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Don't Bite The Dog: Life with an Autistic Toddler Posted By: alesovoy
Posted On: 07/04/2008
The daily trials, tribulations, and moments of complete insanity faced by the mother of an Autistic toddler, a "normal" 2 year old, a rickety old horse, and a neighborhood full of judgmental parents

http://dontbitethedog.blogspot.com
       

Love my DAN! Dr. Posted By: minnakay
Posted On: 07/04/2008
We met with Will's DAN Dr. yesterday. Dr. Sloan with The Genesis Center. He is great. He was so excited about getting started, I was so excited. He understood that we don't have a lot of money and we chose the biggest bang for our buck kind of things. He was very knowledgeable, supportive, and I finally regained HOPE! Something I had lost over the last few weeks. So today getting Will off Gluten (already off casein) and getting rid of some yeast food items and starting on the supplements. I am overwhelmed but anxious! So far, not very good at getting those supplements into his little mouth!
     

The Final Frontier Posted By: mercurymom
Posted On: 07/04/2008
Yesterday I was rushing about to get John out the door on time to pick up this brother from work. All day John had run about in sock feet, no shoes. I sent him to get on his shoes and heard my Mom saying “Go get the other shoes John, one is not enough.” I stuck my head into the kitchen where they were and noticed Johns sock was on inside out. I laughed, “Mom did you help him get his sock on?” My Mom looked bewildered, holds up her disabled crooked arm and says, “Yea, I can’t even get my socks on, and you think I have the ability to help him? I guess he put that sock on inside out.”
“Mom, promise me you didn’t help him.”
“No, I can’t you know that.”
“Then, you just witnessed a miracle, for the first time in his entire life, John has put a sock on!”
“Really? I thought he could dress himself?” Mom ask looking surprised.
“All but socks, that’s why he wear slip on shoes or sandals in the summer, he has never been able to put on his socks, but now, he can dress himself 100%...just in time for his sixteenth birthday.”
So today we in America celebrate Independence day, it really is independence day for us at our house. The final frontier of socks have been conquered, and for the first time ever, I can skip the job of putting socks on my son myself. I am not sure which one is of us more excited about this accomplishment, me or John. Now like his shorts and shirts, he will more than likely wear them inside out, but I don’t care at all, what counts most to me...he did it himself!
Tags:  learning a new skill
     

The starting of treatments--help Posted By: striving
Posted On: 07/03/2008
Boy was I nervous giving my son his B-12 shot, so afraid I'd hurt him, gave him Emla cream at bedtime though and I just did it in his sleep at 6:30 a.m. I was so scared and I still am, think I will be for quite a while. Not used to giving shots. Hard to get the vitamins in him, they are in powder form that I can put in food, any ideas?
     

A sunny day, with a sad heart. Posted By: JanisMary
Posted On: 07/02/2008
It's a beautiful, sunny, 80 degree day in the usually frozen part of Alaska, Fairbanks. Up here, we do not take warm temperatures for granted. Since most of the year we are indoors, it takes encouragement and prompting to get my boys out of their routine indoor activities to go outside and play. I have to hide the Wii, legos, puzzles and game boys. We started the day with small group tennis lessons. That went well. But after lunch, I decided it is time to try to teach Jared, age 9, to ride a bike without his training wheels. First all the protective gear is put on, with great attention to detail. The velcro straps must match up just so. We start on the lawn. Jared starts to get on the bike. I let go of the handle bar to give him the greatest independence. The bike falls, and he gets upset. He walks away and refuses to look at me. After a few minutes of convincing him I will hold on to the handlebar and the seat, not letting go if he will get on the bike again...he agrees.
Our lawn is on a slight incline. Thanks to our dog, there are a few small holes as well. Jared gets on and pedals. We circle the yard three times, until my lower back can't take it any longer. I suggest he is ready to try the pavement. He agrees. Again, he gets on the bike, on the side of our neighborhood road.
I hold onto the handlebar and the back seat pushing him about two blocks up and back. Stopping to rub my poor aching back, I say, "this time I am going to only hold onto your seat and shoulders. Jared hesitates, but agrees. He starts to pedal. The bike moves forward, then curves to the left (and I am on the right), then falls...and he is really mad at me now. After wiping off the scratches, I convince him to try a scooter (for balance practice). He does it, but doesn't really do it right. Finally, after about two blocks I said, "you are suppose to stand on the scooter w/two feet and just scoot one foot down to push yourself along every once in a while as you move." He tries and falls. He gets up, with a bloody knee, and doesn't want to have anything to do with the scooter. As we walk back to our house, he has a sad look on his face and says, "My brain is just dumb with bikes and scooters. It just won't work."
I try to encourage him saying "You just have to overcome your fear, and believe in yourself, believe you can do it." But inside, I too have a sad heart.
     

