Issue 25 / Nov-Dec 2015 essential reading for those who care
Autism W rld
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REALLY USEFUL CONTRIBUTIONS MY SON WANTS A PET DINOSAUR!! UNSUNG HERO IN SONG Autism World Magazine - 1
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Autism W rld Welcome to the online version of Autism World Magazine If you are downloading this on an iPhone or iPod use the “Open in iBooks” option. For all other PDF Reader, please refer to your specific instruction manual. Or better still try our FREE APP on your device. Pictures labelled “Click on picture to play video” will take you to the video or download the file for playing. Any problems, send us an email at contact
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CONTENTS NOVEMBER/DECEMBER 2015
08 08 REALLY USEFUL CONTRIBUTIONS Deb Flintoff
32 AUTISM & THE BODY Holly Bridges
18 MY SON WANTS A PET DINOSAUR!! 24 EVERY PARENT HAS A STORY
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Autism World Magazine is available digitally for iPad, iPhone, Android devices, PCs and Online. Subscribe free via: autismworldmagazine.com
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Editor: Iain Croft Sub Editor: Heather Paterson Website: autismworldmagazine.com
38 AUTISM CHRISTMAS Jacqui and Greig Little 45 GAPS DIET: COCONUTS 57 MEMORY MAKERS Catherine Crestani and Diana Wolf 60 SMARTee THE PROJECT 67 IS RDI RIGHT FOR YOU Maisie Soetantyo
72 UNSUNG HERO -‐ ERNST
Facebook: facebook.com/worldautism
Front Cover: Josh & Courtney Really Useful Recyclers
76 IMPROVE YOUR RELATIONSHIP Cress Spicer 80 MUM ON A MISSION Crissy O 84 IN MY OPINION Jocelyn Davies 87 SENSORY EXPO
74 STATEMENT OF POLICY AND DISCLAIMER
‘The views expressed in any articles included in this publication are not necessarily those of Autism World Magazine or the publishers MagsWest Pty. Ltd. Autism World Magazine and the publishers do not promote or recommend any specific therapy, treatment, institution or professional viewpoint. Please check with a doctor when changing any diet or major nutritional change.
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Editor’s Note Welcome to the latest edition of Autism World Magazine. Apologies for the delays between editions. I have been quite ill and time has slipped a little. All seems better now so I shall produce a few issues quickly to make up for the delay. Thank you all so much for continuing to support this amazing publication. Remember AWM is now a free publication. If you are still on a paid subscription send me a message and I can cancel it for you. For those that wish to assist financially we thank you for doing so. Any help we receive goes straight into supporting this publication supporting the global autism commnity. If you would like to contribute a personal story or article for publication - do please get in touch via email or facebook as listed below. Best wishes, Iain
iain with his handmade steel mailbox
iain croft editor and publisher iain@magswest.com www.facebook.com/worldautism www.autismworldmagazine.com
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Puberty Blues with Deb Flintoff
Deb Flintoff is a passionate advocate for children on the autistic spectrum and their families. Deb’s extensive personal experience, with son Josh and knowledge of systemic procedures and policies, has allowed her to positively engage and empower other families to navigate through their daily lives and plan for the future.
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REALLY USEFUL CONTRIBUTIONS Deb Flintoff
A year ago in Autism World Magazine, I wrote an article titled ‘Unique Contributions’. The article focused on creating a meaningful future for our son, Josh, beyond his high school years. Now 18 and well into his Pinal year at school, I am happy to say, all our hard work, passion, energy, commitment and planning is evolving nicely, or in actual fact, better than I could have ever imagined. 'From a seed, a vision grows", the quote from article one, should now read, "From a seed, a vision grows and grows and keeps on growing!" Over the last few months, our vision for Josh has now evolved into a shared vision with our wonderful close friends, Del and her son Courtney.
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In the very early days of planning, I mentioned to my hubby, how perfect I thought this activity would be for Courtney and how amazing it would be to do with both the boys, together. Later in the year, during the process of developing Josh's 'Transition Plan', the idea of sharing our vision was suggested to me by two very wise women.
I knew this was the perfect decision, but the timing was crucial. Del, like many other parents, was living with the stress, at times overwhelming emotion and reality of Courtney soon Pinishing this school chapter of his life, with few (if any) employment opportunities on the horizon.
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“The foundations were set”
Being a year ahead of Josh and in his Pinal year of school, I needed to present this ‘vision’ to Del as soon as possible. SufPice to say, she was "blown away" and in her own words, ‘extremely humbled’ that we wanted to share this wonderful opportunity for Josh, with Courtney. The foundations were set. What a team. Del and I continue to work beautifully in the planning and execution, but most importantly, Josh and Courtney continue to astound us with their abilities, enthusiasm and productivity. The smiles on their faces when they do "Good Work" says it all!
This really is a joint effort. We are a team. A partnership. Together we plan, create, coordinate and collaborate, whilst including Josh and Courtney in every step of the process, even if they are dreaming of Thomas the Tank Engine or Wall-‐e the recycling robot at the time! We could not have accomplished what we have and will continue to do, without the unbelievable assistance, enthusiasm and commitment of our passionate support network, family, community friends such as the wonderful men of the Mens Shed, the lovely ladies from 'Milk and Paper' and each other. From our very Pirst humble little paper briquette, we have now amassed a variety of products showcasing the wonderful talents and hard work of Josh Autism World Magazine - 11
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Josh and Courtney
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and Courtney, which were recently displayed at the Mosman Park Community Mens Shed Craft Market in Perth.
christmas decorations, wall art, framed pictures, placemats, coasters and bowls for all to see, enjoy and appreciate.
