Tuesday, April 19, 2011

Governor Brewer and Autism Speaks

I'll cut Autism Speaks some slack since they are helping AZ get SB 1593 repealed.

Link: http://blog.autismspeaks.org/2011/04/19/tv-ad-blitz-calling-on-governor-brewer-to-veto-misguided-arizona-legislation-to-repeal-autism-insurance-law/

TV AD Blitz Calling on Governor Brewer to Veto Misguided Arizona Legislation to Repeal Autism Insurance Law
April 19, 2011 Autism Speaks Leave a comment Go to comments

Autism Speaks has announced a major, intensive two-day TV ad campaign, running April 19-20, that will call on Governor Jan Brewer to veto a misguided bill that would repeal enacted autism insurance reform legislation and force hundreds of Arizona families to once again pay tens of thousands of dollars a year out-of-pocket for critical autism diagnoses and treatments –– even though they already have health insurance coverage.

“Neighbors,” will run nearly 200 times over two days on Phoenix’s network TV affiliate stations – KNXV-TV (ABC), KPHO-TV (CBS), KSAZ-TV (FOX) and KPNX-TV (NBC). The ads juxtapose two families who have a child with autism – one of whom is getting the treatments he needs because his parents’ insurance company covers his therapies, and another who isn’t because his insurer is not required to provide coverage. The ad calls on viewers to call Governor Brewer and urge her to veto the bill.

For more information, please visit Autism Votes

Monday, April 18, 2011

School Rules software

One of my favorite websites for teaching materials for children with Autism is Natural Learning Concepts. I was checking out their sale items when I stumbled upon Volume 2 of this software. I then looked for a Volume 1 and they have that as well. This looks like a great product for children on the Spectrum. I am going to purchase both and report back!



Saturday, April 9, 2011

2 parents, 1 child

I have been hearing a lot of stories of parents who are divorced but are still attempting to raise a child together, fighting and letting petty nonsense get in the way. My best friend, Patrick, and my ex's girlfriend, come to mind. These 2 people have constant issues with their ex and it always seems like the other parent causes so much stress. I don't get how people can't get over past hurt and move on for the sake of their child/children?

As much as my ex gets under my skin or doesn't live up to the parent I wish he would be, time makes it easier to understand that he is doing the best he can. I love my son enough to know that I need to have a positive relationship for him. I question parents who don't feel the same. Don't you love your children enough to even try to be civil?

I remind myself and others that once upon a time, I loved my son's father enough to create my son. That has to mean something.

Friday, April 8, 2011

James Durbin - a positive role model for the world of Autism

I love James Durbin. He is a great role model for the Autism community and an inspiration to all kids, whether they have a disability or not.


Durbin’s ‘Idol’ Success Giving Parents Of Kids With Autism Hope
April 8th, 2011

The Autism News

By FOXReno

SAN FRANCISCO — On Thursday night, American Idol fans watched Santa Cruz contestant James Durbin advance to the next round on the competitive reality show.

Durbin has Asperger’s Syndrome, a mild form of autism. His success on the show has provided inspiration to families with children who have autism.

Children’s laughter filled the air inside Pump It Up, a play facility filled with inflatable bounce houses in San Francisco. The playhouse was free Thursday for families with autistic children.

Emily Hanna’s five-year-old son Christian was diagnosed with autism at age three. Christian spent his time at Pump It Up running, jumping and dunking.

Angela Vallecillo brought two of her children: toddler daughter Samiah and her son Zion.

“The baby has PDD — pervasive development delay — which is which is on the autism spectrum,” explained Vallecillo. “He’s also being looked at by a psychiatrist because he has issues with eye contact.

“While every family has their own story– everyone can agree on the importance of an early diagnosis.

“Subtle things: lack of eye contact, social skills, not wanting to be touched,” said Angela Vallecillo when describing the early symptoms. “Repetitive behaviors.

“Families agreed early treatment is key.

“He’s doing much better, he’s more open and social. I’ve seen a big difference,” said Hanna.

Seeing someone with James Durbin’s talent has helped prove of what these children can achieve.

“I’ve seen one end of the spectrum like the gentleman on American Idol who shows how far they can go,” said Hanna.

