Angry, Greenwich mother became autism advocate - Greenwich Time

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1 Angry, Greenwich mother became autism advocate Greenwich Time 1 / 15

2 Angry, Greenwich mother became autism advocate Greenwich Time 2 / 15

3 Angry, Greenwich mother became autism advocate Greenwich Time 3 / 15

4 Angry, Greenwich mother became autism advocate Greenwich Time 4 / 15

5 Angry, Greenwich mother became autism advocate Greenwich Time 5 / 15

6 Angry, Greenwich mother became autism advocate Greenwich Time / 15

7 Angry, Greenwich mother became autism advocate Greenwich Time Photo: Tyler Sizemore / Hearst Connecticut Media Image 1 of / Caption Close 7 / 15

8 Angry, Greenwich mother became autism advocate Greenwich Time Image 1 of Buy photo Brita Darany von Regenburg and her husband, Tibor Darany, pose in front of a painting by their autistic daughter, Vanessa, inside their home in Greenwich, Conn. Tuesday, Jan. 17, Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board of Directors. Vanessa lives at a group home in Trumbull and the couple goes to visit her there every weekend. less Brita Darany von Regenburg and her husband, Tibor Darany, pose in front of a painting by their autistic daughter, Vanessa, inside their home in Greenwich, Conn. Tuesday, Jan. 17, Brita is the president of... more Photo: Tyler Sizemore / Hearst Connecticut Media Buy this photo Image 2 of Buy photo Brita Darany von Regenburg holds of a photo of her with her husband, Tibor Darany, and daughter, Vanessa, at her home in Greenwich, Conn. Tuesday, Jan. 17, Brita is the 8 / 15

9 Angry, Greenwich mother became autism advocate Greenwich Time president of Friends of Autistic People (FAP) and Tibor is on the Board of Directors. The couple has an autistic daughter, Vanessa, who lives at a group home in Trumbull. less Brita Darany von Regenburg holds of a photo of her with her husband, Tibor Darany, and daughter, Vanessa, at her home in Greenwich, Conn. Tuesday, Jan. 17, Brita is the president of Friends of Autistic... more Photo: Tyler Sizemore / Hearst Connecticut Media Buy this photo Image 3 of Buy photo Brita Darany von Regenburg and her husband, Tibor Darany, pose inside their home in Greenwich, Conn. Tuesday, Jan. 17, Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board of Directors. The couple has an autistic daughter, Vanessa, who lives at a group home in Trumbull. less Brita Darany von Regenburg and her husband, Tibor Darany, pose inside their home in Greenwich, Conn. Tuesday, Jan. 17, Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board... more Photo: Tyler Sizemore / Hearst Connecticut Media Buy this photo 9 / 15

10 Angry, Greenwich mother became autism advocate Greenwich Time Image 4 of Buy photo Brita Darany von Regenburg and her husband, Tibor Darany, pose inside their home in Greenwich, Conn. Tuesday, Jan. 17, Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board of Directors. The couple has an autistic daughter, Vanessa, who lives at a group home in Trumbull. less Brita Darany von Regenburg and her husband, Tibor Darany, pose inside their home in Greenwich, Conn. Tuesday, Jan. 17, Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board... more Photo: Tyler Sizemore / Hearst Connecticut Media Buy this photo Image 5 of 10 / 15

11 Angry, Greenwich mother became autism advocate Greenwich Time Brita Darany von Regenburg and her husband, Tibor Darany, with their daughter Vanessa. Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board of Directors. Vanessa, who has autism, lives at a group home in Trumbull. less Brita Darany von Regenburg and her husband, Tibor Darany, with their daughter Vanessa. Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board of Directors. Vanessa, who has autism,... more Photo: Contributed Photo / Contributed Photo Image of Brita Darany von Regenburg Tibor Darany's daughter Vanessa at Christmastime. Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board of Directors. Vanessa, who has autism, lives at a group home in Trumbull. less Brita Darany von Regenburg Tibor Darany's daughter Vanessa at Christmastime. Brita is the president of Friends of Autistic People (FAP) and Tibor is on the Board of Directors. Vanessa, who has autism, lives at... more Photo: Contributed Photo / Contributed Photo 11 / 15