The ‘Garbage Donuts’ and ‘Garbage Biscuits’ (as they are called by the guys), hand made out of recycled paper collected from our respective local communities, are now transformed into a creative and colourful assortment of Pirelogs,
Together, with their dedicated support teams, Josh and Courtney will continue to live and enjoy this wonderful vision we have worked hard to create, whilst we, their mums, remain committed in our support roles and enjoy the ride ! Autism World Magazine - 13
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Josh and Deb
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Deb Do you have a story, about the teenage years, to share to help the next generation of ASD families. Please contact us at Autism World Magazine: Email: story@magswest.com Facebook: www.facebook.com/worldautism Website: www.autismworldmagazine.com
Deb Autism World Magazine - 15
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Need someone to talk to?
24-Hour Autism Hotline
1300 222 777 (Australia Only)
The Autism Advisory and Support Service (AASS) runs a 24-Hour Autism Hotline which is staffed by parent volunteers who have children with Autism. You can call any time of the day or night, from anywhere in Australia, to chat to someone who can offer service and guidance from a parent's perspective. Whenever you call AASS you are speaking a parent of a child with Autism so you know that you are talking to someone who understands what you are experiencing. Parents and carers waiting for a formal assessment and diagnosis, looking for the right intervention and joining the long waiting lists can be extremely overwhelmed, confused and frustrated. AASS will help with unbiased advice, encouragement, guidance and support. If you get the answer-phone please leave your number and a message. We will call you back. Autism World Magazine - 16
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A pet dinosaur? by: Trinette Newell
Earlier in the year Trinette Newell attended a Tony Attwood and Sue Larkey workshop conference day. During the talks Tony Attwood said that he often tells parents to buy their child the animal they so desperately wants. Whether that is a horse or a snake. So what happens when your child wants a dinosaur?
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My Pirst thought was there is no way I can give Mr 11 a dinosaur to look after. He really loves prehistoric animals and large predatory birds like Eagles. Of course living in suburbia keeping an eagle just is not possible either, especially as they are a protected species.
We already have a dog. Which he loves dearly but isn't absolutely smitten with. So he wants snakes or blue tongue lizards because that would be so cool. OMG. Snakes really... Autism World Magazine - 19
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Not sure we can keep reptiles. I investigated and found out that in our state, in Australia, all the snakes are venomous plus I have no idea how to handle them. So we talked about this and decided maybe when he is older and he can do everything perhaps then. (not sure about this but hey...) We applied for a herpetology permit which required Pilling in a form and sending it away.
We purchased a large enclosure for herpetology (reptiles and amphibians) and all the things to make a new home for them. We decided that we preferred adopting reptiles born in an enclosure then collecting from the bush. We had to wait several months for a baby to be ready for adoption. We now care for three gorgeous blue tongue lizards -‐ Banjo, Buddy and Kalamita.
It has been a costly experience as we decided if we were doing this we would do it right. Banjo, Buddy and Kalamita
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Trinette and Mr 11
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The lizards have helped heaps for him socially too. As neighbourhood kids want to see and know about them. He spends a lot of time 'educating' others about them.
Blue-tongued skinks comprise the Australasian genus Tiliqua, which contains some of the largest members of the skink family (Scincidae). They are commonly called blue-tongued lizards or simply blue-tongues in Australia.
As suggested by these common names, a prominent characteristic of the genus is a large blue tongue that can be bared as a bluff-warning to potential enemies. Blue-tongued skinks are also bred in captivity and sold as house pets.
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Online: http://bit.ly/1JmZFyY Download: http://bit.ly/1hP0g2d
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EVERY PARENT HAS A STORY Have you ever thought, “I could, should, want to write a book”? by Gayle Nobel
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I could, should, want to write a book But how?
Perhaps some of these ideas have come into your awareness:
One: Begin Begin with what’s in your heart.
“I have learned so much on this autism journey with my child. I believe I have a lot of good information that could support others. Parents/professionals could benefit from my wisdom. It would be good therapy for me to write a book.” Maybe you have stopped yourself (before even starting) because you believe you are “just” a mom or dad and you are not a writer. Or you have fears of not being good enough in some way. Or doubts, such as “how will I find the time?” or “where do I begin?”
Begin with your story. You don’t necessarily need to begin at the beginning. However, if you are going to write a book, you must begin. Two: Show Up Just Show Up at the page/ computer screen. It’s ok, if initially, that’s all you do. And it’s ok if you have no idea where to start. The first step is showing up and if you don’t take this step your dream will never become reality.
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Three: Write Write something. Write anything. Start with a rant, if that feels good. Put some words on the page. They may all end up being deleted later on. Right now, it’s just about getting started. It’s about letting your heart and soul appear on the page.
It doesn’t matter what goes on the page. It just matters that you put something there. Psst…. don’t edit. Tell your inner critic to shut up. Her sole purpose is to tell you you’re not good enough.
Put your writing voice in print and allow your story to emerge.
This will stop you in your tracks.
At first, it might be scratching out ideas or creating an outline.
So thank him/her for sharing and keep writing.
Shape it into what you want to say
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The cover picture of Gayle’s book Breathe
Four: Commit If this is something you decide you are committed to, write. Busy parents usually don’t have a lot of discretionary time, but figure out where you can squeeze it in during your day, even if it’s just a few words.
We repeated this sequence several times over the years. Commit. Write. Adjust. Recommit. Write again. Repeat as often as necessary.
When my coauthor and I wrote our first book “It’s All About Attitude: Loving and Living Well with Autism” we spent about five years gathering the content for the book.
Reread and mold your lump of clay, your raw piece of writing. Shape it into what you want to say.
Our goal was to write a story each week and send it to the other. But life interfered, and often it didn’t turn out that way. We wrote. We got off track. We noticed we were off track. We began writing again.
Five: Rewrite
This is one of my favourite parts of the writing process. First, I free write, getting my initial story out on the page. Then I go back to it and massage. I move and delete and add, reworking the thoughts.
