Host in My Own Home

For the past 15 years, my life has been transformed. I had endured some very hard times before that, and I knew I needed a home of my own shared with people I choose.

I was excited about the idea of a home of my own. But while I wanted it I could barely imagine it. I had ideas--it was a heady powerful feeling to think I could control my life. I didn’t want to visit the house before we actually bought it. I was scared something would go wrong and I would be disappointed. I just believed my parents would make a good choice. They definitely considered my thoughts and feelings and made an excellent choice of house, garden and neighbourhood.

I didn’t move in for more than a month after we took possession of the house. I visited every day with DJ, working on getting used to a new environment. I recall that he was friendly and we had nice visits here, in the garden and playing games inside. I felt I was getting to know my new house. It felt like a club house at first.

I invited my friends to a housewarming in early July. There was almost no furniture in the house, so people brought their lawn chairs. It was a milestone day for me too. A new friend led us all to talk about being a circle of friends. I liked the party. It was a wonderful celebration of my new life. We talked about ideas and had good food and some swimming.

An early emergency with the water system led to lots of improvements in the house and outside. The kitchen tap broke and water was spurting as there was no shutoff valve there. I remember laughing while everyone ran around. All the work felt like a home invasion for several months. It was quiet and then an explosion of noises and people and machines. I came to observe but it was very stressful. We could not move our appliances in for three months so our time was split, with most meals at my family’s house.

I recall sleeping here for the first time. It was a calmer night than we expected. I bonded very quickly in my new house. I loved it because it was being constructed around my needs. I liked how quiet it was, not having to share with strangers, and everyone asking for my input.

I enjoyed feeling like a home owner, master of my house, so looking after it was rewarding. I liked vacuuming and cleaning the floors with a mop but not doing the toilets. I liked cleaning but L does a better job now so my efforts go to the dogs and garden and cooking.

Guelph Services for the Autistic became my housing trust. GSA and my parents and I signed the important legal agreements on 11 February 1998. GSA has promised that I can live in my home for as long as I want and need, and as long as I and my family can provide the money. The GSA directors have given me a sense of security as well as respect and friendship ever since. GSA has been a housing trust since 1997, dedicated to helping adults with autism to have their own homes. GSA has published a guide to its model of home ownership. Creating a Home and Good Life of My Own: Strategies and formal agreements developed by Guelph Services for the Autistic in its role as housing trust. Edited by Elizabeth & Gerald Bloomfield, 2008. Link for more information and excerpts.

We also managed to get some funds flowing to support me from October 1998. So I could afford to have some people working for and with me. Getting to know my whole family and then relating to me on my own is the best way to get started with me for all concerned. It is often good to share a walk with me and my dogs and then have tea and a board or card game or do a puzzle together. Some friends have also offered regular times for shared interests.

My dog Zach helped me to adjust to my new life. It was natural having him around so he made my new house feel like home. Zach accompanied me while we explored and learned our way around. He helped me make friends too. So did the new young dog Amy who joined our household about six months before Zach came to the end of his life. Amy was specially trained as a service dog and was my loyal companion from November 1999 to September 2011. For more than two years Amy showed my new young service dog Yukon how to support me and how our household runs.

The first few years in my own home helped me get used to having a life centred on my needs and strengths. A big part of the plan of having my own home was that I choose the people who share my home and who support me. These were all new ideas. I trusted my parents to be sensitive in choosing and training people to support me. But we are all glad that I have been able to communicate my own thoughts regularly with Supported Typing since 2000. I have continued to grow in understanding my choices and responsibilities. I am so glad to be in my own home. I have felt proud and grown up and not impeded by others.

From 2000 I typed a lot about living in my own home. In January 2001 I said: “I want to live in my house forever. I want to mind my own life as much as possible. I need to lessen dependence on my parents. I need people to count on.” I felt very comfortable and happy in my home by July 2003, when I typed this message for E to take to a conference of people interested in my good life:
People should know what a wonderful home I have and the things I do every day. I have my own home and it revolves around me. I know everyone who comes here is friendly to me. I’m sorry more people can’t have this. I have this because my parents are good advocates and they got me individual funds to help.

