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post #1 of 243 (permalink) Old 09-07-2013, 08:54 PM Thread Starter
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Kenji's journey

Parallel to my blog in the LTSiM forum "Mr & Mrs Drerio Journey". This focuses primarily on our struggles, disappointments and successes in raising our son with Autism.

I know there are a number of members who share this same struggle, I invite you to tag along and tell us about your ASD child/young adult. My hope is not just to raise awareness but maybe to help others on their blessed journey as well (whether they openly share or just lurk).

Kenji (my oldest son)
Actual Age - 14
Diagnosed 3.5 years of age
He is verbal with higher expressive than receptive skills (this is due to his processing time)
His emotional and behavioral age is 2
His intellectual age is about 7

He is currently a Freshman in HS and we have him on a diploma track. All previous years of schooling were spent either exclusively or partially in a full self-contained classroom.

This is our Journey, this is his journey as well.


Last edited by Ikaika; 09-08-2013 at 12:32 AM.
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post #2 of 243 (permalink) Old 09-08-2013, 12:26 PM Thread Starter
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Kenji's journey

I have shared this before on my marriage blog journey.

My son made this self portrait of himself as an assignment in an Art Class in the 8th Grade. He hates it. I can hardly ever take a picture of him. He hates seeing pictures of himself or hearing his voice on recording.

My "blessed" son

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post #3 of 243 (permalink) Old 09-08-2013, 03:12 PM
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Re: Kenji's journey

my nephew is nonverbal but highly receptive. He is 15 but not on a diploma track due to his reading skills. he makes constant noises that sound like a baby's babble having a conversation. I tell him all the time I don't understand what he trying to say but I know he understands me and how I wish for the day when he can unlock what's happening and tell us all the amazing things on his mind.

Feel your pain Drerio but not as a parent. That's a special pain that I can only glimpse and am lucky to be able to turn away from when it gets too real.

I've said this before, your sons's art work is just incredible! I hope he continues to find ways to express himself.
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post #4 of 243 (permalink) Old 09-08-2013, 03:12 PM
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Re: Kenji's journey

Is he also a drummer?
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post #5 of 243 (permalink) Old 09-08-2013, 03:15 PM Thread Starter
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Kenji's journey

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Is he also a drummer?
younger son (non-ASD child) is the drummer. It is easy to get them confused
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post #6 of 243 (permalink) Old 09-08-2013, 04:58 PM Thread Starter
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Kenji's journey

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my nephew is nonverbal but highly receptive. He is 15 but not on a diploma track due to his reading skills. he makes constant noises that sound like a baby's babble having a conversation. I tell him all the time I don't understand what he trying to say but I know he understands me and how I wish for the day when he can unlock what's happening and tell us all the amazing things on his mind.

Feel your pain Drerio but not as a parent. That's a special pain that I can only glimpse and am lucky to be able to turn away from when it gets too real.

I've said this before, your sons's art work is just incredible! I hope he continues to find ways to express himself.
thank you Anon P for your thoughts. I think more of my pain and worry has so much to do about my son's future. As long as he is a minor and or living with us, I can do as much as I can to buffer him from the world. This may not even be the healthiest approach for us or him, to coddle him, we resist doing this but not always easy.

One thing I have even considered doing (taking it more seriously as my son gets older) is to retire early and start up a non-profit organization (locally only) that would target individuals like my son. The organization would partner with local business to find some form of employment for these individuals (jobs that would otherwise not pay very much but could be of service to any company). The business would then contribute some level of money to the organization (tax write off) as well as support through grants and donations. In return the individuals enrolled in the program would be provided room and board (cafeteria style eating) in a semi-independent living arrangement, similar to some form of dorm living (maybe a little higher level given its permanency). And, I would try to get some service support from a State agency to have weekly or bimonthly visits from paraprofessionals. These visits these would check to see that the residents are able to meet other basic needs not supplied by the program (they would get a stipend), buying clothes, etc. Make sure they are ok and maybe even be a friend on occasion, take them on outings over the weekend or when they have off.
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post #7 of 243 (permalink) Old 09-08-2013, 07:18 PM
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Re: Kenji's journey

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Originally Posted by drerio View Post
thank you Anon P for your thoughts. I think more of my pain and worry has so much to do about my son's future. As long as he is a minor and or living with us, I can do as much as I can to buffer him from the world. This may not even be the healthiest approach for us or him, to coddle him, we resist doing this but not always easy.

One thing I have even considered doing (taking it more seriously as my son gets older) is to retire early and start up a non-profit organization (locally only) that would target individuals like my son. The organization would partner with local business to find some form of employment for these individuals (jobs that would otherwise not pay very much but could be of service to any company). The business would then contribute some level of money to the organization (tax write off) as well as support through grants and donations. In return the individuals enrolled in the program would be provided room and board (cafeteria style eating) in a semi-independent living arrangement, similar to some form of dorm living (maybe a little higher level given its permanency). And, I would try to get some service support from a State agency to have weekly or bimonthly visits from paraprofessionals. These visits these would check to see that the residents are able to meet other basic needs not supplied by the program (they would get a stipend), buying clothes, etc. Make sure they are ok and maybe even be a friend on occasion, take them on outings over the weekend or when they have off.
I love this idea!

dept of rehab, you local agency, may have a similar program already going. Also, UPS is a company that partners with local agencies to offer appropriate employment and they offer job coaching, although I don't know specifics, nor what would be available where your area.

As your son gets settled into school, at some point soon, his IEP should be addressing next step potentials. You and your wife will need lots of time to check out what's available and prepare both of you. There are so many kids with ASD there are new programs happening all the time.