IT'S A BOY!! Posted By: AIsForAutism
Posted On: 07/01/2008
Shannon asked me to post this information when it was official - so now it is official. IT'S A BOY! Okay, IT'S A BOOK!

I just released my second book IN HIS SHOES - A Short Journey Through Autism which was created primarily to educate typical peers (upper elementary through middle school) about autism in hopes of creating a more welcome community for kids on the spectrum in school and in our communities. This book follows the main character, 13-year-old Nicholas Hansen, as he makes the big transition from elementary to middle school. Moving up to middle school can be challenging enough, but add the fact that Nicholas has autism and is effectively non-verbal makes it even more challenging.

I ask readers to imagine spending the entire first year of middle school without being able to talk with friends and not understanding the concept of "hanging out." The book is unique in that it reaches out to young teens about autism and the main character has autism versus a side character or sibling.

Join Nick on his many adventures at the glorious beach, the dreaded mall and the nightmarish dentist office. Cheer him on as he attends his first dance, meets PALs and competes on the track team. With the support of his family, school staff, community members and school PALs, he faces and overcomes many challenges...even bullies!

Each chapter ends with a POINTS TO PONDER section which offers a great springboard for group discussions or additional thoughts. When kids finish this book, they might catch themselves thinking, "Hey, I experience some of that too. We aren't so different."


If any of you are locals in Orange County, CA, I hope you will join me for an Autism Awareness Presentation on August 10 at Placentia Presbyterian Church. I would be happy to send you a flyer for your own use or to post. I will be intertwining my autism awareness presentation with stories of Nicholas and also will have moms of kids with autism giving brief talks on "day in the life of autism." For more information on this presentation, check out http://www.placentiapresbyterian.org/

In addition, if any of you will be at this year's Autism Society of America National Conference in Orlando next week, please stop by and see me the AAPC booth!

I'd welcome any reviews on FoggyRock of IN HIS SHOES as I am obviously a bit biased on my "new baby boy!"

Thanks to all of you for your continued support and encouragement in my passion to increase autism awareness! For more information about the book, you can go to www.AisForAutism.net

Joanna K-V
www.AisForAutism.net
Tags:  autism book,  autism introduction,  autism awareness,  autism,  ASD,  autism kids,  autism spectrum,  autism resources,  autism introduction
     

MRI & EEG Posted By: chep
Posted On: 06/29/2008
Hello parents,
Has anyone gone through MRI and EEG? How was it? Any kids on medication and what are the side effects? MY son's neurologists has scheduled the above and I'm curious!!!She thinks my boy has silent seizures!! Ever heard of that?
Tags:  Silent seizures
     

longest day Posted By: kathy630
Posted On: 06/28/2008
It was a long day. Michelle was the best kid in the world. She has some pain and I have been keeping an eye out for any pain, since she can't tell me. She can't eat anything but soft foods for a few days and that is really hard for her. Akron childrens hospital was wonderful with her. Any how I will quit until our next adventure. Thanks again.
     

