PUBLICITY

 

 

Making libraries inviting to all        

 

BY ELIZABETH MOORE

 

Star-Ledger Staff

 

http://www.nj.com/starledger/stories/index.ssf?/base/news-5/1215349794100120.xml&coll=1

 

 

It was a story told by one sister to another that sparked a movement to change libraries around the state. Cheryl O'Connor's sister in Boston told her about an autistic child and his mother who were asked to leave a public library after the child had a meltdown. That got O'Connor thinking.

 

With New Jersey's high rates of autism -- one in 94 children are autistic compared with the national average of one in 150 children -- O'Connor thought something should be done to make libraries more welcoming to those with autism. And because O'Connor is the executive director of Infolink -- one of the four regional library cooperatives in New Jersey -- she was just the person to get things started.

 

With 973 member libraries the eastern regional cooperative, O'Connor suggested to her executive board that libraries compete for contracts to transform their libraries into welcoming spaces for autistic people and their families. The board agreed and last fall, Infolink awarded six contracts, ranging from $1,100 to $10,000, to libraries in Middlesex, Union, and Essex counties.

 

Library programs started last November and ranged from providing autism resource materials to towns and public schools to having autistic children participate with their non-autistic peers in library activities.

 

"It's worked better than we've ever imagined," said O'Connor, whose agency received an excellence award by the New Jersey Center for Outreach & Services for the Autism Community for this pilot program. Some of the programs launched by the libraries receiving the autism contracts have been shared with all of the public libraries statewide and has elicited e-mails from states as far away as California and Texas, O'Connor said. 

 

 

She said she hopes to build on the success of the pilot project, which ended July 1, and start a new round of contracts with other libraries this year to continue the program. All of the participating libraries posted their projects online. The contract libraries were:

 

·  The Scotch Plains Library joined forces with the Fanwood Public Library and created a 19-minute training film for library staff that explains autism spectrum disorders and strategies for helping nonverbal library patrons, including offering visitors a picture board on how to use the library. The DVD has been shown on public television, on YouTube and is being distributed to state legislators, said Meg Kolaya, director of the Scotch Plains Library. Recently, it was distributed to 325 public libraries outside of the Infolink cooperative. The libraries also hosted speakers and made a special section for autism information, books and magazines in the Scotch Plains Library.

 

·  The Children's Institute of Verona formed a partnership with the Caldwell Public Library and used the grant to buy adaptive computer equipment to help children with limited motor skills navigate the library. Plus, the institute students -- who have autistic and behavioral disorders -- formed a book club with students from the Mount Saint Dominic Academy, a Catholic girls high school in Caldwell. "It brought kids together," said Carol Piersa, librarian at the institute. "Kids learned so much, the fear is gone, the wall is broken down."

 

·  At the Edison Public Library, parents of children with autism disorders were invited to hear a speaker and the library provided child care for those children. They decorated cloth squares that were sewn into a quilt. The library also held staff training sessions and started a collection of reference materials that offer information about autism. Judy Mansbach, director of the library, said she will continue the project by offering story-time activities for special needs children in the fall, "We want people to know they're welcome."

 

·  In West Caldwell, library director April Judge invited special-needs children to participate in puppet shows, story programs, live music, crafts and a pizza party at the library with their non-autistic peers. She also sponsored a speaker series and plans to host programs for older children with autism in the future.

 

 

·  At the St. Peter's University Hospital Medical Library, library staff used its contract money to amass an extensive collection of books about autism, caregiving, parenting, sibling issues, dietary programs and therapies. They made the collection accessible to public library patrons through an interlibrary loan program.

 

 

"It's a great way to give back to the community," said Jeannine Creazzo, manager of library services.

 

·  The East Brunswick Library created a family resource center of materials on autism at the library and teacher resource centers at two public elementary schools and one middle school. "It's really teachers of typically developing children who wanted resources to explain to children about (their) classmates' behaviors," said Mary Ellen Firestone, assistant director.

 

Her library also hosted a sibling support group, offered space to a special-education parent/teacher group, and underwent staff training. 