I am comfortable and safe in my home. It is a friendly neighbourhood. I have got out a lot and they see me and I deliver the Tribune newspaper. I like to greet people when they greet me. I try to smile. My dog Amy is my friendmaker. I love to walk with her. I have space for different things--like art, the computer and exercise, and my room is private. There is an apartment downstairs and three rooms upstairs and many bathrooms. My garden is heaven on earth. My bathroom sensor is a good idea and my alarm on the bedroom door. If I need help I can open the door. It was a real adult accomplishment to use my key to open the front door.

I’m happy with our progress. Well planned and not stressful. I grow into each step. I like to be a pioneer but it is too slow and scary sometimes. I might get the wrong people. I have lots of good people in my life. I think the conference people may want to know that I am interested in interviewing people to support me. Yes, it is most important that I get a say.

For a presentation in May 2005, I added more thoughts about directing my own life.
I think IF [Individualized Funding) has made all the difference for me. I might tell people that it is essential to get IF, because it is the only way to give people choices and options. We must have the freedom to have our own life, choose our own path and choose our own supports. I think we need to know we can provide for our own supporters, so we can choose good ones.

One of the key ideas about having my home is that I choose the people I share it with. We had circle meetings to talk about these ideas. I formulated my thoughts about what we have called homesharing and we tried out some plans.
I want to feel that the people in my house are here for me, not because the rent is cheap. I think it will be clear by the way they react to me and by the greetings and interactions. I think I will know after two real meetings and maybe a trial overnight or weekend. Homesharers should be interested in the environment so the house will be run by people who care like me. I want loving people. I want to be able to teach but not be a guinea pig. I like to think I can inspire others (24 August 2000).

Homesharers should be different from each other, but have some beliefs and interests in common. It is important that they be dear to me—that they devote time to getting to know me and my needs. They need some understanding and willingness to learn. Their life philosophies matter, caring about the environment and about others. Spirituality is essential. So is balance--knowing when to encourage and when to support. I think lifestyle is the key (24 April 2002).

The anchor homesharer idea is perfect--like a mother helping to keep things running but not being my only friend. I think it is important for the anchor to be older than me but not too old. Build relationship first. The anchor person (or even couple, but no babies!) must know who I am. Yes it's like dating before marriage. The anchor should be organized but flexible. Not like wardens. I need to be central to the house. I know I won't be the only one but the central one. Taking responsibility for my special diet is essential. It is like my hostess. It will be hard to replace E in that way but we must be ready to accept new ways. I like this conversation. It is fun to imagine my perfect anchor woman! (8 May 2002).

I need good homesharers and friends who listen to and understand me; I need more people to talk with me using S-T. I want them to ask me questions and I can answer them. I need some framework. I want everyone to know it is important that more people try to support me with S-T (12 February 2003).

Having a part-time homesharer this past summer, I felt like I had a companion and a friend. I liked having her live here because it felt like family. I liked knowing that my mother wasn’t the only person I could depend on. I became more able to see another person as a companion. I put myself in a position of control. I led the way more. I really liked being out in the community more. I did more and I felt good about it. She was a good fit. I need quiet calm people and lively ones too--lively but not loud! (27 August 2003).

In becoming a home owner I have learned the importance of being involved in my community. I vote of course and I have helped political candidates in local, provincial and federal elections. I have chosen to put signs on my lawn and deliver flyers.

For ten years I was local captain of Neighbourhood Watch which meant I kept my eyes open to be sure all is well in my neighbourhood. We recorded when new people moved in so we could know our neighbours. We welcomed them by going to say hello. My beautiful garden also connects people to me as they stop and admire it and we talk to them.

I am easily recognized around my neighbourhood because I always have one or two magnificent dogs. They are in my plan because I am in need of companionship and they hold me to the path. I can have more independence and dignity and need not be supervised all the time by other people. My dogs stay with me all the time. I feed them and look after them. I like being responsible. They know my signs and sounds and my moods. They bark when someone they may not know comes to the door. Yukon is very good at knowing if I am not well and stays close by. My dogs can call people if I need help. We can be in another part of my home for two hours or so. We can look after the house for short times. Holding on to my dogs helps my sense of balance and makes me more comfortable in new or strange situations.