Tissue Bank: Autism Research Offers Hope Posted By: shannonj
Posted On: 06/28/2008
Hi Foggyrock members-
Autism Research Institute asked me to write a personal testimony about tissue donation for their recent mailer. It is such an important issue that I thought I would share it with you too....Here it is:

No parent wants to ever consider that they will outlive their child. It goes against every parental instinct. Hence, from before our babies are even born, we take every possible precaution to insure health, safety and a long life. From prenatal vitamins to sonograms, from baby monitors to diaper cream, from seat belts and helmets to life jackets, we spare no costs in protecting our children. It is more than a duty. It is an undeniable responsibility that isn't to be taken lightly.

However, history teaches us that, no matter how careful and cautious we are, we can't always keep our children safe. Especially in a world where the rates of autism continue to rise...in every community, and even in our own homes. No car seat or crib bumper set prevented autism from knocking on my family's door. My son, Wynn, was diagnosed ten years ago, in spite of my best efforts otherwise. My heart broke in two that day, as any parent can imagine. Even today, all these years later, I still feel physical pain while I learn of another child being diagnosed with this same life-altering disability. I find myself incredulous that we are still in the dark as to the causes of autism and of knowledge of treatments that would offer freedom and relief to a population that deserves so much more.

That is why I've registered both of my children with the NICHD Brain and Tissue Bank for Developmental Disorders. It's excruciatingly painful to imagine a life without either one of them, but pondering a future without answers is beyond comprehension. Those few minutes of my time might just make all the difference. I encourage you to take a few precious minutes as well.......

Shannon Johnson
Co-Founder
Foggyrock.com

FROM Autism Research Institute:

Dear Autism Research Institute Friends,

The Autism Research Institute is working closely with scientists and clinicians throughout the country in an effort to find effective treatments for this devastating disorder. According to these experts, limited availability of tissue from children who suffer with autism is hampering research because without actual tissue it is difficult to determine the basic biological defects responsible for this disorder. In an effort to increase research, the ARI has entered into a partnership with the Brain and Tissue Bank for Developmental Disorders at the University of Maryland in contract to the National Institute of Child Health and Human Development (NICHD) to support tissue donations.

Anyone Can Be a Donor
Anyone, regardless of age is invited to register as a tissue donor. The tissue bank is just as much in need of control tissue as tissue from those with autism. Tissue must be recovered within 24 hours because after this time the tissue has lost most of its usefulness for research purposes. Therefore, advanced registration is especially important in that it enables the intricate process of tissue recovery to occur in a timely manner.

Even if a person is not registered in advance, tissue donation may still be possible by calling the toll free number above. The Brain and Tissue Bank will make every attempt within its means to ensure successful tissue recovery.

To register:
Call 1-800-847-1539 or 1-410-706-1755 (from outside the continental U.S.) to request a packet or discuss any questions or concerns relating to tissue donation.

Contact the NICHD Tissue Bank:
University of Maryland
Department of Pediatrics
655 West Baltimore St., 13-013 BRD
Baltimore, MD. 21201-1559
Toll free 800-847-1539
Ph. 410-706-1755
Fx. 410-706-0038
Tags:  tissue donation
     

Two Choices Posted By: 4muskateers
Posted On: 06/27/2008
Two Choices

What would you do? You make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice?

At a fundraising dinner for a school that serves learning-disabled children, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: 'When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?'

The audience was stilled by the query.

The father continued. 'I believe that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.'

Then he told the following story:

Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, 'Do you think they'll let me play?' Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

Shay's father approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, 'We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning.'

Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. His Father watched with a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.

At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.

However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.

The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.

Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates. Everyone from the stands and both teams started yelling, 'Shay, run to first! Run to first!' Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled.

Everyone yelled, 'Run to second, run to second!' Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball ... the smallest guy on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.

All were screaming, 'Shay, Shay, Shay, all the Way Shay'

Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, 'Run to third! Shay, run to third!'

As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, 'Shay, run home! Run home!' Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team.

'That day', said the father softly with tears now rolling down his face, 'the boys from both teams helped bring a piece of true love and humanity into this world'.

Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making his father so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

AND NOW A LITTLE FOOTNOTE TO THIS STORY: We all send thousands of jokes through the e-mail without a second thought, but when it comes to sending messages about life choices, people hesitate. The crude, vulgar, and often obscene pass freely through cyberspace, but public discussion about decency is too often suppressed in our schools and workplaces.

