Autism

"Farm camp"---that's an idea I could get behind. Almost bought a pack of seeds on sale at the grocery store when Charlie and I stopped by---think I will definitely do so next time.

The place I'm hoping to get Kayla into here in upstate NY has a farming operation. 
http://www.thecenterfordiscovery.org/farms/ 

Wow Ecki-  that place looks pretty amazing!  My son's house does their own gardening and outside work, but I'd sure love to have him on a farm.  

People can make changes.
This is a very exciting blog. I know that if a person is given the right experiences that anyone can make progress. Never write off anyone.

 I remember a man in his 50's non-verbal with very disruptive behavior who was being considered for a very severe placement. A placement that would have put him in a more negative environment.

 All his life as an autistic he was institutionalize and didn't know how to relate to people. He had no affection(just growled like an animal.) and no one wanted to have contact with him. In two months time with the right behavior program he was laughing, cuddly and a favorite. Instead of swinging his one working arm at people he sat and entertained himself. The staff worked hard with him because no one wanted to see him transferred to the other place.

With improvement of some skills he also improved himself too. And this pattern is what I have observed repeatedly.

I also helped parents free of charge find appropriate schools for their children.

I remember a 15 year old child that had spent his life at an autistic school. He graduated and the public school system wanted to place him in special ed with 12 other kids with different disabilities. I told the mom that this would be the only moment in time for her to get the school system to pay for private school tuition. The district really didn't know what to do with him.

His mom had hired the LDA president to tutor her child but he was unteachable with those methods. The mom had met the special ed teacher and felt there was a big gap between her son's abilities and any other student in the class. The special ed teacher felt overwhelmed by the assignment.

He was non-verbal(never spoke) and walked on his knees. The  Somerset School allowed him to participate as a member of the community by working in the kitchen and garden. He did the same work activities at the same time (modified to his ability) along with other members of the school. He was an accepted member of the community and got to be around normal children with the goal of becoming an independent member of the community. In the classroom he was taught in a sensorial way. Colors were taught with light. Many activites incorporated sensory integration such as crossing the midline. Only one thing was taught at a time.

His teacher was Sunny Baldwin. Waldorf curriculum is very sensorial incuding handiwork(knitting etc),carpentry, music,art, el. (My other son attended a Waldor school). The mom didn't want to drive 1 hour each way. However after 3 months I received a phone call from her saying he was making progress for the first time. She was excited. The state of California paid for the tuition.

"Learning is interdisciplinary, integrating practical, artistic, and conceptual elements.[1] The Waldorf approach emphasizes the role of the imagination,[2][3][4] developing thinking that includes a creative as well as an analytic component.[5][6] The overarching goals of this educational approach are to provide young people the basis on which to develop into free, moral[7][8] and integrated individuals,[2][9][10] and to help every child fulfill his or her unique destiny,"
Waldorf education - Wikipedia, the free encyclopedia
http://en.wikipedia.org/wiki/Waldorf_education

"Somerset now offers a remedial teacher training course that broadens understanding of learning differences in children experiencing difficulty in school and home. The curriculum includes child assessment, child development abnormalities, practical skills in curative movement, appropriate response to behavior, and strategies for curriculum adjustment and teaching".

"Somerset School was founded in 1974 to serve children in need of special care. Sunny Baldwin, the founder and Program Director, has served hundreds of families, pioneered new approaches to meet the unique and gifted children who struggle in regular classrooms, trained dozens of remedial education teachers, and worked with physicians, therapists, and others to establish affiliate programs and expand the work. Charles, her husband of 22 years, joined the school as Administrator in 1997".
Somerset School
http://www.waldorfworld.com/somerset/

I tried to get Andy to help with some gardening. He did like wearing the gloves but said the blocks were "Too heavy!" And I did get Ryan to help with some wedding but he got bored rather quickly. Oh wait, they were just voicing what goes on in my head when I have to do heavy work and weed. ;)

I can't explain why I think these places are a terrible idea.  But I do.

Last year, an autistic woman blogged about these places in a much more responsible way than they are being discussed here.

Her first post was called, The point of intentional communities is that they are *intentional*..

To quote the relevant parts:

Bittersweet Farms is not an intentional community.

The point of intentional communities is that a person *intends* to live there. If they decide they no longer want to, they can leave. They make decisions about their own lives.

If a person is placed into a community by someone with greater power, forced to stay there unless the person with greater power moves them out, and has important decisions about their life made by those people in power, then they're not in an intentional community. They're in an institution.

Yes, even if it is on a farm. Yes, even if they are doing work on said farm.

And no, I will never willingly consider such a living arrangement for myself, even if I think intentional communities have the potential to be really cool, because Bittersweet Farms, and the Sacramento-area farm-institution in the very early planning stages are not intentional communities.

[...]

At most I can only realistically imagine an autistic getting a token role in this planning process. There's no way we can get a majority. Even if we did get a sizeable minority, the power structures will still be the same, and they're the most dangerous part of the whole thing.

Googling the name of the person in charge shows that they're a Rescue Angel and that they were somehow involved with the Green Our Vaccines Rally. I know what that means from an autism-science perspective, and I'm not happy with it, but I don't know if it would have any significance from an institution-masquerading-as-pseudo-utopian-community-planning perspective.

Her second post on the subject is here.

I just spent time at another residential-farm/institution's website reading the rationale for why agricultural life is good for autistics.

