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post #61 of 241 (permalink) Old 10-10-2013, 09:14 PM
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Kenji's journey

Also Drerio, in the town I used to live in, a bunch of parents started a community for their adult children. They were all extremely autistic, had multiple disabilities and very low functioning. Somehow they set it up sort of like a trust. So that the organization could help other people but they had to adhere to certain guidelines.
A lot of the adults I worked with in the day program lived there.
Most of them were unable to even function in the sheltered workshop. But they had a community.
It can be done. I always felt like most of them had a lot more going on in their brains than could be measured. Not that they were geniuses but they had their own awareness and ways of getting what they wanted.

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post #62 of 241 (permalink) Old 10-13-2013, 06:45 PM Thread Starter
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Re: Kenji's journey

The years between Kenji and his younger brother Ryo are 2 year and 2 months. We always knew at some point that the academic, emotional, maturity and behavioral levels of Ryo would eventually surpass that of his older brother. In many way making him the “older” brother. The day appears to have arrived. I feel sad for both - that Ryo can’t enjoy being the younger brother, that Kenji can’t and will not be the older figure that Ryo can look to. It is less about me and how I feel, it is more about how I know this may have some impact on both of them as they get older. I have made the commitment to find ways to teach both of them in their new roles without belittling Kenji and without making Ryo feel cheated in his birth-place. We have started with differences in chores around the house and next it will be opening a bank account for Ryo. Teaching Ryo how to be responsible for his own finances. A skill that will be necessary as he may have to, at some point, oversee his brother’s financial well-being.

Starting this coming Tuesday is quarter two at Kenji’s HS and transitioning from the diploma track to the certificate track. He has enough cognitive awareness of what that means. I can see it on his face that it is a great disappointment. I wish it did not have to turn out this way, but we really are left with few choices if we want him to have any success in his future. The new course of study will based on learning basic life skills and thus getting him ready for the workplace and some form of independence. Sadly he still has difficulty understanding money - if he were tasked with making a basic purchase at the store, he would have difficulty understanding how much money to exchange and how much change he should receive back. Time - to which he still has a difficulty with understanding time on an analog clock. Yet, he can repeat back facts about high level concepts. Thus the task will be to merge these two skills or lack thereof with something he is able to succeed at in his life. We are resolved to help prepare him to meet this new challenge, move forward and no longer look back to wonder at what we could have done. It is not helpful to him or us and we all need to understand our new roles and move forward. Kenji's journey continues.
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post #63 of 241 (permalink) Old 10-13-2013, 07:06 PM
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Kenji's journey

Good for you, I'm glad you are done second guessing yourselves.
It's kind of sad about the younger brother surpassing the older in maturity.
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post #64 of 241 (permalink) Old 10-14-2013, 03:02 PM
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Re: Kenji's journey

Drerio, it's great that Kenji is moving forward and that you are preparing him for adult life. He is getting all the love and support that is humanly possible.

I understand what you are saying about Ryo and your worrying about him being robbed of the expected position of him having an older brother to look after him, and the roles being reversed. And it makes me think of my two boys. There are 2 years and 5 months between my boys. When oldest son was 5 and youngest son was 3 I sent them into the supermarket with £5 to buy sweeties. I hid behind the newspapers to observe what happened...

The boys selected the sweeties they wanted. Oldest son then gave youngest son the £5 and the sweeties and youngest son marched up confidently to the till-lady and made the purchases on behalf of himself and his big brother, whilst big brother blended into the background and tried to look inconspicous!

You see oldest son is painfully shy and avoids social situations. Youngest son is very outgoing and confident, nothing phases him. Youngest son has been "looking after" oldest son in social situations his whole life, he doesn't know any different, he loves his brother and he is happy to help him out in situations where he is uncomfortable. Maybe Ryo will feel the same way about helping Kenji

* shakes head and wonders why anyone would leave a job involving giving hand jobs to fish *
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post #65 of 241 (permalink) Old 10-14-2013, 03:41 PM Thread Starter
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Kenji's journey

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Drerio, it's great that Kenji is moving forward and that you are preparing him for adult life. He is getting all the love and support that is humanly possible.

