Parents - the new path must be created by us

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My profoundly autistic is a young adult. Recently I met up with a woman whose son was the first and only adult autistic person I remmbered meeting when my daughter was little. I asked her why he was the only one. She said it was because most of the other autistic people were in institutions. Institutionizing was the normal thing to do.

That explains it. There aren't good options out there for my daughter because she's the first generation of growing up into an institutionless Oregon. I know things will get better, bit by bit, as one activist parent takes a stand and makes some changes that don't work right and have to get tweaked. I was waiting around for things to happen but they're not because it's up to me... and you. We are the first ones on the front lines of life outside of institutions.

I hate having to lead or be an activist because it's easier to let someone else do it. I'm clumsy and awkward at it but I can't stop loving my daughter so I can't stop trying. I hope I'll be rewarded by creating some warm bonds with other parents who are going through this.

Doesn't institutionalization depend upon whether the individual can function without care and if not, whether that care (family etc) is readily available and able/capable of providing assistance?

Surely it's the families that are putting the affected person into an institution. (or the person may be checking themselves in).

or am I wrong?

Families were pressured not to get too attached to their kids because an institution was a better place for the kids and the families. It was how it was done, in the past. I think families didn't want to be the few freaky exceptions who kept their kids at home and I'm guessing that there were far less supports.

Now all kids are entitled to go to school but they had to be sued to get low functioning kids to be allowed in schools. This made it easier to have a day care for the kids. I guess that made it easier to keep the kids at home.

ouch... that's loading the whole equation isn't it.

My mom has always been quite the activist, at least on my small front, but she's never really accomplished much. She'll just argue with someone until they give up and let me slide through, which doesn't do me any good. If she can't convince someone, she'll bring out the artillery (my dad). He can annoy anyone into doing just about anything.

http://homepage.smc.edu/cramer_timothy/he.htm

Story "He" by Katherine Anne Porter sums it up pretty well.

OregonBecky...I have exactly the same view...I think it is up to us to teach society about ourselves and our children. I hope that when I move back to the states, I can quit my job (this is our intent) and dedicate myself to my son and having people change their views. In addition, I often tell my husband how awesome it would be to have a little town (at least) of our own, where we could run the place and families with kids with autism, etc...could feel they could live there, etc..and their children/adults accepted...

Ah, yes, I sometimes live in fantasy land...but we never know how we can change things.

PS - I remember meeting a very pretty little girl when I was young...she was the daughter of one of my dad's co-workers...All I remember about her was that she was pretty (we were about the same age)...and that she didn't really talk...But we went to her house and played for a long time...At the end, I remember my parents at some point telling me that she was sent to Venezuela and lived in an institution and that her parents possibly moved there as well...Now I wonder about her...There was nothing wrong with her...but then again, I have a feeling that she just had autism and was sent off to an institution...I can't ever imagine my son living that type of life...although, sadly, I remember my mother telling me she was going to send me off...

Hi whatamess

I'll post anything that I'm doing that moves us and our kids forward into better lives. Right now I'm just starting with a few things and don't know how well I'll manage getting some good changes but I have the rest of my life to work on this.