Thursday, December 29, 2011
The New Year hasn’t even started yet, but some parents are already looking ahead to 2013.
In May 2013, the American Psychiatric Association will release a new, revised set of guidelines for diagnosing someone with autism spectrum disorder.
And some experts don’t think this is a good idea.
Dr. Keith Ablow, a psychiatrist and Fox News contributor, said rather than having separate disorders in the autistic “arena,” the association is proposing one name for all such disorders, which include repetitive behavior (autism spectrum disorder, pervasive development disorder-not otherwise specified and Asperger’s).
“They are monkeying with the definition of how severe symptoms must be to fit into a new and broad category called autism spectrum disorder, rather than autism and Asperger’s, et cetera,” Ablow said.
The association’s decision to adopt stricter standards stems from the debate of how to define disorders, so that they can embrace the proper populations, while triggering insurance company reimbursements, said Ablow, who disagrees with a change in diagnostic manual so soon.
"I don't understand how a professional association can meet every few years and declare that some disorders are not in existence anymore and invent new ones to replace them," he added.
These new guidelines would place an emphasis on preservative and repetitive behaviors – but many children who were originally diagnosed with autism may be reclassified.
Ablow said this can leave some people who are still suffering with some of the symptoms or less severe symptoms out in the cold.
“If we don’t loosen it a little bit, I suspect that some of these high-functioning kids may actually either get shifted into a different diagnosis,” said Dr. Thomas Frazier, who treats children with autism at the Cleveland Clinic Children’s Hospital. “So, for example, they might move to a new diagnosis called social communication disorder.”
Frazier said he is also worried about children who are already classified, and how the reclassification could affect the educational assistance they receive at school.
“Your educational classification really indicates what kind of services and accommodations you're going to get at school,” he said. “And autism is one of the highest educational classifications; so many people with autism get a significant amount of services through their school. I think the worry by a lot of parents is that ‘if my child loses that classification what happens?’ And we don’t know what’s going to happen yet.”
Tuesday, December 13, 2011
The other night, Joey helped Bryan clean the hamster cages (last count: 13). One got away and I watche Cocoa, our dog, run across the family room with a male hamster in its mouth. I saved him, but when Joey saw the teeth marks in McDownie, he sobbed.
Well, my friends, it looks like another one had gotten out that we didn't realize. Ice-T, the only male in the second litter, white with black spots and a streak of brown, the smallest of the males and the only one with a touch of female brown fur...had met his fate.
Tonight, Joey was feeding his fuzzy hamster children before bed. I didn't have the heart to tell him about Fuzzy Ice-T's fate, especially after he was so upset seeing McDownie in Cocoa's mouth last week.
Maybe he won't notice...
Wednesday, November 16, 2011
Monday, November 14, 2011
I have to laugh at the the things that drive me crazy regarding Joey, because the more crazy/silly/somewhat sassy things he does only serves as a reminder that he is becoming more neuro-typical. Or should I say, he is resembling his neuro-typical peers.
His new thing is nudity, yet at the same time, his other new thing is covering up. If he walks outside of the bathroom or his bedroom in mid-change, he cups his pee pee and covers his butt with his hands.
One thing is for sure, he always makes me laugh.
Wednesday, November 9, 2011
Marriage, procreating...it's all a hot topic in this household. We started trying to have a baby long before we were married. Taboo as it might be, we're adults and we were engaged and felt it was ok. If I was prego at the wedding, we were ok with it. I had my 3rd laparoscopy in May of '08 and we were given the go ahead to start trying.
Nothing ever happened. I had 2 possible miscarriages. Bryan was checked out and his equipment was fine. It seems to be all me; my equipment is faulty.
Study: Gluten-free diets do not improve autism behavior
By Trisha Henry
CNN Medical Producer
Keeping the proteins found in wheat, barley, rye and dairy out of the diets of children with autism does not lead to behavior improvements, new research has found.
