Sunday, 31 March 2013

It Came To Pass ...

It came to pass that on this day, in fact it was yesterday, we went on a family outing!
And to acknowledge the Easter long weekend and many of the celebrations held by religious people amongst us, I gave my blog the title you see above!
Apparently it is a very religious term appearing some 452 times in the Bible and a staggering 1424 times in the Book of Mormon. Fun fact for the day ... done.
The family day out idea all began with LJ, refusing to go to sleep of a night unless I sang a rather large repertoire of songs to lull him off.  As I had been to a wedding over that weekend prior to this behaviour starting, which I wrote a heart wrenching piece about here, it was very easy for him in that initial stage to use my guilt against me.
How DARE I go away for 48 hours and NOT take him!
I decided after many nights of impatience and him trying to string it out further and further, that I had to put a stop to it. The other option I had been considering was recording myself on his iPad so I could play him videos of me singing for 15 - 30 minutes ... I decided to break the back of it and not perpetuate a cycle of behaviour.
Out came the trusty "STAR REWARD CHART"!
First came the "BED", "READ BOOK", "SLEEP" visuals, with the reward of a train ride if we managed to acquire THREE STARS for going straight off to sleep after his book!
Keep in mind, I was at the end of my tether. This had been going on for a month.
Three days, THREE DAYS! THAT, was all it took!  Obviously, I had been played.
While I am on a roll, I thought, let's go for the "STAY IN YOUR OWN BED AT NIGHT AND DON'T COME INTO MUMMY'S BED". Or was I kidding myself?
Seems he loves McDonald's more than he loves me! THREE DAYS!
So of course, we all know, star charts don't hold any value, unless, you carry through.
So off we went yesterday.
We caught the train!
We caught the Ferry,
we ate chips on the Corso!

And of course, when all was said and done, we had a look at the beach ... how can you not?

It was at this point when we were all exhausted and ready to go home, we wandered back up the Corso, got on board the Ferry that would take us back across the Harbour and on to the train that would eventually have us home.
We are truly lucky to live in such a beautiful country, and to be able to finish the day with such a beautiful view ...
And so it came to pass, that on the seventh day, he rested!

I hope you all have a lovely Easter with friends or family (or both) and if you haven't already, take advantage of Monday, and have a day out in our wonderful country!

My Happy Ending: We had a wonderful day and made some magical memories.

Where is your favourite city in the world?

Thursday, 28 March 2013

Best Australian Blogs 2013

Once again I find myself blogging about blogging! BUT WAIT, this is REALLY COOL, I have entered my blog in a Competition!

The Competition is run by Australian Writers' Centre and it is called Best Australian Blogs Competition 2013.

I have entered myself in a couple of different categories, which will be judged by people who have experience and knowledge in such "categories".

BUT, for THE PEOPLE, the people who read blogs (or mine anyway), the good news is, there is a "People's Choice Award".

Which means YOU can vote for ME HERE. Or you can click on that great big blue button up there on the left that says "VOTE FOR ME NOW!" It will take no more than a few minutes. Really!

You will need to scroll through to the "M" Blogs and look for My Happy Endings and simply tick the box next to that name.  You will also be required to provide a minimal amount of information about yourself just so the judges know you only voted once!

The winner of The People's Choice Award receives $1000 in writing courses with the Australian Writers' Centre.

The rest of this information is only for those who might be interested beyond my involvement as there is MUCH competition this year with a final number of entries exceeding 1200 blogs I believe.

So keep your fingers crossed for me (except when you are trying to vote for me) and with any luck I could win the above section of the Competition or, even, something from this list below.

For the winning blogger overall, there are quite some rewards that will of course be beneficial in moving forward with said blog and hopefully the next phase of a career, writing books. The prizes are:

$1500 worth of writing courses at the Australian Writers' Centre
$1000 in cash
$500 worth of books from Random House
A one-hour mentoring session with Brandon Van Over, managing editor at Random House, to discuss publishing a book based on their blog or any other writing projects the blogger wishes to discuss.
This year there are five special awards to recognise outstanding posts and emerging bloggers. Each winner will receive $400 worth of on line or face-to-face courses at the Australian Writers' Centre. The Awards are:
Outstanding New Blog: For an exceptional blog that is under six months old. (For posts written after April 2012.)
Outstanding Advocacy Post: For an exceptional post explaining, advocating or fundraising for a cause or issue.
Outstanding Humorous Post: For the funniest post entered in this special award round.
Outstanding Use of Photography: For a post with beautiful photos used well.
Honourable mention: For a blogger who may not have made it to the finalist round but stood out from the crowd. (This is only awarded if there is a blog that fits the bill.)
My Happy Ending here is of course that I do rate somewhere, next of course is the exposure the Australian Blogging Industry will receive and hopefully showcase many fantastic Australian bloggers.
Writing is truly a creative art - putting word to a blank piece of paper and ending up with a full-fledged story rife with character and plot.
William Shatner

