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As a parent of a child with seizures, my heart goes out to John Travolta and family over the death of their son, Jett Travolta.  Autism controversy aside, seizure related accidents and death are all too common.

Related:

• Jett Travolta dies at 16; may have had untreated autism (About.com)
• Seizure Safety Tips
• Travolta son to have autopsy amid autism allegations
• Was Jett Travolta Autistic?
• Jett Travolta’s Death Brings Kawasaki Syndrome In Focus
• The Tragic Death of Jett Travolta
• John Travolta’s Son Dies in The Bahamas
• Jett Travolta, Son Of John Travolta, Died Today
• Jett Travolta’s death swirls up old rumors of autism and Scientology
• Jett Travolta’s Seizure Related Death
• Joey Travolta Autism Social Skills Camp
• Seizure control and mortality in epilepsy
• Police Investigate Jett Travolta’s Death - TMZ.com
• The Known Causes of Seizures: John Travolta and Kelly Preston Mourn

John LeSieur is in the software business, so he took particular interest when computers seemed mostly useless to his 6-year-old grandson, Zackary. The boy has autism, and the whirlwind of options presented by PCs so confounded him that he threw the mouse in frustration.

LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn’t find anything satisfactory. So he had one built, named it the Zac Browser For Autistic Children in honor of his grandson, and is making it available to anyone for free.

LeSieur’s quest is a reminder that while the Web has created important communication and educational opportunities for some people with cognitive impairments, computers can also introduce new headaches for families trying to navigate the contours of disability.

The Zac Browser greatly simplifies the experience of using a computer. It seals off most websites from view, to block violent, sexual or otherwise adult-themed material. Instead it presents a hand-picked slate of choices from free, public websites, with an emphasis on educational games, music, videos and visually entertaining images, like a virtual aquarium.

Other programs for children already offer that “walled garden” approach to the Web. But LeSieur’s browser aims to go further: It essentially takes over the computer and reduces the controls available for children like Zackary, who finds too many choices overwhelming.

For example, the Zac Browser disables extraneous keyboard buttons like “Print Screen” and turns off the right button on the mouse. That eliminates commands most children don’t need anyway, and it reduces the chance an autistic child will lose confidence after making a counterproductive click.

Children using the Zac Browser select activities by clicking on bigger-than-normal icons, like a soccer ball for games and a stack of books for “stories.” The Zac Browser also configures the view so no advertisements or other flashing distractions appear.

You can download the Zac Browser here!

This story blows my mind. Pathetic is the word that comes to mind.

Mesa special ed. director parked in handicapped spot by Jim Walsh of The Arizona Republic

The superintendent of Mesa Public Schools apologized to the father of two disabled boys who was angered by the district’s special education director’s use of a parking space reserved for the handicapped.

Superintendent Deb Duvall issued the apology in a letter she sent to Chris Beckham of Mesa this week.

Beckham, who has two sons with muscular dystrophy, said he was appalled by the “absolute arrogance” of Special Education Director William Santiago outside Zaharis Elementary School on Wednesday morning.

Beckham said he merely asked Santiago not to park in the handicapped spot again, explaining that those spaces are needed by parents dropping off disabled students.

But as the two argued, Beckham said Santiago told him, “Just because you have a hard life doesn’t mean the world owes you everything.”

Beckham complained to Michael Cowan, associate superintendent of schools, later that day. Cowan and Duvall met with Santiago and counseled him about the incident, but Santiago faces no additional discipline, said Kathy Bareiss, a district spokeswoman.

Illegal use of a handicapped parking space can result in a citation that carries a $101.25 fine. Santiago wasn’t cited in the incident.

Bareiss said it was raining and Santiago was taking his own child to school. She said he was blocked by traffic from reaching other parking spaces, so he parked in the handicapped spot briefly and went inside the school.

Santiago and Beckham got into an argument after Santiago returned to his truck, Bareiss said.

“They had a discussion over whether he should park there or not. He was in a rush, but it was inappropriate,” she said. “This is not something that we expect in the behavior of our administrators.”

Santiago was out of his office on Tuesday afternoon and unavailable for comment.

Phil Pangrazio, executive director of Arizona Bridge to Independent Living, which serves the disabled community, said he’s glad to hear Santiago was counseled for the parking offense.

“I think that’s acceptable to some extent, but it’s shocking and unconscionable given that person’s position in special education,” Pangrazio said. “You’d think he’d know better than that.”

[FULL STORY]

1. Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.
2. Remember to be good to yourself. Love, honor and value yourself. You’re doing a very hard job and you deserve some quality time, just for you.
3. Watch out for signs of depression, and don’t delay in getting professional help when you need it.
4. When people offer to help, accept the offer and suggest specific things that they can do.
5. Educate yourself about your loved one’s condition, information is empowering.
6. There is a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
7. Trust your instincts. Most of the time they will lead you in the right direction.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Stand up for your rights as a caregiver and a citizen.
10. Seek support from other caregivers. There is great strength in knowing you are not alone.

