I have a family…
My father died 8 years ago. We became even closer after he retired and we did lots of outdoor stuff together – yard work, and especially long walks. My family made sure I knew he was not well the last year so it would not be a huge shock when he passed, and I helped him with remembering to take his medicine. We started to take much shorter walks before he died.
My mother is 87 and still lives in the home my parents built to retire many years ago. She still drives her car, brings me home for visits, and is a great cook. I love helping her in the house, and going out shopping, eating out, and taking things to the dump! Mom had her spine fused many years ago and cannot walk very fast or very far. My sisters have always said my Mom is the centre of my universe!
My older sister is 58 years old and works and lives in British Columbia. She is married with no children, and when she retires soon she will stay living in BC. She tries to come home to see all of us at least one or two times a year. As children she really spent a lot of time with me, and when I see her we are instantly close again. She takes me for really long, fast walks which I love!
My "little sister" is 55 years old and works and lives in Ontario, in Richmond Hill. I see her fairly often and she comes to my Mom's often on weekends when I am also visiting. When Mom is away she is the
person the group home calls if I need help, and sometimes I go to her house to visit. When my Mom passes away it will be my sister's house that will become my other home. She is married and has two children. My nieces are 18 and 19 – one is away at University in first year, and the other is living at home and is in second year University. My sister's husband is near retirement and he hopes to split his time between Canada and his village in Greece. My sister plans on continuing to work here in Ontario.
I have no other close family – the family members I was close to have all died, and the others either live far away and do not really know me, or they are very elderly.
I have a history…
Because of my father's job we moved a lot when I was a child – I had lived in 4 different towns by the time I was 13. I was really never in school – the rules were very different then. When I was 13 my parents were told that they had no choice but to have me move away to a "school" which was really an institution. When I became an adult I moved to another institution. I always came home for visits and holidays, even when the staff were not supportive of my parents and sisters having me visit. Many years ago I met a really great Social Worker at the institution who helped my parents convince the people in control that I could live with support in the community. My parents had retired and moved again and the SW arranged for me to move to a group home within an hour of my parent's home. The staff have been very supportive of me and I have a nice life in my home in a small Ontario town. I live with 3 other men who are getting older and have a lot of health problems and limited mobility. I am quite healthy and the staff try to provide me with lots of opportunities for physical activity and ways to feel useful helping people since I am good at a lot of things.
I have a full life…
I am 56 years old (turning 57 in April), and live in a group home in a small Ontario community. I have had a variety of jobs over the years, but now I am semi-retired and live with three other men.
My other home is in Southampton with my Mom.
A couple times a month I go to see my mom in Southampton .
Things I like to do…
- Sawing wood
- Building a fire in the fireplace or a bonfire and poking at it
- Giving people the wood I saw
- Animals (especially big dogs like labs, and horses)
- Shopping (especially groceries or for clothes)
- Watching people restock shelves in stores, or put produce out in the grocery store
- Emptying garbage pails and putting garbage out to be picked up
- Helping in the kitchen (cooking, cleaning, organizing, loading the dishes into dishwasher and unloading when done, drying dishes)
- Doing laundry, collecting laundry, putting laundry away
- Picking up sticks, wood debris, branches etc
- Collecting, separating and putting out recycling
- Serving drinks and food to visitors
- Having a pop and snack in the afternoon
- Having a nap in the afternoon on my mother's bed in the afternoon with the comforter my sister knit me years ago
- Sitting in my Lazy Boy chair at my group home
- Ice skating
- Horseback riding
- Bike riding
- Car rides
- Staying in nice hotels with my family
- Eating out
- Hot tubs
- Playing bingo with my family
- Playing solitaire with my mother and sister (with some help but I am getting pretty good at it!)
- Watching work men, construction equipment, garbage trucks etc
- Taking things to the dump
- Having a bath with bubbles
- Head rubs from my sister
- Getting massages
- Looking at family photographs (not on the computer!)
- Being part of the group as long as I have a job to do!
- Being told ahead of time when the schedule is going to change or something new is going to happen
- People realizing that I understand a lot of what is said, even though I cannot talk
- Certain kinds of music – Cat Stevens, Beach Boys, John Denver
- My special sleeping pillow I have had since I was little (only at home)
I have a voice…
I am non-verbal, but I use other ways to make myself understood. I will make sounds to get people's attention, I will go up to them and try to look them in the eyes (sometimes in ways that make people a wee bit uncomfortable). Sometimes I just stand behind people and think they know I need something – I do not remember that I can tap people on the shoulder to let them know I need their attention. For a lot of stuff I can just do it myself so I do not ask for help!
I have a fairly large sight word vocabulary, which I need to keep using or I start to forget some of the words. I can print many words, but I need someone to cue me to print, and sometimes need help remembering the first letter to print. I can also make some choices of words that are activities I like, but I need them presented to me in a non-linear way or I will just pick the first thing in the row.