I understand what you are saying about Ryo and your worrying about him being robbed of the expected position of him having an older brother to look after him, and the roles being reversed. And it makes me think of my two boys. There are 2 years and 5 months between my boys. When oldest son was 5 and youngest son was 3 I sent them into the supermarket with £5 to buy sweeties. I hid behind the newspapers to observe what happened...

The boys selected the sweeties they wanted. Oldest son then gave youngest son the £5 and the sweeties and youngest son marched up confidently to the till-lady and made the purchases on behalf of himself and his big brother, whilst big brother blended into the background and tried to look inconspicous!

You see oldest son is painfully shy and avoids social situations. Youngest son is very outgoing and confident, nothing phases him. Youngest son has been "looking after" oldest son in social situations his whole life, he doesn't know any different, he loves his brother and he is happy to help him out in situations where he is uncomfortable. Maybe Ryo will feel the same way about helping Kenji
Thank you. I do hope that the same will be realized (as it seems to be between your two sons) for my boys.
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post #66 of 241 (permalink) Old 10-15-2013, 04:20 PM
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Re: Kenji's journey

Drerio, I usually have next to nothing to contribute when it comes to talking about parenting and children, however the situation that you describe with your boys is very similar to the situation with my "nephews". They are the sons of a dear friend and I've known them most of their lives, so they're part of my family of choice, if not birth.

At any rate....the elder of the two was born with Down's syndrome. Similarly to kids with autism, it's been trial and error seeing how far his intellectual development and functional intelligence will advance. As it turns out, at 26 he has a functional age I'd say somewhere between 10 and 12 in most areas. His younger brother is now 24 and married. The younger brother has always known that his brother will need help and care throughout his life. He really just accepts it as the way things are. He's never known a time when his brother didn't have special needs, so it's just the family dynamic. For the most part, any resentment that he has is along the lines of resenting homework on a sunny day--sure his brother's needs may get in the way of things he'd rather do from time to time, but it's a pretty fleeting feeling.

Over the last year or so he's had to do a lot more helping with his brother's care since their mother moved out of state and even so, he's incredibly accepting of the responsibility. Granted, these are both amazing boys (in my completely objective opinion, of course!), but I am willing to bet that your home is just as loving and accepting of the facts of your lives. I think that's what makes the difference. No big fuss was ever made or mourned over, it was just the way things were. I bet your boys will be just as accepting and adjusted to the dynamic too!
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post #67 of 241 (permalink) Old 10-27-2013, 06:42 PM Thread Starter
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Kenji's journey

Last night, as a family, we went to a football game. We got discounted tickets. Thought it would be nice to do something different, change of venue from the ordinary. Well, like other college football games, the crowded parking lot (before the game) was packed with tailgaters. While none of this bothers most people it was the beginning of stimulation overload for Kenji. I could see it in his eyes and some of his actions. Because the University of Hawai'i Warriors are not doing so well this year, it was far less than a sell out crowd and many of the parking lot partiers made their way to their seats just before kick off. One could only imagine if they were a stellar team in their conference.

So we had some relatively relaxing moments in our seats in the stadium to just watch both teams go through drills and just relax talk and get something to eat. Just around the time of kick off, the stadium started to fill in with more spectators. The noise level from the announcer and the added PA fight songs started to amp up. The crowd started to buzz more. And when the home team made their first score, a loud cannon noise went off on our side of the stadium. The anxiety level of our son went up and up and up. As with ASD individuals this over stimulation works their sympathetic nerves into survival mode not matched by what is really happening. They cannot moderate or control actions to match the situation. Kenji started to get very agitated. He reflexively struck out at me once right after the cannon went off. Hit me hard in the back. I will tell you it was sore and I could tell it was a reflex, it was not some intended response. He even recognized right away what he did and try to undo it. He yelled at one time for it all to stop (later in the game). We were able to calm him down, but we could see from this situation that we put him into a nearly impossible scenario.