Source: National Family Caregivers Association (NFCA)

(from Dr. Brown’s ABA4Autism Blog)

A recent study in the journal Pediatrics reports that high fever decreases the symptoms of autism. Many parents have already observed this relationship, but this is the first study that documents the effect. Clinicians have also documented this effect. In 1980, a viral epidemic causing high fever hit Bellevue Psychiatric Hospital in New York. All of the staff there noticed an improvement in the autistic children they worked with. Sadly, after a few days, the fever dissipated and all of the children became autistic again.” The improvement can be very dramatic, sometimes like a metamorphosis in which the child with autism or some other neuropsychological disorder becomes almost normal when they are running a high fever. I present such a case history, titled the “The Sometimes Son” in my case history eBook, Little Bubba’s Not Ready for Nashville Yet.

A lot of you probably saw the story this week on 13 year old, Jacob Grabe, who had autism and was killed by his dad in September.  (Autism’s terrible toll: Parents risk hitting “a breaking point”)

The article talks about parents reaching their breaking point and killing their child.  These stories are not new and very sad to say the least.  I must say that I am more than a little shocked at the number of cases where this has happened.  I’ve seen a lot of stories on the “safe haven” laws around the country where parents can drop kids off at a hospital, police station, etc.  While these laws are intended to stop newborns from being killed and dumped, I wonder what these laws have to say about special needs children.  I know there has been a lot of talk related to age limits after the mess created in Nebraska, but age probably should not be a factor if special needs are involved.   Drop me a line if you have any information on this topic.

This article also mentions the divorce rate of families impacted by autism.

“There is an 85 percent divorce rate among parents of autistic children.”

I still have yet to find a source for any of these 80%+ numbers, other than someone seems to have pulled it out of thin air on Oprah.  I don’t totally doubt that the number is high, but would just like to see some hard numbers on it.  It seems like if they can tell you that you are X % more likely to be divorced if you live together before marriage or Y % more likely to stay together if you are of the same religion; someone could come up with some real data on this issue.

Related:

• Does Autism in the Family Lead to Divorce?
• Sources Of Stress For Families Of Children With Autism
• Katherine “Katie” McCarron - Beautiful, Precious and Happy Child with Autism Spectrum Disorder, Killed by her Mom
• Ulysses Stable - Killed by his dad
• Kyle Dutter - Killed by his dad (Kyle’s website created by dad.  So sad.)
• Will Lash - Killed by his dad - Ex-Bush Aide Fatally Shoots Son, Himself
• Brandon Williams - Killed by his mom

The ionKids system allows you to monitor up to four tagged objects at once. Children, seniors, pets or anything you might lose and want to keep safe. The system consists of a base unit, a handheld device that allows parents to monitor up to four tags simultaneously and a Wristag. Tag holders can be purchased seperately and can be clipped onto belt loops or lanyards; Wristags can be locked on children’s wrists. ionKids lets you set a variable zone around the base unit so you will know when your child wanders to far. If you can’t find them, use the locating device and let it show you where to go to find them. ENJOY YOUR TIME WITH YOUR KIDS. LET IONKIDS HELP TAKE AWAY THE STRESS.

One thing that I want to do with this site is recommend to parents stuff that works. Our 6 year old daughter, who is PDD, vanished one day while we were at a relatives house. One minute, she was right there, the next gone. Well, the next 25 minutes were filled with pure terror, until we found her climbing a tree in the neighbor’s backyard. We were frantically searching the neighborhood, interrupted a big party down the street and recruited more searchers, were looking in and around lakes in the neighborhood. We had the police on the scene (even though they were borderline worthless).

You get the picture. Total chaos.

I looked for a good GPS device to put on her so we could always know where she was from now on, but I could not find one ready for prime time that didn’t involve a third party or a lot of sophisticated technology that I didn’t have a lot of faith in (PDA, Phone, Internet Connection, etc.) If your kid goes missing, you don’t want to have to stop and logon to the internet or fumble with a cell phone. That’s for sure. The GPS solutions were also VERY expensive and bulky. We settled on the ion Kids unit and it works great. She wears the unit as a watch or has it clipped on to her clothes. If she gets beyond a predetermined range, the base unit which I carry in my pocket beeps and vibrates. If I don’t see her, I can switch to “find mode” and figure out which direction to go after her.

It’s great to be out somewhere and know that she is still within X feet of me at all times. The unit can track up to 4 kids at once.

There has been a lot of talk about the divorce rate of families who have a child with autism.  Is the divorce rate higher?  Some people have said that the divorce rate is as high as 80%, but this seems to be a number pulled out of thin air and mentioned on Oprah.

One thing does seem certain, autism often causes a major financial strain on families.  If you were on the brink of financial problems, a diagnosis of autism spectrum disorder, may push you over the brink.  As anyone who listens to Dave Ramey knows, “money fights and money problems are the #1 cause of divorce.”  So, it stands to reason that families impacted by autism may have a higher risk of divorce. The X factor in the divorce and autism debate is just how many couples end up closer and/or end up staying together for their child with autism?

This may fall under the category of “DUH” for autism parents, but a new study was just released that says autism puts a strain on family finances.

Study shows families’ financial strain from autism

CHICAGO - More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.

Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids’ health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.

“This is the first national survey that looked at the impact on families of having kids with special health care needs,” said lead author Michael Kogan, a researcher with the government’s Maternal and Child Health Bureau.

[FULL ARTICLE]

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Divorce is more common in families impacted by autism spectrum disorder and other special needs.