AspienWoman Mentor Interview Series: Author, Advocate and TedX presenter, Jeanette Purkis

EnjoyHi5!Autism Babymiracle2005:

Happy New Year!

Enjoy Taniaann Marshall’s  inspirational ‘AspienWoman Mentor Interview Series’ on  author Jeanette Purkis.  TedX presenter Purkis is the author of  Finding a Different Kind of Normal: Misadventures With Asperger Syndrome.

Jeanette has a diagnosis of Asperger Syndrome. She also has a Master’s degree in Fine Arts from RMIT University and works for the Australian Public Service as a policy adviser. Jeanette spent her early life reacting violently against her feelings of embarrassment, anger and confusion about her ‘difference’ from other people. She was unaware until well into adulthood that everything she found
difficult, including her lack of success in forming relationships, could be a
result of having Asperger Syndrome. Jeanette recently received an Excellence
Award from the CEO of her department for promoting inclusion and advocating for
disability. She is a frequent speaker at autism conferences and she facilitates
a support group for women on the autism spectrum. She lives in Canberra,
Australia.

Originally posted on Tania Marshall:

AspienWoman Mentor Interview Series: Author, Advocate and TedX presenter, Jeanette Purkis

Tania:  Hello Jeanette and thank-you for agreeing to become a Mentor in the Aspiengirl/Aspienwomen mentor Project. We think you are a fantastic role model and certainly have a lot to offer in terms of lived experience.

Jeanette: Thanks :)

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Tania: I first came across you when I read your book “Finding a different kind of normal”, I was amazed how much you had gone through in your short life and still be alive. I love stories of people overcoming challenges. You know what I mean?

Jeanette: My early lif was very troubled. I experienced a lot of difficulties when I was a child and a young woman. I didn’t really have a lot of support to help me make the right choices. I didn’t have a diagnosis until I was 20 and so my teenage years were very hard.

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‘Imagifriends of Imagiville’ New Year’s Calendar

“Even those with Autism and disabilities can make a great and wonderful difference in this world and even they can fulfill their dreams and goals. ”               – D.J. Svoboda

Get ready for the 2014 with Daniels ‘Imagifriends of Imagiville’ calendar!

PERFECT GIFT FOR THE HOLIDAYS: Support DJ Daniel Svoboda, the amazingly inspirational and talented artist with Autism who created My Imagiville and just launched “the 2014 IMAGIFRIENDS Calender” for the Holiday Season – Purchase yours today at: http://www.myimagiville.com/product_info.php?cPath=7&products_id=100

Photo: PERFECT GIFT FOR THE HOLIDAYS: Support DJ Daniel Svoboda, the amazingly inspirational and talented artist with Autism who created My Imagiville and just launched "the 2014 IMAGIFRIENDS Calender" for the Holiday Season - Purchase yours today at: http://www.myimagiville.com/product_info.php?cPath=7&products_id=100

BOOK Coloring book

D.J.’s book and coloring book!

Friends of DJ Svoboda and the Imagifriends

Friends of DJ Svoboda and the Imagifriends  – DJ celebrates abilities, spiritual gifts, love and art ~ all in a jubilant and colorful way.  His message is of hope, embracing life~ and so much more.  Please join us in building a fan base. Please visit www.myimagiville.com for paypal link.
D.J.
DJ Svoboda

 

Hello Everyone! This here is A Brand New Imagifriend that was just created to help spread Awareness to put a STOP to BULLYING. It was made KING SIZE because Spreading Awareness and Acceptance for Autism and Spreading Awareness to put a Stop to Bullying are very,very Important.  The Imagifriends are also very determined to help spread Great Awareness to put a BIG STOP to BULLYING,because Bullying is Wrong and is NEVER OKAY!

This is the first Imagifriend created to spread awareness against Bullying. — with Jt Thompson.

Photo: This is the first Imagifriend created to spread awareness against Bullying.

Like

 Some of DJ Svoboda’s Friends & Supporters:

Check out the latest Imagiville charactor leading the fight in raising awareness about bullying. Daniel Svoboda (DJ) is a wonderful friend of ours and has for a long time now been a huge inspiration to me. Daniel attends and speaks at autism conference across America sharing his imagifriends and also talking about his experiences growing up with autism.  Please like his page and support his awesome work.  Allison x

This is the first Imagifriend created to spread awareness against Bullying. — with Jt Thompson.

