Tuesday, October 15, 2013

My Nanna

As we said goodbye to my Nanna today I wanted to write some thoughts about her life.
She was a woman of life. She loved to laugh, LOVED to dance, enjoy spending time with her family, tell stories and love those around her.
She was taken away from us years ago by the horrible disease of dementia. Her body finally found rest Saturday.
I will strive to live the rest of my life with her spirit in mind. I want to treasure every moment of life, love those around me because they are gone too fast, look for the "bright spots" in every situation and work hard to help fight Autism and Alzheimer's.




Tim Hermes

Location:Texas City, TX

Saturday, March 31, 2012

Autism Diagnosis Rates





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

Consider making a donation to support autism research.

© 2012 Autism Speaks Inc. Autism Speaks and Autism Speaks It’s Time To Listen & Design are trademarks owned by Autism Speaks Inc. All rights reserved.


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Sunday, February 27, 2011

The great Brandon Expedition




2 of our brave children and a friend decided they wanted to enjoy this beautiful weather by sleeping outside in their tent. So while trying to get supper ready and with MUCH advice from them I got the tent set up on the back deck.

Off they went with iPod's and flashlights, 15 feet from the kitchen (roughing it I know). Life in the great outdoors was thrilling laying out under the stars and all

This lasted for about an hour- then I told them time to shut everything down for the night-

5 min later they came running inside saying that someone was in our back yard, because they heard a noise. Now I suppose that flashlights and iPods will keep folks out of your back yard.
Mind you I can throw a rock and hit about 20 houses from our yard. But they heard a noise and were convinced someone was out to get them. So off they went to their beds. However they promptly returned to our room asking if they could watch TV. maybe I will take them camping in the real woods, that should be enough material to write a novel.

So proud of my little explorers. Oh yeah, I forgot to mention that they went back out there this morning to sit and play while I cooked breakfast. :-)


- Posted using BlogPress from my iPhone

Location:Home

Thursday, October 14, 2010

Asperger's and Anxiety

Wanted to pass on this article that was sent to me on Aspergers and Anxiety. I know we have dealt with this issue and Riley quite often:

Question

How to deal with Aspergers anxiety?

Answer

For children with Asperger’s, anxiety can be overwhelming. What causes this anxiety? Just about anything can cause anxiety. The stress of social situations when you have weak social skills, changes in your normal routine or in the order of things, depression due to the loneliness that can come with lacking social abilities, and frustration. Truthfully, frustration is the root of anxiety in children with Asperger’s Syndrome.

In children with Asperger’s, anxiety builds as frustration builds. Something as simple as being forced to make eye contact and explain your reasons for choosing a certain book to read can cause frustration. Imagine trying to find the words you need and learning that some of those words are missing. Imagine having to look someone in the eye and feeling actual physical discomfort when doing so. Imagine eating in a noisy, crowded cafeteria when the sights, sounds, and smells are painfully overwhelming. Imagine having a deep desire to make and keep friends, but not having the social skills needed to accomplish this desire. Frustration is around every corner and with that frustration comes anxiety.

Asperger’s anxiety must be understood before it can be eliminated or at the very least, managed. Knowing the child’s anxiety triggers, or daily frustrations is a good place to start. A helpful tool for learning about your child’s frustrations is “The 5-Point Scale and Anxiety Curve Poster”, by Kari Dunn Buron and Mitzi Curtis. This chart allows the child to use a visual aid to categorize his levels of anxiety.

Once you know the child’s frustrations, you can make a plan for these stressful Asperger’s anxiety situations. There are several choices of treatments for parents to choose.

* Counseling is a common treatment option for anxiety. Cognitive-behavioral therapy, as well as psychological counseling can help. Social skills training, sensory integration therapy, and language therapy can also help with the underlying causes of a child’s anxiety-inducing frustration.

* In some cases, medication is a necessary treatment. Anti-anxiety medications can make it easier for children with Asperger’s Syndrome to deal with the depression and anxiety issues. Since medications are not for everyone, a trusted doctor‘s guidance is necessary.

* Parents can choose to teach coping skills at home. Search the Internet for published resources that can make the job easier and more effective.

Asperger’s anxiety is a serious condition and should not be taken lightly. Finding the right combination of stress management and treatments will help your family deal with the frustration that leads to anxiety.

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Monday, September 13, 2010

Ah ha moment

During church yesterday I had one of those "Ah ha" moments. Attending a large church has it's definite advantages, and sometimes it can create an issue. Pinelake is a large church and the sight of all the people can be very intimidating for someone who has Asperger's Syndrome and sometimes for someone who doesn't have it.

We were excited to learn that Riley would have Susan's sister, Jessica and her husband Nick, as Riley's Sunday School teacher. At least having someone in the family as a teacher can be calming. However this week the Ragan family was gone on vacation. I did not really think about this prior to getting to church.

I dropped off the family at the door and went to park the car. As I came into church, I myself can feel overwhelmed at the number of people who attend church at times. So I stopped in to check on Riley before grabbing a seat for worship. He was sitting by himself waiting for church to start for the kids. I asked him if he was ok, and went about my way, as he said he shook his head yes.

While waiting for the sanctuary to empty, from the earlier service, I had the "Ah ha" moment. Susan was singing in the choir, so I was alone and I myself felt overwhelmed at the number of people. Then it hit me. If I was feeling nervous about being around the number of people, what was my son feeling with Asperger's? So I decided to go ask him. I went back to the kids worship center and asked him. "Riley, since Jessica is not here, would you like to come to big church with me?". A simple, but emphatic head nod yes was all I needed to get the point. He was struggling with everything. He came to the sanctuary, with a larger crowd, but this time he had a comforting factor, me. He did very well for his first time in the big church. I pointed out to him that Susan was singing in the choir, and he tried to get her attention by waving.

I know that seemed like a long winded story, and you may be thinking, "What's the big deal?". Well my "Ah ha" moment, was learning to change my thinking on how I see the world. I need to learn to look at the world through Riley's eyes. Instead of asking him to deal with our world, maybe we should change the world to reach out to those around us. Pinelake is an awesome place to worship with God's people. Coming together with His family and send our praises up. However for someone who suffers with social awkwardness, being in a room with a large group of people can be overwhelming.

We are learning every day to become better parents to a child with Asperger's. Learning to try and understand how he thinks and process information. Knowing where any problems may originate and cut them off. Make sure that we look at the world through his eyes, and try and process information in the same way he does.

Let's remember that not every person sees the world the way we do.


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Sunday, June 27, 2010

Boys

See the video above for the boys doing a cannonball while swimming at a friends pool.

Word for the week- Busy

So after working some crazy hours this week, Susan and I decided to take it easy this weekend. We cleaned house, I mowed the grass and cooked some delicious steak kabobs on the grill last night. Today we decided to come to the pool at the Y. Man is it hot outside. Even with an occasional breeze its still hot!!