If you're thinking about forwarding this message, chances are that you're probably sorting out the people in your address book who aren't the 'appropriate' ones to receive this type of message. Well, the person who sent you this believes that we all can make a difference. We all have thousands of opportunities every single day to help realize the 'natural order of things.' So many seemingly trivial interactions between two people present us with a choice: Do we pass along a little spark of love and humanity or do we pass up those opportunities and leave the world a little bit colder in the process?

A wise man once said every society is judged by how it treats it's least fortunate amongst them.

You now have two choices:
1. Delete
2. Forward

May your day, be a Shay Day.
     

Roadblocks Posted By: zacksmum
Posted On: 06/27/2008
Police and military Road blocks are also a fact of life at the moment.... I need to pass through at least one between home and the family farming business I work in.... One day this week, I had two of my office staff in the car, an old mazda 323, along with Zack - safely I thought strapped into car seat.....( he is off school due to elections this weekend), and our border collie x jack russell puppy..... we get stopped and the policeman asks me if he can search the car... of course I say... where would you like to look... in the trunk the policeman replies... I get out the car, and by the time I get to the trunk Zack is in the driver's seat... pressing the horn.... now I know he can unclip the seat belt!! I look cautiously at the armed army and police officers around... hoping that they are not offended by the noise from the car.... thankfully they dont' appear to worried about it.... the policeman then says he has seen enough (and i breath a sigh of relief... the horn is getting rather insistent!).. the next trick is to get the four year old and the puppy out of the drivers seat..... child has white knuckle grip on the steering wheel, so I have to wrestle him out of there, into his seat... amid very LOUD protests... and put his seat belt back on... then move the puppy of the seat too... After all this... I'm sweating profusely... partly fromt he wrestling match, and partly as am I am little concerned as to how the owners of the weapons are getting on.... the conversation with the policeman then goes something like this:
policeman (shaking his head in disbelief I think "is he always like this"
me: "yes, at the moment he is, he wants to drive the car"
policeman: "you should get him his own toy car"
me: "he already has several, he wants the real thing"
policeman "goodbye, you may carry on"

Two days later.....

We went through the same road block today, with the same policeman on duty... it was just Zack, myself and the puppy this time, we were in a different vehicle too, just to confuse matters. The policeman pulled us over, then recognised Zack.... and says:
"Oh, this is the young man who wants to drive"
The policeman leans into the car, shake's Zack's hand (thankfully Zack obliges with a hand shake and a smile!!)
The policeman then says that we can carry on without being searched!
     

Embarrassment Posted By: Taishan
Posted On: 06/27/2008
http://www.twincities.com/opinion/ci_9685529?nclick_check=1
Putting embarrassment in its place
By Caryn Sullivan
Article Last Updated: 06/24/2008 07:31:22 PM CDT

Last week, the Pioneer Press featured an article by John Campanelli with the
headline: 'Truth? They dare.' Campanelli wrote that one of the terrible
things about being a parent is 'like it or not, your young kids are going to
embarrass you.' He noted that when kids are young we tolerate their socially
unacceptable behavior, such as loudly commenting about Santa's bad breath
while perched on his lap. Adults are typically empathetic (they've been
there), and other kids are amused.

As kids mature, however, the circle that encompasses acceptable behaviors
shrinks. By middle school, adults consider students who comment on another's
halitosis rude, not cute. The mischievous kids who hovered at the perimeter
of the social circle either shift toward the middle or become ostracized.

I suspect that many who read Campanelli's description of the 4-year-old girl
who loudly commented about a gentleman's "big butt" had a similar
experience. Just last week, my 17-year-old with Autism Spectrum Disorder
(ASD) made such an outside-the-circle remark in public. What is a passing
phase for most parents seems destined to be my lifetime companion.

I suspect some families dealing with conditions like Tourette Syndrome, ADHD
or Alzheimer's, to name a few, are acquainted with the mortification zone,
where I often dwell. Since I have a relatively low threshold for
embarrassment, I've been mortified by my guy's behavior on countless
occasions.

