For folk in WNY and anyone else who could help me

[Guest guest]

When I began this task of living with two children with autism,

I knew next to nothing about the environment, about the purity of our

water, the quality of our foods, the toxic assaults our kids put up

with in the forms of mercury exposure, arsenic exposure, pesticide

exposure, etc. I assumed that everything was good, and if it wasn't

good, someone would fix it, right? Almost eight years onto this

journey with autistic children who no longer lay on the floor and

scream all day, no longer have constant seizures, who can attend for

more than a few minutes at a time, I know that all the work I have

done up to this point has been VERY worth it. I know about the MTHFR

gene. I can protect my other children who carry the same gene, but

were never exposed to the environmental challenges and have developed

normally, but are at risk in an increasingly toxic environment. I

have learned how to take care of myself better. I buy whole, organic

foods. The whole family drinks purified water. I learned to cook

gluten and casein free, even on the specific carbohyrdate diet, and

discovered that our family carries the celiac gene that I would never

have known about except for Noah. The kids have been chelated and my

one son, Anluan, who was having so many seizures a day that he was

hardly functional is now running around the yard for hours at a time

enjoying a sunny day without the need for a helmet.

But if there were one thing I regret, it is this. I regret

that I did not have these children when I was twenty years younger.

I regret that I grew old too soon and too late wise because I

sometimes think that all the good I have done will be undone as soon

as I can no longer do it all for my children. I have learned so much

and yet, it is all resting on my middle aged back to be able to keep

doing all this for my sons when they are adults and that almost no

group home would be able to provide them with this kind of care. In

that way, I have approached the future with a sense of dread and

almost despair, knowing that as much as I do today, if it all rests

on me, then someday, I am going to have to give up this task. Up

till now, my only other option was to try to live to be one hundred

and twenty and look like Jack Lalane, so I can outlive both my sons.

Honestly, when people would ask me, that was really my plan up until

recently!!!

However, in the course of meditating on this problem, I came

up with a different solution. Why couldn't we create an organic,

back-to-nature ecovillage with communal dining where our kids could

be provided with day habilitation or job training learning how to

care for the earth. We could have group homes in our ecovillage for

our developmentally disabled children? Camphill Village of Copake,

New York does something similar and receives reimbursable money from

the state and federal government for the care of these adults with

developmental disabilities. My kids could be eating the organic

fruits of their labors? Saddle Rock Ranch does something similar in

Long Island, New York and provides horse training, fishing and other

outdoor experiences in the form of blended day habilitation. I

started talking to permaculture specialists locally and have

discussed how such an enterprise could be put together so it was most

labor saving, off the grid and easily maintainable once set up and

have talked with a chef from a Quaker retreat who cooks for hundreds

of kids with allergies and how to set up menus that would be all

natural, healthful and work for almost everyone. I researched The

Ecovillage at Ithaca and the cohousing concept. In my ideal world,

if such a project were set up right, I could buy a share in the

ecovillage and live near my two sons and continue to watch out for

them. And my sons could spend their days in the sun, living and

dining with normal people, eating organically and caring for the

health of the earth. Almost ideal?

There was only one minor problem with this whole scenario.

Where was I going to find the money to set up such an ecovillage? I

have been talking about this concept for months. I have gathered

together people who do not have disabilities who would be interested

in buying a share in such a project if it meant that they too could

live in such an ecovillage and be part of such a healing experience,

but most families with DD kids are financiallystrapped so the concept

was good, but the money was still an issue for the folk who really

need this service. Then, last month, while talking with my son's

service coordinator, she told me about a new funding source, OPTS:

Options for People Through Services. I signed up and I sat through

the meeting last night and learned that if I could get enough people

who felt that this would be the preferable option for their adult

children, if as parents we could come together and hash out the

presentation of such a project, create a five year plan with kids who

are going into group homes now and kids who will be aging into group

homes later, we could buy the land, set it up and create something

grassroots and unique. We would need a not-for-profit plan in which

we would initially set up under another service agency which would

budget the money for this project, but the project eventually could

have its own npo status. The huge sum of money money this might

entail to start up would not necessarily be an issue if we had enough

parents asking for this service to be provided.

This is how you can help me! I need to set up a website for

people to visit to get an idea of what we are planning and a

moderator for a yahoogroup where we can continue to meet and put

together our best brainstormed ideas on this topic. I need to have

this letter circulated through as many groups as possible in order to

find the families in WNY who could be served by an ecovillage for our

adult children with developmental delays. And I need to find a local

service agency which would be willing to help us put together this

plan as a proposal to OPTS.

Please help me if you can to create a vision of an ecovillage

for our developmentally delayed adult children. My email is

lyjah@.... Our yahoogroup will be at

Earth_Hope_Ecovillage

[Guest guest]

>

> This is how you can help me! I need to set up a website for

> people to visit to get an idea of what we are planning and a

> moderator for a yahoogroup where we can continue to meet and put

> together our best brainstormed ideas on this topic. I need to have

> this letter circulated through as many groups as possible in order to

> find the families in WNY who could be served by an ecovillage for our

> adult children with developmental delays. And I need to find a local

> service agency which would be willing to help us put together this

> plan as a proposal to OPTS.

Dana,

Elaine Gottschall established her own foundation about a year before her recent

passing.

Her dream was to have a residence where families could stay for thre weeks while

the

children got started on the diet and the parents learned how to manage it. The

progress

would also serve as research on the diet since it would be conducted under close

supervision. I have no web experience to offer you but wish you every success in

your

worth endeacor and have the utmost admiration for your deication and

observations.

Carol F.

Toronto, Celiac, SCD 5 years

[Guest guest]

Are you thinking that part of the ecovillage's self sustainability

could be offering the ability to work with people on specific

carbohydrate diet? Given what other ecovillages do in the way of

conferences and workshops, I suppose once it gets going, anything like

that could be an option.

Dana