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E-News from the Oklahoma Autism Alliance
Oklahoma Autism Network and Oklahoma Family Center for Autism Helping Families Affected by Autism
March 2009
Greetings!

This year is "Marching" by very quickly.  There are a lot of amazing projects on the horizon starting with Oklahoma's first annual autism conference scheduled for  November 6-7 at the beautiful new Embassy Suite Convention Center in Norman, Oklahoma.  We are currently in search of business sponsors to help fund this spectacular event.  If you know of a business who might consider a sponsorship, let us know by e-mail!    A member of the planning committee will follow-up on all sponsor opportunities.  

Plans are also underway for the first ever Summer Advance:  Be Ready for Life!  This is a teen/young adult program that will be offered this summer June 22-26.  The program will take place at Cheyenne Middle School in Edmond, Oklahoma and will feature national speakers Dr. Ruth Aspy and Dr. Barry Grossman for a one-day pre-conference on June 22.  The pre-conference will be available for parents, professionals, and students and will cost $25 at registration.  We will have space for approximately 300 persons.

An application process will be required to participate in the Summer Advance and due to design of the program will be limited to approximately 20 professionals and 10 teens/young adults and their parents.  The Summer Advance will provide opportunities for professionals and parents to build transition plans for their teens/young adults.  Parents who apply must be available to attend all 5 days with their teens/young adults attending Wednesday through Friday.  Selected families will attend Summer Advance at no cost.  Professionals must also attend all 5 days and will be charged $125 for the four day experience, $150 for the week.

The Summer Advance is the first of a series of programs designed to improve the long-term outcomes and life options of young people who have autism.  Young adults will explore new careers and learn a little more about themselves in a fun format.  Please mark your calendars now!  You won't want to miss this first of its kind new program.  To see the flyer, visit our website.
Staying on the Edge of Autism
Parents and caregivers know all too well the stress that can go along with caring for a child or adult with autism.  Research supports this and has demonstrated that caring for a child with autism results in significantly higher stress levels than parenting a child with other neurodevelopmental disabilities or a child without disabilities.  A recent study from Virginia Commonwealth University provides some insight into strategies that parents can use to most effectively manage the daily stress that can come with parenting their child with autism.  The study included data gathered from 93 parents of children between 4 and 12 years of age with an Autism Spectrum Disorder.  Participants were asked to complete daily measures that included stress and coping strategies, daily mood, autism symptomology, and parent personality factors.  The results indicated that on average, improved daily mood was associated with coping responses that included: 
  • problem solving or taking action to deal with the stressful situation,
  • seeking support and reaching out to others,
  • positive reframing or changing one's view of the situation to see it in a more positive way,
  • expressing emotions in a constructive way, and
  • working out the best way for dealing with the needs of the child given the limits of the situation. 
Coping strategies that were found to result in a more negative mood included:
  • blaming or directing anger at another person,
  • withdrawal from the situation, and
  • feelings of helplessness or giving up on the situation. 
Some examples of positive coping responses that parents may find helpful include: 
  • Seeking support from other parents who have had similar experiences, either through a parent group or a one-on-one friendship.
  • Learning more about strategies to help their child by reading or attending a training.  The Oklahoma Autism Network and other local organizations offer some great trainings that can help families take a pro-active approach to supporting their child. 
  • Identifying things that are meaningful to the family and finding ways to engage in those activities when possible.  For example, if your family enjoys going to the zoo, access support to develop strategies so that you can go to the zoo and feel successful in doing so.  This may mean talking to your child's therapist about strategies that will help make the trip a success.
  • And last but not least, whenever possible parents should find time to do things they enjoy, even if it means only for a short period of time (reading a book or magazine for 15 minutes a day) or once a month (going to lunch with a friend). 
Overall parents have a greater impact on their child over their lifetime than any other professional or person.  It is important that parents find time to take care of themselves so they are equipped to support their child in becoming the best that he can be. 
 