Is he to blame? By virtue of his condition, he doesn't have a dependable
filter that stops him from blurting out comments or doing things others
might consider, but reject.

I feel guilty because I know the nuances of what is cool and what is taboo
are confusing, and the line between entertainment and embarrassment is fuzzy
for him. Yet, I also know he relishes making outrageous comments. Always the
entertainer, he can't comprehend why we laugh when comedian Jim Carrey talks
with his butt cheeks in "Ace Ventura: Pet Detective," but gasp when he
mimics Carrey in the crowded Chicago Shedd Aquarium ‹ with his shorts around
his ankles.

If I don't always know how to interpret or respond to his behavior,
strangers are understandably clueless. I've often longed for a symbol like a
wheelchair or white cane to broadcast his challenges. Absent that, I
constantly run interference to protect us all from others' misunderstanding
or judgment.

Lately, I'm wondering whether I'm observing the unintended consequences of a
lifetime of being coached into the circle, manifested at times by high
anxiety, low self-esteem and defiant behaviors. Is it time to accept that he
is who he is? Is it time, as Campanelli suggests, to "let it go"?

As I pondered these questions Sunday night, my husband returned from
searching for 25-year-old Keith Kennedy, a man severely challenged with
autism who wandered away from his Wisconsin camp. A week after Keith Kennedy
disappeared, firefighters found him, dehydrated and covered with bug bites
but, miraculously, alive. Suddenly, my concerns about embarrassment were ‹
well, embarrassing.

While having a "runner" like Keith Kennedy is inordinately stressful on a
family, it's one of many challenges of living with a person with a
social/communication disorder.

I've canvassed friends about their most embarrassing moments with their
special needs kids. Junior pooping in the public pool on the hottest day of
the year took the prize.

While we've endured some unmentionable incidents, we've persevered through a
thousand more-trivial embarrassments ‹ touching the untouchable on a White
House tour, speaking the unspeakable at the movie theater ‹ with the threat
of "the big one" ‹ a pool-closer ‹ always lurking in the background.

But everything in life is relative. With Keith Kennedy in the hospital ICU,
I recognize there are worse things in life than being glared at or stared at
in public.

With him safely asleep in his bed, I appreciate our son is a complex guy who
adds a lot of color to our lives. He's the one who put me under the table
when he told our new friends that "everyone who read 'The DaVinci Code'
knows that Jesus was banging Mary Magdalene," but made my heart soar by
performing a stand-up comedy routine at his new school; he's the baby lover
who makes us squirm when he touches or blows air kisses to every baby he
encounters, but made me proud by offering his money jar when he learned the
University of Minnesota was raising money for a new Children's Hospital;
he's both a teen-age guy who loudly told his brother to check out a woman's
cleavage and a mama's boy who says, "Mom, you have bags under your eyes ...
but you're still beautiful."

I see that I have a choice about how I relate to him. I can embrace the
lighter moments and deflect the embarrassing ones. As to others, I can
establish a context for his behavior so they might be less offended or hurt
if he ignores their attempts at conversation, for example. As to him, I can
keep trying, gently, to impress upon him that good manners are important and
that others' feelings matter, too.

When I confront the mortification zone, I can remember the Kennedy family's
courage and fortitude. I can wrap myself in armor constructed of our guy's
sweetness and humor and coated in the Kennedys' faith and resolve, and stop
being embarrassed by outside-the-circle behaviors. If the Kennedy family can
survive the past week's nightmare, then I should be able to kick
embarrassment out of the house and invite acceptance to move in, at long
last.

Caryn Sullivan is a Minnesota attorney and writer. Her column appears from
time to time on these pages. Her e-mail address is
carynsullivan@comcast.net.
       

Yesterday was our evaluation. Posted By: minnakay
Posted On: 06/26/2008
Well, its official, my son is Autistic. Down on paper makes it so real. I've known for a few months now but to have it written down on one of those diagnosis sheets.....Autism (diagnosis code 299.00). I asked the neurologist, so this is official, and he said yes, if you need it in writing I can take care of it. I guess for the deeming waiver.?.
I have decided their is not a word for this emotion.
I'll start back with the hope tomorrow...
     