Check out DJ’s 4-part interview on ReEnchant Planet Earth!

Here’s a link to the first one.

Meet DJ – part 1 from Marilyn Shannon on Vimeo.

http://www.youtube.com/watch?v=rbYTcZPLy1U

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LOL! Birthdays not preferred on holidays?

20 Percent: The diminished likelihood that you were born on Christmas, compared with an average day.

Perhaps largely because many cesarean births can be scheduled in advance, doctors and patients seem to avoid certain days — and choose certain others.

This chart is adapted from work by my fellow statistician Aki Vehtari of Aalto University in Finland, …

See more of his charts here. Happy Birthday Statistical Modeling, Causal Inference, and Social Science (19 December 2013)

A version of this brief appears in print on December 24, 2013, on page D6 of the New York edition.

Excerpt: To Be Born on a Christmas Morn – NYTimes.com.

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Rubella, the MMR Vaccination, and Autism

Rubella, the MMR Vaccination, and Autism

In this particular blog I will continue expanding on my line of thinking regarding what I consider to be the basic abnormality in the brains of individuals with autism spectrum […]

via Cortical Chauvinism by Dr. Manuel Casanova

Dr. Manuel Casanova is a neurologist, with extensive experience in Neuropathology and research. He is currently the Kolb Endowed Chair in Psychiatry and Vice Chair for Research at the University of Louisville.

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Make the Connection | —

Thanks to the Veterans.

Thanks to the Veterans. (Photo credit: Wikipedia)

Welcome Home.  Thanks for your sacrificial service.  We appreciate our soldiers and military

personnel who are still in harms way.  This Veterans holiday, we hope you ‘Make the Connection’ in your communities, stateside and abroad.

Connect by Life Events

Explore life events or experiences that you can relate to and get information, stories, and resources for support.

Make the Connection | Veteran Stories & Support.

Veterans Day Ceremony

Veterans Day Ceremony (Photo credit: Josh LeClair)

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Hitting the Jackpot over at BLOOM

I’m very excited to be guest posting over at BLOOM blog, the blog for Holland Bloorview Kids Rehabilitation Hospital. I am truly honoured by this opportunity.

Thank you Louise Kinross, parent, editor and special needs super-star!

Please go check them out, there are amazing things happening at BLOOM!

My post, Hitting the Jackpot, is about coming to terms with a special needs diagnosis for my children, something most parents can relate to. Go on, check it out!

Excerpt:

In the land of special needs, things happen differently, and if you don’t look for them you will miss them completely. My daughter is nearly three now and still cannot walk. She spends her day bum-shuffling around, a devoted mother to a dozen baby dolls, giving them bottles and naps and changing diapers. If her baby brother holds still long enough she will change him too.

If I spent my time focussing on what she can’t do, I would miss everything that is truly exceptional about her. She does not speak clearly, but can tell knock-knock jokes. And she loves to laugh. She can’t walk, but can dance. She moves with a rhythm and style all her own. She has a strong sense of fashion, and loves stylish clothing and accessories. She makes people happy, reaching out to strangers and truly bringing out the best in people.

There is no percentile chart that can measure this. It took us a while to realize that the things that truly count cannot be measured.

In that sense, I think we already hit the jackpot.

What’s my advice to parents dealing with a new diagnosis?

Hug your child, spend time with them and remember how special they are. Make time to connect with other parents who are going through the same thing or who are just slightly ahead of you on the journey in the land of special needs. With the Internet, the world is truly a small place. You are never alone. You can always connect with me on Twitter@specialneedmom2.

Angela is a special education teacher and special needs parent who blogs at Half past normal.

Read Angela’s complete blog post at Hitting the Jackpot over at BLOOM.

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About Angela

Super-powered, Special Ed teacher and special needs mama to three children under five (!) Toddler has Prader-Willi Syndrome and Kindergartener has Duchenne MD. Hubby has ADHD. Baby #3 does not have super-powers, not that we love him any less for it. I blog about our halfpastnormal life.

Thanks Angela for sharing.

