Tuesday, April 29, 2008

John and his trains

John has been having lots of fun with his train set recently.
Here is a little video we shot (below)


Saturday, April 19, 2008

Ride for Autism

Ride for Autism Bikers to ride for autism awareness, benefit summer camp
By Lindsay Robinson Navarre Press (Another interview for Autism Awareness Month)

April Nicole Gernier is almost 8 years old, but she can’t speak. Last year, she learned to use the toilet, a huge accomplishment that led to much celebration. But April Nicole isn’t like “typical” kids. She has autism.

Today, one in 150 individuals has autism, a disorder that touches every person differently but always affects communication or social skills. In recent years autism has become a mainstream topic and many affected by it have focused on increasing the public’s knowledge about the disorder.
The Autism Society of the Panhandle, based in Pensacola, is dedicated to improving the lives of those with autism and educating the community about the disorder.April Nicole’s Annual Ride for Autism conquers both tasks.
This year’s police-escorted motorcycle ride will run from the Gulf Breeze High School football stadium to Cocodrie’s on Navarre Beach Saturday. Sign-ups start at 9 a.m. and the riders will depart at 11 a.m. Cost is $15 per bike and $5 per rider.
“It’s a lot of fun and a great way to show you really care about those who have autism and show the community that autism is an important issue and if we band together we can make a huge difference,” said Susan Byram, executive director of ASP.
A celebration will be held at noon at Cocodrie’s featuring a buffet, live music, prizes and vendors.The public is welcome to attend.
Steve Grant, chairperson of the ride committee, suggested the motorcycle ride two years ago in honor of his autistic niece, April Nicole.
“I was just talking to my sister about the expenses of stuff, like sending a kid to summer camp,” Grant said, and he was inspired to gather other bikers for a fundraiser.
All the money raised from April Nicole’s ride benefits the ASP, specifically the society’s summer camp for autistic children. Grant said most kids can attend camp for $300 or $400, but camps for autistic kids run around $3,500.
That’s how much the ASP’s summer camp costs, but through fundraisers like the motorcycle ride, autistic kids in Santa Rosa and Escambia counties are able to attend the camp on an 80 percent scholarship – just $600 for six weeks. Last year 30 staff and 50 kids attended camp; Byram hopes to bring 65 to 75 children to the camp this year but it all depends on fundraising, she said.
The camp benefits educators and autistic children as well as typical kids. Byram said the camp is a “learning lab for teachers” – they’re trained for a week on the best practices for working with autistic children by experts from New York’s Carbone Clinic.
Children attending the camp are divided by need – communication or social skills – as well as age.Younger kids with high communication needs get oneon-one interaction with teachers. All the other kids have a slightly higher student-teacher ratio and get to interact with typical peers in a summer camp program at Pensacola Junior College.
“Inclusion is very important for anyone with a disability,” Byram said. “Kids with autism can often learn from their peers better than they can learn from teachers.The peers learn a lot from being around kids with autism – how to be supportive and understanding and accepting of differences.”
She said the camp can be a life-changing experience for autistic kids and their families. That’s where April Nicole learned to use the toilet, earning the nickname of“The Potty Queen.” Other kids speak for the first time, Byram said.
“There were lots and lots of beautiful firsts that we had as a result of camp,” she said.
Navarre resident Myra Fowler is looking forward to sending her 4-year-old autistic son, John, to summer camp for the first time this year. Her two daughters will go along to take part in the peer empathy training.
Fowler is active in ASP and recently started a chat group for autistic parents in Navarre.The parents have breakfast, share information, set up play dates and form friendships, she said.
Other chat groups are held in Pensacola and Pace/Milton. The ASP has many other resources for families dealing with autism, including monthly informational meetings.The April 15 meeting will be the second annual Community Resource Fair for parents and professionals, with various agencies providing information on autism.The event will be held from 6:30-8:30 p.m. at the ARC – Pollack Training Center at the intersection of Fairfield Drive and 10th Avenue in Pensacola. To attend the fair, RSVP to tgeri@cox.net.
The ASP will also work with the Emerald Coast Autism Society to host an Autism Awareness Day at The ZOO Northwest Florida from 10 a.m.-2 p.m. April 26. Information on autism will be provided and those affected by autism are encouraged to attend and “be with other families who understand,” Byram said.
Fowler encourages families of people with autism to get involved with the ASP.
“Autism is a journey and it’s a whole lot more pleasant if you’re not the only one on the journey.You can share your joys, fears, concerns, feel like you’re not alone – someone else is going through the same things as you and they understand where you’re coming from,” she said.
She also wants to see the public become more educated about the disorder and be accepting of autistic children. Raising awareness is critical, she said.
“Years ago kids like this would be locked up in mental institutions because people didn’t know how to care for them. We’ve come a long way,” she said. “With the right training and help these guys can be effective members of society and not end up to be a burden. But you have to put the money in up front with early intervention and the sky’s the limit for these kids.”
For more information on the Autism Society of the Panhandle, call 450-0656, visit www.autism pensacola.org or e-mail autism pensacola@bellsouth.net.