The longest day Posted By: kathy630
Posted On: 06/26/2008
Tomorrow Michelle is going into Akron Childrens Hospital for some oral surgery. She can't eat and that is going to be a big deal for her. It is scheduled for 11:30, so it is going to be a long day. I've done this before but she was only 6 or 7. I have been the biggest grouch for the last week. I threw a fit last night and fed her and put her to bed, then I had a few cold beers and watched TV in bed. I was just so aggravated that I did not want to be around anyone even my Honey. Sometimes I just can't tell people how I feel and I get irritated and even depressed. Thanks for letting me unload on you great people.
     

the face of autism Posted By: Sharon3
Posted On: 06/26/2008
     

Autistic Man Recovering After Rescue In Wis. Posted By: Zurama
Posted On: 06/25/2008
Autistic Man Recovering After Rescue In Wis.

By Steve Karnowski Associated Press. tinyurl.com/52vweo

Keith Kennedy's parents figure they'll never know why their autistic 25-year-old son wandered away from a camp for developmentally disabled adults and spent a week lost in the woods. They're just grateful rescuers found him in time.
And Bruce and Linda Kennedy, as well as their son's doctor, say they likely will never know how he managed to survive without the skills to fend for himself, and with a failing transplanted kidney.
Keith Kennedy was dehydrated, suffering from hypothermia, naked, filthy, and covered with ticks and bug bites when a St. Paul firefighter found him Sunday evening. He was in thick brush next to a creek bed on swampy ground about a mile from the camp in northwestern Wisconsin. He had been missing for just a half-hour shy of a full week, and didn't take his anti-rejection drugs.
"How did he survive? He's a very lucky young man," Dr. Timothy Whelan of the University of Minnesota Medical Center, Fairview, told reporters Monday. He probably had just hours left to live by the time he was found, the doctor said.
But by Monday morning, Kennedy's condition was stable and improving. His temperature was back to normal from a low of around 84 and he was getting fluids. The ticks weren't the type that carry Lyme disease, but Kennedy was getting antibiotics as a precaution.
"Right now his kidney function is not very good, but he is making urine," Whelan said. He said it hadn't been necessary so far to put him on dialysis, and the doctor said he was optimistic that the kidney Kennedy received from his father in a 1995 transplant would recover well enough.
Kennedy's clothes weren't immediately found. Whelan noted that it's not unusual for hypothermia victims to think they're hot and take their clothes off. But Linda Kennedy said it wouldn't have been unusual for her son to take his clothes off "if they were wet or awful." Fortunately, temperatures were mild.
The 13 campers at the Trade Lake Camp in Grantsburg, Wis., had just been given their nighttime snacks and the others were heading off to bed when Kennedy disappeared June 15. Staffers speculate he sneaked back to the cafeteria to get more popcorn, then ran off because he was afraid of getting in trouble.
Hundreds of volunteers joined law enforcement officers, firefighters and medics in the search that followed. His parents prayed for a miracle and refused to give up hope, but by Sunday evening had begun discussing with authorities whether to scale back the search. When they heard shouts that he had been found, they got in the sheriff's car so quickly they didn't get confirmation that he was alive until they were en route to the scene.
"I can't even put it into words," Linda Kennedy said, choking up with emotion. "You can only imagine what we've been going through. It's parents' worst nightmare, it's my definition of hell on earth. It's a nightmare that just wouldn't end. And it's just so incredible how everything came together and we're at this point now. We're just so grateful and so hopeful."
Bruce Kennedy said it would have been fascinating to have followed his son on his journey. But his son, who can speak only four words, isn't likely to provide any insights on what happened.
"We're not anticipating him communicating anything about this," he said. "He's never spoken in the past tense in his life."
Keith Kennedy had been a "runner" since he was 3 years old, his mother said. The parents kept their Minneapolis home where he grew up tightly secured. "Our house really, truly was like Fort Knox," she said. They tried constantly to make sure someone knew where in the house he was, but he would still manage to escape go to nearby stores or factories, they said.
"I think he bit off more than he could chew," Bruce Kennedy said. "I think he got overwhelmed and he lost his bearings and somehow landed in a horrible spot. But maybe we'll never know."
Whelan said there's no good way to know if Kennedy ate or drank anything in the woods, though his mother said he would have known enough to drink from a stream if he was able. He probably lost a lot of weight, though his doctor and parents didn't know how much.
Searchers had passed near the spot where he was found at least a couple times, but it wasn't clear if he was there yet or ended up there later. Linda Kennedy said the lesson is that it's imperative for searchers to keep going back over areas that have already been checked.
The Kennedys, who live in Roseville while their son lives in a group home in Shoreview, said they'll likely stay glued to either side of him when they take him out in public again. Bruce said he was going to do some research into GPS tracking devices. And they weren't sure if they'll let him go to camp again.
"When hell freezes over," Linda Kennedy joked.



