The belief in the inner beauty of each and every human being is at the heart of L’Arche…and at the heart of being human… We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.
-Jean Vanier, Becoming Human
I believe my biggest fear in life is what is going to happen after my death – happen to Ashley.
Ashley has made great strides in her short life. Doctors said she wouldn’t live – then said she wouldn’t walk – then said she would never communicate. From infancy, they recommended institutionalization. As my regular readers know, those doctors were very, very wrong. But, Ashley will need support throughout her life.
Just as Helen Keller needed assistance, so will Ashley. So, my challenge is figuring out how to ensure that assistance even after I am no longer able to provide it myself.
My experience with run-of-the-mill group homes is not good. Even under the best of situations, I don’t know of any group homes that are equipped or knowledgeable enough to support a person with deafblindness. My oldest son has tossed around the idea of establishing a group home, a group home done right, when he graduates from college. But that idea is mingled with a lot of other dreams he has, so I can’t count on that happening. And, I often feel that it is selfish of me to expect him to continue to care for his sister after I am gone. I know without a doubt that no one could care for her better, and I do pray that even if he chooses not to be her lifelong caregiver that he will at least stay very close to her.
I was offered a glimmer of hope last week when I read an article about L’Arche, a group that enables people with and without disabilities to share their lives in communities of faith and friendship. I’ve visited their website and like what I see there. I plan to explore this option a lot more, but I’m interested if any of you know of or have heard anything about L’Arche.
I know Ashley is just 14 years old, but the time to start planning for the future is now, not later, in my humble opinion.
I understand. I have these ideas in the back of my head too. All of them...like wanting my oldest to be responsible for my youngest in the event something happens to both parents. But also not wanting him to suffer. Wondering how high functioning Jonathan will actually be when he becomes an adult....
ReplyDeleteThe time to start planning is definitely now. The Blue Jay is 16and my mind often strays there although it's very hard to know just how much she will need.
ReplyDeleteAlthough she should do well in a supported aparment situation (21 hrs of support per week should work if the person is in a work situation Mon-Fri)I love the idea of L'Arche for her. We literally live down the road from a large L'Arche home and their Appleworks candlemaking shop.
It's more than a living situation; its about being in community and I know the Blue Jay would love it there. I would strongly urge you to check them out but if it's anything like here .... 5 year wait list for L'Arche and they they don't take whose next on the list but who they think is most in need of the spot.
14 is the time to start planning for sure. I think about this a lot as well.
ReplyDeleteI know my parents are concerned for my sister who is special needs and has two children. They have sacrificed their own security and retirement to care for her and her children. There are no easy answers. Therefore, I too am concerned for my sister so I can understand the role your son is struggling with. It is very complicated and intense as a sibling, I think.
As a parent I worry about what I can secure for M in her future. I try to tell myself I can't control everything but it is hard.
This site sounds interesting.
Nice article . . .
ReplyDeleteThanks for sharing with us. . .
I have known people who were involved with L'Arche since I was in college--a little foreshadowing of future interests, I think. There are other co-living situations as well, such as Camp Hill...
ReplyDeleteCamphill I know of - at its best it offers people a place in the world where they are valued and seen as individuals (I've seen this happen). At its worst it's just another version of sending 'different' people away to a separate place. My sense is that different Camphill places vary and that its an organisation which includes people trying hard to do really very radical things - and others who think that what they do must by definition be good simply because they are Camphill.
ReplyDeleteAn educated guess would be that L'Arche may be the same.
I strongly suggest also checking out www.plan.ca (Plan) who try hard to do something very different. They attempt to maintain a network of ordinary people around a person who needs this - if you like passing your responsibilities on to a wider network of people who care personally about someone's welfare.
Plan is in Canada - if I remember right you are in the USA. Keep an eye on Inclusion Press (http://www.inclusion.com/) - particularly look out for events like the Inclusion Institute - which brings radical and interesting thinkers together.
(PS: I'm posting more anonymously because professionally I don't want to be seen as commenting on Camphill and Larche - but I'm a regular reader.)