“It shows that they can achieve anything they want to achieve and be anything they want to be,” said Vallecillo. I” hope one day she’ll grow up and do something big.”

Source: http://www.foxreno.com/news/27474615/detail.html

Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.

Posted by The Autism News
autism, Durbin, Giving, hope, Idol, kids, parents, success

Safety issue for kids with Autism: Wandering

I remember how Joey would wander away from me or dart away fast, any chance he got. Wandering is a very scary and very real issue for parents of children with Autism.

This is the latest news on wandering for AZ:


Autism Wandering Remains a Deadly Problem

The recent case of Adam Benhamma continues to highlight the ongoing issue of wandering by those with autism. In fact, drowning has been cited as the leading cause of death for children and adults with autism, with a large majority of these incidents occurring during wandering episodes. Exposure to elements has also been responsible for many autism-wandering deaths.

The issue has become so problematic, some of the largest autism non-profits in the country have partnered to form The Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration. The group’s mission is to prevent wandering incidents and wandering-related deaths within the autism community through education, resources and awareness. The organizations that comprise AWAARE include Autism One, Autism Speaks, Doug Flutie Jr. Foundation, Hollyrod Foundation, National Autism Association and Talk About Curing Autism (TACA).

In addition to awareness and education, technology is also being implemented to address this widespread problem. Products from LoJack, SecuraTrac and Project Lifesaver all offer solutions for parents and caregivers to track and locate those with autism.

Despite these efforts, it’s clear that much more needs to be done to address the recent slew of tragic wandering cases. Just a few of those include:

James Delorey – December, 2009. A seven-year-old boy with autism from Cape Breton, Nova Scotia, went missing after following his dog into a wooded area. He was later found huddled in the fetal position in thick brush and snow less than a mile from his home. He was rushed to the hospital, but eventually passed away from severe hypothermia and exposure.

Mason Medlam – July, 2010. Five-year-old with autism who died of his injuries after being pulled from a small pond in a town outside of Witchita, Kansas. Medlam wandered from his home out of a partially opened window and had been missing for more than a half-hour before being discovered.

Zachary Clark – August, 2010. A five-year-old boy with autism from Tucson, Arizona who was pulled from a golf course pond located less than a half-mile from his home. Despite efforts at CPR, Clark was pronounced dead shortly after being airlifted to a nearby hospital.

Nathan Kinderdine - August, 2010. A seven-year-old with autism from Ohio, wandered away from his class during a summer enrichment program at school. Kinderline was found by a custodian at the bottom of the school’s indoor swimming pool and although school nurses tried to revive him, he was pronounced dead shortly after his arrival to the hospital.

Skyler Wayne – October, 2010. An eight-year-old boy with autism who was found in an Idaho river three houses away from his home. Wayne was in the care of a babysitter at the time of the incident and was found in less than two feet of water.

Savannah Martin – February, 2011. A seven-year-old girl from Oklahoma who was found face-down in a chilly pond about 50 yards from her home. Her two-year-old brother was also found with her in the water, but was face-up and buoyed by the Styrofoam in a bicycle helmet he had been wearing. Despite the efforts by the girl’s mother to revive her, Savannah was later pronounced dead.

Jackson Kastner – March, 2011. Four-year-old who drowned in a Michigan river after wandering from his home. The river was located 300 yards from Kastner’s home and swept him away — he was later found a mile-and-a-half downstream. The boy was airlifted to a hospital but attempts to revive him were unsuccessful.

Adam Benhamma – April, 2011. A three-year-old boy who is both non-verbal and deaf has been missing since Sunday. Benhamma disappeared during a game of hide-and-seek while his father briefly went inside the house they were visiting. Police believe the boy fell into a nearby icy river. As of today’s date, he has not been found and is presumed to be deceased.

These are just a few of the many heartbreaking stories that continue to play out around the country and world involving wandering individuals with autism. As we continue on with Autism Awareness Month, hopefully more attention will be brought to this problematic issue to ensure wandering-related deaths are minimized or completely eliminated altogether.

