Kristin Kilmark is a young women with autism and cognitive disabilities. Autism is a central nervous system disability which affects social and sensory processing. Persons with autism experience great difficulty in anticipating and responding to a constantly changing world. The world of social relationships is an especially tangled place. Since early childhood, weaving with various fibers has always helped Kristen stay centered, anchored and calm in the world. Now Kristin has created a line of hand made fringed trivets from natural hempen braids. As she chooses a colored glass bead to accent her products, Kristin wants people to know that there are four brightly shining stars that she seeks for guidance.

Independant Living
Kristin’s dream of living in her own home began to come true when her family heard about a co-housing community planned for an area of Madison which included 300 community garden plots and was on a bus line. The housing was developed by the Madison Area Community Land Trust which specializes in developing permanently affordable housing “as if everyone mattered.” Kristin’s family jumped at the opportunity
to reserve a unit for Kristin.
Kristin benefited from a program called Movin’ Out, www.movin-out.org, a non-profit devoted to individuals and their families who are interested in expanding the housing opportunities of their family members with disabilities. Kristin’s family’s conviction that she should have the biggest life possible was key in moving K’s housing agenda forward as early as they did. Instead of college, making sure that Kristin had a permanent, safe and accessible home was the most important legacy her family could provide for her.

Kristin’s community is green built and contains 20 affordable and 10 market rate condo units. Kristin has an ultra-affordable accessible unit with a roll-in shower and level front and back entrances. When Kristin was considering roommates, Kristin and her family decided to give extra weight to the possibility of a roommate who would benefit the most from Kristin’s accessible unit. Kristin’s roommate has Multiple Sclerosis and benefits immensely from the natural light, the friendly neighbors and from the accessibility features in Kristin’s unit. Many of Kristin’s neighbors are first time homeowners who value inclusion of diversity in their condo association. Kristin and her circle of support are educating her neighbors about autism and they are all learning about how to be effective as friends and neighbors to a person on the autism spectrum. Kristin is an expert snow shoveler and uses her formidable yellow steel shovel to ‘get under the snow” on her neighbor’s paths and driveways. Neighbors are usually amazed when Kristin has shoveled, because their walks are shoveled down to the pavement.

Sensitive to smells of all sorts, Kristin does laundry virtually every day. No piece of clothing can be worn twice without washing it to adjust the ‘smell.’ Sometimes piles of laundry become a matter of contention between roommates as well as between Kristin and her roommates’ staff, but this issue could occur between almost any roommates.

Kristin’s community is designed so that each home’s porch faces out towards a common courtyard. Neighbors share a soup and bread supper twice a month, rotating among members’ homes. Kristin’s circle of support usually attends community potlucks and Kristin’s guardian and mother monitors the community listserv for issues of concern to Kristin. Kristin’s mom and dad bring value to the association in the form of specialized knowledge about finance, energy conservation, group process and board membership in the Land Trust, the developer of the condo community.

Kristin has three pieces of art in her living room that show her love of horses. She loves her big windows to the west where each evening when she is home, she can view a beautiful sunset.

(a sidebar on Kristin’s mom’s hesitation about K living in her own place…Like all parents of a child with a developmental disability, Kristin’s parents have to balance the temptation to make certain that Kristin is safe with the desire to open up the biggest possible life for her. In thinking about having Kristin move out at age 23, Kristin’s mom experienced all the dread and fear of ‘what if’: what if it’s not safe, what if she is lonely, what if she doesn’t adjust? But she also realized that her daughter could not take the next developmental steps, could not grow without the accompanying possibility to fail. Kristin, like all of us, could simply not learn certain skills nor have certain experiences in life without moving out of her mother’s home . Kristin’s mom also knew, given how difficult change always is for a person with autism, that the sooner Kristin established a home of her own, the longer a period of time there would be for Kristin and her family to relate as adult daugther to mother. Realizing the near certainty that mom would die before Kristin, mom wanted Kristin to be well established in her own home and in a network of community relationships long before that event.

The plan is working well. The two women go grocery shopping together each week. Kristin makes her own list and is learning to cook some simple foods. Keeping her new home tidy seems to be less of a struggle than it was in her family home. Scheduling medical appointments and resolving conflict seems much smoother, perhaps because Kristin has a more independent life and a secure network of relationships.)