If People with Down Syndrome Ruled the World

While I usually try to stay away from the stereotypes normally associated with Down syndrome, it is reasonable to say those stereotypes have come about as a result of the syndrome itself.

Syndrome as defined in Wikipedia: In medicine and psychology, a syndrome is the association of several clinically recognizable features, signs (observed by someone other than the patient), symptoms (reported by the patient), phenomena or characteristics that often occur together, so that the presence of one or more features alerts the healthcare provider to the possible presence of the others.

We often talk about the Down syndrome phenotype, see this excerpt for a short explanation:

In genetics, a "phenotype" refers to a category or group that can be assigned to an individual on the basis of features or characteristics that reflect that individual's genetic make-up. For instance, a phenotype may describe something as simple as eye color or as complex as a behavior pattern. The purpose of the above paper (link below) was to answer the often asked question: "Does the presence of the third 21st chromosome give people with Down syndrome a specific behavior or personality pattern?" (How many times have you parents heard the "sweet and loving disposition" remark?) For Full article see here.

So it is certainly fair to say, some people with Down syndrome will display some of the characteristics, but not all of them and each person will display different combinations specific to their own character, interests, nature or environment.

Having said all that, WITHOUT FURTHER ADO, I introduce to you Dennis McGuire, PhD who wrote the piece I am showcasing here today ... "If People with Down Syndrome Ruled the World".

This article gives a wonderful overview of some of the more common assets that people who have Down syndrome may or may not have and it is presented with such respect, admiration, humour and good intent, it is a must for every person to read. Read it all, you will be glad you did!

You will learn something AND you will get a giggle. Original source for this article is here.

If People with Down Syndrome Ruled the World

Dennis McGuire, PhD
Adult Down Syndrome Center of
Lutheran General Hospital
Park Ridge, Illinois

This paper was originally delivered as a plenary address at the conference in Chicago in July of 2005, co-sponsored by the National Down Syndrome Society and the National Association for Down Syndrome. It was well received by the audience, and we have received many requests for a written form of the presentation. In this paper I will try to maintain the spirit and humor of the original.
If I am going to describe what it would be like if people with Down syndrome ruled the world, it may be helpful to explain how I came by this information. I am the Director of Psychosocial services at the Adult Down Syndrome Center in Park Ridge, Illinois, a unique partnership between the National Association for Down Syndrome (NADS), Advocate Medical Group, and Advocate Lutheran General Hospital. Our multidisciplinary team has served the health and psychosocial needs of over 3000 teens and adults with Down syndrome since we started in January of 1992. Our patients have let us into their world, and what a rich and interesting world it is.

Development of the
Adult Down Syndrome Center

Before beginning, let me provide a little history. NADS, as the oldest Down syndrome parent organization in the country, had many members who had teen and adult age children. These families found there were few health or social services available to them. Sheila Hebein, Executive Director of NADS, was determined to develop resources for these individuals and their families. She recruited the Center’s Medical Director, Dr. Brian Chicoine, and myself to help develop and then run the Center, and we continue to have a very close working relationship with NADS.
Why us? Brian had some experience in his medical practice with persons with disabilities, but he also did not have a great deal of contact with people with Down syndrome. One could say I also had led a sheltered life. Sheila’s son, Chris, was probably the first person with Down syndrome I had ever met. Still, Sheila seemed to know this would work. The good thing about our lack of experience was that we were able to listen to the families and the people with Down syndrome without any preconceived ideas, assumptions, or biases.
We learned quickly that the families are the experts with regard to their sons and daughters-because they had to be. We view the information we have gathered from families as a repository of their wisdom. We hope this paper will be helpful to families who are searching for ways to improve the lives of their sons and daughters.

What would happen if people with DS ruled the world?