While many doctors do not recommend a special diet as an autism therapy, there are widespread reports from families on the internet lauding the success of keeping foods containing gluten and casein out of an autistic child's diet. Currently, nearly one in three children with autism is given a gluten- and casein-free diet in an effort to reduce symptoms of the neurodevelopmental disease, study authors say.
Actress and activist Jenny McCarthy is one the most vocal parents who claims her son's autism symptoms improved when she switched his diet.
The cause of autism, a neurodevelopmental disorder that hinders communication and social interaction, is not yet known and there is no cure. While there are a few science-based therapies, which applied early in a child's development can improve the behavior in some children, for many families finding way to help children can be challenging and lead them to try many unproven treatments.
Researchers at the University of Rochester Medical Center in upstate New York put the gluten- and casein-free diet to most stringent test today, according to lead author Dr. Susan Hyman.
They looked at 14 children with autism between the ages of 2½ and 5½ years old – but without celiac disease or allergies to milk and wheat.
First they removed gluten and casein from the children’s diet. After four weeks, the children were randomly given either gluten or casein, both, or a placebo, through a carefully measured snack. Parents, teachers and a research assistants were questioned about the child's behavior before and after the snack was eaten.
"Under these controlled circumstances we did not find an effect on behavior in response to challenges with gluten and casein in children with autism but without GI disease," says Hyman.
Parents need to be aware of the potential cost and measure the benefit before they consider trying a new treatment for their child, says IMFAR Program Committee program chair, David Mandell.
Hyman and Mandell both say more studies need to be done looking at the effects of diet and the specific subtypes of autism.
The study is being released this weekend at the International Meeting for Autism Research in Philadelphia.
Autism usually develops by the time a child is 3 years old. An average of 1 in 110 children suffers from some type of an autism spectrum disorder.
Children with autism can have one of several complex neurological disorders, which lead to social impairments, communication difficulties and restrictive and repetitive behaviors. According to the most recent data from the Centers for Disease Control and Prevention, an average of 1 in 110 children suffers from some type of an autism spectrum disorder.
Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.
Post by: Trisha Henry - CNN Medical Producer
Monday, November 7, 2011
Sunday, November 6, 2011
11/1 ~ I missed the first one so I will add it here. I am thankful for the madness of October to be over and that the holidays are upon us!
11/2 ~ Inspired by Mike Scavulli, I am going to say what I'm thankful for everyday this month. Like him, I am also thankful for hot sauce. And I am thankful for the gift of sight so I can enjoy reading friends' posts and see smiles on the faces of my loved ones everyday.
11/3 ~ I am thankful for early morning snuggles, especially since I may not get them the next 2 mornings.
11/4 ~ I almost forgot...Today, I am thankful for my job, that allows me flexibility to be there for my son and has brought many positive role models into my life.
11/5 ~ I am thankful for never being violated by a dolphin.
11/6 ~ I am thankful for finally being able to turn the a/c off! Doors and windows are open!
11/7 ~ I am thankful for sleep when I'm fortunate enough to get it.
11/8 ~ I am thankful for IV caffeine drips. Not real, you say? That's why I'm making one for my car as I write this. No other way to get through the next 12 hours, baby!!
11/9 ~ I am thankful for my family helping me out. Grandpa's getting Joe from school and taking him to speech today. Can't wait to see my little guy if he's still up when I get home tonight.
11/10 ~ I am thankful for Thursday morning volunteering at school. It gives me more time with The Joe, time with his teacher, and a weekly opportunity to see how he is doing in class. It also allows me time to teach these kids some manners. None of them say thank you! I make them look at the librarian and say thank you. I'm so mean:)
Sunday, October 23, 2011
There is a lot of misinformation out there and I want to help change that.
Please contact me with any questions at email@example.com. Thanks!
Tuesday, October 18, 2011
Here's to 3000 more!:)
Monday, October 10, 2011
Here are some helpful links I found:
Joey's doc's site:
Monday, October 3, 2011
I will admit, I am jealous at times of the Moms that get to sit at home while their husbands are at home and all their kids are at school. But I also wonder if they fill fulfilled, knowing that their greatest accomplishment that day might just be finishing the laundry.