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Tags:  autistic,  lost in the woods,  found
     

How man have come into the light? Posted By: Caliboo818
Posted On: 06/24/2008
THE “DARK AGE OF AUTISM” IS DEAD
Looking back this year’s conference stood in sharp relief to previous years. Earlier years had an element of foreboding. In fact, for years the first night of the conference was reserved for a candlelight vigil with parents sharing their stories of suffering. It was the equivalent of the autism “wailing wall.” Words were not big enough to adequately articulate the enormity of our anguish.

This year the energy radiated from a different place. The focus was not on surviving the present, but on moving confidently into the future. Before, laughing was also taboo. This year a sense of humor was out and about in full force. From the bright eyes and smiling faces shone a confidence that was breathtaking in its redemption.

The Dark Age of Autism was as real and destructive as the epidemic itself. Parents lost their spouses, lost their jobs, lost their savings, lost their friends and lost their way. A diagnosis became an ongoing tragedy that fed on and consumed itself. Played out in thousands of doctors’ offices and picked up by the press a theme of blame, shame, and censure was waged against parents who refused to also lose their children.

Doubt and disbelief grew into defiance and then open rebellion. Asking for help from your school was seen as an act of civil disobedience. Asking certain questions of the medical establishment was akin to burning the flag. Asking government agencies to perform their duties was an exercise in futility.

Ironically, in the years of self-sacrifice and searching to save their children parents found themselves. The Dark Age of Autism forged a parental response more in keeping with a political revolution than a medical diagnosis.

Along the widening plane of engagement parents found their voice. If your background was medicine your voice was needed; law, information technology, administration, accounting, education, IS, public relations–every profession and every voice found a matching need along the spectrum.

Until finally it can be declared the “Dark Age of Autism” is Dead! Never again will our community suffer the same type of terror that tested our limits and tried to embargo our voice. Never again will asking for help be callously ignored and construed as a weakness. The open rebellion has grown into a revolution demanding change.

Welcome to the “Age of Freedom.” Previous obstacles become petty annoyances when our hard-won freedom from fear and faith in the future is measured against the puny and the wrong. Like bad actors in a canceled comedy the same talking heads appear on TV and in print spouting the same tired shtick, unaware the country has moved past them.

While we have moved past you, we have not forgotten you – government and industry enablers and apologists will be dealt with in due time.

A system that allowed this to occur, spinning numbers out of whole cloth to scare parents, which has created the single largest problem the world faces today will end. It will not be pretty, but in life there are prices to pay for your actions. In a poetic turn of justice The Dark Age of Autism is about to descend on its creators.

     

Helping HANDS for Autism Act Introduced in the House Posted By: Zurama
Posted On: 06/23/2008

Helping HANDS for Autism Act Introduced in the House
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
By Carin Yavorcik

Bill provides for lifespan autism services and awareness

Members of the U.S. House of Representatives introduced a companion to the Helping HANDS for Autism Act this week.