Thursday, April 17, 2008

The Cost of Autism

The cost of autism
Legislation in Tallahassee could require large group insurance plans to help pay for therapy
Sunday March 30th, 2008

NAVARRE — With wide blue eyes and cherubic cheeks, John Fowler looks like any other 6-year-old.

He runs through his Navarre home and scales the kitchen pantry shelves as his 12-year-old sister, Elizabeth, runs after him.

“You’re lucky you’re so cute,” his mother, Myra, later says while hugging John.
John is not like most children his age. His eyes wander. And while most 6-year-olds have a vocabulary of 5,000 to 20,000 words, John’s is about 500.
At 34 months, John was diagnosed with autism. However, he’s made considerable strides through intensive therapy.

“Before therapy, he wouldn’t even look at you,” said Myra, who added that he had a vocabulary of about five words.

The bulk of John’s therapy comprises Applied Behavioral Analysis, which runs from $50 to $120 an hour nationwide.

Experts recommend anywhere between 10 and 30 hours a week, but Myra said her family can’t afford more than six. John’s at-home therapy costs about $50 an hour, which the Fowlers pay out of their pocket.

There are already times when John’s two older sisters must sacrifice activities so he can have his therapy, she said.

“Every extra penny goes to John’s therapy right now,” she said.
A new piece of legislation could help families such as the Fowlers afford to do more for their autistic children.

Dubbed “The Window of Opportunity Act,” the bill would require large group health insurance plans to provide diagnostic screening, intervention and treatment of autism. It would prohibit insurance companies from denying autistic children therapy.
Sandra Hastings, a certified behavioral analyst, has worked with autistic children since 1989. She has worked the past four years for Santa Rosa County schools.
“I wouldn’t imagine anyone could afford it,” Hastings said of the expensive therapy.

Applied Behavioral Analysis is one of the most highly respected forms of therapy. At its core, it tries to train autistic children to communicate — which is not the same as how to talk, Hastings said.

Children with autism often cannot recognize facial cues or other forms of communication, Hastings said.

For example, instead of telling a child that a drink is hot or cold, it may be necessary to place their hand on a coffee cup so they can feel the warmth, Hastings explained.

In some states such as Pennsylvania, New York and California, the therapy is offered in public schools.

“That’s why you have families in utter shock when they move here,” Hastings said. “Educational systems often get stuck in teaching the aspects of reading, writing and arithmetic, when often what their children need are socially relevant and functional behaviors.”

Hastings said based on her experience, up to 80 percent of autistic children could hold jobs and become more independent. Some of them would no longer need to be institutionalized.

“We know that if you spend the money on the front end, it will save money,” she said.

The Autism Society of America estimates that the lifetime cost to care for a child with autism ranges from $3.5 million to $5 million, and that the United States is facing almost $90 billion annually in costs.
The ASA reports that the lifelong care costs can be cut by two-thirds with early diagnosis and intervention.

Ana Leurinda, a family therapist and founder of Brilliant Minds in Destin, said if autistic children are allowed to get early treatment, “they will be able to live in society, hold jobs, live independently.”

Leurinda said she has lived in the world of autism for nine years with her daughter, Nicole.

People want quick fixes, the proverbial snake oil, she said. But in reality, therapy is a long, time-consuming process.

“Like every other illness, insurance should be able to pay for Applied Behavior Analysis as therapy for children with autism,” Leurinda said. “It does not differentiate itself from any other medical illness. … There is widespread medical evidence that this therapy is significant in the treatment of children with autism.”

Navarre resident David Triana, who pays up to $13,000 a year for his son’s treatment, said autism often falls between the cracks.

“Early identification, early intervention provide for you to take advantage of the window of opportunity to give children the intensive therapy to reach their maximum potential,” he said.

Two separate bills, SB 2654 and HB 1291, are working their way through state House and Senate committees. It’s unclear when or if they will reach the floor.
With recent statistics saying 1 in 150 children will be born with autism, the country is facing a staggering amount of care, Myra Fowler said.

“Just support people with autism, children with autism,” she said. “You may not have one now, you may not know one now, but you’re probably going to.”


This appeared in the Northwest Florida Daily News on Monday March 31st. John is actually 4 nearly 5 and the dollar amounts on what we pay are not quite acurate but you get idea and otherwise it is a good article.

For the article along with videos of ABA go to http://www.nwfdailynews.com/article/13218/1


Wednesday, April 16, 2008

Happy Birthday to me!

The day finally arrived. Monday April 14th I turned 40! I had a fun day celebrating with my Mum and her friend who was visiting from England. I had a big surprise when I got to the office. Howard, Mum and Judy took us out for a nice meal at Logan's. Sandi and Vern joined us for dinner. 40 doesn't feel much different than 39.