Don't get me wrong, there are many SAHMs that are super moms; but I also know my fair share of the lazy ones, who, much like our society, feel they are entitled to sit on their asses because they gave birth once or twice.
I know I am still new to the consultant role but I will eventually get to a point where things become easier to me I meet all deadlines with ease, and most importantly, I am Super Mom to my wonderful little boy.
Sunday, October 2, 2011
Joey is enjoying his hamsters and is being responsible by taking care of them. I can't wait until he gets home from his Dad's house to see and name our new additions.
Saturday, October 1, 2011
Sunday, September 11, 2011
Friday, August 26, 2011
So proud of my big boy!
Thursday, August 18, 2011
Bryan was able to go in late so he could join us on the journey to school. He was in Seattle last year so he definitely wanted to be a part of it. I'm not sure if that was a good or bad thing. I had too many emotions to worry about soothing that morning: Bryan's anxiousness, Joey'a anxiety, and my sorrow as another milestone was fast approaching and I wasn't ready for it.
The walk was long and sweaty, thanks to the 116 degree weather but we trudged through it. Getting him into class, making sure we filled the picture quota, and getting him settled at his desk happened all to quickly. And why were almost all of the other children already seated? Did their super parents feel the need to out-do everyone else and get them 20 minutes before the bell? Being someone that is always running behind, I was pissed that I was early (a few minutes before the bell) and I was still made to feel like we were late. Can't I catch a break?:)
I was forced to give him a peck and leave abruptly, as teachers are always doing their job by trying to make "goodbyes" swift and painless. And then it happened. Two little hands reached out and grabbed my forearm. And I heard the words I hate to hear: "Don't leave me. Stay here." My heart broke as I said goodbye, pried his fingers off my forearm, and turned to leave.
It's going to be a long year.
Monday, July 4, 2011
We had promised Joey he could play with it if he was super duper careful. He was so cute when he asked that I knew I couldn't say no. And then he said something really bizarre.
Joey said: "The staring made me break the rocket."
Me: "You know you stare?"
Joey: "Yeah, sometimes. It feels like I'm in outer space."
Me: "It does?"
Joey: "There's like a door that brings me back to the real world. There's a lot of things in outer space that I play with, like first things, like my green (Lego) airplane."
Me: "You're staring is called Epilepsy."
Joey: "Yeah. I know. I heard you say it on the phone before."
Me: "That's why you take medicine."
Joey: "Well, it doesn't work."
Me: "You stil stare/"
Joey: "Like 2 times."
Me: "A day?"
Joey: "No. 1 time."
I was stunned. Not sure what to think. He is so smart, that's for sure. Maybe now he can give me insight as to what happens, when he has them, and how he feels.
Monday, June 20, 2011
Tuesday, June 14, 2011
Update(6/20/11): Joey's daddy left 5 days ago. They said goodbye last Tuesday. Joey gave a hug and a kiss and a "see you soon Daddy." It was more than we expected and all we could ask for. They speak their own language.
Sunday, May 29, 2011
Wednesday, May 18, 2011
Can't believe my little man has his last day of Kindergarten tomorrow. He's my oldest and my baby so I do everything with him for the 1st time knowing it will also be my last. I'm sure I will shed a tear or two tomorrow. I'm a mess!
Tuesday, April 19, 2011
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
Saturday, April 9, 2011
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
Durbin’s ‘Idol’ Success Giving Parents Of Kids With Autism Hope
April 8th, 2011
The Autism News
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.”
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
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
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?
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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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.”
APRIL IS AUTISM AWARENESS MONTH
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
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
Saturday, March 19, 2011
Tuesday, February 22, 2011
February 22, 2011, 4:21 pm
Cellphone Use Tied to Changes in Brain Activity
By TARA PARKER-POPE
Researchers from the National Institutes of Health have found that less than an hour of cellphone use can speed up brain activity in the area closest to the phone antenna, raising new questions about the health effects of low levels of radiation emitted from cellphones.
