Saturday, November 14, 2009

AuKids Magazine UK

Photo/logo courtesy of the AuKids website

AuKids magazine is based in the United Kingdom (England) and is a quarterly magazine (online and available as a 'hard' copy) for parents of children on the Autism Spectrum. The theme of the magazine encompasses positive parenting and contains ideas, advice and practical solutions for raising and caring for our children on the Spectrum.

Contributors and creators of this terrific magazine are a combination of parents and professionals who are devoted to sharing information and support for parents, and extolling the virtues and blessings of sharing life with our autistic children.

"AuKids is a joint venture between parent and journalist Debby Elley, whose twin sons have Autism, and speech and language therapist, Tori Houghton."

To find out more about this magazine, go to AuKids

Sunday, October 25, 2009

Chelation Therapy

This is an interesting article on the Quackwatch website, regarding chelation therapy. A link to this article is provided for you if you are interested in reading varied pieces of information (and critiques) on one of the many therapies that are proposed for children on the Autism Spectrum (and other persons). The best way to ascertain what is best for yourself or child is to have clear and concise information provided by varying sources, so that you are able to make an informed opinion and moral decisions. Whatever your beliefs are regarding chelation therapy, this 'article' is interesting.

Monday, September 21, 2009

Ebook "Poems and Quotes...Autism Spectrum"

The book is in full colour and contains a beautiful photo/illustration to accompany each poem/quote. These heartwarming poems are just some examples of the many I have penned over time. I'm in the process of collating other poems into another book which will also be available as an ebook, as well as a paperback.

Sunday, September 13, 2009

Articles on "The Greatness of Autism"

(symbol designed by Louise Page, not the logo of N.L.C.)

On the website, Natural Learning Concepts (New York, USA) you will find some wonderful articles regarding the Autism Spectrum, quote "..that will guide you, inspire you and make you laugh and cry".

Jene Aviram is Natural Learning Concepts' President and you can learn more about her and her advocacy for Autism here.

Monday, August 31, 2009

YouTube music "Through My Eyes - Thanh Bui"

"Through My Eyes" sung by Thanh Bui, is a song which aims to help people understand what it is like to live with Autism. It's a beautiful piece of music, with a powerful message.

Tuesday, July 28, 2009

"The Voices and Choices of Autism" a new magazine

"The Voices and Choices of Autism" is a new magazine created by a wonderful woman by the name of Sharisa Kochmeister.
In order to highlight the talents, expertise and person that is Sharisa, this post would be very long. So please go to "The Voices and Choices of Autism" , and you will be linked to ASPLANET's website, where a full description of this great new magazine and info about Sharisa can be read.
Her new magazine is by, for and about persons on the spectrum/differing abilities and also contains articles by well known and highly respected professionals in the 'field'.
I'm a bit 'chuffed', humbled and honoured too, that Sharisa has asked me if I would like to be a contributing author to the magazine.

Friday, June 12, 2009

A beautiful sibling story

Please click on "20/20 Report on an autistic boy" to watch a YouTube video about the beautiful relationship between a teenage girl and her autistic teenage brother.

This report was done by the American ABC and has been thoughfully presented and done with dignity and respect for the family/siblings.

Monday, April 20, 2009

Autism Advocacy

Autism Advocacy - what does it mean for me?

I believe that to advocate for autism means advocating for the civil, human and humane rights of the autistic person.

Allowing the autistic person the ability to speak and be heard regarding their desires, thoughts and feelings, either via their own abilities to communicate verbally, visually or with assistance.

Honoring their choices about how they wish to live their lives and what assistance they request or require to live a quality life.

A while back, I worked in a legal firm which advocated for the rights of individuals who were less able (financially) to 'hire' the assistance of private lawyers to defend them, and/or assist them in empowering themselves to have their human rights (or other important issues, amongst other things) rightfully respected. When these fellow citizens felt their feelings, issues and selves were respected they felt supported, heard and relieved that there was a service with which they felt they had an equal right, as any one else in the community, to be it justice or care.

Autism Advocacy, just as with the legal firm I worked with, should equally honour and respect the autistic person.

Autism Advocacy, to me, is not about curing the autistic individual, providing invasive/inhumane or 'fad' treatments for autism, 'training' autism out of the person, labouring for hours a day to change the autistic child to become 'normalized', and so on............

I feel that true advocacy for the autistic person (child, teen or adult) is to work with them, work for them, work beside them. Listen to them and be guided by their intrinsic selves, their natural ways of communicating and being.

Gain a clear understanding/interpretation of what the elements of their 'autistic' behaviours (e.g. rocking, handflapping etc.) mean.

Learn what is the best way they can confidently communicate their needs and wishes.