Pottie, C.G. & Ingram, K.M. (2008).  Daily stress, coping, and well-being in parents of children with autism:  A multilevel modeling approach.  Journal of Family Psychology, 22 (6), 855-864. 

Autism Related Legislation Update
by Dee Blose, parent (in her personal capacity as an advocate)

Status of Nick's Law - The House versions of Nick's Law were killed in the House in the Economic Development Committee by a "do not pass" vote of 10 to 5.  Voting went straight along party lines with the republications voting against Nick's Law and the democrats voting for Nick's Law.  After the committee meeting, Chairman Sullivan announced to the media that Nick's Law was now dead for two years.  The house leadership has a rule that makes any issue voted down in committee, dead for the entire session (the session just started and lasts for two years).  Nick's Law advocates feel that taking this action on the second day of the session was an attempt to shut advocacy down about this issue for two years.  BUT, advocates are not giving up that easily!  The house suspends its rules all the time, they could do it now if they chose to.

Read more...
Spectrum Perspectives
By Shawna Mums
What is the Spanish Word for Language?

Rarely does a day go by that we don't have some type of comedy hour at the Muns house, and today was no different than the rest. At 3:30 a.m. I was awoken by a blaring television. I ran into Jaymee's bedroom in the pitch black area feeling around for the TV. Normally, when a TV is on you can see the screen, but seeing how Jaymee enjoys adjusting the contrast, the screen was black. I don't know why I was hesitant to flip the light on as I could hear giggling coming from her bed. I started pushing buttons and realized the menu options had been changed to Spanish. Now, logically, you may be thinking pull the plug or push the power button right? There is little to no relationship between 3:30 a.m. and logical thinking or even thinking for that matter. As I fumbled around, while racking my brain for the Spanish word for language, the light flipped on and my son was standing in the doorway. I turned around and in a frantic manner, threw my hands up and said "Do you know the Spanish word for language" I can't blame him for laughing hysterically at me. I even told him he could laugh all he wanted, as long as he would fix it. He calmly walked over to the T.V. and turned it off, as he stated, "for future reference the Spanish word for language is IDIOMA".

 
Shawna is the parent of a child with autism, Jaymee, and psychology graduate student at Oklahoma State University.  More Spectrum Perspectives can be read on our website.
News From Oklahoma Parent Groups
News from Canadian Valley Family Center for Autism: 
We meet on the second Tuesday of the month at Yukon Church of Christ South, 11700 NW 10 Street from 7 to 9 pm (note:  Mustang Rd from 1-40 to 10th is closed due to construction).  Childcare is available.  Our group has a family focus and we have lots of social activities for the whole family.  We are in the process of setting our spring activities.  Please come and join us! Questions, call Cathy 354-6288 or Connie 350-7834
Read more....

News from the Hope Foundation:
March 14, 2009
10am-12pm
Muskogee First Church of the Nazarene
2700 E. Peak Blvd.
Muskogee, OK  74403
 
Come out and meet your legislators!  This is your chance to let them know how autism is affecting your family and how badly we need treatment options!
This event is sponsored by The Hope Foundation for Children with Autism and Related Disorders, Developmental Wings, Muskogee Autism Support Network, Vinita Autism and Special Needs Network, Claremore Autism Support Group, Tahlequah Autism Support Network, and Muskogee First Church of the Nazarene.  Call Christi at 616-5669 for more information.  Childcare provided.  Read more....

TAF Ready Set Run Logo
News from Autism Center of Tulsa
The Autism Center of Tulsa (ACT), a designated fund of the non-profit 501c3 Tulsa Community Foundation, presents the 3rd Annual Ready...Set...Run! 5K/Fun Run on Saturday, May 9 at Hunter Park, 5804 E. 91st St. in Tulsa. The 5K starts at 8 a.m., a 1K Fun Run at 10 a.m., and both events will be followed by an Awards Ceremony and Post Race Party at 10:30 a.m. Proceeds from the event benefit the Autism Center of Tulsa, which works to meet the needs of individuals and families affected by autism and related neurological disorders in the Tulsa area. ACT provides information and referrals, a workshop series, a parent workroom, professional training, and other services and supports.
        