[...]

SAGE Crossing's rationale/justification for concept has no similarity to my experiences, and clashes horribly with my worldview in general (that we should create a culture of inclusion). Theoretically a rural setting might be "safer" for autistic-me. (But is it for someone with my chronic illness? I think me-with-cystic-fibrosis is far better off in a city with nearby medical facilities.)

And there is no way that I'm going to live in a farm just because I flap my hands. People who flap their hands are allowed in cities too, for the record. And if all people who annoyed other people were sent out to the countryside, there would soon be so few people in cities that they would no longer qualify as cities.

Also, what the hell does needing to be anesthetized for routine medical procedures have to do with needing to live on an institution-farm? It seems like SAGE Crossing is just throwing out random stuff about autistics and assuming that people will infer we can't be included in society based on these disconnected, irrelevant things.

I would like to ask why you don't deal with these issues in the same manner that Danechi does.  It seems to me that she thinks more critically, as well as more accurately and responsibly, about these places than you do.  She has put into words things that I could only describe as a vague nausea and feeling of these things being wrong at the core, as well as being my worst nightmare institution-wise (far worse than nightmares that call up images of totally rough and obviously degrading treatment).

When I say wrong at the core, I mean that the problem is not a superficial issue.  It's not whether some autistic people might like to live on a farm while others may not.  (My autistic father grew up on a farm and his farm was nothing like these ones deliberately created for autistic people.)  It's about the power structure.  And I am not equipped to explain what, precisely, is wrong with it.  I don't have that kind of language.  I just know it's terribly wrong, and become quite alarmed when I see writing by people who cannot appear to sense that at all.  Especially on a site that is supposed to be about working for real change and social justice -- which would require far more critical thinking about these matters.

If you want to talk about intentional communities, though, LeisureLand (another page, with photos, here) is a good example of an intentional community created by and for autistic people.  And it is nothing at all like these more institutional versions of the same things.  The institutional ones have an alluring form (at least alluring to some people) but a terrible substance.

At any rate, on a place like change.org I am highly concerned about posts that seem positive or neutral towards places as destructive as this one, and that appear to take places like this (and possibly group homes, etc., too) as inevitable, or inevitable for people with a certain level of difficulty doing certain things.

Amanda, there isn't much information available to families to help them make the transition from school to adult life for their child. Sharing information about possible programs and getting feedback from people like you is so important. Help everyone understand what options are available. We don't know.

It is inevitable that my brother lives with my 87 year old mom who is too old to meet his needs. At the moment in the state he lives in we don't know what else to do. The only option in that state is to live with your relatives.

I am glad you made the distinction between intentional and not intentional places to live. It is important to be in a place where you can leave if you want. Otherwise like you said people are institutionalized. You taught me something new.

In California  Alta Regional asks the child at age 21 without the parent's knowledge if they would want to live on their own.(Including the severest autistic and mentally retarded.) Some parents are upset (that it wasn't the parent's choice) that the state now owns their child. So I am not sure but if the state owns them then they probably can't leave.

But as I mentioned before my brother refused services from the state. He had his own picture in his mind of what he wanted out of life. I was fully supportive of his decisions. I felt that after his difficult childhood that he was entitled to happiness on his own terms.

Obviously everyone wants different things in life. That is why there should be alternatives without power structures exerting power over others- forcing people to do things for the convenience of others.

They set these programs up on farms. They want the person they are helping to be in a totally new setting to learn new things. Perhaps the agency was given farmland.

Everybody has different needs and different dreams and goals. There is no one answer for all. Unfortunately most people have little information to make a good decision  because there is no safety net of support services for adults. Each time everyone is forced to reinvent the wheel and figure it out for themselves. 

I don't know if this is a helpful response to your comments. You make some good points worth considering.

I hadn't heard the term "intentional community" before, (perhaps as I live in Greece which is a wasteland when it comes to disabilty rights). I immediately assumed that the communities were intentional, ie, this is what the person in question wanted and chose, and that transition from one service to another was provided in a way that best suited the individual. Always be careful of assumptions!

I was sucked in by the word community, which inspires a vision of people working together in the a close knit, caring community (also using the word SAGE is appealing, with connotation of wise, and somehow ecologically sound - it's great advertising move). The idea of a smaller community is also often believed to be safer, but this is not always the case. 

I must also remember that this idea of a small community is something which appeals to me, not necessarily my son.

My one reservation about the community idea is that it is a form of segregation, which is ok if the people living within the community prefer to be living in a more isolated setting, certainly not if they don't want to. A better option may be to "create" a community where someone already lives, through better intergration and the provision of supports within that setting. Although this is much easier said than done. Maybe it could be achieved through a "microboard", particularly for people who have higher support needs and more limited communication?

Unfortunately, talk of communities and microboards is still theoretical here in Greece, so I'm looking for ideas for what may work, for my sons future.

I've heard all sorts of things about intentional communities in the past (hippie communes, Amish or Mennonite communities, monasteries), but this is the first I've heard of intentional communities for disabled people. It doesn't really make sense to me that disabled people would want to live in them because we're disabled. I wouldn't. I would want to surround myself with people who share my values, not my disabilities.

I think this is a great idea.  A friend of mine has a son who is currently in a program at New England Center for Children. I wonder if they may look in to starting a program like this there.  Does anyone know what tuition is like at one of these farming communities?  http://www.necc.org