The researchers, led by Dr. Nora D. Volkow, director of the National Institute on Drug Abuse, urged caution in interpreting the findings because it is not known whether the changes, which were seen in brain scans, have any meaningful effect on a person’s overall health.
But the study, published Wednesday in The Journal of the American Medical Association, is among the first and largest to document that the weak radio frequency signals from cellphones have the potential to alter brain activity.
“The study is important because it documents that the human brain is sensitive to the electromagnetic radiation that is emitted by cellphones,” Dr. Volkow said. “It also highlights the importance of doing studies to address the question of whether there are — or are not — long-lasting consequences of repeated stimulation, of getting exposed over five, 10 or 15 years.”
Although preliminary, the findings are certain to reignite a debate about the safety of cellphones. A few observational studies have suggested a link between heavy cellphone use and rare brain tumors, but the bulk of the available scientific evidence shows no added risk. Major medical groups have said that cellphones are safe, but some top doctors, including the former director of the University of Pittsburgh Cancer Center and prominent neurosurgeons, have urged the use of headsets as a precaution.
Dr. Volkow said that the latest research is preliminary and does not address questions about cancer or other heath issues, but it does raise new questions about potential areas of research to better understand the health implications of increased brain activity resulting from cellphone use.
“Unfortunately this particular study does not enlighten us in terms of whether this is detrimental or if it could even be beneficial,” Dr. Volkow said. “It just tells us that even though these are weak signals, the human brain is activated by them.”
Most major medical groups, including the American Cancer Society, the National Cancer Institute and the Food and Drug Administration, have said the existing data on cellphones and health has been reassuring, particularly a major European study released last year by the World Health Organization that found no increased risk of rare brain tumors among cellphone users.
When asked to comment on the latest study, the leading industry trade group, CTIA – The Wireless Association, released a statement emphasizing recent studies that have shown no elevated cancer risk associated with cellphone use.
“The peer-reviewed scientific evidence has overwhelmingly indicated that wireless devices, within the limits established by the F.C.C., do not pose a public health risk or cause any adverse health effects,” said John Walls, vice president of public affairs for the trade group, adding that leading global health groups “all have concurred that wireless devices are not a public health risk.”
But the new research differed from the large observational studies that have been conducted to study cellphone use. In Dr. Volkow’s study, the researchers used brain scans to directly measure how the electromagnetic radiation emitted from cellphones affected brain activity..
The randomized study, conducted in 2009, asked 47 participants to undergo positron emission tomography, or PET, scans, a type of scan used to measure brain glucose metabolism, a marker of brain activity. Each study subject was fitted with a cellphone on each ear and then underwent two 50-minute scans.
During one scan, the cellphones were turned off, but during the second scan, the phone on the right ear was activated to receive a call from a recorded message, although the sound was turned off to avoid auditory stimulation.
Whether the phone was on or off did not affect the overall metabolism of the brain, but the scans did show a 7 percent increase in activity in the part of the brain closest to the antenna. The finding was highly statistically significant, the researchers said. The researchers said that the activity was unlikely to be associated with heat from the phone because it occurred near the antenna rather than where the phone touched the head.
In the past, any concerns about the health effects of cellphones have been largely dismissed because the radiofrequency waves emitted from the devices are believed to be benign. Cellphones emit nonionizing radiation, waves of energy that are too weak to break chemical bonds or to set off the DNA damage known to cause cancers. Scientists have said repeatedly that there is no known biological mechanism to explain how nonionizing radiation might lead to cancer or other health problems.
But the new study opens up an entirely new potential area of research. Although an increase in brain glucose metabolism happens during normal brain function, the question is whether repeated artificial stimulation as a result of exposure to electromagnetic radiation might have a detrimental effect.
Although speculative, one theory about how an artificial increase in brain glucose metabolism could be harmful is that it could potentially lead to the creation of molecules called free radicals, which in excess can damage healthy cells. Or it may be that repeated stimulation by electromagnetic radiation could trigger an inflammatory response, which studies suggest is associated with a number of heath problems, including cancer.