To download a copy of a helpful autism wandering brochure from AWAARE, visit: http://www.awaare.org/docs/wanderingbrochure.pdf (Adobe Reader Required)
One Response to Autism Wandering Remains a Deadly Problem

Rita Boul says:
April 7, 2011 at 8:33 am

April is Autism Awareness Month: Care Trak Helps to Relieve Parent Stress When Kids “Bolt and Run.”

Caring for a child with Autism can be a daunting task for parents. Children with Autism can “bolt and run” at a moments notice. Many children with Autism are attracted to water and have no fear of real dangers.
Care Trak International created at risk people tracking in 1986 and has developed a Perimeter Systems that alarms when a child leaves a designated area determined by the parents. These parents also have the ability to track their kids up to a mile day or night inside or outside. “We have moms who become very proficient and are better trackers than we are.”

Hundreds of law enforcement agencies across the U.S. also use Care Trak technology as an added layer of protection. The combination of the home system with agency system offers a high level of protection.

In honor of Autism Awareness Month, Care Trak International is reducing the price of it’s Home Perimeter System $400.00. In addition a 14-day no obligation trial is available. Care Trak also protects people with Alzheimer’s disease and other dementias.

For more information go to http://www.caretrak.com or call 800-842-4537

Monday, April 4, 2011

Who Will Care For Dana?

Link: http://www.parade.com/health/autism/featured/autisms-lost-generation.html

The cost of raising a child is estimated at $222,360. The cost of raising a child with Autism is estimated at $3.2 million. This is staggering.

Who Will Care For Dana?
Joanne Chen
April 03, 2011

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Dana Eisman is 20 and autistic. Her parents worry about what will happen after she graduates in June. [Photos by Michael Lavine]

In many ways, Dana Eisman, 20, of Potomac, Md., is like any other young adult. She rocks out to Train, adores Glee, and eats pizza every week. And this June, like many of her peers, she’ll leave school and join the real world.

But for Dana—and her parents, Beth, who works in a doctor’s office, and Rob, a business owner—that prospect is terrifying. “I want to celebrate,” Beth says, “but what I feel is a knife in my heart.”

That’s because Dana is autistic. She can’t hold a conversation, make eye contact, verbalize her thoughts, cross the street alone, or control herself when she’s upset. Starting when she was 4—thanks to a federal law that guarantees disabled children an appropriate education—she has spent her weekdays at Ivymount, a private school for special-needs students that she loves and that has been paid for by the state and county. But because Dana turns 21 this week, that support will dry up when the school year ends, leaving her parents to agonize about the quality of life their daughter is facing.

Living with Autism

In the next 15 years, an estimated 500,000 autistic children like Dana will graduate out of school systems in the U.S. and into the unknown. Meaningful programs for them are scarce, and funding even scarcer. “We’re at the moment of truth to address the numbers of children aging into adulthood,” says autism activist Linda Walder Fiddle. “Their lives are hanging over a cliff, and we must not let them fall.”

It’s like a splash of cold water in your face,” says Robin Heyd of New Jersey, whose son Eric is 20. “You’re devastated twice: first, with the diagnosis; then, years later, when you realize that after all the interventions, you still have a kid with autism and you have to plan his future.”

That planning process—which begins during a child’s teenage years—is called “transition,” but many parents can’t tell what exactly they’re transitioning to. Only about 3,500 programs are available nationwide for autistic adults, compared with 14,400 for autistic kids. Some are little more than day care, while -vocational programs may consist of participants working for a company in isolation, doing piecework like shredding paper. “It’s not what we want for our kids,” says Jeff Sell, a vice president of the Autism Society and the father of autistic twins. “The situation in many places is sad, disheartening, and disgusting.”

Share Your Story of Living with Autism

Of course, decent programs for autistic adults do exist, but they usually have long waiting lists, says Larry Lam, a New Jersey father whose autistic son, Jonathan, is 21. “Parents throw up their hands, and their kid sits at home watching TV.”

The Eismans considered 10 vocational-training programs for Dana. Their top choice, Community Services for Autistic Adults and Children (CSAAC), is the only one they knew of in their area designed for individuals with autism; the rest serve a range of developmentally disabled adults. But autism is different from many disorders with which it is frequently lumped together: Though 44% of autistic people have mild to moderate mental retardation, some have none at all, according to National Core Indicators, which collects data on the disabled. Often, autistic adults’ capabilities are masked by a lack of social skills or an inability to articulate ideas.