 If you would like to become a team captain and form a family, corporate or school team to show support for a "Team Hero"-an individual with autism, contact ACT at 918.502.4823.  The event features an online teambuilding website: visit www.autismtulsa.org. The website will allow online registration for event participants, as well as online teambuilding for friends, family and co-workers to show their support.
         
If your company, school, or organization is interested in sponsorship or volunteer opportunities, contact the Autism Center of Tulsa at 918.502.4823 or [email protected].

This event will be held just after April-designated as Autism Awareness Month. For more information, contact Christina Newendorp, Development Director, at 918.502.4823 or [email protected].



News from Edmond Family Center for Autism: 

EFCA is a safe, fun way to get involved with others and help your child be successful in interacting!  

The 2nd Tuesday of every month is now a GREAT time that your whole family looks forward to!  The facilities at First Presbyterian include a gym, a movie theater, arts & crafts, puppet theater, stage, computer lab, library, pool tables, ping pong, and more!  Your whole family will enjoy this night!  So come and join us for a great night out! 

For the church website including directions, see http://www.fpcedmond.org.
See you Tuesday, April 14th from 6:30 -  8:30 PM!
Read more....
coach and student
A Coach is Just A Coach, Right?

By Sandra Adcock, parent

           Do parents hold preconceived ideas and judgments?   Can a parent still learn lessons that will benefit their child's education? I would love to share a recnt set of events that taught me a lesson and has had a very positive impact on my son.  This is all thanks to Just a Coach!

            My son Tanner, is one of those special gifts from God children for "Special Needs Parents." He does not like crowds, has trouble interacting with other kids, and other things.  My son started P.E. in the second nine weeks of this school year, 2008-2009. He was not getting to class on time, dressing out or participating.             After a short period of time, I went up to talk go the coach.  I made my son apologize.  I explained to Coach Jeff Neal, at Capp's Middle School in the Putnam City School Distict, some of Tanner's unique characteristics.  Read more...
TeamAutism.org - OKC Memorial Marathon
TeamAutism.org is currently putting together relay teams and recruiting individuals to participate in the OKC Memorial Marathon on Sunday, April 26 to raise money and awareness to help Oklahomans affected by autism. 

Please consider signing up to walk or run 3.1, 6 or 7.2 miles on one of our relay teams or committing to walk/run 13.3 or even 26.2 miles and in addition begin to raise money. 

The pay off from participating in a marathon with TeamAutism.org is big for you, the Oklahoma Family Center for Autism and most importantly for Oklahomans affected by autism. Go to www.teamautism.org or email us at [email protected] to sign up or to find out more information.
 
Join The Bounce For Autism
Provided by Deborah Decker, President, ASA - Central Oklahoma Chapter

There's a cool new event for kids of all ages that supports families living with autism. The Bounce for Autism is a fun, family event that benefits the Autism Society of America.  For one exciting evening, kids and grown-ups can bounce, play and laugh at Pump It Up, America's #1 inflatable party zone, while raising money and awareness for autism care, support, treatment and research.

Once you sign up, you can start a team with your friends and family and ask people to support your day of bouncing by collecting donations for the Autism Society of America.

Read more....
Elimination Diets and Autism
Tip of the Month by the Oklahoma Autism Network
 
To Eliminate or not to eliminate, that is the question many parents ask regarding dietary interventions for their child with autism.  Elimination diets involve systematically removing specific foods from your child's diet.  The most common foods discussed for children with autism are casein, the protein in milk and gluten, or wheat. 
 
Elimination diets may be considered when a child shows signs of an intolerance or allergy to a particular food.  Food intolerance is a digestive system response and symptoms can include but are not limited to stomach pain, gas, heartburn, diarrhea, and irritability.  A food allergy is an immune system response that occurs when the body mistakes an ingredient in a food as harmful and responds by creating a defense system.  Symptoms of an allergy can range from mild to severe and can include but are not limited to a rash, diarrhea, restricted airway, and anaphylaxis. 
 