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These are some of my most creative moments. Getting a piece of writing down and coming back to it another day will give you fresh insights for rewriting and polishing. Six: Patience Be patient with the process. And remember it IS a process. Your story will not get written in a day or a week. For most of us, it will be a lengthy process that will evolve over time. Just like the journey with our autistic child, writing requires patience with the process and patience with ourselves.
As I began to go deeper, I realised I wanted to share an important message with other parents on similar journeys. My mission was more to inspire than educate. I wanted to share wisdom and lessons from the heart. I wanted to help parents feel happier despite their daily challenges. Eight: Edit Every writer needs an editor. If you are serious about turning your dream into the reality of a book, you will need an editor. This is good news. It takes the pressure off of you to think you need to come up with a perfect product.
Seven: Intention Think about your audience and what you intend to accomplish. When I coauthored my first book, initially, I was writing for myself. The writing process enabled me to become highly aware of how I was living and learning the daily lessons on this journey.
Your job is to tell your story to the best of your ability and then find an editor. Even if you plan on trying to get the book published in a more traditional way, as opposed to self publishing, you will want an editor to help you create the best possible product for submission.
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Nine: Decide Your book is written. What now? Find an agent who will submit it to publishers? Self publish? Print book? E Book? Both? My coauthor and I wanted to retain more control so we chose to self publish. Since there were two of us splitting costs, the financial investment was a little more doable. E books were not as popular as they are today, so for us, that piece came much later. There is a lot of support online for self publishing.
For example, 1106 Design (http:// 1106design.com/) is a company that works with authors, publishers, business pros, coaches, consultants, speakers . . . anyone who wants a beautiful book, meticulously prepared to industry standards. They offer package deals for editing, graphic design, typesetting, printing, and ebooks. The larger publishing houses require an agent as an i n t e r m e d i a r y. Independent publishers such as Future Horizons and Jessica Kingsley specialise in autism related books and may have a simpler submission process.
To Submit a Manuscript to Jessica Kingsley Publishers CLICK HERE
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A publisher may or may not love your book and want to publish it. However, it is always worth a try. E books have become so mainstream that many people don’t bother producing a print book and head straight to digital. This keeps costs down. With more and more people reading on Kindles, iPads, Nooks, etc., you may decide digital is the only way to go. It’s a matter of personal preference and finances. I must admit, there is nothing quite like holding your book baby in your hand for the first time. Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude Its All About Attitude
That labour of love, your book, in physical reality, is very special. It is easier and not as costly as it used to be to print on demand or make small print runs. You still have your print book but also don’t end up investing a lot of money in a large quantity of books that may end up sitting in your closet. You can print more if you need them. Ten: Begin Again The end of one journey is the beginning of the next. You have written and published your book. A whole new adventure awaits in marketing and getting it into the hands of people who will enjoy it. Whether a book has been published by a publisher or self published, the author plays a large role in promoting it in person and online. ~~~~
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Every parent has a story. As I did, some feel compelled to share it. Whether a book is published digitally, printed small or large scale, or makes it to the best seller list, it has the potential to make a difference. In this way, your child and your journey can impact the world, one soul at a time. Gayle
Gayle Nobel has a lifelong connection to autism through her brother and her son. She holds a BA in special education, is an inspirational speaker and parent mentor, and author. breathe book breathe sale book breathe book breathe book breathe salesale book breathe book breathe book sale salbreathe book breathe book breathe book sale breathe book breathe book breathe book salbreathe book breathe book breathe book sale breathe book breathe book breathe book breathe book breathe sale book breathe book breathe book breathe salesale book breathe book breathe book sale salbreathe book breathe book breathe book sale breathe book breathe book breathe book salbreathe book breathe book breathe book sale breathe book breathe book breathe book breathe book breathe sale book breathe book breathe book breathe salesale book breathe book breathe book sale salbreathe book breathe book
Gayle directed an intensive home therapy program for eleven years for her son, Kyle. She lives in Phoenix, Arizona with her family. It’s All About Attitude and Breathe: 52 Oxygen-Rich Tools for Loving and Living Well With Autism by Gayle Nobel. Click on Books to purchase via Amazon
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Autism and the Body. HOLLY BRIDGES
“Severely autistic? It means being stuck in a body that doesn’t work well, with no way to communicate.” – Jeremy Sicile-Kira.
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http://www.carlysvoice.com http://www.carlysvoice.com http://www.carlysvoice.com http://www.carlysvoice.com Jeremy Sicile-Kira has worked hard to get himself to the point where he can communicate this.
When she became able to communicate this to her family they were amazed and delighted.
If you listen to people with autism, this is the kind of thing they say.
Carly also has autism.
Carly Fleishmann is another case in point. It wasn’t until Carly began to communicate via a computer that the people around her became aware that her brain was working just fine. That even though she could not speak or communicate effectively, that she was aware.
We have, as a society, a propensity to assume that there is a something wrong with someone’s brain if they cannot speak properly or make meaningful expression. Most of us lean quickly towards the assumption that the problem is in the brain and our research on autism reflects this. We focus on the brain, we focus on genetics and why the brain doesn’t work so well.
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We focus on vaccines and brain damage, or nutrient deficiencies or levels of stress in pregnancy that alter the brain‌ All the while the people living the with problem are trying hard to express that they actually do understand what is going on around them, that they are aware, that their body is limiting them. With autism there is an over-riding correlation between autism and difficulties with the body; digestion and ingestion, bowel issues, food allergies, auditory sensitivities, sensory processing issues. Yet for all our evaluation and treatment, still we cannot explain why. The Polyvagal Theory explains why. It explains why there is a spectrum and it makes sense of all the physical ailments that run alongside autism.
The Polyvagal Theory was developed by neuroscientist Dr Stephen Porges. Dr.Porges suggests that instead of being a neural disorder, that autism is possibly an early learnt response of the body to extreme stress. His theory shows that under duress the body goes not just into flight or fight, but also into immobilisation and that when this happens, the body shuts down certain functions in order to keep safe. When the body goes into shutdown the digestive and ingestive processes are depressed, there is less control of the bowel. Voice muscles, facial muscles, smiling and using the eyelids are all compromised. In immobilisation the auditory and tactile senses all become super heightened.