12 Angry, Greenwich mother became autism advocate Greenwich Time Angry, Greenwich mother became autism advocate 1 / Back to Gallery GREENWICH Twenty years ago, Greenwich resident Brita Darany von Regensburg was like many mothers of a special needs child frustrated by an intimidating and unhelpful network of services, and worried what would happen to her daughter as she approached adulthood. Difficulties finding a proper place to take care of Vanessa, who has profound autism, left her feeling that no one would advocate for and protect her child. We were uneducated parents and that s what makes me so angry, von Regensburg said. Our ignorance was exploited, to the detriment of our daughter. 12 / 15

13 Angry, Greenwich mother became autism advocate Greenwich Time Von Regensburg realized she had to be the advocate for herself and other parents who probably didn t know what they needed to know to help them with their own fights. She and her husband, Tibor Darany, founded the nonprofit organization Friends of Autistic People in Today Friends of Autistic People is an organization composed of parents and professionals dedicated to increasing services and supported living arrangements for grown children with autism, and providing information to parents working to help their children. The nonprofit offers a parent support group, legislative forums and workshops on autism throughout the year. It also sponsors services such as music therapy programs for people with autism. We started off very slowly, but as you go on and on you see more of what needs to be done, von Regensburg said. The work becomes greater once you see everything that needs to be accomplished. Our goal is to educate the parents and the public in the latest medical breakthroughs and we try to advocate with legislators which is so important. Sometimes the husbandand wife team have interns to help, but running the organization remains mostly a family affair. I sleep very little and I live on coffee, von Regensburg said. But there is so much to do. We are advocating for everyone on the spectrum. We want people to better understand and accept people with autism as a part of our society. Advocacy has become an increasingly important part of their work, von Regensburg said. There are very few services for adults with autism out there, and even children, who do have services available, often have trouble accessing them. It can be a wasteland and the only way we re going to change it is if the legislators see we have accrued a critical mass, von Regensburg said. They need to see what a force we can be and there is so much uncertainty right now. The Affordable Care Act was helping a lot of adults as well as children with their medical costs and we re very worried about what s going to happen 13 / 15

14 Angry, Greenwich mother became autism advocate Greenwich Time now with all the talk about repealing it. They can t just create a void. A major goal of FAP remains von Regensburg s dream of a sustainable farm. She envisions a community of independent homesteads where adults with autism can get services they need while working in a natural environment and interacting with each other and animals. We go to the Weir Farm in Wilton and my daughter just takes off, suddenly she is free, von Regensburg said. She has profound autism and cannot speak but she is not fearful at all going ahead in the forest over the trails. She loves horses and many kids with autism loves horses. The project has been a goal for years. Von Regensburg said they have the enthusiastic support of parents, just not the funds to make it a reality. One roadblock FAP has run into is competition from the nationally known organization Autism Speaks. It seems that everyone who has money in this town and the surrounding area is giving money to Autism Speaks, von Regensburg said. But that charity does research. It s not doing enough to help people who are living with autism and it s hard for other organizations to raise money. She recalled running into an acquaintance one time who asked about a golf tournament her organization was hosting in town that day. It wasn t us. It was Autism Speaks and they assumed they were giving us the money when they gave it to Autism Speaks, she said. They thought all nonprofits for autism are the same. If FAP is ever gong to realize the dream of the farm, they will have to get around that roadblock, she said. 14 / 15

15 Angry, Greenwich mother became autism advocate Greenwich Time We need a lot of money to build this farm. We have to buy the property. We re looking at Newtown. We re looking at Monroe, she said. We ve found something but we can t afford it and the people with the money have already given elsewhere. More information about Friends of Autistic People, including how to donate or volunteer, is online at Von Regensburg said people also chould her at fap.a utismct@gmail.com for more information directly from her. kborsuk@scni.com Google News 15 / 15