Among cancer researchers and others interested in the health effects of cellphones, the study, listed in the medical journal under the heading “Preliminary Communications,” was met with enthusiasm because of the credibility of the researchers behind it and the careful methods used.
“It’s a high-quality team, well regarded, and if nothing else they’re showing that radiation is doing something in the brain,” said Louis Slesin, editor of Microwave News, a newsletter on the health effects of electromagnetic radiation. “The dogma in the cellphone community says that it doesn’t do anything. What she’s shown is that it does do something, and the next thing to find out is what it’s doing and whether it’s causing harm.”
Dr. Ronald B. Herberman, former director of the Pittsburgh Cancer Institute and now chief medical officer for the Intrexon Corporation, a biotechnology company in Germantown, Md., said, “I think it’s a very well-designed study, and they have clearly shown that there is biologic activity being induced in the nerve cells in the region where the antenna is the closest.” Dr. Herberman said skeptics about the risks of cellphones have focused on the fact that the type of radiation they emit is too weak to break chemical bonds and cannot plausibly be implicated in cancer. However, the new research suggests a potentially different pathway for cancer and other health problems to develop.
“I think it’s an important new direction to go in for biologists to start delving deeper into sorting out what might be going on,” said Dr. Herberman.
In an editorial accompanying the Journal article, Henry C. Lai, a University of Washington professor of bioengineering who has long raised concerns about cellphone safety, said he hoped the data would broaden the focus of cellphone research and health.
“The bottom line is that it adds to the concern that cellphone use could be a health hazard,” said Dr. Lai. “Everybody is worried about brain cancer and the jury is still out on that question. There are actually quite a lot of studies showing cellphone radiation associated with other events, like sleep disturbances. But people have not been paying a lot of attention to these other types of studies.”
Dr. Volkow said future research may even show that the electromagnetic waves emitted from cellphones could be used to stimulate the brain for therapeutic reasons. She said the research should not set off alarms about cellphone use because simple precautions like using a headset or earpiece can alleviate any concern.
“It does not in any way preclude or decrease my cellphone utilization,” she said.
See the other clips at the link address above as well.
I'm happy to say that Joey is on the right track and they are not talking about leaving him back as of right now. It's as if a switch went off that said he needed to work harder. Anyone who is a parent of a child on the Spectrum probably feels the same way I do - some days, it's as if your child is lost in a fog, while other days, it's as if they are so present, you wonder where the Autism went.
I'll rate the events with a + or -. Over the last month, Joey stood up to his "best friend" at school with a sassy remark (+); got into a scuffle with his friend Ernesto (+ and -; glad he stuck up for himself but don't want him to become too aggressive); the whole repeating Kindergarten debacle (-); making great strides in 10 day's time (+++); fighting with his Dad to let Joey come home (-; I felt like Ben was holding Joey hostage after Joey said he wanted to go to the "heavy house"); having a great weekend away with just my husband (+ and -; it makes me want to move); and Joey being away at his Dad's house (+ and -; it's always nice to have a break but I feel like I didn't miss him as much as I "should").
I think I can blame a lot of my emotional state on my job. The center is stressing me out to the point of my IBS rearing its ugly head again. I love what I do, although I'm not sure I want to work in a clinic setting forever. I'm torn because I need my 1500 hours to sit for the BCBA exam but I keep feeling as if I should be applying to schools as a Behavior Interventionist and not focus on the board certification for now.
I'm feeling a shift in my relationship with Joey. Is it all in my head? Or is it growing pains? He may becoming more independent at a time where I feel I have less and less quality time with him because of my schedule.
On a positive note, I have 17 days left of school and then am taking a week off to vege out. I need it for my sanity (event though I am already feeling guilty about it)!
Hopefully, February will end on a high note. It's bizarre that every February and May end up to be challenging months for me, even when I try to tell myself they will be great months. My life is cyclical, even on a yearly basis, I guess.
Friday, February 4, 2011
One thing I can't even write about.
The other thing is about Joey and being left back in Kindergarten. I have failed him. And then Ben decides to share things about his childhood that lead me to believe he does have Asperger's.