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Think being stalked by a lion. At some point your body overrides you and you stop operating. You don’t try; you just go into shutdown to survive. You can see and hear everything - you just can’t do anything about it.
People who have been mauled by lions, as adults, often can describe the attack. They remember the closeness of the lion, the breath, the paws and that at the time they had no capacity to move, no capacity to take action. Their body took over.
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“it allows us to look for avenues”
This is what the body does, under significant duress the body will shut down to keep you safe. Once the danger is over, you recover and get to tell the tale. But what if this happens when you are very young? The Polyvagal Theory, as an organising principle, suggests that the autist at a very early age has gone into immobilise mode and has more, or less, got stuck there. This then has a whole set of secondary ramifications for learning and integrating the child’s social and physical environments. Dr.Porges thinks that given the way the body is ‘depressed’ through immobilisation that the child nervous system does not get to learn to fully integrate.
He thinks that because of the immobilisation and attendant physical discomfort the child is experiencing, that the infant’s ability to learn to engage with the world is severely compromised. Autism then becomes a problem of learning and of the body, not a brain disorder per se. The beauty of this theory is that it allows us to look for avenues for change. If it is a mechanism we can change it. If it is a nervous system that needs re-educating; we can re-train it. Autism need not is not be fixed and as it is, we see examples of change all the time. All over the world people reverse their diagnosis, people get better as they get older, they grow, change and enhance, even if only bit by bit. We haven’t had a way of explaining why. Autism World Magazine - 36
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‘Reframe Your Thinking Around Autism, how the polyvagal theory and brain plasticity help us make sense of autism‘ has been written by Holly Bridges, a Perth based author. In the book Holly explains the theory in light and simple terms and then includes the latest research in brain plasticity and the work of Anat Baniel, to show how you can begin to learn to use brain plasticity to begin to make positive change.
http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722 http://www.amazon.com/Reframe-YourThinking-Around-Autism/dp/1849056722
Holly’s book is unique in that it synthesizes a great deal of complex information into a very simple, readable and user friendly form. Holly also runs practical workshops to enable parents, carers and autists to easily learn how to integrate this new and enlivening theory into everyday use. Her book is available through bookstores, amazon and footprint books in Australia.
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The Little Family - Autism and Christmas. some Thoughts on Christmas with autism by Jacqui and Greig Little
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The modern theme of Christmas seems to us to be lost on autistics. They don’t spend their early years fantasising about Father Christmas, reindeer which can fly and tow a sleigh, elves, the north pole and a fat man descending an improbably small chimney with presents they don’t want. It then follows that they can’t recall fond memories of Christmas time, innocence and a warm comfortable atmosphere when adulthood arrives.
Autistics can see that Christmas is important to the people around them and learn to go along with us, but we have never witnessed any enthusiasm from William or other children which we have had contact with over the years. We are well prepared beforehand and we put up our tree every year. There is a lot of discussion about the big day coming. We took William for night drives to view the Christmas lights.
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“This is the Xmas tree season”
This helped William to understand “This is the Xmas tree season”. We tried doing the neuro-typical thing with loads of presents; it was overwhelming for William to cope with. He doesn’t like surprises. It took weeks for him to open his presents even with our help. He was very anxious about presents. It was disappointing for us too.
Putting a picture on the outside of the present did help to relieve the anxiety a lot, but he didn’t want a present anyway. Our expectations of William are more realistic now and have been quite enjoyable over the past three years. We have one present each all under the tree; Dad first, Mum next then Will. We sit around the tree as a family and open our presents one at a time.
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He now enjoys us being close together. Now he knows the routine, all is fine, presents are done quickly with no big deal. School Christmas presentations struck us as a waste of potential teaching time. Our son was in dire need of help in most areas of his life but Christmas shows were more about teachers expressing themselves and receiving gratitude from parents and carers.
The whole school term beforehand was dominated by preparation; routines, loud soundtracks, uncomfortable costumes. Care and control was all else there was time for. The day itself was disrupted: home early, then back again the same day to perform the show. Great anxiety just there. The only positive from Christmas shows was the enthusiasm of the children with Down’s Syndrome. They genuinely loved it.
It is difficult for us to be polite about what autistic children are forced to tolerate in the name of Christmas.
Putting ASD kids through it made us uncomfortable and we thought it resembled abuse. Autism World Magazine - 41
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“keep it short and manageable” We now realise that our expectations were inappropriate for William. Every year until three years ago, we felt disappointed with Christmas. Our expectations were not met and it wasn’t “Fine and Fun” for Will. Reducing our expectations, keeping it short and manageable, we no longer have the underlying sadness on Christmas Day. It is a positive happy day. Our approach to birthdays is much the same theme.
We do a present, cake, candles and the Happy Birthday song. Since learning to blow he is an accomplished candle extinguisher. If parents can look at their own kids and see that some school activities aren’t really about the kids, their lives and the lives of their AS children will be enhanced. The concept of Christmas can be handled by placing a tree in the corner and briefly explaining that neuro-typicals think it is important. We hope this is a helpful insight into our family. We think our views are widely held among the enlightened autism community.
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Sensory Santa works with Shopping Centres all over Australia and New Zealnd in offering families with sensory disorders the opportunity to have a photo with Santa. sensorymovieday@hotmail.com www.facebook.com/SensoryMovieDay
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eat play Learn
Essential thinking on food, education and play from the most respected minds across the Autism world.