That was the case with Dana—until a few years ago, when she went to a program in Austin, Tex., and learned to communicate by typing and pointing to letters on a board. One of the first things she typed was: “I don’t want to leave Austin because no one is going to think I’m smart.” And: “I’m so uncomfortable inside my body. I don’t know how to stop myself.”

The Eismans were proud—and stunned. Says Rob: “For 15 years, we thought Dana had the mind of a 4-year-old. What kind of parents are we that we didn’t realize this wasn’t true?”

Where are the jobs?

Every week, Dana puts on a blue employee T-shirt to work at a pet store. Shadowed by a job coach, she unwraps boxes, shelves products, and cleans cages meticulously and methodically. When a customer asks for assistance, the coach prompts Dana to reply, “Let me take you to someone who can help.”

Dana is not paid for her work, which is part of Ivymount’s vocational-training program. Indeed, an autistic adult’s prospects of landing a paying job are bleak: Only 20% are employed, one study estimates, and at least 60% of those with jobs are thought to be underemployed or paid below-market wages.

Learn more about the HALO program, where Dana learned to communicate

In the workplace, many autistic adults need support, like job coaches and aides, which autistic children are legally entitled to. “The burden of responsibility shifts after they age out of the system; once they’re adults, they must ask their employers or vocational programs for such services,” says Ari Ne’eman, a presidential appointee to the National Council on Disability. Ne’eman himself has Asperger’s, a form of autism. “Many of them have not been taught the skills to do that.”

A $3.2 million lifetime cost

As Beth drives Dana to a weekly music-therapy session on a brisk spring afternoon, she is distracted. She’s just heard that an acquaintance’s child has received funding for a program. Why hasn’t Dana gotten word yet?

The Eismans have learned that finding the right program—which takes hours of research, visits, phone calls, and interviews—is just the first step. Getting into that program and getting funding to cover it are essential for all but the wealthiest families. Services at CSAAC, the Eismans’ pick, can cost up to $38,000 a year, and many participants will go there for decades. The steep, recurring price of many programs and therapies is why raising an autistic child, according to a Harvard University study, can add up to $3.2 million over his or her lifetime, compared with the $222,360 it typically takes to raise a child to age 18.

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eisman family
The Eisman Family: Rob, Melanie, Dana and Beth

Fortunately, Beth and Rob have been told they have a good chance of receiving state funds—the severity of a disability is a major factor, and Dana is considered more impaired than most.

Who will take care of these kids?
Though legislation to benefit families with adult autistic children is inching its way through Congress, parents are taking matters into their own hands. For some families in New Jersey, which has one of the nation’s highest autism rates, that may mean moving to a state where there’s good coverage and less competition for services. Other parents are calling local businesses to craft makeshift job programs—or even pooling their resources to buy property and hire support staff to create assisted-living situations for groups of autistic adults.

Living with Autism

Larry Lam formed the Post-21 Club of Bergen County, N.J., to help families like his find appropriate programs and workshops for their adult children and to raise funds for those facing shortfalls. Outside Austin, Dan E. Burns is soliciting charitable donations for the Autism Trust USA, a nonprofit he cofounded to build a campus for autistic adults, with vocational programs and small businesses run by residents. In Phoenix, Denise Resnik, the mother of 19-year-old Matthew, cofounded the Southwest Autism Research & Resource Center (SARRC). Two years ago, it started a Vocational & Life Skills Academy to train adults in fields like gardening and cooking, with the goal of helping them start their own businesses. SARRC is now planning a residence, too. “It’s important that someone take care of our adult children when we’re no longer able,” Resnik says.

The Eismans’ older daughter, Melanie, who is 22 and in graduate school, has said that she’ll always be there for her sister, but Rob and Beth do not want to force that responsibility on her. Since Dana was 6, she’s been on the waiting list of the Jewish Foundation for Group Homes, a nonsectarian agency that offers staff-supported housing for small groups of disabled adults. However, it can cost more than $70,000 a year, and the limited state funding goes to those with the most urgent needs, like a 50-year-old autistic man whose 75-year-old mother is critically ill.

