Our friends at Autism Action Partnership have asked us to encouraging everyone to take a few moments and put on your advocacy hats!    The Autism Action Partnership has been a pivotal force with this Autism Waiver and they are telling us that it appears that we are (once again) receiving some “legislative delays.” 

Please help elevate our voices and remind them that we are still waiting!  There once was a bill known as LB482 that created an autism waiver for early intervention services.  Families across Nebraska rejoiced when it passed!  But they waited and they waited.  It turned out that there were legislative delays that ultimately prevented it’s implementation.  So advocates made changes and then in May of 2009 we passed LB27 to create these much needed services.  And here we are 8 months later and due to “legislative delays” our children are still waiting for their early intervention!

Our loved ones are still waiting without services!

Please consider contacting Kerry Winterer and/or Ben Nelson. We have a sample message written below that you can copy and paste into your email.  Or feel free to write your own message.  But please take a few moments and stand up and be heard!  We also encourage you to have Grandma and Aunt Trudy and Uncle Chester send emails!!!!  We thank you for all that you do!

Information for Mr. Winterer can be found here http://www.dhhs.ne.gov/contact.htm
Information for Mr. Nelson can be found here http://bennelson.senate.gov/email-issues.cfm

Information regarding the waiver can be found here   http://www.hhs.state.ne.us/HCS/Programs/Autism-Waiver.htm and you can download a copy of the final legislative bill here.

(Here is a brief suggested message)

Mr. Winterer/Nelson,

The people of Nebraska need reform for Autism-related services, and you have the opportunity to make this a reality!

As you know, the Autism Treatment Program Act was passed into law in May 2009, yet we stand here in January 2010 without services for our children affected by autism. I urge you to expedite the process of enacting the Autism Waiver to provide real and permanent change to our youth on the autism spectrum. Nebraska deserves better.

Thank you for your action in advance.

Sincerely,

(NAME)
(ORGANIZATION)

The NE ASD Network has partnered with a number of networks including the Autism Society of America to develop a variety of web training modules on issues related to autism spectrum disorders.  It is a wonderful training tool for new parents, teachers, para-educators or anyone who wants or needs to learn more about autism. 

Be sure and check it out HERE!

Best of all the modules are FREE! This is a great item to share with your support staff at school! They often can’t get away to attend trainings because of the cost and time away.

This is an awesome alternative!!!!

(For more tips please visit our Autism News section where everything is archived!)

Rethink Autism (a web-based autism treatment platform) has a terrific modeling video on how to help your child understand and enjoy Halloween. Click HERE to watch the video and get a free one week trial of Rethink Autism.

Kids Against Bullying” was created for elementary school children, with a unique emphasis on children with disabilities. This Web site is an informative and creative resource to educate students about bullying prevention and provide methods to respond to bullying situations. The site features an animated cast of characters, information, celebrity videos, Webisodes, interactive games, animation, contests, and other activities.

Parents and professionals will find helpful tips, intervention strategies, and resources for use at home or school.   Check it out!                          www.pacerkidsagainstbullying.org/

(For previous tips please visit our Autism News section where everything is archived!)

Congressman Jeff Fortenberry will conduct two town hall meetings with constituents in Lincoln on Thursday, August 27.  The first will be held at the People’s City Mission starting at 2 pm.  The second will begin at 7 pm at Lincoln Southwest High School .

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Let’s Cook!  Life Skills for Kids on the Autism Spectrum combines video, slides and downloadable visual aids in an entertaining and informative digital format that demonstrates how to help kids with autism learn an important life skill – cooking.  At the same time, it features structured, predictable activities that help support children on the spectrum to engage and communicate in a natural social situation.  For more information, visit their website at www.mywire.com/pubs/lets-cook

This tip on declarative communication is another in the series that has appeared here under “Tip of the Day” that is based on the principles of Relationship Development Intervention (the RDI® Program) developed by Dr. Steve Gutstein.  The following information on communication is taken from that program.

Children and adults on the autism spectrum vary greatly in how much they talk.  At one end of the autism spectrum, when a child is non-verbal, parents want nothing more than for their child to start talking. They feel ANY words would be welcome! So parents ask many close ended questions and meaningless questions (e.g., What color is that?) just to hear them speak.  That is where I was as a parent not too long ago.  At the other end of the verbal spectrum, are those who talk a lot informing or incessantly asking questions, but they often miss the cues that the other person has quickly tired of listening to their favor topic.  Individuals on both end of this spectrum have big problems with communication which greatly hampers their ability to have meaningful, reciprocal relationships.