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GAPS Dairy Free with Jacinta O’Connor
Jacinta O’Connor is a Nutritionist * Naturopath * Certified GAPS Practitioner * MINDD Practitioner * Additive Alert Presenter
GAPS – Gut and Psychology Syndrome & Gut and Physiological Syndrome) ‘GAPS TM is the registered trademark of Dr Natasha Campbell-McBride
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Gluten-Free Casein-Free
Before moving onto a GAPS Protocol, people have often experimented with removing certain foods from their diet. These foods often include dairy based foods and gluten containing grains. This is commonly known as a Gluten-‐Free Casein-‐Free Diet (GFCF) Diet.
People sometimes Pind their dairy sensitivity is as a result of the milk sugar, lactose, causing issues rather than casein in dairy. Casein is a milk protein. Store-‐bought yogurts are commonly fermented for six to nine hours which does not allow sufPicient time for the lactose to be taken up completely.
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Not to mention the stabilisers, emulsiPiers, preservatives, colourings etc that many store-‐bought yogurts contain. Even some plain yogurts have a colouring called Annatto (160b), added to it. This food colouring can have adverse reactions in children.
Under the GAPS Protocol, when people have done some gut healing work and re-‐introduced dairy they are pleasantly surprised to Pind longer fermented homemade yogurt is tolerated, and enjoyed. There are a couple of tests people can do themselves to check to see if they have a strong sensitivity to food(s).
Annatto Annatto, also called roucou, is a natural plant extract used to dye an assortment of foods, textiles, and body care products. Primarily, it is used as red / orange in a wide assortment of foods. The food additive number for it is E160b, allowing consumers to identify it on a label even when it is not listed by name
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Sensitivity Test
To check for a real dairy allergy, place a drop of homemade yogurt, sour cream or kePir on the inside of your wrist. Do this at bedtime. In the morning check the spot. If there is no reaction then go ahead and introduce dairy as part of the GAPS Protocol. If there is a red reaction on your skin, keep dairy out of your GAPS Protocol for now. Continue on doing further gut healing work and try again further down the track.
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Pulse Test for Suspected Intolerance
To check for intolerance, you could carry out a ‘Pulse Test’. Sit quietly and take your pulse for one minute. Next, eat a portion of the food you suspect you have intolerance to and, while still sitting quietly, take your pulse 10 minutes, 20 minutes and 30 minutes after eating the food. If your pulse goes up by 10 beats or more you can suspect sensitivity.
If accompanied by any of the following symptoms, or if your symptoms that disappeared, return within 48 hours, then you have sensitivity to that food. Signs to look for include headache, itching, bloating, nausea, dizziness, fatigue, diarrhoea, pain, indigestion, anal itching, sleepiness 30 minutes after a meal, Plushing and rapid heartbeat. If you do have a sensitivity or intolerance to dairy, then GAPS needs to be done dairy free initially.
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GAPS - Dairy Free Alternatives to using butter and ghee for cooking…..
For cooking mufPins, cakes, crackers, pizza bases etc., you can use coconut oil as a direct substitute. If a recipe calls for 2 Tbsp. of butter, you can use 2 Tbsp. of coconut oil. You could also use the fat from the top of your stock/broth as a direct substitute if coconut oil is not tolerated. For gently frying up meats, you can use coconut oil. Coconut oil is highly anti-‐microbial so start slowly with its introduction. People often confuse a die-‐off response from the microbial nature of coconut oil, with intolerance to it.
When you have made stock, particularly beef and lamb stock, place it in the fridge overnight and in the morning you have a thick layer of solid fat. That is liquid gold for your body! You can lift off the layer of fat, break it into smaller portions, and freeze it for later use. When you need some fat for cooking, just take what you need out of the freezer.
Alternatively you can use the fat from the top of the stock and broth you make. This fat makes meals so tasty.
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Coconut as a Dairy Alternative
For those that tolerate coconut, it makes a wonderful alternative for dairy based yogurt and kePir. You can use the coconut milk or coconut yogurt in smoothies in place of dairy and also in recipes that call for yogurt.
Coconut milk kePir is probiotically stronger than coconut yogurt and needs to be introduced very slowly. For some people with very compromised gut health, this is 1 tsp a day to begin with.
Coconut milk recipe – So easy! 1 cup of unsweetened shredded coconut 1 cup of Piltered water Bring the unsweetened shredded coconut and Piltered water to the boil. Cool down and blend well in a thermomix, food processor or blender. Strain through a cheesecloth, very Pine strainer or nut milk bag. Refrigerate.
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Benefits of Coconut
Coconut oil contains Medium Chain Triglycerides (MCT’s). These fatty acids are metabolised differently to the more common long-‐chain fatty acids. The MTC’s go from the digestive track into the liver where they are used as a quick energy source or turned into ketone bodies, which can have a therapeutic effect on certain neurological conditions.
When coconut oil is digested, it forms a monoglyceride, monolaurin. Both lauric acid and monolaurin can kill pathogenic bacteria, viruses and fungi. Enjoy the taste and the health benePits of coconut!
Approximately 50% of the fatty acids in coconut oil is lauric acid.
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Opening a Young Green Coconut
Scrape away the thick white husk of the coconut until you see the coconut’s rounded (dome) top. With a heavy knife forcefully strike away around the base of the dome of the coconut. As you keep striking around the dome, the coconut will eventually open up.
Peel back the top and pour out the coconut water. This coconut water can be strained and used for an electrolyte drink, in smoothies or icy poles or better still fermented with water kePir grains. Use a spoon to remove the coconut meat from inside the shell.
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Jacinta O’Connor runs GAPS workshops and support groups in Kardinya, Western Australia
www.gapsperth.com.au
GAPS™ is the registered trademark of Dr Natasha Campbell-McBride.
Each month in Autism World Magazine Jacinta O’Connor takes you through some of the practical steps to help GAPS work for you and your family. And if you are using GAPS send us an email and let us know how you are going. support@magswest.com
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Autism W rld Magazine
Then please spare a few moments to write a review about us on iOS, Google Play or Facebook. CLICK HERE TO REVIEW
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Memory makers with Catherine Crestani and Diana Wolf
A lot of children with ASD have difficulty remembering informa9on said to them. This is different from remembering what they see or experienced – which is visual and kinaesthe9c learning. A lot of what we do every day is presented to us verbally including instruc9ons, direc9ons and conversa9on. It is important for us to have a good auditory memory for these tasks.