My nephew attended a one week sleepover camp this summer. The camper ratio one counselor for two kids. It was specifically for ASD kids. My nephew had a blast, we know this because when asked, before they left go home, if he wanted to come back again, he enthusiastically nodded and babbled very loudly! This was a scary thing to leave a nonverbal child for a week camp. So they were thrilled with his enthusiastic response.

Last edited by Anon Pink; 09-08-2013 at 07:19 PM. Reason: Damn auto correct!
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post #8 of 243 (permalink) Old 09-08-2013, 07:30 PM Thread Starter
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Re: Kenji's journey

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I love this idea!

dept of rehab, you local agency, may have a similar program already going. Also, UPS is a company that partners with local agencies to offer appropriate employment and they offer job coaching, although I don't know specifics, nor what would be available where your area.

As your son gets settled into school, at some point soon, his IEP should be addressing next step potentials. You and your wife will need lots of time to check out what's available and prepare both of you. There are so many kids with ASD there are new programs happening all the time.

My nephew attended a one week sleepover camp this summer. The camper ratio one counselor for two kids. It was specifically for ASD kids. My nephew had a blast, we know this because when asked, before they left go home, if he wanted to come back again, he enthusiastically nodded and babbled very loudly! This was a scary thing to leave a nonverbal child for a week camp. So they were thrilled with his enthusiastic response.
Thank you... some agencies do have a program, but very limited in scope to what I would propose. I think it is one thing to suggest you are going to support gainful employment for those with special needs to suggest that you will help them will all levels of life skills, work, home, social, etc. It is the latter that I want to do. I know it is a big undertaking and I can't even suggest that I will be successful at doing it but it is something my "heart" is telling me to do.

Our dept. of Health does have a very limited program, but as you know every State budget is strapped and cannot provide much. I would like to use the State agencies as a partner.

Well, we will see. It is still a seed and I have not ever tilled the soil for planting.
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post #9 of 243 (permalink) Old 09-08-2013, 08:04 PM
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Re: Kenji's journey

I wish there were more services available too. I have another nephew with CP who is also nonverbal due to coordination of those muscles involved. My husbands sister. He is wheelchair bound and was unable to continue his volunteer job at a museum in the city due to mobility bud cut backs. He is 22 and spends his days at home now.

I hope you can turn this dream into a reality, then it can be duplicated all across the US.
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post #10 of 243 (permalink) Old 09-08-2013, 08:40 PM
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Re: Kenji's journey

Quote:
Originally Posted by Anon Pink View Post
my nephew is nonverbal but highly receptive. He is 15 but not on a diploma track due to his reading skills. he makes constant noises that sound like a baby's babble having a conversation. I tell him all the time I don't understand what he trying to say but I know he understands me and how I wish for the day when he can unlock what's happening and tell us all the amazing things on his mind.

Feel your pain Drerio but not as a parent. That's a special pain that I can only glimpse and am lucky to be able to turn away from when it gets too real.

I've said this before, your sons's art work is just incredible! I hope he continues to find ways to express himself.
You should research "Carly's voice" If you haven't already.
Carlys Voice | Changing the world of Autism

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post #11 of 243 (permalink) Old 09-08-2013, 08:42 PM
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Re: Kenji's journey

Drerio, you are an amazing parent. He's very lucky to have you.
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post #12 of 243 (permalink) Old 09-08-2013, 08:46 PM Thread Starter
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Re: Kenji's journey

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Drerio, you are an amazing parent. He's very lucky to have you.
thank you, however I feel more like a failure (I know it is unfounded but I often just feel like I failed him somewhere), but I will not let that keep from moving forward.
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post #13 of 243 (permalink) Old 09-08-2013, 09:27 PM
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Re: Kenji's journey

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You should research "Carly's voice" If you haven't already.
Carlys Voice | Changing the world of Autism
We saw the news reports and read articles about her story. That what's has prompted me to continue to tell my nephew that I know he's in there and we need to find a way for him to communicate to us. Like Carly, who resisted and resisted learning to type, my nephew resists. It's also very difficult to test his reading because his attention span is seconds, not minutes. My brother and his wife a very strong advocates and if there is a way to tap into him, they will find it I have no doubt.

Parents of special needs kids are super heroes!
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post #14 of 243 (permalink) Old 09-08-2013, 09:42 PM
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Re: Kenji's journey

Drerio, it a struggle at times. You really seem to be doing well with your son, and his art is amazing.

One of the issues we have with our aspie son, nearly 25, is that to an outsider he appears normal and functional, except that he looks past people or in the air when he talks to them, and he moves around a lot. This means that no-one really understands the struggle that it is to deal with a grown son who has the emotional & social maturity of a 12 yo, and sometimes I think, the decision making capability of a primary school student.

He also has no ability to link current actions with future outcomes. This leads him down all kinds of bad paths, and he also makes poor choices in his friends.

What we realised as he got older, towards teens, was that he thought he could say 'please' and get whatever he wanted. This came from when he was a toddler and if he asked for something, we would either say 'no' straight up, or say 'say please M'. He then equated in his brain that saying please meant he could have what he asked for. Once something is in his brain, it cannot be removed easily.

He has a photographic memory and an insatiable desire for information. He is lazy and unmotivated, and I can see him living at home with us forever as I don't see him ever being able to function in a full time job.
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post #15 of 243 (permalink) Old 09-08-2013, 09:56 PM
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Re: Kenji's journey

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thank you, however I feel more like a failure (I know it is unfounded but I often just feel like I failed him somewhere), but I will not let that keep from moving forward.
Youre not a failure! You know where that failure feeling comes from. Own that that feeling doesn't reflect reality. Own that that feeling comes from somewhere else, not your parenting skills, not your genetic contribution. Work on cutting yourself some slack and you work on your dream non profit!
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