The Helping HANDS for Autism Act (HR 6282) is a three-part legislative package designed to support families dealing with autism spectrum disorders, increase awareness among first responders and public safety officials and provide housing options and services for adults with autism. It was introduced by Reps. Kay Granger (R-TX), Jim McGovern (D-MA), Chris Smith (R-NJ), Mike Doyle (D-PA), Dan Burton (R-IN) and Ruben Hinojosa (D-TX). The bill is a companion to S 2950, introduced in the Senate last April.

An estimated 30 million people in the world have an autism spectrum disorder, 1.5 million in America alone. Every day in America, 60 families learn their child has autism. These families face challenges of care, support, education, financial hardship and medical and health care issues that make autism a national public health issue. Though there is no cure, autism is treatable and individuals with autism have tremendous potential. What the Bill Does:

1. Creates a grant program to provide "autism navigator" services to help families navigate the web of services and care they need. Navigators will help guide families to current health, education, housing and social services that are often available to individuals on the autism spectrum. Too often, families feel overwhelmed after diagnosis and often lost as to where to turn for help. The program will help connect families to important treatment options soon after diagnosis, help families identify education options, and help coordinate individuals' care and community support.

2. Provides for the development, demonstration and dissemination of a standard curriculum for the training of first responders (police, fire departments, emergency medical technicians and other volunteers) in assisting individuals with autism and other cognitive behavioral disabilities. It provides grants to states and local governments to support training of first responders. People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001. That is why training is so important. Something as simple as first responders turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter.

3. Creates a HUD task force comprised of appropriate national and state autism advocacy groups, community-based organizations and parents who are charged with developing a housing demonstration grant program for adults with autism. The goal of the grant program is to provide individualized housing and services to adults with autism spectrum disorders.
Tags:  autism bill in the house
       

CNN: Should I Vaccinate My Baby? Posted By: Zurama
Posted On: 06/23/2008
By Elizabeth Cohen

Five years ago, Kathye Petters-Armitage's first child received the exact vaccinations on the exact schedule recommended by her pediatrician.

But when she gave birth to her second child, Petters-Armitage had a change of heart.

In the intervening two years, she'd read a lot about concerns that vaccines cause autism and decided to ask her pediatrician to give her new baby fewer shots spread out over a longer period of time.

"I wasn't a hundred percent convinced there was a link between autism and vaccines," said Petters-Armitage, of Santa Clarita, California. "But I didn't want to be one of those parents who found out the hard way."

http://www.cnn.com/2008/HEALTH/family/06/19/ep.vaccines/index.html
Tags:  vaccines,  autism
       

WHAT DISEASE DO YOU WANT YOUR CHILD TO GET? Posted By: Zurama
Posted On: 06/23/2008
By Julie Obradovic
Reprinted from Age of Autism

In the aftermath of the Green the Vaccines Rally, the inevitable criticism of the participants and their purpose swooped in with the force of the thunderstorm that struck DC that afternoon.

In the recent years of being an "Autism activist", I have found it much easier to simply steer clear of this criticism. Message boards, Bloggers and editorials that paint me as a fear-mongering fool who uses her child as an experiment only put me in a bad mood.

Initially I was compelled to argue, fighting for my dignity and looking for compassion. What I realized is that is exhaustive work, and frankly, quite fruitless, especially when the bully you're battling is anonymous.

And so it has been that I have chosen to ignore the negativity and focus on the task at hand: finding a way to help families with Autism improve the health and well-being of their children, themselves, and their finances.

None-the-less, occasionally it becomes necessary to stand up and be heard. It's as if the opposition got a new memo on how to belittle one of "us", and frankly, it's annoying.

For starters, as JB Handley addressed in his essay "Moving the Goal Posts", we are now guilty of "changing the game". Evidently we can't make up our minds about what part of the vaccine or vaccines cause Autism.

Is it the mercury? Is it the aluminum? Is it both? Is it too many vaccines in combination? Somehow our inability to stick to one story makes us inauthentic.......

http://www.ageofautism.com/2008/06/what-disease-do.html
Tags:  autism,  activism,  cause
       



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