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Games/tasks to help improve your child’s memory include: Remembering shopping lists (start with two or three items and try and build up to seven); Remembering things you see and telling someone in the family (e.g. “At the pet shop I saw a bird, a cat…”); Copy-‐cat games can help a child have to remember what you say; I spy with 1, 2, 3, and 4, items and have the child repeat them back; Have a treasure hunt and have your child find items around the house by giving clues that they need to listen to (e.g. I think it’s next to the fridge); Play ac9on games such as ‘Touch your knees, then your toes then run across to the door.’ Happy memory games. Catherine & Diana
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Catherine Crestani and Diana Wolf are Principal Speech Pathologists at Nepean Speech and Language Services, in Penrith NSW, Australia. Diana has more than 21 years of experience and continues to thrive on learning new ways to provide intervention to children. Catherine’s passion is for early intervention, including supporting children with ASD. www.nsls.com.au
AUTISM WORLD MAGAZINE DELIVERED DIRECT TO YOUR DEVICE Don’t miss out CLICK HERE TO SUBSCRIBE FOR FREE
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Our W rld SMARTee
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SMARTee the Project Brianna Owens
Brianna Owens is a special education education teacher in Albuquerque, New Mexico and a long time subscriber to Autism World Magazine.
Brianna asked us to share a project that her students are working on called "SMARTee the Project."
https://youtu.be/3qXEJ1qDjGU https://youtu.be/3qXEJ1qDjGU https://youtu.be/3qXEJ1qDjGU https://youtu.be/3qXEJ1qDjGU https://youtu.be/3qXEJ1qDjGU https://youtu.be/3qXEJ1qDjGU TAP OR CLICK ON THIS PICTURE TO VIEW THE VIDEO
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Students with special needs and autism are working with other students around the world to learn, communicate, and teach others as part of a global collaboration project titled “SMARTee.”
Regardless of ability, communicate difficulties, or other differences, students are able to really contribute while learning in real time through real world application.
From around the globe, students are working through their curriculum but also on individual learning goals in making videos, writing to one another, and collaborating in real time on projects together with a program SMARTamp.
In the project five countries are represented with a total of six participating classes with their teachers: Jörgen Holmberg (Finland), Lotta Ramqvist (Sweden), Staci Kinsler Gelbaum (Georgia, USA), Carla Pinho Vieira (South Africa), Brianna Owens (New Mexico, USA), and Stefan Schwarz (Germany).
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All of the schools participating in this project use SMART Technology to enhance the education experience for their students. “Using SMART Technology in the classroom encourages active learning and interaction among students,” said Staci Gelbaum from the Cumberland Academy of Georgia. “Especially for students with Autism or other learning disabilities, using this technology helps keep our students engaged and excited, making learning fun.” During a SMART Technologies event in Calgary, the five teachers who started the SMARTee Project came up with the idea to add a special member, a small teddy bear who will travel around the world to visit each classroom. The SMARTee Bear’s travels are being documented on a blog for students and families in each country to follow.
“This little teddy bear has become our mascot,” said Gelbaum. “By following the blog about the bear’s adventures, our students get to see things that are unique to every country and connect with the students from around the world.”
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Through the project, students are learning about their own countries to teach others about them and investigating concepts to teach their global peers through their own cultural perspectives. The students are learning to embrace the differences of others but more importantly that despite differences there are many things (and the things that really matter) that make us all the same. Students in the project learn differently so teachers within the project are taking a new perspective that teaching should be different too. Teacher Jörgen Holmberg from Finland notes, “Many students have problems to collaborate with the student sitting next to them - perhaps it’s easier to
collaborate with the student sitting in another country.” A teacher in the project Stefan Schwarz states, “We provide our students with opportunities to share their world with new friends… They embark on new adventures with the help of technology we give our students real world accomplishments.” In the project students are able to connect with other students with similar learning challenges around the world and for the first time despite thousands of miles (or kilometers) in between teachers are getting closer than ever to connecting students to real learning and one another. To connect with the SMARTee team go to: smartee.moobis.se Autism World Magazine - 64
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Online: http://bit.ly/1Ic3EsP PDF: http://bit.ly/1Jth5FT
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IS RDI FOR YOU?
RDI Parent Training with Maisie Soetantyo Autism World Magazine - 67
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Solutions for busy parents Here is a common scenario that most parents of a special needs child can identify with: “After dropping Joey at school, I have to schedule a playdate for him this week, order vitamins online, go grocery shopping, finish a work project, call my dentist, reschedule Joey’s speech therapy session, email his teacher to see if the reward system at school is working… After pick up, Joey has to go to OT today, then I have to pick up Ally at her friend’s home, help her finish the science project due tomorrow, make dinner and somehow put both kids in bed at a reasonable hour because hubby will be working late tonight”.
Sounds familiar? The scenario above is exactly what many of us experience as parents of typically developing children, rushing and juggling to get through the day. But, when you are parents to a child struggling with issues related to inflexibility, lack of communication abilities, poor self-regulation, potty training, school learning and challenging behaviours, family life can be particularly stressful. Most mortal women would need eight arms, 36 hours in the day, endless cups of coffee and a 24-hour personal assistant to handle all of that.
The Relationship Development Intervention (RDI) is a unique parent-based program designed to help parents develop tools to become better guides to their special needs child. The heart of the program is about empowering parents to make a difference in their child’s overall level of functioning, improve lifelong learning and independence and, most importantly, to improve quality of lives for the whole family. All of this is done through meaningful, daily opportunities at home and later community settings.