So how do we teach our children to use language for experience-sharing?  

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Extinction is a behavioral principle used in applied behavior analysis (ABA).  It can be used to reduce or eliminate an unwanted behavior such as disruptive behaviors, tantrums, swearing, whining, aggressive, as well as self injurious behavior. 

To learn more visit this site.

We received this email from one of our Kearney members:

My pastor’s wife recently sent this email out regarding a great resource for those on the Gluten Free diet.  The  Berean church planting pastor in Boulder, CO has food allergies and has to be on a gluten-free diet.  His wife, Julie, has given special  attention to his diet needs and for the past year has been working to start a  new magazine for people with similar diet problems.  That magazine is just being launched and the web site link below gives further information.  I hope this may be helpful to some of you.   

The magazine web site is:  www.delightgfmagazine.com

Thanks for sharing this resource Kristen!

(For more tips please visit our Autism News section where everything is archived!)

Families for Effective Autism Treatment or FEAT of Nebraska was founded by parents of autistic children. FEAT of Nebraska is a non-profit, 501(c) (3) organization for parents and families of children with autism. 

FEAT of Nebraska believes that newly diagnosed children with autism should receive intensive, quality, effective treatment that is based in research. FEAT’s mission is to provide education to families and the community on effective autism treatments, and to provide support to families seeking effective treatments for their children on the autism spectrum.

To learn more visit www.featofnebraska.com

(For more tips please visit our Autism News section where everything is archived!)

Don’t be overwhelmed.  Pick an autism topic and take it one step at a time.  It is daunting but no one will ever be as much an expert on your loved one than you are (except maybe your loved one)!   There are literally hundreds of books about autism and you are not going to be able to read them all.  Get referals from  other parents or teachers about what books they have found helpful.  (We have a growing list of recommended resources on our site) And be sure and save your funds by borrowing books and buying only those that you know you will need to reference over and over again!

Did you know?

The Autism Spectrum Disorders Network houses an amazing collection of books, DVDs and other autism materials.  These are available for educational professionals AND parents to checkout for FREE.   This is a great way to browse through material before you spend the money to buy!  Some titles just might become your parenting handbook while others won’t live up to the hype.  This is a GREAT way to make sure you spend your money on the books that are really going to help!

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If you are a newly diagnosed autism parent, you need to read her books. 

If you are a veteran autism parent, you should revisit her books again.  You’ll get something new out of them every time. 

Temple Grandin is an inspiration to us all and an amazing voice for individuals with autism.

http://www.templegrandin.com/templehome.html

(For previous tips please visit our Autism News section where everything is archived!)

O.A.S.I.S. is a resource created by parents of children who are diagnosed with Asperger’s syndrome. It provides information for families of children diagnosed with Asperger Syndrome and related disorders, educators who teach children with AS, professionals working with individuals diagnosed with AS, and individuals with AS who are seeking support.

There is a wealth of information at this site!

(For previous tips please visit our Autism News section where everything is archived!)

Confused by all the “biomedical” talk? Here is a good link that provides background of the multitude of possible therapies that fit under this category.

http://www.generationrescue.org/biomedical.html

(For previous tips please visit our Autism News section where everything is archived!)

A previous tip gave an overview of the Relationship Development Intervention RDI® Program and why Dr. Steven Gutstein developed it.  One of the most important and fundamental principles of RDI is “guided participation”.  The idea here is to have a parent, teacher, or older sibling guide the individual with autism through an activity or interaction so they make discoveries.  For example, the emphasis in RDI is for individuals with autism to make discoveries about people – rather than telling them what they should do or expect in a situation, etc.  Once a discovery has been made, then it can be built upon so that the individual with autism becomes increasingly nuanced in their understanding of how people and the world work.  An important goal of guided participation is to transfer wisdom and let the autistic child make discoveries so they develop thinking skills and a sense of competence.  RDI is a cognitive program where the goal is to develop brain connections not made during infancy. 

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Hopefully we will know more in the upcoming weeks about the status of this waiver.  The Autism Society of Nebraska will be sending any updates and IF we need to rally the troops to make calls or send emails we will let you know!   For now, we ask that everyone work on building your own personal network.  Talk to your friends and family and work on creating a team of supporters who will join you in sending emails.   Then when we put out a call to action we will have even more voices speaking up to make sure our message is heard.  This will be critical in any advocacy measures… Medicaid waiver or anything else that might come our way!

Thank you to everyone who contacted their senators!

(For more tips please visit our Autism News section where everything is archived!)