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.
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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...
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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.
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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....
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....
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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...
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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.
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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....
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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.
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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!
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Message of HOPE
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
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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.
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New Parent Group
A new parent support group has been established in Talequah, Oklahoma. For more information visit www.easternokautism.com |
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