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Take a look at this video of a mother and her son practicing trust building and slowing down their communication pace, and learning to just ‘be’ with each other:
CLICK ON THE PICTURE BELOW WHEN ONLINE TO VIEW THE VIDEO
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On February 24-27, 2014, a team of husband and wife Certified RDI Consultants, Peter Dunlavey and Maisie Soetantyo, will be hosting a four day RDI Parent Training in the beautiful island of Bali, Indonesia. In addition to these two presenters, Paul Louden, a well-known Autism advocate, radio talk show host and an accomplished writer with Asperger Syndrome will be co-presenting throughout the training. His understanding and input on dealing with challenges living with ASD are invaluable for parents to be mindful of as they make changes in their parenting and communication skills. Bali was chosen for its peaceful and beautiful settings so that couples can get a much needed time to refresh their marriage, connect with each other, as well as learning from other parents in similar situations.
Informative and interactive presentations on how to build trust and a closer relationship with a family member diagnosed with ASD, to remediate deficits in areas of communication, independent learning, problem solving, dynamic appraisal, social and emotional development and self-regulation will be taught through hands-on exercises in a small group setting. By the end of this four day Parent Training, couples will have a specific set of objectives, as well as a list of practical ideas on how to implement RDI principles within their family culture. For more information and a flyer, please visit www.catchclinic.com or email: catchmaisie@comcast.net
Pullman Bali Legian Nirwana Hotel
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Maisie Soetantyo Ms. Soetantyo, co-founder of the CATCH clinic, has been working with children under the ASD spectrum since 1994. Maisie received her degree in Clinical and Counseling Psychology from UCLA under the supervision of Dr. Ivar Lovaas of the Young Autism Project. Upon graduation, Maisie worked under Dr. Doreen Granpeesheh of the Center for Autism and Related Disorders for 6 years, holding the titles of Supervising Therapist and Clinic Supervisor. As supervisor, she was responsible for providing ongoing ABA program supervision to families in Michigan, Ohio, San Jose, as well as the East and North Bay areas. In 2001, Maisie co-founded the Comprehensive Autism Treatment for Children (CATCH) clinic in Sunnyvale California. The clinic was designed to be a facility to combine all aspects of treatment for ASD children and adolescents into one, all-inclusive treatment plan. In 2004, Maisie was a member of the inaugural class of Dr. Steven Gutsteins’ RDI® Consultants Certification program and has maintained her re-certification credentials annually since that time. Maisie is committed to bringing RDI to her native country of Indonesia, and has maintained a consistent presence in Jakarta as well as Vietnam, Malaysia and Singapore.
In 2007, Maisie was one of the first RDI® consultants invited to supersede Dr. Gutstein in his role as host and primary speaker for the Connections Center’s extra-Houston Four-Day Parent Training workshops, and frequently serves as a breakout specialist for the Connections Center’s domestic Parent Training Seminars. In addition, Maisie is also part of the certification committee for the Connections Center, and she also provides supervision to RDI Certifications program trainees.
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Unsung Hero - Ernst - One of a kind by Edwin Van Den Oever Edwin from Ede, in the Netherlands, nominated his son Ernst. In fact his son is so special he decided to sing about him to help him on his voyage. You can listen to the song via this link
TO NOMINATE YOUR UNSUNG HERO EMAIL: STORY@MAGSWEST.COM AND DON’T FORGET TO SEND PHOTOS
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Gravity... Lyrics and music Edwin Van Den Oever and Roderick van Essen I'm searching on live journey, Still my feet are very small. Will you stand beside, and walk my miles, And grab me when I fall. I’ll help you with your voyage, Please, will you walk with me? I need someone who understands, The place where I should be. I may not be able to tell you how much I love you, Or even show you, how I feel and what I really know. Hello love...what’s going on in your mind. Hello love.. what’s in your eyes. Hello love.. showing us we're blind, We’re one of a kind. Son, i'm searching On life’s journey too, But my feet are much bigger than yours. I will stand beside you, And catch you before you hit the Gloor. I may not be able to tell you how much I love you, Or even show you, how I feel and what I really know. Hello love...what’s going on in your mind. Hello love.. what’s in your eyes. Hello love.. showing us we're blind, We’re one of a kind Hello love...what’s going on in your mind. Hello love.. what’s in your eyes. Hello love.. showing us we're blind, We’re one of a kind
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Sensory, Fidget, Educational & Therapy Products – Australia Resources for Special Needs Australia Facebook group has put together a list of Australian Websites for Sensory, Fidget, Educational and Therapy Products.  We hope you find this useful. Click here to view online.
Published free in association with Autism World Magazine.
Autism W rld Magazine
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Improve your rela-onship with your child by cress spicer
It seems to be an ongoing learning curve as how to improve your rela6onship with your au6s6c child. There is no one right answer, as all children are quite unique and there may be a range of different techniques that could assist you and your child. Cress Spicer has been working with au6s6c children for over 25 years and offer her perspec6ve.
A few of the challenges that these special children may experience, include being unable to express feelings, needs or emotions and some are even non-‐ verbal. By connecting with these unique children on a level that they are functioning at, really can enhance and improve your relationship with them.
What this means is by connecting to their world, they may open up to you on a deeper level. Often autistic children have something they are really passionate or obsessive about such as trains, numbers, reading, drawing or nature. If you observe your child for a while you will Pind something they enjoy.
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This is a good opportunity of connecting with the autistic child and getting more access to their world. They often seem to open as they trust you more and if you play with them at their favourite activity and listen to them they are often waiting for us to connect with them. An example of this was when I worked with June. She was a grade 2 autistic child I supported as a student support worker. One of her passions was cats and another was nature. I am also very passionate about cats and nature. When I was not supporting her academically, I would share stories and photos of my two cats. She really loved this connection time and her face lit up. It was so beautiful.
