Parents of children all ages are invited to relax and share experiences. At the meeting there usually is the gamut of parents and everyone is happy to share a pizza or salad, have a glass of Brita’s wine and just to meet a friend.
At the meeting questions often arise concerning the changes brought on in services by the previous Governor Malloy’s budget cuts, especially to the DDS (Dept of Developmental Services).
“Sometimes we have someone very knowledgeable about the changes or we share stories about our children and often show their pictures, said FAP founder Brita Darany von Regensburg. “There’s no must. Some people just listen.”
Ms. Darany von Regensburg is usually on hand to welcome newcomers. She founded FAP with the mission to educate the public and improve the lives of children with autism as there were no services available in the group home for someone with profound autism like her daughter.
In the meantime many services and best practices have been developed for children, but for older kids who are out of school, especially those with classic or profound autism, where services are still severely lacking.
Among the challenges for grown kids with profound autism is how to have someone who will get them out of the parents’ or the group homes and participating in the community so they can develop individual interests like yoga or exercise classes or swimming at the YMCA or YWCA, participate in walk-a-thons at Tod’s Point or in the special theater group at Arch Street, in crafts at the Bruce museum, in jobs at the library or at the hospital.
Brita said her daughter has profound nonverbal autism and lives in another town in a group home run by another care provider.
“The parents bring her back to her home town to walk around Tod’s point, which she loves, have ice cream at local parlors, which she loves, and to eat at fine restaurants, which she loves,” Ms. Darany von Regensburg said.
“To eat out they book at opening time, tell the receptionist before coming that they bring a nonverbal foodie with recipient language, who may make a few loud sounds,” she explained, adding that her family is always amazed and happy about how very tolerant and knowledgeable people have become.
Some of the major systemic challenges within the DDS and the community involve trying to improve the life of people with classic autism. Due to a lack of mandate and accompanying funds, a lack of ongoing autism training for teacher aides, and shortage of group home staff and even parents people with classic autism aren’t always able to learn how to interact better with and teach a nonverbal/verbal youngster with profound autism. And once out of school, it’s a challenge to find competitive or even volunteer employment for them.
Parents wind up paying for costly therapists to teach their children skills for daily living and job skills.
By contrast, for the higher functioning youngster more job opportunities are being created by care providers and companies.
While progress has been made, Ms. Darany von Regensburg said the challenges are still many. “In spite of budget cuts many care providers and teachers do their best and parents are very grateful,” she said.
For more information call Annaliese or Brita, 203-661-8510