Know that what is one autistic person's 'experience' and way of being is and can be very different to the next autistic individual.

Be respected for their individuality and their personhood.

Autistic children (or persons), who are unable to speak for themselves or act on their own behalf when it comes to what assistance is being provided for them, especially need to be advocated for in a fashion as I have described above. They deserve nothing less.

A person who believes in advocacy in its' truest sense is not a self serving individual. They are individuals who believe in honoring the dignity of a fellow human being and acting on their behalf (when needed or requested to) to ensure that such is upheld by 'others'.

Monday, March 9, 2009

William Stillmans' website

William Stillman, an adult with Aspergers, autism consultant and author, has a website called "Demystifying Autism from the Inside Out".
In his archived article section, you will find many interesting articles on autism which promote respect, understanding an compassion for the autistic individual.
These articles include titles such as...............

“Presuming Intellect: 10 Ways to Enrich Our Relationships Through a Belief in Competence”

Autism: A New Cultural Competency and Autism: Food for Thought

Wednesday, February 18, 2009

Black Saturday in Victoria

Allow me to digress from the theme of this blog with this particular post.The day of 7th of February, 2009, would have to have been one of the most sad and horrible in my 46 years.
We in Victoria lost approximately 210 of our fellow Aussies in the Black Saturday Bushfires, with many injured .
Many, thousands, lost their homes, businesses and livestock also. And many members of our beloved wildlife 'family' suffered terribly (apparently millions).
Some of our beautiful towns were literally wiped off the 'map'.
We endured the hottest day in our history and with no rain and strong hot winds, the trees, bush and land felt crispy dry. The temperature at my friends' house (15 kilometers from my home) was 50 degrees Celsius. This temperature corresponded (50 degrees) with the reading on my thermometer, which was attached to the wall of my house, under the shade. The winds were gale force; combining with the heat to create a smokey, oven like atmosphere. It felt like hell on earth.
Those who bravely and courageously fought the wild fires are still working today in trying to contain some of these fires that remain a real problem. Many other wonderful volunteers and emergency service personnel are and have worked relentlessly and tirelessly too.
But as with the spirit and grit like those who know and understand adversity, the Aussie spirit of mateship and caring for each other came to the fore. Through all the tragedy, heart ache, loss and despair, many wonderful souls rallied together - friends, neighbours, strangers and even some wildlife - to unselfishly protect, shelter and care for each other.
The Australian (and overseas) community has so far raised over 150 million dollars; gathered mountains of clothing and other essentials for those directly affected by the fires. Our Australian community 'banded together' and gave what they could to help their fellow Aussies in need.
The pictures at the top of this post, are ones I took on that horrid day and one a week after (the fires are still burning today, 28/2/09), when, as I stood near the back door of my house, I looked up only to see a massive wall of a rusty coloured smoke 'wave' rolling towards us. It was trully frightening. We appeared to be surrounded by smoke.
This horrible event has numbed all of us in the Victorian community and the rest of Australia. The support and thoughts offered by all of those overseas have been much appreciated by us all and I'd like to thank all of those kind persons who have offered such.
My heart goes out to all those souls who lost their lives, and their family, friends and neighbours (those known to me personally and those I didn't know) who will be heart broken without them.

Sunday, January 11, 2009

Aspergers/Autism AQ test

Whilst visiting the Asplanet (Aspergers Parallel Planet in the links column) forum recently, Alyson (who runs the website with her son) posted this link to an Aspergers/Autism AQ test, which we, many members of the forum decided to take.

It is not meant to be a test for formal diagnosis of Aspergers/Autism, but it is very interesting to try it and see what 'score' you may get.

I did the test twice and came out with a score of 30 each time.

If you have ever wondered if you may possibly be on the autism spectrum, this AQ test may give you a hint as to whether you are or not.

Click here to go to the test.

Thursday, January 8, 2009

Autism and parent dilemmas

Recently, I read a newspaper article/letter, written by a mother who appeared to be feeling desperate about the amount of funding (or seeming lack of) available to her family, from the government, in regards to helping provide services such as ABA therapy ("...the nearest thing to a cure for autism..." she wrote). These and other services, e.g. speech therapy, psychological and so on, are able to be accessed with this funding as well.

Another thing she mentioned was that the autistic child "is a drain on the family..." (and finances).

Apart from understanding that the mother and (newly diagnosed) daughter are 'beginning' their journey with autism and that she may be grappling with the diagnosis and what it all means for the family as a whole, I wondered what information she has been provided with in regards to understanding autism; advocating for her daughter and self; the holistic perspective of her daugther's medical, physical, psychological, cognitive etc. needs and so on.