We can go anywhere together, as we have a special card saying we are a licensed Public Access Team. Most of our outings are walks, but we also drive to banks, stores, malls and libraries by car. Sometimes we park on the edge of downtown and then have a good walk around the streets. We could also go on buses and trains. Only my running is not so good for them. Walking is important to me because I love to be outside. I need to walk every day and so do my dogs. I like to choose the routes and to be independent for part of the way. I need time alone to talk to my dogs. I say “Thank you for being my friends. I love you both”.

I think my dogs bridge the gap between me and the rest of the world. I mean to say that they alert me to the presence of others and their appearance makes others want to interact with me. I look after them and having to do that makes me stay more aware of traffic and hazards on my way. My dogs are my friendmakers. They are so cute and friendly, and people who might be nervous about talking to me are drawn to them. They are not the same as guide dogs who you mustn’t talk to.

Real friendship has developed with some of my former workers and my FAB. We have friends over for meals. Walking and running are ways I can spend time with friends on an equal basis.

I guess there is wisdom in doing things with others you have common interests with and friendship sometimes grows. I have learned that friendship goes two ways. It is give and take and, like a bridge, has to reach both sides. I help people with their causes and they help me with mine--like Bridges. I have been giving money to Africa and other suffering parts of the world.

I like to do things that are active but have meaning and to do them with friends. Being with people successfully is half about the activity and half about who I do it with. Being with my Bridges friends was harder at first because the activity was not so active. We just sat and talked and that took practice but there was good support for us so we grew into it. Sometimes an activity like walking or art or music helps us connect with one another.

I think I contribute to my community with the volunteering I do, and as a model and pioneer in creating a good whole life in my own home and neighbourhood. We invite people to come see my home. I think these contacts help people not to be afraid of me and other autistics. Starting Bridges-Over-Barriers with the help of G and E is another contribution. I have gone along with other people's "make work" activities for me but I think I have tried enough of these unless they are very well thought out and I have really strong allies. I have plenty to do now!

Now that I have my own home I take pride in being a host. It makes people feel welcomed when we fuss over them. I like to show them my house and the gardens and bake cakes, cookies and muffins sometimes. We have had guests from all over Ontario, Alberta, New Brunswick, Saskatchewan, BC, Ireland, Korea, New Zealand, United States and France. We also host various sorts of meetings.

We plan all the visits so I know what to expect and so do the visitors. It is good to know the plan and having a walk is usually a good part to include. Getting to know someone on a walk is easier for me than sitting still in the house. New people can be stressful if I think they might judge me or not appreciate me. I get nervous and then agitated and end up embarrassing myself with behaviours I can’t control. If we walk I have the dogs and a focus that calms me. My house is also good because there is a relaxing room near the living room so I can go and calm down but still hear the conversation. My relaxation room has green plants, a couch and my weighted blanket. Yukon will come and lie on my legs and that helps to ground me. Going to walk in the garden helps too, if I need a break.

Some people have stayed overnight or for a weekend or longer. My cousins came from New Zealand last year and I was excited and nervous. We planned time for G to take them on drives around the area and other times with me. I kept some of my regular routine which was good. My friend S from Korea has also been my guest three times. This year she was here for a week with her son aged 7. She likes to observe and take part in my activities and to talk about her therapy centre in Korea.

Some people who are thinking of having a home of their own have stayed over one or two nights to learn from me. My house has space for me separate from guests so it works very well. I might have been nervous about the idea of them staying overnight but when in my room all is normal.

Some guests come just for a visit and a meal. It is always a special day when my Bridges friends come for gatherings are at my house. Every visit is different. Some work better than others but I love to host people in my home. So we try and learn.

I need to get to know people before I consider them friends. I need people to respect me as a whole person. Don’t just pick out what you like about me. People may see what they want, not what the person wants. This gets difficult. I want people to respect me, all of me, and those who know me do. I need to be real. Being me is the best I can be. I try myself to be always polite. I always try to see both sides.