that and find "best" as being what brings a high degree of personal fulfillment.

So you can still want what is best for him and he can still achieve it - you just have to change your perception of what is best for him to PERSONAL best.

You nor your wife have failed him. You were dealt a random hand as we all are and you have managed it all beautifully in tandem. Your son is very talented. Perhaps he will make a living creating art. I love his self-portrait. I think it's professional quality. Not many have the gift to see negative space like he does. And that career does not require a diploma. Hugs.

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post #51 of 241 (permalink) Old 10-08-2013, 10:38 AM Thread Starter
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Kenji's journey

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Is he also a drummer?
Younger son is the drummer.
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post #52 of 241 (permalink) Old 10-08-2013, 10:40 AM Thread Starter
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Kenji's journey

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As parents, a society... we all have to adjust what "best" means. Typically it means a high level of education and socialization resulting in a socially respected, high paying job.

But there are plenty of non-ASD people who shun that and find "best" as being what brings a high degree of personal fulfillment.

So you can still want what is best for him and he can still achieve it - you just have to change your perception of what is best for him to PERSONAL best.

You nor your wife have failed him. You were dealt a random hand as we all are and you have managed it all beautifully in tandem. Your son is very talented. Perhaps he will make a living creating art. I love his self-portrait. I think it's professional quality. Not many have the gift to see negative space like he does. And that career does not require a diploma. Hugs.
Thank you. I have to hide the self portrait, otherwise he will destroy it. His and our journey will continue.
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post #53 of 241 (permalink) Old 10-09-2013, 01:37 PM
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Re: Kenji's journey

Drerio,

Is it ONLY because it's a self-portrait that Kenji dislikes the picture, or does he dislike ALL of his artwork?
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post #54 of 241 (permalink) Old 10-09-2013, 01:38 PM Thread Starter
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Kenji's journey

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Drerio,

Is it ONLY because it's a self-portrait that Kenji dislikes the picture, or does he dislike ALL of his artwork?
I don't really know, he refuses to make anything else as that was an assigned school project.
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post #55 of 241 (permalink) Old 10-09-2013, 02:08 PM
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Re: Kenji's journey

Maybe you should assign him some other things. A family portrait or the dog.


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post #56 of 241 (permalink) Old 10-09-2013, 02:12 PM
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Re: Kenji's journey

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Thank you. I have to hide the self portrait, otherwise he will destroy it. His and our journey will continue.
His reaction reminds me of how so many people hate hearing their own voices on an answering machine or video. There's something jarring about seeing the representation of yourself, which often doesn't match up to the image you have of yourself in your head. You have a moment where you think "Is THAT what I sound like? Ugh!" Perhaps he had a similar reaction to the self-portrait. It triggered something about his self-image he doesn't like.

My speculation for what it's worth...
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post #57 of 241 (permalink) Old 10-09-2013, 02:18 PM
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Re: Kenji's journey

My son was asked to draw himself, he drew a picture of him drawing himself on a picture
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post #58 of 241 (permalink) Old 10-10-2013, 07:16 PM
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Kenji's journey

I get down sometimes about my d's asthma. I wonder what I did wrong, I did everything naturally and breasted. She didn't have sugar for three years, I did late vaccinations, all the natural hippy stuff.
And she still has asthma, and it feels like there is nothing I can do about it. Because I really can't. I do my best but she still ends up in the hospital.

Do you ever feel like the experts are blaming you or making you feel inferior?

I think if you continue to force him to be in an environment that isn't right for him, that would be failing him. If you didn't do everything you could, that would be failing him.

But it's not my fault my daughter has asthma, it's not your fault he has autism. It's so hard not to blame ourselves but the reality is, these are the children we have been given.

I don't understand how he's doing high school level work and they say he had the IQ of a 7 year old?
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post #59 of 241 (permalink) Old 10-10-2013, 07:31 PM Thread Starter
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I get down sometimes about my d's asthma. I wonder what I did wrong, I did everything naturally and breasted. She didn't have sugar for three years, I did late vaccinations, all the natural hippy stuff.
And she still has asthma, and it feels like there is nothing I can do about it. Because I really can't. I do my best but she still ends up in the hospital.

Do you ever feel like the experts are blaming you or making you feel inferior?

I think if you continue to force him to be in an environment that isn't right for him, that would be failing him. If you didn't do everything you could, that would be failing him.

But it's not my fault my daughter has asthma, it's not your fault he has autism. It's so hard not to blame ourselves but the reality is, these are the children we have been given.

I don't understand how he's doing high school level work and they say he had the IQ of a 7 year old?
My wife and I have to keep from often at IEP (Individual Education Program) meetings when certain educators speak up as to imply it is our parenting that has caused our child to have these behaviors. Ahem, we have a younger son without ASD, respectful and all around good kid (no meltdowns).

I know deep down it is not my fault that my son has ASD, but I think it is the nature of parents to think "If only I had done______". And, I sure that we could be better parents, but we do what we can daily.

My son is currently enrolled in a certificate program. So he really is not doing HS level work. He essentially will be going out to learn basic skills to get a job for his level of maturity and abilities. That is our focus right now.

Thank you.
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post #60 of 241 (permalink) Old 10-10-2013, 09:07 PM
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Kenji's journey

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My wife and I have to keep from often at IEP (Individual Education Program) meetings when certain educators speak up as to imply it is our parenting that has caused our child to have these behaviors. Ahem, we have a younger son without ASD, respectful and all around good kid (no meltdowns).

I know deep down it is not my fault that my son has ASD, but I think it is the nature of parents to think "If only I had done______". And, I sure that we could be better parents, but we do what we can daily.

My son is currently enrolled in a certificate program. So he really is not doing HS level work. He essentially will be going out to learn basic skills to get a job for his level of maturity and abilities. That is our focus right now.

Thank you.
School nurse, doctors, and hospital staff have all acted like it's my fault that her asthma isn't "under control". If only they knew.

You have so much education and IQ, if you could do better you would. It just gets me that we live in a time when so many children are severely abused, neglected and abandoned but it's the parents who really care who professionals look down their nose at.
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