Additional PWS info.:

MedlinePlus – National Institute of Health – Prader-Willi Syndrome

Prader-Willi Syndrome (PWS) is an uncommon genetic disorder. It causes poor muscle tone, low levels of sex hormones and a constant feeling of hunger. The part of the brain that controls feelings of fullness or hunger does not work properly in people with PWS. They overeat, leading to obesity.

Babies with PWS are usually floppy, with poor muscle tone, and have trouble sucking. Boys may have undescended testicles. Later, other signs appear. These include

  • Short stature
  • Poor motor skills
  • Weight gain
  • Underdeveloped sex organs
  • Mild mental retardation and learning disabilities

There is no cure for PWS. Growth hormone and exercise can help build muscle mass and control weight.

NIH: National Institute of Child Health and Human Development

U.S. National Library of Medicine – National Institute of Health – PubMed Health – Diseases and Conditions – Prader-Willi Syndrome

Prader-Willi syndrome is a congenital (present from birth) disease. It affects many parts of the body. People with this condition are obese, have reduced muscle tone and mental ability, and have sex glands that produce little or no hormones.

Causes, incidence, and risk factors

Prader-Willi syndrome is caused by a gene missing on part of chromosome 15. Normally, your parents each pass down a copy of this chromosome. Most patients with Prader-Willi syndrome are missing the genetic material on part of the father’s chromosome. The rest of patients with this condition often have two copies of the mother’s chromosome 15.

The genetic changes occur randomly. Patients usually do not have a family history of the condition.

Symptoms

Signs of Prader-Willi syndrome may be seen at birth.

  • Newborns are often small and floppy.
  • Male infants may have undescended testicles.

Other symptoms may include:

  • Trouble eating as an infant, with poor weight gain
  • Almond-shaped eyes
  • Delayed motor development
  • Narrow bifrontal skull
  • Rapid weight gain
  • Short stature
  • Slow mental development
  • Very small hands and feet in comparison to the child’s body

Children have an intense craving for food and will do almost anything to get it. This can result in uncontrollable weight gain and morbid obesity. Morbid obesity may lead to type 2 diabetes, high blood pressure, and joint and lung problems.

Signs and tests

Genetic testing is available to test children for Prader-Willi syndrome.

As the child grows older, laboratory tests may show signs of morbid obesity, such as:

  • Abnormal glucose tolerance
  • Above normal level of the hormone insulin in the blood
  • Decreased level of oxygen in the blood
  • Failure to respond to luteinizing hormone releasing factor

There may also be signs of right-sided heart failure and knee and hip problems.

Support Groups

For additional resources and support, see:

Expectations (prognosis)

The child will need the right education for his or her IQ level. The child will also need speech, physical, and occupational therapy as early as possible. Controlling weight will allow for a much more comfortable and healthy life.

Complications

  • Type 2 diabetes
  • Right-sided heart failure
  • Bone (orthopedic) problems
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Airport Thievery

Traveling this Labor Day?

Here’s a perspective of an autistic Adult maneuving through the airport.

“I was appalled by what the kiosk was directing me to do. How awful to have to steal a fellow passenger’s passport! I clutched onto my passport even tighter in case the guy at the next kiosk would be trying to swipe it on me. I intentionally took some slow deep breaths trying to calm myself while keeping an eye on the potential thieves all around me. It was hard to calm down. I looked at the directive “please swipe passport” still on the screen I loudly announced, “I’m sorry, but I can’t do this!”

An agent came over, looked at the screen, took my passport and swiped it – just like I swipe my credit card at the grocery store. Once I saw that I realized exactly what the kiosk directions meant because I have swiped my credit card many times. My brain just hadn’t pulled up the right “swipe” picture.

Since that time a few years ago I have become much more comfortable in airports. In addition, I have learned that I can successfully deal with the unplanned surprises that come up along the way. Ultimately I can get where I am going without being any more frazzled that the average passenger. Chalk this up as one more thing a person can learn after 50!”

Note: To read about Judy’s most recent airport accomplishment, please read Brenda Smith Myles’ Foreword in Judy’s newest book, Learning the Hidden Curriculum: The Odyssey of One Autistic Adult (2012, AAPC Publishing).

AAPC-Puzzle-Logo-2012_256For the complete article: Airport Thievery.

via

The Autism Asperger Publishing Company

#HiddenCurriculumAlthough you may wash your hair in the kitchen sink at your own home, don’t do it while staying at the home of a friend. 4 days ago
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