If people with Down syndrome ruled the world:
Affection, hugging and caring for others would make a big comeback.
Despite the fact that my family was not terribly affectionate, I have had a crash course in hugging at the Center. I am confident that if people with Down syndrome ran the world, everyone would become very accustomed to the joys of hugging. Fortunately for me, I had a head start. My wife is a native of Argentina, and I got some intense exposure to hugging when I landed in her country and found there were 6000 members of her family waiting to be hugged as we got off the plane.
All people would be encouraged to develop and use their gifts for helping others.
In our world, too often people with Down syndrome are “DONE FOR” by others, when in fact they are great givers. If they ran the world, their ability to minister to others would not be wasted.
People would be refreshingly honest and genuine.
People with Down syndrome are nothing if not straightforward and unpretentious. As the expression goes, “what you see is what you get.” When you say to people with Down syndrome, “You did a good job,” most will answer simply and matter-of-factly, “Yes, I did.”
We believe, too, that a stuffy high society would probably not do well in the world of Down syndrome.
However, we believe that BIG dress up dances would flourish. People with Down syndrome love dressing up and dancing at big shindigs. They have a ball, and ...can they dance! (and by the way, who needs a date... “Just dance”).
Most people we have met with Down syndrome also love weddings. This should not be a big surprise. They love getting dressed up, being with family and friends, having good food, and, of course, dancing until the wee hours of the morning. (Many people love it so much, they will chase the band down at the end of the night, begging them to continue.) Perhaps, too, part of the reason they love weddings so much is not just because of the food and dancing, but because in many cases the rules against hugging are temporarily suspended. This may give people a little piece of what I experienced in Argentina. Whoa! Can you imagine what the world would be like with so much affection unleashed?
People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.
People with Down syndrome have a reputation for “talking to themselves.” When conducted in a private space, self talk serves many adaptive purposes.
It is a wonderful means to ponder ideas and to think out loud. It allows people to review events that occurred in the course of their day. It allows people to solve problems by talking themselves through tasks. It allows them to plan for future situations. It is also helpful in allowing people to express feelings and frustrations, particularly if they have difficulty expressing their feelings to others. There is even evidence that athletes who do not have Down syndrome use self talk to motivate themselves. Certainly people without Down syndrome talk to their computer (particularly when it crashes), and likewise many people talk out loud when driving in Chicago. (Of course they may also make odd gestures as well; not recommended if long life is one of your ambitions.)
Order and Structure would rule
We have heard that many people with Down syndrome are stubborn and compulsive. Now, I know what many of you are thinking...“Did you really have to bring that up?” I’m sorry, but—we do. What we hear is that quite a few people have nonsensical rituals and routines. They can get stuck on behaviors that can drive family members a little crazy.
Despite the irritations, there are also many benefits to these “obsessive compulsive tendencies.” We actually have termed these tendencies “Grooves” because people tend to follow fairly set patterns, or “grooves,” in their daily activities.
What are the benefits of Grooves? Many people with Down syndrome are very careful with their appearance and grooming, which is especially important since they often stand out because of their physical features. Grooves also increase independence because most people are able to complete home and work tasks reliably when these tasks are part of their daily routine. (And while they are not fast ... they are very precise.) For many with Down syndrome, grooves serve as a way to relax. Some people repeat a favorite activity in a quiet space, such as writing, drawing, puzzles, needlepoint, etc. Grooves also serve as a clear and unambiguous statement of choice (very important for people with language limitations). This may even be a way for teens with Down syndrome to define their own independence without getting into the same rancorous conflicts with parents as many other teens.
So given what we know about people with Down syndrome and grooves, how would they use this to run the world? Here is how:
  • Schedules and calendars would be followed.
  • Trains & planes would run on time.
  • Lunch would be at 12:00. Dinner at 6:00.
  • Work time would be work time.
  • Vacation would be vacation.
At the Center, our receptionist, Shirley, will often have people at her desk pointing to the clock or their watches. Obviously, she hears about it when we don’t take people back at their appointment time, but she also found that some people refuse to go back early: “Nope I am not going at 9:45, my appointment is at 10:00,” nor does going over into the lunch period work. I am sure all of you have similar stories.
But there is much, much more:
  • People would be expected to keep their promises.
  • Last minute changes would be strongly discouraged (if not considered rude and offensive).
  • Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).
  • Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).
  • The “grunge look” would be out, way out.
  • “Prep” (but not pretentious) would be very big.
In the world of Down Syndrome, there would be a great deal more tolerance for:
  • Repeating the same phrase or question
  • Use of the terms “fun” and “cleaning” in the same sentence
  • Closing doors or cabinets that are left ajar (even in someone else’s house)
  • Arranging things until they are “Just so.”
Despite their compulsions and grooves, people with Down syndrome rarely have the really ‘bad habits’ that so many of us have. In fact, out of approximately 3000 people we have seen at the clinic, we have not seen any drug addicts or gamblers and just two alcoholics and a very small number of smokers. However, we think that pop may be a common addiction in the world of Down syndrome, and of course some people are incurable savers and hoarders of just about everything, but especially paper products and writing utensils. Because of this, I could see maybe a Betty Ford Center for pop addicts and extreme paper hoarding.
The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.
At the Center, we frequently hear about pace, or how fast or slow people move. Quite often these issues are discussed in disparaging terms by harried and frustrated family members. In this world, people with Down syndrome have a reputation for having two speeds, slow and slower.
Therefore, in the world of Down Syndrome:
  • Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.
  • Here and now would command a great deal more respect than it currently does.
  • Stopping to smell the roses would not be just a cliché.
  • Work would be revered, no matter what kind, from doing dishes to rocket science.
We have consistently seen respect and devotion to work by people with Down syndrome. This is such a strong characteristic for many that they don’t want to stay home from work even if feeling ill. Perhaps more importantly, they value any kind of work.
Therefore, if people with Down syndrome ran the world:
  • Speed would be far less important than doing the job right.
  • Work would be everyone’s right, not a privilege.
However, we think there would probably be no work conducted during the time that “Wheel of Fortune” is on TV.
All instruction would include pictures to aid visual learners.
Many studies have shown that individuals with Down syndrome have deficits in auditory memory. If they cannot remember verbal instruction, they may be considered oppositional or less competent in school, home, or work environments. Despite this, they have exceptional visual memory-they are visual learners. If they see something once, they can usually repeat it. They also have an exceptional memory for facts and figures of interest (favorite celebrities, movies, music, sports teams, etc).
If people with Down syndrome ran the world:
  • School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.
  • Counselors would be able to use visual mediums to help solve problems.
What About News?
If people with Down syndrome ran the world:
  • Weather would be the only essential news item
  • News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?
What About Bad News?
If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”
What About “Behaviors”...
...and terms such as (the ever popular) “Incident reports,” “Outbursts,” “Unprovoked outbursts” (one of our all time favorites), and of course “Non compliance”?
We believe that in the world of Down Syndrome, anyone writing “incident reports” would have to go through sensitivity training, which would consist of someone following them around writing down everything they did wrong. Brian Chicoine and I both figure that we would have been on major psychotropic medications long ago if we had people writing up incident reports on us.
We have found that most people with Down syndrome are very sensitive to expressions of anger by others. I imagine they would do all they could to help reduce and solve conflicts between people.
Therefore if people with DS ran the world:
  • Anger would only be allowed in special sound proof rooms.
  • Trained negotiators would be available to everyone to help deal with any conflicts.
  • The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”
What About Self Expression?
  • Art and music appreciation would be BIG.
  • People would have time to work on paintings and other art projects.
  • Acting and theatrical arts would be encouraged for all.
  • You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight ... absolutely.”
  • The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.
  • People would be encouraged to get married several times to have more weddings for more music and dancing.
  • Richard Simmons and John Travolta would be national heroes.
  • Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)
  • Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)
  • John Travolta would be the biggest star.
  • Classic TV hits would be very BIG and take up at least half the TV schedules.
  • “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.
  • Wrestling would be very Big.
  • “Life Goes On” would also be very Big and replayed regularly.
  • There would be fewer movies, but they would be replayed over and over.
  • Movie theaters would allow people to talk out loud to tell what happens next.
No Secret Agents
  • People would not hurt the feelings of others and they would also not lie or keep secrets.
  • Therefore there probably would be no secret service agents, spies, or terrorists.
The purpose of this article is to give back some of what we have learned to the families and people with Down syndrome who have come to the Adult Down Syndrome Center and who have been so giving and open with us. If people understand more of the special talents people with Down syndrome have, they may be more able to help them use and develop these talents to improve their lives. We also wanted to reassure families of younger children with Down syndrome who are concerned about their child’s future that there is much to be optimistic about.

