Examining Life: Adults with Autism, Part 7-Friends and Family

Seventh in a series of what I think would make a fulfilling and happy life for my autistic daughter Lily.

Friends and Family

Lily with friends

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.

Choosing the Wine with Uncle John

Cousin Edie, Lily, Aunt Sharon

Lily Dancing with Uncle Harvey

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Examining Life: Adults with Autism, Part 3

Third in a series of what I think would make a fulfilling and happy life for my autistic daughter Lily.

Fun and recreation

One positive aspect  of having a young daughter who has severe autism is that I do not have to worry about her riding around in cars, DUI, drugs and the like. She does enjoy cars, though, especially this one.

One of her favorite things to do with Dad in the summer is to go for a ride in the Jaguar, often with a favored stuffed bear or plastic toy along for the ride. She raises the toy up into the wind and squeals with joy as if she were taking her friend on an amusement park ride.

Lily also enjoys walking the dog, skiing, walking in the woods, sailing, swimming, rollerblading and bike riding. She will walk at the mall after dark and in the rain; she does not usually shop, though she enjoys all the architectural detail on the various storefronts.

The activities at the group home she is in now are somewhat confined to mall visits, brief walks outside if the weather is good (her staff thinks it is cold if it is 50 degrees). No one knows how to manage to take her bike riding or roller-blading, forget skiing. It does take planning and effort and outings are not always successful. Her housemates do not prefer the same activities and there are not enough staff to be more individualized.

Swimming is something they manage well  because they take her  group to a pool for disabled people during the day. They cannot imagine going to the YMCA or a community pool or beach and would require 1 to 1 staff for safety, so they do not go.

It would be great if Lily could somehow be more involved in activities with the community. Her new house manager is working on this but the bottom line is cost of staff and finding capable staff.

I do not expect them to give her all the opportunities that we do on vacations and weekends. I would like her to participate in everyday recreational opportunities in the community that she enjoys and enrich her life.

Sailing

A birthday wish for James – Opinion – The Boston Globe

A birthday wish for James – Opinion – The Boston Globe.

This opinion piece in the Boston globe articulates our problem in Massachusetts dealing with funding issues for adults with intellectual disabilities. The young son is turning 21 years old and the friend  quotes the mother: “He has opened our hearts and minds to endless possibilities, but the future is scary. We want so much for him to have a full life with friends, a life that brings him joy and an ability to be a contributor to our community through real work and volunteering. Our vision for James’s future is not so different from other parents, just a lot harder to put together.’’

“To live a life in full, he needs a full commitment from the rest of us. Money is part of it. That’s reality.

My birthday wish for him is a happy and productive life and a world willing to pay more than lip service to help him live it.”

Happy and Fulfilling Life for a Person with Autism

What makes a happy and fulfilling life for a person with autism? What makes a life fulfilling and happy for a person without autism?

The theme of what it takes to make a happy and fulfilling life is not a new one. When my loyal reader asked what I think would make a happy life for my daughter Lily, I made a list of areas that I consider essential components of life to explore and examine.

  • Basic needs
  • Learning and growth
  • Fun and recreation
  • Joy
  • Spiritual
  • Creative
  • Family and Friends: Relationships

As I have written before in these pages, I am not satisfied with Lily’s adult program. I do not think it meets her needs in any of the above areas. My task, as I see it now, is to examine these areas and develop a program that does meet her needs. I have done similar exercises for my own life at times when I was unhappy or felt unfulfilled. The examination can be fun and very enlightening.

Remember that not getting what you want is sometimes a wonderful stroke of luck. 

—The 14th Dalai Lama