Seventh in a series of what I think would make a fulfilling and happy life for my autistic daughter Lily.
Friends and Family
I am trying to find families for a new and exciting home for my daughter. We are planning a home and day program that will meet the specific needs of each individual and lead to a happy life in the community.
Finding compatible parents is the first step because we all will need to be actively involved for this to work. We want to be part of her life and know and like the families of her housemates.
Finding collaborators to provide the services who share the goals and that we feel we can work with is also paramount. We have successfully brought together two groups who are committed to the same goals that we share and an academic center devoted to improving life for adults with autism.
Because there are not many females with autism compared to males, finding compatible house mates has been more difficult. We are planning a mixed male/female house. I am not sure how much it matters to Lily who she lives with because she really bonds with her staff more than with her peers. Maybe if she lived with a young woman who was verbal and they shared the same preferences for activities in the community, perhaps she might make a relationship with a peer.
So far Lily’s female peers have been either not interesting to her or a painful annoyance. One of her current housemates screams high-pitched loud protests when she is anxious, (which is frequently), and Lily does not tolerate that well. In past situations, Lily’s aggressive behavior has disappeared when an offending noise-making female was moved to another house.
This is one of the many reasons we are making our own program; the current Agency refused to listen when we asked them not to put this loud woman in the house with Lily because Lily had already had problems with her at the Day Program. When they refused to change their plans, we asked that Lily and the woman not be in the same group at the Day Program; so far this has not been achieved.
Lily does have friends who are family friends and she can be very social with people that she knows accept her as she is and do not expect her to be like everyone else. Staff who care about her will see the side of her that we see, the caring loving side, not the monster side.
My hope is that when Lily is comfortable in a place with staff who care for her, accept her and meet her needs, she will blossom again and we will have the daughter back that disappeared when she turned 22 and left her school for the big bad adult world.
In the meantime, when she is at home with family and friends who love her and respect her she is generally happy and less anxious. Thank you, family and friends, for being there for her and for us.