Either way, I have failed Joey. He will be the oldest kid in Kindergarten...7 years old! Some people try 1/4 as hard as I do to be a good mom and they succeed. Me? I give 110% and I fail.
Saturday, January 22, 2011
WASHINGTON (Reuters) – U.S. health officials are investigating a rise in reports of a type of seizure following vaccination with a Sanofi-Aventis SA flu vaccine, the Food and Drug Administration said on Thursday.
The febrile seizures, or seizures related to a fever, have primarily been reported in children younger than 2, the FDA said in a statement on its website.
The FDA said 42 cases of febrile seizures had been reported as of December 13 and it and the Centers for Disease Control and Prevention were investigating if they could have been caused by the vaccine, called Fluzone, or if other factors were involved, the FDA said.
Having a fever can cause a seizure in some children. About 4 percent of young children will have at least one febrile seizure in their lifetimes, the FDA said.
"In the cases reported, all children recovered and no lasting effects have been seen," the FDA said.
An FDA spokeswoman said 36 of the cases reported to its vaccine adverse event reporting system were in babies and toddlers aged 6 months to 2 years, with 10 serious cases. She said 38 of the febrile seizures occurred within a day of getting Fluzone.
Experts stress that just because something happens soon after receiving a vaccine, it does not necessarily mean the vaccine was the cause.
The FDA spokeswoman said the vaccine surveillance system did not detect extra reports of febrile seizures after the 2009-10 seasonal flu vaccine or the 2009 H1N1 swine flu vaccine.
The CDC recommends everyone older than 6 months get a flu vaccine annually. That recommendation has not changed, the FDA said.
The Sanofi-Aventis flu shot is the only one recommended for infants and children ages 6 months to 23 months during the current flu season.
The company said it was working with the FDA to investigate the cases.
"At this point no correlation between influenza vaccine and febrile seizures has been established. Adverse events after vaccination may be causally related to vaccine or may be coincidental," Sanofi-Aventis said in a written statement.
The risk of severe illness from influenza is higher among young children, especially under age 2. About 9 out of 10,000 children ages 6 months to 23 months land in the hospital each season for flu-related problems, the FDA said.
Shares of the French drugmaker were up 2 cents at $34.12 in afternoon trading on the New York Stock Exchange.
The FDA posted the notice at http://link.reuters.com/cep47r.
(Reporting by Lisa Richwine; editing by Andre Grenon, Dave Zimmerman)
I also received an email stating that it was OK to apply for graduation.
At school, we are being called practitioners and I feel that the tone has changed. We are no longer students; we are apprentices, preparing for the field. It is an exciting time for me. As I make my way through this year, a lot will be determined. If I become a mother again, that will sideline my fieldwork for a while. If not, I will forge full speed ahead and prepare for my BCBA exam.
Either way, I know I will do great things by helping the wonderful clients I see everyday.
Joey's dad asked if I needed anything after he got done with a soccer tournament. He acted sad that he wasn't going to see Joey this weekend. I am watching my nephews and asked him if he wanted to pick up Joey's favorite beef skewers and come by to see Joey. He willingly showed up and then when Joey asked him to play a game, he said he had to go. Ends up he needed to go babysit his daughter so his girlfriend could have a night out with her friends. I'm all for couples going out and Moms getting breaks....but when a woman only sees her kid 2 weeks a month (if that) and complains that her boyfriend was gone for 9 months, should she really be going out on the town and leaving them behind. It's none of my business but after my pleas for a break 2 nights ago to Joey's dad go without acknowledgment, I have to laugh. If I don't laugh, I'll cry.
Ok, enough about the ex. I will try not to post about it so much.
Thanks for listening:) If I don't vent, I fear I may explode.
Thursday, January 20, 2011
On Tuesday, it was "I can't see Joey because I have to take care of Natalie." Last week, "I can only see Joey until 6; I have to watch Natalie." Yesterday, "she's not my fucking kid; I don't know why I have to watch her." (Wouldn't his girlfriend love to hear that one??)
