In past posts I've talked about my fantasy of communal living for families who have kids with disabilities. The happenings at L'Arche are always on my radar. I also found Noah's Ark in Florida during one of my web surfs.
Both have a lot to offer. The problem is that they are for adults with disabilities who live away from home. My real interest is in a place that is created for parents and kids to live together in a community of like-minded people. Hence the commune image that won't leave my mind.
When Daniel's big sister was a baby, I got involved with the Waldorf education program in my city. I hung out with a group of moms who were part of the original initiative to get a school started here. I loved it.
Waldorf living means (in part) no television, specific types of toys that emphasize natural materials, and a focus on play for the young child rather than academics. It's tough to live in the real world and maintain such a strict lifestyle, but worth it if you can manage.
I incorporated some of the ideas I learned in my Waldorf days while Melody was a toddler, but it gradually went by the wayside and my kid watched Disney movies and played with Barbies like everyone else in the neighborhood. I didn't have the commitment it took to carry it out, and her father was not really enthusiastic about wooden toys and the absence of cartoons. (Still, until just a few months ago, Daniel slept on the lambs wool that I bought from one of their catalogs, and our kinder harp is in the living room next to the piano.)
Anyhow, 16 years later I discovered that Waldorf has a program for kids with disabilities. The one that intrigues me the most is this one. The downside to the program is that it's a residential school, not an intentional community that would include families. I like what they're doing, though.
I guess my vision is of a L'Arche/Noah's Ark/Camphill School that is made for families. One of the hardest parts of raising a child with multiple disabilities and unique medical needs is finding good help so that it's not all on a parent's shoulders. The best times for my family are the ones when my mom and dad are with us. We share the work. We enjoy Daniel without getting burned out or boring him. It's because we are doing it as a team, and everyone is fully invested. (And we love him more than life itself).
My dream is to lessen the fear of "what happens when I die" by finding or creating a place that eliminates the isolation that exists in our separate houses with our friends and family spread out over the map. For me, sending Daniel to live elsewhere is unthinkable. I understand that it's necessary for some parents, and I appreciate the agony involved in making the decision.
How beautiful it would be to live our days enjoying our kids with the support that assisted living gives. Forget about agencies and paid care providers. I want people around me who are in Daniel's life not for the money, but for the relationship.
Idealistic? Probably. But I really do think it's key. Right now I don't know where to start to make this dream real other than by giving it lots of time to incubate. Oh, and put it out there so that any of you reading who share these thoughts and want the same things can add your .02.
3 comments:
I wished that I has 2 cents to add. This is our absolutely greatest fear. I know of no place here which provides what I need for Adam. He has a substantial trust and although we have left all our property and stuff to our daughter, we wrote into the will that he has a "life tenancy in our house." The care is the variable...who will be with him. All we trust is that the universe will bring those people into our lives. The scariest of places for us to go in our heads.....
Amazing how much trust one must put into the universe. I am glad that you've put this "out there," Carolyn. Every year that goes by, I feel saddened about the lack of a great school for Sophie here in Los Angeles, and how I settle for so much less than I truly want for her. Maybe we should just commit to putting this out there, over and over. I know that I will.
I think it's a wonderful idea. I'd love to find and participate in a community like that. I have NO idea how to start one though!
The closes that I have right now is a few friends in the area who also have children with special needs. We often get together because we are comfortable with each other's children and we can be "real". I am certain that if the worst did happen that one of those friends would step in to help take care of my kids. It makes it a little easier to know that we have someone who already knows the girls and who would care for them.
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