{"id":128,"date":"2009-08-22T12:58:00","date_gmt":"2009-08-22T12:58:00","guid":{"rendered":"http:\/\/susansenator.com\/blog2\/2009\/08\/imagine\/"},"modified":"2009-08-22T12:58:00","modified_gmt":"2009-08-22T12:58:00","slug":"imagine","status":"publish","type":"post","link":"https:\/\/susansenator.com\/blog\/2009\/08\/imagine\/","title":{"rendered":"Imagine"},"content":{"rendered":"

People say I’m a dreamer<\/span>
But I’m not the only one<\/span>
I hope someday you’ll join us<\/span>
And the world will live as one.<\/span>
–John Lennon<\/span><\/p>\n

I don’t think I said it clearly enough in the last post. What I want is not to have to be in The System anymore. I don’t want to have to worry about what The State will be able to do for Nat, and what he will be able to do in The World. I am so sick of the world and the state and the system. The system says that you can’t save up the money you get in SSI; you have to spend it all on your kid’s needs. But if he doesn’t need quite that much, the Social Security Administration will not decrease the amount; they will just take it away. You can’t just let the money accumulate beyond $2000. You can’t find a good investment for it and dedicate that entire thing to your child’s future. Either he spends it monthly, all of it, or it goes away. But if he has qualified for the entitlement, why not be able to invest it? Why should the Federal Government care if we use it monthly or in a few years, once it has increased in value as an investment? If he is entitled, by virtue of his disability, to a certain dollar amount per month, why can’t that entitlement remain as long as the dividends and principal go for that same individual?<\/p>\n

Or how about this one? The State did not give one bit of doo doo when Nat was under 18 and getting medication. Once he turned 18 and we became his formal guardians, we have to apply to a judge yearly for his medication to be approved!<\/p>\n

Why does the state care to the point of absurd micromanagement, and completely look away on other things?<\/p>\n

For this and other reasons, I want a better system. I want to make my own system.<\/p>\n

Just like when Nat was little, I want to keep him near me, and keep the world and its corruption away. Now I don’t have to keep the world away but I think maybe I want to keep the government away. It’s just too hard, and it’s just too messy.<\/p>\n

How then do we set him up so that he’s okay, even when we die? How is the state going to do that any better than I can? And Karl Taro Greenfeld makes an excellent point in his book Boy Alone<\/span>: When the parents die, even if the sibs can take care of the autistic sibling, he will lose some love from his life. Siblings cannot love him like his parents.<\/span> Something like that. Very dark, but in some ways, its brutal simplicity resonates with me. I never assumed Max and Ben would take care of Nat one day. I just have not yet planned for that moment, other than by having a will. I joke with people when they ask me my plan for Nat: “I plan on not dying.”<\/p>\n

Dying aside, I just want to simplify things. I want to scale back. I want to find a group of parents like us with kids like Nat and all together buy a house nearby with 5 bedrooms, let’s say. One bedroom for the live-in. A back-up staffer for when the live-in is sick or on vacation. Parents rotate who is the back-up back-up, so every four days Ned and I would be the back-up back-up. There would always be someone available to help out.<\/p>\n

Four families would have to pay that person’s salary and all the food, etc. Each family would have to manage their own kid. Each family would have to book the fun events, get the kid a job (if that’s what they want to do), keep track of appointments.<\/p>\n

Anyway, it would be the live-in’s job 1) to keep the boys safe; 2) get them to appointments; 3) get them to where they need to go; 4) get themto exercise and to have fun; 5) find other similar houses for broader socializing.<\/p>\n

What would a live-in, well-trained person earn? The four families would divide that income into 4. Every year it would cost that much. That’s a lot. That’s one of the biggest problems.<\/p>\n

Maybe there would be one extra part of the house, an apartment, that generated income. In my town, you can also rent out parking spaces for $100 a space.<\/p>\n

Or what if the house was not as nearby as where I live, but was more rural? Like a 45 minute drive? What if it were like a farmhouse? What if there was a small farm that could generate a little income, like a greenhouse and a farmstand, tended by the kids? A horse to ride, ducks and chickens to tend.<\/p>\n

Maybe one or two of my sons would decide that they wanted the simple life as well… Stranger things have happened.<\/p>\n","protected":false},"excerpt":{"rendered":"

People say I’m a dreamerBut I’m not the only oneI hope someday you’ll join usAnd the world will live as one.–John Lennon I don’t think I said it clearly enough in the last post. What I want is not to have to be in The System anymore. I don’t want to have to worry about […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-128","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/sSTth-imagine","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/128","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/comments?post=128"}],"version-history":[{"count":0,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/128\/revisions"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=128"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=128"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=128"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}