Bus Transportation
Kristin has a special affection for and knowledge of the bus system of her home city. She knows the age and style of each bus and which drivers are especially ‘nice.’ Kristin can decode the elaborate bus schedule and advise beginning users about the schedule, the routes and the advantages of public transportation.

Kristin knows how to use the bus system to go just about anywhere in her home city. She has learned a great deal about appropriate social interaction from riding the busses. Bus transportation has also offered Kristin’s team opportunity to practice safety lessons.

(Story Kristin wrote about Metro (won a prize for the essay)

Horse Therapy
Like many people with autism, Kristin has generally low muscle tone (hypotonia) and relatively loose ligaments, causing poor balance and coordination. To strengthen her muscle tone and help build her confidence, Kristin has been riding at Three Gaits, a therapeutic horseback riding stable, since she was nine years old. The teachers at Three Gaits use specially trained horses to help folks with various disabilities. From weekly lessons with lead and side walker volunteers, Kristin has become an expert independent rider. She can sit or post the trot, she can bridle and saddle her horse and she enjoys showing in beginning equitation at student horse shows. Her riding has been a lifelong source of pride for Kristin.

For more information about Therapeutic Riding, see www.3gaits.org

Education
Like many children with somewhat higher functioning autism, Kristin started out with neurological anomalies and behavioral issues, but no definitive diagnosis. ADD, PDD-NOS, cognitie delays are all labels that have been attached to Kristin at different times. Because she was born ten years before the description and criteria for Asperger’s syndrome entered the Diagnostic and Statistical Manual, Kristin and her family have often had occasion to educate her school providers about her idiosyncracies. As Kristin’s education proves yet again, each child on the spectrum is different and requires imagination and sensitivity in education and socialization design. All of middle school and her first two years of high school including terrible struggles over homework, especially in math. Once the autism spectrum disorder was clear, Kristin’s team redesigned their approach to the remaining years in high school. Realizing that Kristin was a ‘student of students,’ the team searched for ‘kind’ open-minded teachers in mainstream and even academically motivated classrooms who would allow an ‘auditor,’ Kristin, in their room. Homework, papers and tests, the sources of anguishing anxiety, were all removed and Kristin was able to absorb a great deal in a more relaxed environment. The evening struggle with homework, so terrible and full of family tension, was over and the whole family could focus on enjoying each other. As a result of the lowered anxiety that came with the elimination of certain tasks, Kristin’s interest in most of her subjects increased many-fold.

A special pass was brokered for Kristin by her special education teacher and case manager. The pass created an understanding with all teachers in the building that if K was in their room for a class, she could get up and go to a pre-determined ‘safe place’—in her case, her special ed home room—at will. As soon as that universal pass was granted, Kristin found that she was able to stay in almost any class for most, if not all the class period. The pass granted that extra degree of personal control that, once securely possessed needed only infrequent use.

Kristin’s community education and job trials were pure trial and error. It soon became clear that Kristin would not do well on a job that required qualitative judgement. Her modest newspaper route, with its clear routine, need for physical activity, familiar faces and a clear mission proved to be just the ticket. After so many years, the residents on Kristin’s afternoon paper route have become ‘natural supports’ which is a sort of special education lingo for what most of us would call friends. All of her customers will miss Kristin as the paper ceases production in 2008. Kristin’s team is working on job development for the second half of 2008.

Relationships
Kristin is one autistic person who illustrates the hunger of people on the spectrum for social contact. Not always sure how to handle new social situations, Kristin is becoming more adept at asking a safe person for advice. Kristin often finds herself enjoying a new social contact so much that she ‘over uses’ the new person’s good will. In many cases, new friends do better for longer if they learn how to recognize the early signals of burnout and also how to give Kristin much clearer social feedback. Ordinary ‘politeness’ is very difficult for Kristin to understand. Teaching people to think of clear, blunt social information as helpful and not rude is surprisingly difficult, and yet very necessary for successful long term friendships.

Kristin is an avid sports fan and regular news fan. She has her favorite teams (Green Bay, the University of Wisconsin Badgers), and favorite news anchors whom she watches every evening. As a Christmas gift one year, Kristin experienced a VIP tour of her favorite local TV newsroom. She has met all the anchors of her favorite news station and treats them like stars. It is hard to know who enjoys these encounters more, Kristin or the local news personalities who rarely meet such a devoted fan as Kristin. Links to Channel 27, GB Packers and the basketball Badgers)