 

 

Though the contract time is technically over, O'Connor said, the participating libraries are still getting calls about the autism programs. A mothers' group of special-needs children asked one of the participating libraries if it could hold its meetings there and other librarians have asked O'Connor about some of the programs that were launched.

 

O'Connor said she has been amazed by the response. "You can know in your head that it's a good idea ... but you're never quite sure what the impact is going to be. This lit a spark," she said.

 

The autism project got rave reviews from Linda Meyer, executive director of the New Jersey Center for Outreach and Services for the Autism Community, who said the programs help special-needs families who may feel isolated. "Parents who have kids with autism spectrum disorders are very stressed out and concerned about how their children will behave in public," she said. "It may prevent them from going to the library, though their other children may enjoy it." She said that by undergoing staff training and decorating library doors with autism-friendly decals, libraries have made their public places more comfortable. "Families will know this is an autism-friendly and autism-welcoming environment," she said.

 

For more information on the Infolink program, log on to: www.infolink.org.

 

Elizabeth Moore may be reached at emoore@starledger.com or (973) 392-1852.

 

 

 

 

 

 

Getting help for a child with autism [ CNN.com ] 

http://www.cnn.com/2008/HEALTH/conditions/03/25/ep.autism.advocacy/index.html 

 

By Elizabeth Cohen

 

In recognition of World Autism Awareness Day April 2, CNN reports on the global impact, latest science and controversies related to the brain disorder. Watch for expanded coverage on CNN.com and CNN TV. 

 

 

ATLANTA, Georgia (CNN) -- When her son Justin was a newborn, Shannon Kinninger looked up from the kitchen where she was washing dishes, and saw a large, heavy toy fall on his head. Justin didn't cry. 

 

 

Kinninger thought that was odd, and it wasn't the only thing that seemed strange about Justin. At her weekly playgroup, she watched the other babies hit their developmental milestones more or less on schedule. Justin lagged far behind. 

 

 

"When he was supposed to be sitting up, he wasn't sitting up. When he was supposed to be holding his head up, he wasn't holding his head up. When he was supposed to be rolling over, he wasn't rolling over," says Kinninger, a nurse who lives in Fayetteville, Georgia. 

 

Kinninger brought up her concerns to her pediatrician, but he told her not to worry. "The doctor kept saying that boys develop more slowly than girls," she says. "He kept reassuring me he'd be OK." 

 

 

Even though she felt frustrated, Kinninger accepted this explanation for years. Finally, when Justin was 4, she decided enough was enough. Justin wasn't potty trained, and he had unusual repetitive behaviors, such as switching lights on and off for extended periods of time, or washing his hands over and over. Plus, he wouldn't look at people -- he looked "through" them.

 

 

 

She switched doctors, and the new pediatrician referred her to a developmental pediatrician. "He said, 'He's autistic. I knew five minutes after you came in,' " Kinninger says. "I thought, finally, we get a diagnosis."

 

 

Now Kinninger thinks about all those lost years -- from babyhood to 4 years old -- critical years when Justin could have been receiving therapy for children with autism, but didn't. She now tells other parents of children with autism they need to be advocates for their children, from the very first moment they show signs of having autism.

 

 

 

Empowered Patient: Steps to take to get help for a child with autism »

 

 

 

Here, from mothers of children with autism, are ways parents should fight for their children with autism, from babyhood through the school years.

 

 

 

1. Trouble getting a diagnosis? Bring in video, letters.

 

 

 

If you're concerned your child has autism, and you're getting the same response Kinninger got from her pediatrician, remember doctor's visits are often short, and your child may not be displaying the worrisome behavior you've seen so often at home. Alison Singer, executive vice president of Autism Speaks, an awareness and advocacy organization, suggests videotaping your child's behavior and showing it to the doctor. "You could play it on your laptop, or even just bring in the video camera," she says.

 

 

 

Getting a letter of support from your child's day-care provider or preschool teacher might also help.

