Cohousing-L Mailing List: children and caring for them/disabilities-long

[Elizabeth Stevenson (tamgoddess]

I sent a different version of this privately to Casey. I need to protect my
son's privacy for legal and personal reasons.

I know "hunkering down" sounds dreadful, and it was. All I can say is that I
was unable to articulate what was happening to my son, and was unable to
communicate with the people who most judged him, especially since I had no
reason that I understood about why he behaved as he did. I had to develop a
thick skin, and accept that some people, those without children especially,
would just not understand, and they would have to be ignored.

But he had friends here, which is more than I can say for school, so we
stayed. I also have another child who is very happy here. In spite of the
constant stress of having my son here, it was still worth it because there
are also people who have supported and nurtured me throughout his childhood,
and it has been a lifesaving thing to live in community, in spite of its
difficulties. I can't stress enough that the good of living here has far
outweighed the bad.

When I finally got a diagnosis, I was off and running. I have researched his
condition and have come up with treatments that have really worked; so much
so that he has lost his diagnosis, and now seems normal to people who don't
know him. He will always have issues, but he will likely live a normal life.

So our case has been almost exactly like the one in your community. The
advice I would give anyone starting to live in community together would be
to have in place a system that we have now, so that parents can talk to
EVERYONE in the community, and not just a parent group or people who are
"interested" in children. I *guarantee* that there are those who don't think
they are in need of information about the children, and they are the ones
who most need this sort of presentation. There have been many moments when
people found out something that changed their perception of a child and/or
his/her parents, saving us all years of misunderstandings.

The video had much more effect on the people in this community than anything
I had said over the previous 8 or 9 years. There's something about
television that people trust, even more than someone they've known for
years! Also, it's like a family; the role you play becomes something that
people use to identify you and they won't let you grow or change outside of
that role. I think this is what happened to me. The role of problem
parent/problem child was assigned to me and my son, and some people just
wouldn't think of us any other way.

As an example: a close friend of mine in the community was talking to
someone who doesn't have children, a close neighbor whom I like, but not a
confidante or close friend. He said to my friend that he thought I was
emotionally fragile. She laughed in his face and told him, "Liz has reserves
of strength you've never even dreamed of!" He had thought that my
willingness to share my feelings was a sign of weakness, when it is my
ability to reach out that has saved me.

-- 
Liz Stevenson
Southside Park Cohousing
Sacramento, California
tamgoddess [at] attbi.com
> 
> 
> A question for Liz Stevenson at Southside, if I may.  Regarding your son's
> invisible disability - it sounds as though for a long time there was no
> venue or forum for talking to other community members about your son and his
> disability.  Is this the case? I am interested in how it came about that
> other parents didn't have information about what was going on, and why the
> "hunkering down" which seems so, well, it just seems a hard and painful
> thing to do.  If you care to share on the list. I am interested.
> It is so similar to what has happened in our community recently.  In our
> case, the parents discovered a learning disability over time, rather than
> knowing about it before move-in.  Therefore, all community members were
> puzzled about the child's behaviors but didn't have much in the way of
> understanding what or why.  A video about the disability has had a powerful
> effect on parents and non parents alike and given us the gift of
> understanding and compassion.
> 
> Casey Morrigan
> Two Acre Wood
> Sebastopol, CA  95472

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