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Life, Animated documentary


Lecka
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We finished last night... I really liked it, and I’m starting to re-read the book.  

My husband has a hard time when kids present differently than our son.  It just bothers him and he will really question various things or just say “our son doesn’t do that, our son doesn’t do that.”

But he ended up watching the end with me and he liked it more.

The thing most relevant to me this time was the interview with Owen’s brother.  He is a great brother, absolutely wonderful.  But it makes me think about some things with my sibling kids.  It is a lot of pressure in some ways.  I liked that they included that.

It’s very positive and respectful, and it is obvious Owen is so valued by his family and he has a lot of insight.  But it also mentioned some harder things like his brother worrying about how he would support his brother after his parents die. I think they did a great job of balancing those things. 

I also thought the animation throughout was really cool, and it goes along with the book really well, because in the book it goes a lot into how important animation and Disney are in their family. 

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It’s interesting for me, because my older son (now 13) used to say my son with autism could live with him when they grow up, and then a year or two ago he said maybe he wouldn’t want him to live with him.  

My daughter (newly 10) has just started saying he can live with her when they grow up.

I think there is something where kids go from picturing living alone when they grow up, to picturing living with a husband or wife and needing to take that person into consideration.  

It’s kind of sad for my kids I think.  I hope there is some way that it is “okay” if my son never lives with a sibling some day.  It makes me think I need to try for my son not living with a sibling whatever that looks like. 

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Lecka, I think the challenge for you with your kids is that they are so close in age. My dd has the assumption that she'll be involved in caring for ds over the long-term, but she's 10 years older and CAN. Your dd is the same age as your ds with ASD, so she'll be wrangling with her own needs as his appear. It may be a long time before she's stable enough (in a home, etc.) that she's ready to take on that kind of stress. 

I'm also seeing a lot of independent living + work things for autism pop up. I don't know if they have them where you are, but there are several in our state within a 2 hour drive. These are places where you can live in an independent fashion (apartment, etc.) and work and have a sense of community. We have another one starting that has BIG VISION for where they're going with it. It gives me hope that if I didn't have a path forward for my ds that I could put him in a community like that and have him be happy.

So no, I would think that your ds would not live with his siblings until possibly many years from now, simply because they're too close in age. If my dd were to take on my ds, it would almost be like adding a child to her house because of the age difference. Do you have your will set up with guardians? So then it's already obvious where he would go maybe if there were the need. We told our guardians that we intended for the care to go to dd and that they were more like trustees facilitating keeping them together. But their relationship is very different, more like parent/child because of the age difference. Also, since college, she has pulled away. I think she'd rise up if there were issues, but it's not like right now she wants that, lol. When you do the math, she'll probably be close to 50 and ds 40 before it should become an issue. 

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It is a long time away, but my kids do think about it.  

What I have seen so far with my older son, he has only pulled away when he has felt like things were going well for my younger son.  He has a need to see things are going well, and feel like things are going well.  

And, he does think about the future.  He does ask questions about the future.  He has had thoughts like he doesn’t want his brother to live in supportive housing, he thinks that would be mean.  I don’t think he thinks that now, but two years ago I think he thought that.  

For my daughter, I don’t think she thinks about things the same way, she has never worried about her brother in the same way.  I don’t know if she will worry more when she gets older, or if she will not.  

But then the thing is also, my younger son used to be very reliant on my older son.  He is not reliant on him now.  When he was reliant on him, my older son felt a lot of responsibility for him.  But now he doesn’t feel that same responsibility, but I have seen it’s because the reliance isn’t there.  

At the time I didn’t realize how much reliance/responsibility there was between them.  It was probably way too much pressure for my older son.  

In the movie though, I think some of the parents’ thought processes were based around taking some pressure off of the older brother.  Because he did feel some pressure!  I think I need to keep that in mind with my other kids, because my older son does think about things and take responsibility on himself.  If there is a void where he thinks there is a problem, he is going to fill it, so I think my husband and I need to make sure we notice things like that.  

 

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If you set up a trust fund, that can also make a difference. Then there are options and he isn't as much of a burden. He'll also have his SSI and medicaid. Maybe find a list of several realistic options for how this could play out and assure them that you have it covered, that there are multiple paths, that all of them would be good. 

I personally would not plan on having him live *with* his siblings. I would make plans that make it possible for them to be there for him but not have him live exactly with them. For my ds, that means in an adjacent house with a housekeeper. He would just come up for meals. He'll have a dog, some reasonable job, and basic breakfast/lunch level cooking skills. We're working on that now. So semi-independent. If that's not realistic for your ds, then some other levels of living that are not with them but are near them and having the funding arranged so it's actually realistic.

I think it's ok for a sibling to offer to let the dc live with them, but I think planning on it would be too much. They need that to be a choice not an obligation. 

Levels of assistance in living are really expensive. That's where it comes in with how you do that and still qualify for SSI, etc., hence a trust fund or other accounts. In our state we have STABLE accounts, but I don't know if they're in all states. Anyone can contribute to them I think maybe $14k a year, tax-free.

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