My ex is having trouble playing family man with his loser girlfriend. Yes, I can call her a loser because she is a typical Arizonian....uneducated and doesn't want much out of life. She refuses to try to understand Joey and wants nothing to do with learning about his Autism and what she can do to maintain consistency between households. Heck, she refuses to let Ben take Joey's stuff out of storage so that Ben can attempt to make Joey feel more at home. I don't think it's fair to intrude on Natalie's space but they can accommodate my son by putting his favorite sheets on the air mattress he is forced to sleep on or bring out his Cars table and chairs....something to make him feel like he belongs there.
I can't blame Ben. He needs to appease her because she lets him live there rent free and she provides a warm place to stick it every once in a while. I've been good about letting things roll off me...like the fact that Ben hasn't seen Joey for more than 4 hours since he's been home from Venezuela. I just don't get it.
And my emotions come out when I'm exhausted. And I am fucking exhausted. Oh...curse words come out when I'm exhausted too.
Yesterday, Ben verified with me the dates to take Joey on his annual OR trip...or should I say "the trip where Ben pretends to be a family man/Daddy and parade his son around for his family to see." I like that Joey goes and want Joey to have great memories with his Dad. It was even my idea to go that time. Well, I knew Ben went and bought the tickets last night and then lied to me when I asked if he had checked flights and bought them. He said "I was looking at the 17th through the 21st." So I was a dick and said "I said the 20th." He panicked. I told him I was kidding and to stop lying to me and thinking that I am the big bad wolf already. This game is so old. He lies so much that he can't stop.
He admitted that he lied and apologized. Wow...that's a first!
Today, he texted me to find out what were Joey's afternoon plans. I called him to tell him that Joey had speech but that I was more than willing to rearrange Joey's plans if he wanted to spend time with his son. Ben only wanted to see Joey for an hour because he had dinner plans with Natalie, Shannon, and Shannon's dad, who "I won't see for another year." And this is important to Ben...why? I told him he could take Joey and he said "he won't like it; we're going for Chinese food." I told him that was Joey's favorite. He then told me he didn't want to ruin my plans. After more texting and another phone call, he agreed to take Joey to the restaurant. I asked him if he was worried it would ruin his good time or just trying to appease others and that is when he said "I want to take him; I just have to talk myself into doing the right things." I know he means convincing himself to do what feels right but it just came out so wrong.
I am so tired tonight. I wish I had my husband here. I wish I had a co-parent in my ex-husband. I wish I had parents who would come here and watch Joey so I could work on the weekends and not have to drag Joey out of the house at 7:30am on his days off. Having someone in the house sure would come in handy. I really hate everyone sometimes...and I hate the situation. Sad thing is...if my ex-in-laws were here, they would come over and watch Joey without hesitation.
Saturday, January 8, 2011
I am a proponent of spreading out the vaccines that are given to children but I do not agree with vaccines causing Autism. There is no proof; Thimerosal was removed from vaccines in 2000; and if vaccines were the cause, then more children would have Autism.
Kids typically show signs around 18 months - the same time that babies get shots. People need to start looking at their gene pool and not blaming it on vaccines.
The final 8 weeks of my fall semester were very stressful, as 3 classes were added to my class load. In that 8 weeks, we also had Joey's birthday; T-ball practice, games and playoffs; Thanksgiving; and preparing for Christmas. As always, I need to remind everyone that I did this all my own. Not looking for a pat on the back, but it is definitely a good excuse as to why I have been slacking in the friend department, and also slacking on living up to my obligations of staying in touch with family and sending pictures of Joey. I've also really been lazy about taking care of myself. It sucks but it happens. With a new year comes renewal, and I have vowed to take care of myself a lot better in the emotional, physical, and spiritual departments.
By the way, I pulled all A's in my 4 classes, leaving me with a 4.0 GPA for the semester and a 3.82 GPA for the year:)
I am going to hopefully be blogging more this year, as there is a lot going on with Joey, and a lot going on in the world of Autism.