One lesson learned is that poor Kenji really cannot be exposed to the normal activities others take for granted. It makes it even more the case for me to look at how we find ways for him to be in safe environments for his future employment and living situations. On yet another note, I have said this before to others and have even written it down but as further public record: I just want to say that if anything every tragic happens to me at the hands of Kenji, I just want to say I forgive him and hope that he can be cared for and not punished unjustly. I love him.
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post #68 of 241 (permalink) Old 11-04-2013, 01:27 PM
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Re: Kenji's journey

*hugs* to you and Keiko and *hugs* to Kenji & Ryo!

Keep hanging tough, you're GREAT and WONDERFUL parents to both of your boys!
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post #69 of 241 (permalink) Old 11-04-2013, 02:36 PM
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Re: Kenji's journey

I'm so sorry the game didn't go as well as you'd hoped, drerio.

I wonder what will happen with Youngest as he gets older, although group homes and institutions are sadly in his future (developmentally age 2).

What calming methods worked in the stadium? That's info I know I need and am always willing to try what works for others. We have Veteran's Day stuff next week and I wan to go in with a coping game plan.

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post #70 of 241 (permalink) Old 11-04-2013, 02:50 PM Thread Starter
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Kenji's journey

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I'm so sorry the game didn't go as well as you'd hoped, drerio.

I wonder what will happen with Youngest as he gets older, although group homes and institutions are sadly in his future (developmentally age 2).

What calming methods worked in the stadium? That's info I know I need and am always willing to try what works for others. We have Veteran's Day stuff next week and I wan to go in with a coping game plan.
The best way to calm my son down at the stadium was for me to walk him out onto the deck outside of much of the noise and big crowds so that he could just pace heavy back and forth (a stim for him).

Well, my younger son is already a bit annoyed by having an autistic brother. I don't want to put too much on his plate yet. But, as both of them get older, I do want the younger one to realize he will have to have a role in his brother's life.

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post #71 of 241 (permalink) Old 11-04-2013, 03:01 PM
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Re: Kenji's journey

Mine is the youngest, and the older two still gripe when they feel too much focus is being placed on the youngest one. Individual time with me and H is a must-have.

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post #72 of 241 (permalink) Old 01-04-2014, 01:34 AM Thread Starter
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Kenji's journey

Kenji is getting older and now at the point where he is growing facial hair. So Monday, I need to show him how to shave. How will this go? I don't know? He has sensory issues, so I have as much anxiety for this upcoming event as he does, however I am not showing to him.

I will let you how this plays out
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post #73 of 241 (permalink) Old 01-05-2014, 11:37 PM
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Re: Kenji's journey

You and your family are resourceful and amazing. You have my admiration as I have relatives with similar circumstances.

With all of the challenges, I bet he has surprised you in the past with some things you expected to be difficult that turned out to be routine. Will be thinking of you and hope to hear the shaving experience goes well.

Life is messy - clean it up.
May you be so fortunate … To be surrounded by people who will help you get untangled from the things that are binding you. And, may you always know the joy of giving and receiving gratitude.
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post #74 of 241 (permalink) Old 01-23-2014, 12:33 PM
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Re: Kenji's journey

drerio,

I want you to know that I have not come here because I do not believe I have anything I could contribute to truly help. All I can give is the knowledge that I do care and only wish the very best for you, Kenji and your family. I am not a wise parent. I know who I am, in that respect and I very rarely, maybe only twice since I've been here, post in any threads in this area. I'm too afraid to give bad advice on such important topics as the care of children.

Never forget, though, I do care.

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"And this, too, shall pass away."
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post #75 of 241 (permalink) Old 01-23-2014, 01:05 PM Thread Starter
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Re: Kenji's journey

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drerio,

I want you to know that I have not come here because I do not believe I have anything I could contribute to truly help. All I can give is the knowledge that I do care and only wish the very best for you, Kenji and your family. I am not a wise parent. I know who I am, in that respect and I very rarely, maybe only twice since I've been here, post in any threads in this area. I'm too afraid to give bad advice on such important topics as the care of children.

Never forget, though, I do care.
Thank you for your kind thoughts. I will post something later today (somewhat brief of things going on), I promise.
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