This year, Dana had dinner at a Jewish Foundation home while her parents hung out in the living room. Beth describes it as “cozy and welcoming.” When asked her opinion, Dana typed out that she liked the girls she’d met but felt scared, too. “If I go away to a program,” she typed on another occasion, “can I come back if I don’t like it?”

A growing population of autistic adults

These issues are not going away, because the number of autistic adults will only continue to increase: Today, one in 110 children (and one in 70 boys) born in the U.S. is diagnosed with autism, and the numbers have been rising 10% to 17% a year. Advocates say that the needs of this population must be addressed by the private and public sectors, such as by building appropriate housing, creating tax-free savings accounts for parents to use for their adult children’s care, or providing government incentives to companies that hire autistic employees. “They’re hard workers, have excellent attitudes, and don’t mind repetitive work,” says former NBC president and CEO Bob Wright, who founded the nonprofit Autism Speaks after his grandson’s diagnosis. “If I were a business owner, I’d say, ‘Bring them on.’”

In Potomac, Dana and Beth sit together every night at the antique white desk in Dana’s bedroom. Typing sentences to each other on the computer, they discuss everything: their horoscopes, school, something they saw in the news. As the Eismans anxiously wait for their version of the golden ticket—the funding letter from the state disabilities agency—Beth asks Dana: What do you want to do next year? What is your dream? “A good job,” Dana carefully types, calling out each letter as she presses the key. “I want to be safe and happy.”


PARADE is launching a national conversation about autism. You can share your story, meet other families living with autism, find resources and get updates on ongoing news.

Note: Parade would like to extend special thanks to Autism Speaks and to Adam Pockriss of Rubenstein Communications for connecting it with the Eisman family.

Saturday, April 2, 2011

Autism Awareness Day

April 2, 2011 is World Autism Awareness day. 1 in every 110 children born will be diagnosed with Autism. Chances are you either know someone who has Autism, or know someone who has a child with Autism. Please remember to wear something blue. A blue shirt, blue earrings, a blue ribbon.Children don't ask to be born with Autism, but they deserve care, understanding,and the same respect that any other child deserves.

Today, I honor my son Joey and give thanks to my husband and family who support me, along with my Autism Mom friends (and one Uncle), who refuse to give up for the children they love and who keep me going: Anthony Castillo, Jessica Aquino, Cindy Angarola, Stephanie DeMeo Coleman, Laura LeGrady, Candice Isaacson, and Candice Bundrick.

(I posted both paragraphs on FB and am posting my friends' comments so that I can read them when I need a pick me up).


Nick Helmick - You are one amazing woman Michelle! Joey is doing so good! He would not be where he is today without your constant support and push. Keep it up and Joey is going to go so far! Love you all!
7 hours ago · LikeUnlike
Michelle Hogan - Monica Martinez Archer! You are on that list too!!!!
7 hours ago · LikeUnlike
Michelle Hogan - Thanks Nick♥♥
7 hours ago · LikeUnlike
Beth N McCabe - Today I honor you.... I have never seen or had the pleasure of meeting such a dedicated, determined, hard working mother. You continue to astound me with all that you do. Joey is an amazing lil guy, and has acheived so much because of you!!! To you Michelle, I not only look up to, repect, and love you. You are one of a kind Mama!
7 hours ago · LikeUnlike
Michelle Hogan - Beth, thank you so much! That means a lot and it made me get a little misty:)
7 hours ago · LikeUnlike
Beth N McCabe - From the heart, its all true!!!!
7 hours ago · LikeUnlike
Nicole Baldwin - You're am amazing mom
6 hours ago · LikeUnlike
Jessica Aquino - Awwww :) No problem chica. We (parents of special needs children) need to support, care, and mentor each other. We where blessed with some amazing children!
6 hours ago · LikeUnlike · 1 personLoading...
Candice Isaacson - Alan told me today that you are the only one who truly gets it. I have to agree with your other friends that you are pretty amazing!!
about an hour ago · LikeUnlike
Michelle Hogan - Thanks ladies:) So much love and support! I love it! Candice, I miss you guys:(
about an hour ago · Like