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Top Ten Ways to Influence a Teen Girl: #3 Small Matches, Big Torches.

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Sleeping to #fightautism

SLEEP, we all need it, and almost every person loves it. How does autism effect sleep? For all of you parents out there you remember the first couple months of having a baby. Waking up over and over again in the middle of the night because your baby needed you. Needed you to eat, to change a diaper or just to feel comforted. As those days turn into weeks of sleep deprivation, I remember being short tempered, easily frustrated, forgetful, just plain old exhausted.

Many kids with autism also have issues with sleep. My son Hayden didn’t grow out of the baby sleep issues, instead they got worse. From the ages of 1-3 years old it was a ‘normal night’ to be up with him multiple times, sometime for as long as 2 hours at a time. His little body would go stiff with gut pain, he’d want me to hold him or press on his belly and after the minutes slowly ticked by into hours of tears he would pass gas and then collapse exhausted into bed.

After making diet adjustments we were able to resolve the gut pain issue. However his sleep still wasn’t good. All of us feel so good after a great nights sleep, awake, alert and ready to take on the world. Can you imagine having only one or two of those nights each month? It would be tough for anyone to catch up in their learning and to pick up on social cues, all the more for kids with autism.

Up to the age of 5 that is how Hayden, his parents and family lived. I’m so thankful for a loving committed wife that would take turns getting up with Hayden so that each of us would get an OK nights sleep (while the other parent got somewhere between 4-5 hours). In the middle of the night Hayden would be fully awake, giggling uncontrollably, wanting to wrestle, watch TV, play with toys and having enough energy to climb the walls for hours at a time.

One of the tricks we learned was that Hayden sleeps better with some kind of pressure. He would fall asleep with a parent hugging and squeezing his little body but wouldn’t stay asleep. That’s the reason we found PUPPY. PUPPY is a HUGE stuffed animal we found at Sam’s Club, about 4 foot long and weighs about 18 pounds. On Christmas morning when Hayden got PUPPY he loved and Melissa and I are grateful for PUPPY too! When Hayden falls asleep we slip out of the sheets and place PUPPY over/around him and most nights he now sleeps from 9pm to 6:30am.

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Maverick

For years we have talked about getting a dog for Hayden. After hearing so many inspiring stories about autism therapy dogs, how could you say no???
That is until you really look into getting one and find out that a trained certified companion dog costs around $13,000.00 and takes years to get…

After a lot of research, and trying different paths I think we’ve found a winner in Maverick. Mav is half Golden Retriever and half Labrador Retriever, both Hayden’s favorite breeds.

I wish i had a video of the first time Maverick walked into our home. The way Hayden’s face light up with a smile, his eye contact and focus was unbelievable as he was drawn to his new dog. He walked slowly from the back of the house to the front each step getting closer to his dream come true. About ten feet away from the dog he couldn’t contain himself any longer, he jumped in the air, smiling and laughing and clapping his hands. Then he stopped and quietly, deliberately walked up to Mav and gave him a hug.

Now we are working with trainers so that Mav can be certified as Hayden’s Therapy Dog. At the same time we are learning to be “dog people”. For example I can only laugh when I tell Mav to go to bed and he runs to my room and jumps in my bed.

In the meantime, Hayden is learning about feeding, grooming, walking, playing and making social connections with his dog. Having his dog has added so much to Hayden’s quality of life. It’s enriched his days with more joy and more responsibility. I can’t wait to see all the good that will be happening six months from now!

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This quote help…

This quote helps me understand my Hayden a little better:

If a man does not keep pace with is companions, perhaps it is because he hears the beat of a different drummer. Let him step to the music that he hears, however measured or far away. – Henry David Thoreau

Oh, if I could only hear that drummer too….Jesus, please let me listen in.

Today AutismSpeaks is getting people to rally together in Washington DC to get congress to pass this bill- please help:
“Please help me contact our Members of Congress to ask that they support the ABLE Act and vote it out of Congress. This …See More
Today AutismSpeaks is getting people to rally together in Washington DC to get congress to pass this bill- please help:
“Please help me contact our Members of Congress to ask that they support the ABLE Act and vote it out of Congress. This …See More

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The front page of USA today is a big article about autism research. Making progress as research is released during Autism Awareness Month!

The following r…

The following remarks were delivered by Mark Roithmayr, president of Autism Speaks, at the Centers for Disease Control in Atlanta on March 29, 2011. You can follow him on Twitter @markroithmayr.