It appeared to me that what she is currently relying on may be limited information regarding the 'steps' available for assisting her daughter. I wonder if she has been offered information or advice regarding learning from or researching the current information available from the many members of the community of autism; mainly those who live with (are autistic) and are specialists in the field of autism?
I wonder if parents are sometimes adequately provided, initially, with important information surrounding the potential of e.g., exposure anxiety or underlying health concerns playing a part in some behavioural issues; the possibility of one or various sensory difficulties affecting a child's enjoyment of life etc.. The list of possible 'sensitivities' or difficulties can seem quite long.
Of course you don't want to overwhelm parents with an exhaustive list of possible areas of note, but if armed with information, most of which may not pertain to their respective child, at least they can be 'aware' of these potentials, note when some are perhaps arising and perhaps have a basic understanding of how to work with these issues and who to enlist to help them with 'their' ethical management.

I felt for this mother and her apparent desperation to find 'answers', "cures" (she wrote) and assistance for her family.
I felt that she was beginning her journey in a land of the unknown. A land where there was a level of fear of the unknown, a search for 'why?', 'how?', 'when?' and 'what now?' And wondered if she was perhaps asking these questions, was she receiving qualitative answers.

The financial commitment to a particular therapy she was finding also overwhelming and concerning. I felt myself asking the question of 'who told her that she needed to fork out massive amounts of money (once the funding had been exhausted) to 'treat' her daughter?' Is this the only way to provide quality of life for her daughter and self (+family)? Is it proven to be the best scenario? Should a select and varied set of interventions (holistic approach) be implemented to achieve quality of life for the child (and family)? In other words, the finances are not exhausted on one particular area, but best utilized for each issue/problem/difficulty as it may present?
By holistic approach, I mean services/assistance/recognising such as, but not exclusively;
e.g. * speech/occupational/physical therapies
* diagnosing potential digestive/metabolic etc. disturbances
* possible allergies
* cognitive processing difficulties/sensory processing
* physical/motor/coordination
* other comorbid conditions
* mineral and other element deficiencies
* emotional/anxiety/interactional difficulties
* family concerns/upsets/behaviours/disposition
* counselling (for family members, and child if old enough)
* environmental (home, school, inside, outside, lights, noise, sound, smell, texture, taste, colours, textures, people, animals etc...) triggers for behaviour or emotional reactions......and so on.
To discover and work with some of the above-mentioned 'things', we may need to employ specialists to help manage them. Therefore, funds may need to be spread across various forms of assistance.
Once a complete (as much as is possible) picture of our child's needs is ascertained, a holistic management method can be employed. (Many of the methods used to assist us and our children cost virtually nothing once we have 'skilled' up ourselves).
I felt I wanted to reach through her letter to her 'pen', hold her hand and help her take a few deep breaths for a moment.
I wanted to let her know that, yes, there is a humungus amount of 'information' on the net, in books, from the mouths of many. It can be overwhelming for a parent new to an autism diagnosis for their loved one.I wanted to say to her to start with the necessary information about her daughter; gather what she needs for her own wellbeing; observer her own daughter's individual needs, desires, abilities and so on, and work from there.

Remove pages from your cheque book only when necessary. There may be no need to mortgage the house. Are there other simple and effective ways to help remedy health (and other) issues which may be presenting with your child on the spectrum?

Listen to the stories from people who are themselves on the spectrum to help gain life's perspective from the 'inside - looking out'.

Some parents unfortunately begin their 'journey' with their child's diagnosis without acceptance. Denying the reality of the situation. Getting 'lost' in 'information. Losing sight of the personhood of the child with the diagnosis.

For some parents this may be temporary. For others, they work through these feelings with success over time. Some parents are relieved to have their suspicions confirmed and acceptance can be immediate. Everyone is different.

What I hope to achieve with blogs like this is to help parents understand the real 'story' of autism; referring them to websites and blogs of people on the spectrum; help them not be swept up in the cylcone of infromation OR misinformation about autism; help them to be 'grounded' - at a grass roots level of living WITH their autistic child and not against them. Share a quality life with their children and not inflict some uneccessary and sometimes inhumane 'treatments' for autism on them.

I hope to encourage parents to not 'blindly' accept all they are told in regards to their child, but to calmly question the validity, humanity, necessity, justification, safety, ethics, real value, purpose, proof of effectiveness and so on of various 'things' they are 'learning of' or being 'told to do' or 'what is best' for their child. From the information we, as parents, are given, we need to 'go with' the best.

Our children deserve the best we can give them. They depend on us.
Ps. Let children be children too.
Just as we need time to reflect, create, chill, be alone, enjoy being 'self', 'do' when we want to 'do', sleep when we want to sleep, laugh when we want to, cry when we want to, get frustrated and want to be understood, to be listened to when we want to be heard, to be held when we need comfort, to express ourselves and so do our beautiful children.