During recess and lunch I would check in on her to see if she was socialising with her friends. Quite often when the weather was not raining she would sit on the grassy hill with a group of her peers from her class. One time I approached her she was showing her girl friends how to make daisy chains. I was so touched by this. I sat down beside her and joined in making daisy chains. I commented about when I was a child I would make daisy chains and sometimes use yellow butter cups. She was elated that I connected with her about nature one of her passions. It was such an honour to be able to connect with her at this level and gain a deeper connection with her.
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Mick another autistic child who was a grade 3 student I supported at school was a very kinaesthetic child. He loved to stroke and hug you and had a genuine love and concern for others. We were working on making sure Mick asked permission to touch or hug others . One morning he approached me in class and asked“ Is it ok to give you a hug or hold your hand, you look tired.” I replied “ I am tired, I did not sleep well last night and feel cranky, thank you for asking yes you may.” He sat down beside me , then responded in a caring voice
He was a beautiful pure and gentle spirit and a joy to be around. The autistic child has much to offer and teach us. Some of these children may not be as emotionally open. By providing a space and time in your day spending quality time connecting with them and allowing them to be accepted and appreciated then can you deepen your connection with them. If we reach out to them and listen to their stories and understand their idiosynchronisities, they are more likely to form a relationship with us.
“Sit down, take it easy and take a deep breath in 1,2,3,4,5,” I said to Mick” Thank you for reminding me to breathe.” Mick looked at me “ May I rub your arm.” I replied “ Thank you I would love it.” He began to massage my arm and the tension began to melt away.
Cress Spicer
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HOW
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ABOUT THEM APPLES THE CALMING SURF
CLICK ON PICTURE WHEN ONLINE TO VIEW OUR
AMAZING VIDEO
http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s http://youtu.be/lMnMCyzF56s Here is a chance again to watch our terrific video The Calming Surf. Supported by the StandUp.Foundation Autism World Magazine - 79
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Crissy O a mum on a mission Autism World Magazine - 80
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I am a mom on a mission, as well as a journey with my three little boys, Austin, Colby and Jon.
is broken and most days revolve around trying to correct behaviors and working on homeschool goals.
Two of the boys are autistic with other issues. I have to deal with two different children on opposite ends of the spectrum.
The cost of monthly therapy sessions including speech and occupational therapy was ridiculous so I managed to learn what I could and have friends help teach me ways that worked well for my boys individual needs.
They have very different personalities where communication
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The ages of my children are 15, 12 and eight and they all have varying degrees of developmental delays, sensory disorder and some types of unknown genetic mutation we have not quite understood just yet. I always have a plan for the day and our mission is to get through the day as positive as we can and then we tackle the next days challenges. Some days it seems like a movie set on replay but there are those good days and "aha" moments that make me giggle with delight and praise when they accomplish even the most simple thing people take everyday for granted. Resources are limited in my area and some of the programs were not working for my children so I set out to do what any mother would do
and research and learn and figure out how to get to know them and how they worked as individuals. Some days we reach little goals and some days, well we just hang in there and do the best we can. It's all trial and error but we don't perfect mistakes we learn from them and change what we need to in order to help them succeed in life. They are happy boys and even if they don't hold up to "normal" standards they understand they are extra special and no matter what they can do anything anyone else can label or not. Blessings, Crissy O
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JOCELYN DAVIS - IN MY OPINION
Autism Spectrum… Something Jocelyn Davis is the author of the children's book ‘There Will Always Be Love’, written by Jocelyn and illustrated by her twin Jess, who is on the spectrum. They travel around the United States with Jess talking about Autism and our experiences. They also host an online show on Sunday nights, discussing disability topics of the day.
A friend brought a really interesting point up to me about Autism Spectrum Disorder. He doesn’t like disorder. He doesn’t like the word. He doesn’t like the characterization it brings autistic individuals. In actuality, he is not the only one to do so. It really gets a person thinking.
What is the value of a name? What are the implications? Can we actually change the way we characterize the diagnosis? Well, of course we can. In reality, we can identify ourselves any way we wish to. But what if we are talking about every person on the Autism Spectrum?
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JOCELYN DAVIS - IN MY OPINION
“To immediately associate certain neurology as a disorder is absolutely negative!”
Does everyone feel the way my friend does? Does nobody who is autistic believe that there is no disorder associated with Autism?
Then, I began thinking a little more deeply on the subject, and I tried to put it into a context that I would be able to relate to.
Initially, I was very much for the changing of the name and taking disorder right out of it.
As a physically disabled woman with certain spinal conditions, I understand that while millions of people have the same condition, not all of them are disabled, not all of them are as disabled as I am and many are more debilitated. If we take all “disorder” thinking out of my condition, I am still disabled.
We want people to view autistic people positively. We do not want them othered, we want autistic people to be treated with respect! To immediately associate certain neurology as a disorder is absolutely negative!
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JOCELYN DAVIS - IN MY OPINION
Being positive about it does not change that. Rearranging words does not change the fact that I have multiple issues with activities of daily living, and often need assistance completing simple tasks. It got me thinking, doesn’t it other those who have real, and often difLicult issues associated with being autistic if we negate the disorder part of it? Still, disorder didn’t quite sit right with me either. How do we address the diagnosis of autism without creating a negative connotation while still acknowledging the challenges that come with being autistic?
Autism Spectrum Individual Autism Spectrum Delay Autism Spectrum Diagnosis (We can keep the same acronym!) Autism Spectrum Neurology… wait… Autism Spectrum Neurology…That would WORK! It would allow everyone on the spectrum to associate with being on the spectrum while at the same time allowing the individual to say, “This is how my neurology affects me.” I wonder what my friend will think of this. What do you think?
So the I started listing things in my head. Email: contact@magswest.com
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https://www.facebook.com/SensoryMovieDay https://www.facebook.com/SensoryMovieDay https://www.facebook.com/SensoryMovieDay
sensorymovieday@hotmail.com
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Autism World Magazine - 88
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