Merriam-Webster defines the word epidemic as “Excessively prevalent. Affecting a disproportionately large number of individuals within a population, community or region at the same time.” 

 With the new Centers for Disease Control and Prevention numbers now showing that 1 in 88 children in the United States are being diagnosed with autism – nearly a doubling of the prevalence since the CDC began tracking these numbers – autism can now officially be declared an epidemic in the United States.

We are dealing with a national emergency that is in need of a national strategy. At 1 in 88, we now have over 1 million children directly affected by autism. According to a newly released study the annual cost of autism in the United States is a staggering $126 billion annually, more than tripling the cost analysis from six years ago.

Behind all these statistics are real families, real individuals struggling each and every day. Some with autism are struggling to find satisfying jobs where they can productively use their talents and abilities. Others with autism have extremely complicated medical and social challenges. Make no mistake though, wherever one falls on the spectrum, all with autism struggle each and every day. And it is clearly time we, as a caring society, commit to a National Strategy.  A comprehensive National Strategy that substantially increases all efforts to date. A call to action that:

  • Funds more basic science uncovering the genetic underpinnings of autism.
  • Funds more environmental research detecting the causes of autism.
  • Accelerates the funding and development of effective medicines and treatments.
  • Commits to a strategy where all children with autism from every background are diagnosed no later than 18 months of age.
  • Commits to a National Training Corps recruiting more therapists and service providers as well as specially trained teachers and teacher assistants into the field.
  • We also need to address the growing issue of adults with autism specifically around continuing education, employment, housing/residential living and community integration. Here too, we need a focus on a National Training Corps to recruit and train professionals to work with our adults.

As the nation’s leading science and advocacy organization, Autism Speaks today calls on the entire nation to commit to this National Strategy, a true public-private partnership:

  • From President Obama to each of the Republican candidates for President to all Members of Congress.

We desperately need further commitments from….

  • The CDC and Dr. Frieden whose very funding of this prevalence study is in jeopardy of being cut going forward.
  • Secretary Sebelius and the Department of Health and Human Services.
  • Dr. Francis Collins and the National Institutes of Health.

And it is not the federal government alone we call on.  We need the private sector as well as state and local governments to be part of this National Strategy:

  • Right now insurance companies and the majority of self-funded plans under ERISA discriminate against families with autism denying reimbursement for the basic, evidenced based services that can often dramatically improve the quality of life for their children with autism.
  • There are pharmaceutical companies who can speed the process of effective medicines for people living with autism to improve communication, socialization and behavior, the core symptoms of autism.
  • We need companies across all industries to commit to hiring the 74% of adults with autism who believe they have the potential to be employed if just given the opportunity.
  • And we need employers of all parents who have children with autism to become much, more family friendly as way too many mothers of children with autism have had to stop out of their careers to be able to care for their loved ones because their work environments could not find a way to accommodate their schedules.
  • We need local school systems to deliver individualized and quality driven plans to meet autism’s ever growing demand for appropriate special education services.
  • We need faith based and community based organizations who can provide respite services for parents and caregivers as well as recreational and community integration opportunities for people with autism.
  • And the list goes on to include siblings, grandparents, aunts, uncles, friends and neighbors. At 1 in 88, we are now hard pressed as a nation to find anyone who is not touched by autism.

Ultimately the question we need to ask ourselves is why over the last two decades has there been such a tremendous increase in autism?  Dr. Peter Bearman of Columbia University was funded by the NIH to answer this very question. His findings have revealed that the increase in prevalence is only partly explained by a broadening of the diagnosis, improved detection, and more awareness.  A large portion of the increase some 50% remains unexplained.  That is why we must aggressively fund research, including the critical study of potential environmental factors.  We need to find the answers.  

At 1 in 88, let me be clear, the United States is experiencing an autism epidemic.

This is a national emergency. We need a national strategy.

For more on the new autism prevalence numbers released by the CDC, visit our prevalence page.

Sincerely,
Mark Roithmayr
President, Autism Speaks

Autism Speaks contact information:
Email Address: editors@autismspeaks.org

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Obviously this isn’t about to become a fashion blog. We are wearing Blue for the month of April to raise awareness for Autism.

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Happy Opening Day Rangers. Wearing some BLUE Rangers gear for Autism Awareness.