Why
I do like to participate in group meetings
Three years ago I took part for the first time in self-help
group meetings. I already knew, through my parents, that
I was going to meet other people in whose family there was
someone with DS. Nevertheless, from the very first moment,
I was completely surprised (and still am) when I found out
how many different experiences are possible when growing
up together with our “special” brother or sister.
I
never thought I’d hear so many different life stories
so linked to what I had until then considered just my own
personal experience. Up to that moment I hadn’t known,
or had never had the curiosity to try and understand, that
there are lots of ways to face the 1000 different problems
(of any type) coming from having a person with DS in your
family. So, with a mixture of both curiosity and the desire
to tell what my feelings are (bad and good), I participated
for the first time in the group. This was a new experience
for me and not easy to “carry over” to other
situations and therefore more precious due to its uniqueness.
Maybe at the start I was a complete stranger in that environment;
I was living a series of personal relationships (friends
and partners) in which my brother had never had a real meaning.
Moreover, nobody had ever asked me in which way Giovanni
could influence my growing up (or I his). During my adolescence,
I had never wanted to open my heart to people close to me.
I never wanted to tell why I thought that something could
be wrong or right for my brother and me, or even tell of
any meaningful episodes for both my family and me.
I
also reckon that if I had been able to participate in the
self-help group meetings some years earlier, (and it was
just a coincidence that I read about the groups in the Italian
Down’s Syndrome Association Newsletter) I would probably
have reacted in a different way. As soon as I knew that
some young people, slightly older than me, had decided to
create a common but unique space in which everybody could
tell about his/her experience with the spontaneity and the
freedom which seemed impossible in other environments, I
understood that I had to seize the opportunity and join
them.
In
fact, one of the main characteristics of these self-help
groups is the total spontaneity that allows everyone to
join the discussion just on those subjects in which he/she
is really interested in or when he/she thinks that is right
to explain something about his/her experience to the others.
I still have the curiosity, just before starting a group
meeting, about how in other families one particular situation
can be managed. I often notice that what makes my own experience
different from those of other people in the group could
be my education, or even the kind of mentality which has
surrounded me during my adolescence. Therefore I am convinced
that joining the group and sharing different point of views
has been a really useful thing.
It
is very probable though, that since I have started attending
the meetings, I’ve developed a longing to have an
idea on what happens in other families or how other brothers
and sisters behave, etc. Personally, as I have already told
during the meetings, I didn’t consider having Giovanni
as a brother a big problem. Nevertheless I have always thought
(please tell me if I’m wrong) that I shouldn’t
demand that my friends or partners listen and discuss with
me some of the aspects that I find very easy to talk about
within a self-help group. Actually, joining the groups has
made me more able to tell so many intimate things that I
wouldn’t have told to anybody else before. I’ve
found it useful to be listened to by people who share similar
experiences and are therefore closer than those who may
only be informed about DS by media such as cinema and television.
I
have never regretted my choice to join self-help groups
because I know that sharing and confronting experiences
is very useful. It makes us better people and prepares us
to face situations towards which (and I’m talking
about myself) we could not otherwise be prepared.
Luigi
1st March 2003
Our experience
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