Before starting an elimination diet there are several questions to consider:
  • Does my child with autism show signs of a food intolerance or food allergy?   If you are unsure talk to your child's physician or consult a dietician. 
  • What am I hoping to see change as a result of eliminating foods from my child's diet?  As with any intervention it is important before you start something new to determine what you want to change.  It is important to consider gathering some basic information for at least a week before you start the diet.  (see example of an information sheet that can be used before you begin)
  • How long will we try the diet before we decide if it is working and is worth continuing?
Diet changes for any young child can be difficult, but for children with autism it can prove to be even more challenging.  Many children with autism have strong food preferences and may only be eating a few foods.  If your child is only eating a few foods, it is important to consult a dietician or your child's physician before eliminating foods from his diet.  For example, if your child's preferred foods are all dairy based (milk, yogurt, cheese) you don't want to eliminate casein from his diet until you have added new foods that he will eat.  Adequate nutrition is critical to assure good growth and brain development and a child can easily become malnourished if their diet consists of only a few foods. 
 
Currently there is little research to prove or disprove the effectiveness of elimination diets (Millward, 2008).  In light of this fact it is important for parents to become their own investigators and to approach any dietary change for their child in a systematic and thoughtful way. 
 
Websites with additional resources
Talk About Curing Autism Now

Autism Network for Dietary Intervention

References
Millward C, Ferriter M, Calver S, Connell-Jones G.  2008.  Gluten and casein free diets for autism spectrum disorders.  Cochrane Database System Review, 2008.
 
Disclaimer
Information in this article is not intended to replace medical advice from your child's physician or other medical providers.  Parents are strongly encouraged to seek advice from a medical and/or educational professional before beginning any new intervention for their child with autism. 
In This Issue
Staying on the Edge of Autism
Legislative Update
Spectrum Perspectives
Parent Groups Across Oklahoma
A Coach is Just a Coach, Right?
TeamAutism.org
Bounce for Autism
In The News.....An Autism Love Story
Always Have Hope!
Quick Links
In The News:  An Autism Love Story

This is a story that you all need to see.  For those of us who wonder whether or not our child will ever find love or companionship, this will offer you much hope in your journey.  Take time to watch this story about two adults who have autism...and are!


 
Message of HOPE
oak tree
Always have HOPE...and never forget to LAUGH every day.
 
To keep a lamp burning, we have to keep putting oil in it.
             - Mother Teresa
 
Want Something Fun To Do?

The March sensory friendly film coming soon from the Autism Society of America.    The show will be Saturday, March 14 at 10 a.m., and the movie will be "Race to Witch Mountain." Please note this is a re-make of the 1975 Disney film "Escape to Witch Mountain" and is rated PG.
 
New Parent Group

A new parent support group has been established in Talequah, Oklahoma.  For more information visit www.easternokautism.com
Upcoming Trainings and Events
Check out our website for more information about these upcoming trainings and events.


Autism Tool Kit:  Life First!  Functional Behavior Assessment (FBA) and Behavioral Interevention Plan (BIP)
March 24 in OKC. 

Shawnee, OK:  On the Road Family Perspective Conference
March 31st; informational conference for parents and professionals.

Visual Supports Make It/Take It Workshop
April 2nd; Presented by:  Project PEAK

My Child Has Been Diagnosed:  What Should I Do? - Part I
April 8 in Oklahoma City. 

My Child Has Been Diagnosed:  What Should I Do? - Part I
April 15th in Lawton.

Autism Tool Kit:  Life First! Behavior Intervention Strategies for Autism Spectrum Disorders
April 21st

Joining Forces Supporting Family/Professional Partnerships Conference
April 25th

My Child has Been Diagnosed:  What Should I Do? - Part II
April 29th in Oklahoma City
Closing Headline
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