Sometimes I get very stuck when doing things, even things I am really good at doing. When this happens I want someone to prompt me – "go ahead", "OK", "do it"… My family and friends have spent years trying to help me with this since I know how to do so many things without help, but some days are better than others.
Things I need people to respect about my dislikes…
- Being rushed if I have not been warned about what is happening
- People talking as if I do not understand what is being said
- People not paying attention to my ways of communicating what I need – people who do not watch what I am doing to pick up my cues
- Perry Como music
- Tags in my clothes, pockets that do not lay flat
- People moving my blanket my sister knit me without asking me
- Things being messy
- Eating a meal without full cutlery and saying grace before eating (at home)
- Eating eggs, bananas and "mystery meat"
- People who scream or make loud noises
- Sitting while people are talking and having nothing to do (I will fall asleep because I am bored)
- My fingers having rough spots, broken nails
- People touching my fire when they do not need to
- People sitting on my special fire bench when it is time for my fire
- People pushing me
- Not getting enough exercise
(My gifts, talents and the way I make a positive difference in other's lives)
I may be quiet but people seem to remember me once they have spent time with me. A man who knew me many years ago tells people about me and what he learned from me – he calls me "the professor" because he said he always knew I was listening and taking everything in, even when some people did not think I understood much of what was going on. Some people who I knew years ago or know me from the towns I have lived in still come up and talk to me in town, or keep in touch with my mother or sister. People often say how much my friends or community members have learned from knowing me.
My mom has good friends Lynda and Irene who like to walk. When I am home they enjoy coming and getting me – we do long, fast walks and then often I take them to Tim Horton's for a treat at the end of the walk and then my Mom joins us. Over the years my Mom and Dad have had lots of friends who liked my company and would come visit me when I was home, invite me over to their houses, or make special treats for me, since I have always appreciated good food!
In the small town I live in I have made friends with people who have worked with me, people who I worked for, and community people who met me around town. When I was in the hospital recently the man registering me at the front desk knew me from 20 years ago, and the nurse's aide who took me into surgery and looked after me in recovery knew me from the group home. I also know lots of people from my old paper route, my volunteer activities, my old literacy group, my men's group at church, and neighbours who I give wood to for their fires.
I will be spending more time at my sister's house in the future, and I have a few friends already there – her friend Heather, my nieces. When I spend more time there I will make new friends when people get a chance to know me.
I have also made a contribution to people's understanding of autism. Over the years I have often been the first person with an autism spectrum disorder that people have met. I have helped make people understand that you "cannot tell a book by its cover" and if they take time to know me they will see all the gifts I have. My family has always been very open in sharing our story with others since we all feel it is important for people to see me as an amazing person but also to understand the journey we have been on over the past 50 plus years since I was originally given a diagnosis.
(My dreams express my identity, my vision, and my purpose)
(The moments in my life that matter to me)
- Continue to be a full, important member of my family with frequent visits
- Continue to be involved with my community in the town I live in and Southampton, and eventually in Richmond Hill
- Continue to do physical things I like to do – bike riding, walking, sawing wood, horse back riding, other physical activities
- Find new or more physical activities I can do – more riding, swimming, hiking, working out at gym … maybe some new things I have never tried
- Continue to do household activities – cooking, cleaning, laundry, organizing, recycling, that I enjoy
- Each day have activities to do that help other people – volunteering helping neighbours, community, the other men in my house – I enjoy being busy and helping people
- I especially like to organize things – I love to watch people stock shelves in the store – I would be really good at helping in a food bank or some other place that could use my organizational skills
- Continue to be active and involved in my community as I enter my "senior" years
- Have sensitive understanding people in my life who take the time to "listen" to me
- Have a special vacation at least once a year with members of my family that involve staying in a hotel, eating out, doing tourist stuff!
What it takes to display these contributions…
- Lots of activities planned at group home since my friends in my house can no longer go out and do a lot of physical stuff with me
- Sometimes someone in my town drive me to my Mom's so she does not have to make the drive in the winter (group home staff sometimes does this)
- Sometimes someone in my town drive me half way to my sister's so she can meet us and have me visit at her house (she works and the round trip for a weekend of driving if she came all the way to get me and bring me back would be 12 hours!)
- Help me stay healthy – prostate medication, just had hernia repair, ulcer, dental hygiene, gastrointestinal issues and food intolerances and other things that may come up as I get older
- Help me be with people who understand how I communicate expressively, and help me not get frustrated
- Find me people in my community who share some of my interests – animals, walking, skating, etc
- Find me people in my Mom's town who can take me bike riding, walking, horseback riding, etc.
- Let me have a chance to do fun stuff that healthy men my age like to do – especially stuff that involves the outdoors or cool cars and trucks!
- I need to start getting used to having some of my home visits be to my sister's home so that some day when my mom is no longer here I will feel comfortable at my sister's home and think of it as mine too!
People Who Support Me When I Am With My Family…
|Group Home Staff||PRANCE Volunteers|
|PRANCE Riding Program Owner||Mother|
|Medical People||Sister (BC)|
|Linda (Mom's friend)|
|Irene (Mom's friend)|