 

 

 

"Teachers are seen as other professionals, and a letter saying, 'In 20 years of teaching, this behavior is really unusual,' can go far," says Singer, who has a 10-year-old daughter with autism. If your child isn't in day care or school, even a letter from a neighbor who knows your child could help, she says.

 

 

 

Singer emphasizes that parents shouldn't push their pediatrician for a diagnosis. "We're saying, refer the child to a developmental pediatrician for additional screening and testing. Because when a parent thinks something is wrong with their child, they're usually right," she says.

 

 

 

Educating yourself about autism will also help you have a discussion with your pediatrician. Autism Speaks, First Signs, and the American Academy of Pediatrics all give excellent overviews. Autism Speaks' Video Glossary has more than 100 video clips comparing the behavior of children with autism spectrum disorders with the behavior of a typical child.

 

 

 

2. Sign up for early intervention

 

 

 

Any child younger than age 3 with a developmental delay is eligible to receive services through Early Intervention, a government-mandated program that provides services to eligible children. Services are free of charge, and vary from state to state, but may include speech and language instruction and occupational and physical therapy.

 

 

 

To learn how to apply for Early Intervention, click on this state-by-state directory from the National Dissemination Center for Children with Disabilities and scroll down.

 

 

 

Early Intervention is invaluable because it links parents to services in the community, but Lisa Goring, mother of a child with autism and director of family services at Autism Speaks, warns that parents may also have to search on their own, since it can be hard to find services without a long waiting list. "There just aren't enough service providers for the kids who need them," Goring says. To find services on your own, wrightslaw.com, which offers information about special education law and advocacy, has a Yellow Pages for Kids that lists providers.

 

 

 

Long waits are so prevalent that Nancy Wiseman, founder and president of the advocacy group First Signs, whose 12-year-old daughter has autism, has a few suggestions for how to get in quicker. First, parents should stress the age of their child (many clinics will give priority to children under 3), and should ask the pediatrician to make a call to the specialist. More suggestions are in her book "Could it be Autism? A Parent's Guide to the First Signs and Next Steps."

 

 

 

3. Know your child's rights in school

 

 

 

When your child enters public school, he or she has rights under federal and state laws. The U.S. Department of Education has information about federal laws and state laws. The National Association of Parents with Children in Special Education has information about children's legal rights as well.

 

 

 

Wiseman says that even with these protections, you'll still have to work to get what's best for your child.

 

 

 

For example, Wiseman moved to get into a different school district, and then a few years later, when that district no longer worked well for her daughter, she twice fought to place her child out of the district.

 

 

 

"It's very frustrating to battle a school, and you really have to do your homework," she says.

 

 

 

You and the district will come up with an Individual Education Plan. Wiseman recommends "The Complete IEP Guide: How to Advocate for Your Special Ed Child" by attorney Lawrence Siegel.

 

 

 

Also, school districts often have a Special Education Parent Teacher Association. Parents there can often give good advice on how to work with the school district.

 

 

 

4. Sign up for a research study

 

 

 

If you live near a major research university, Wiseman suggests finding out whether anyone is looking for children with autism for research studies. Sometimes, these universities will provide care for your child as part of the study. Wiseman's group, First Signs, has a list, as does Autism Speaks.

 

 

 

5. Get support from other parents

 

 

 

Health Library

 

 

 

·   MayoClinic.com: Autism

 

 

 

Judith Steuber, who raised two grandsons with autism, said that if she had to do it all over again, she would do one thing very differently. "From the beginning, I wish I'd had more support from other parents," says Steuber, who now acts as a mentor for special-needs parents in her school district. "I think that makes a big difference."

 

 

 

Autism Speaks has a state-by-state list of support groups. You can find a chapter of The Autism Society of America here.

 

 

 

There are electronic support groups on Yahoo, the Berkeley Parents Network, and Autism Web. The Arc has support groups for people with intellectual and developmental disabilities; Wiseman says many have a large number of parents of children with autism.

 

 

 

CNN

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

(published on front page of Middlesex, Union & Essex County sections)

 

 

Sunday, July 06, 2008