My Happy Ending: The broader community will begin to understand and enjoy the wonderful people we have in our communities and enthusiatically include them in their lives.

The quote below comes from here, and while I cannot find the name of the person who said this, they are a person who has Down syndrome.
"The doctor who discovered Down Syndrome many years ago was Dr. John Langdon Down. I really wish that his name was Dr. Up so that today, Down Syndrome could be called "UP" Syndrome instead. Then maybe people would begin with a better attitude towards us as they start to understand what we are all about and what we are really capable of doing."

Wednesday, 27 March 2013

It's Time To Change The World

I am going to tell you right now, this post will be longer than my usual posts. It needs to be.

I need to tell you a story, a complete story, because Changing The World is not something any of us should take lightly.

This story is ultimately about a Murder that took place on the 12th of January 2013 in a town in Maryland USA, a Murder for which nobody has been held accountable because the victim was disabled, and because of his disability deemed "Already Compromised".
Here is the New York Times article.

In short, a young man, who happened to have Down syndrome, went back into a movie theatre to watch for a second time a movie he had just seen, but he did not have a ticket for a second screening.

Due to the fashion in which security dealt with this issue, within half an hour,
Robert Ethan Saylor was dead.

The mention of Changing The World is initially in reference to my blog post written for World Down Syndrome Day 2013 where I talk about educating the people outside of the Down syndrome community, about Down syndrome (DS).

When I wrote that, I was not aware of this crime, so the extent of that post was not far reaching enough to have ever thought that I might have to consider the type of education that might prevent a death. And that, in itself, is far too big a solution to include here.
And changing the world now seems much more important!

I was however, not simply meaning education about basic facts like the medical terminology for DS is Trisomy 21, nor just that there is an extra Chromosome on the 21st pair, not just that people with DS are as different to us as they are alike, I was eluding to more relevant information. The type of information the greater community will need if they are to truly include people with DS.

What I did not say, and again, I made the error that people would know this, is that most people with DS take longer to process information, their brains work beautifully in many ways, and from my experience, they are usually great problem solvers and make wonderful Personal Assistants, as once they grasp a concept or an idea or a memory, they rarely forget; but they need a bit more time to learn, to consider and process a conversation or instruction, or to think about their own response.

What does that mean to us? How can we be more inclusive in this type of situation?

When I speak to my son, who has DS, I have to be more patient, I need to wait, to give him time to think about what I have said, to process that information before he will respond or react to what I have said.
Time that Robert Ethan Saylor was not given.

Most people with DS have difficulty with what is called "Transition", which is simply moving from one task to another or even one place to another.  Not only is the processing time for the change a consideration but they want to know what next? Which comes down to a difficulty with scheduling or planning, so I often use visual communications such as signs or photos, as people with DS learn very well via visual methods, as do many other people.

Again, what does that mean to us? How can we be more inclusive in these situations?

Taking time is of the essence, ensure the person with DS understands that the time has come to move on from the task at hand and be sure they understand what is next.
An understanding Robert Ethan Saylor was not afforded.

Now tell me, how are these courtesies any different (other than it may take a little longer) to what you would expect for yourself? We demand the rights we feel we deserve as Human Beings, and so those should carry over for all Human Beings.

We use the word INCLUSION because people with DS and other disabilities want to be included. Do we think it is enough to just "allow them to exist"? Do we not realise still, how much every person has to contribute to this world? The fact that we are all different to each other is what makes this world such a rich place.

Robert Ethan Saylor was no different to any of us,
he wanted to live.

He would have wanted to do things that he enjoyed, to be able to have a life where he could have choice, friends, spend time with family or go see the odd movie. So he did, he went with his Carer to see a movie, but as a result, he is dead.
There seems to be many reasons procedurally that Robert died, but the State's Attorney For Frederick County at the County Court House in Frederick Maryland says this in their press release:

The opinion of the Office of the Chief Medical Examiner was that a 25 year old Caucasian male, ROBERT ETHAN SAYLOR, died of ASPHYXIA, Down's Syndrome, Obesity, Atherosclerotic Cardiovascular Disease and Accessory Conduction Pathways of Heart are also significant conditions ... This individual was already compromised by his Down's Syndrome, obesity, body habitus, and heart disease, making him more susceptible to sudden death in stressful conditions which would compromise his breathing. Using the medical definition of homicide (but for the actions of other individuals Mr. Saylor would not have died), the manner of death is best certified as HOMICIDE.

And AGAIN, I ask, What does this mean to us?

Firstly, it means Robert died as a result of other people's actions!


Thirdly, Robert had Down syndrome NOT Down's Syndrome (but you would think a Medical Examiner would know that).

Finally, AND THIS IS THE PART YOU WILL BE INTERESTED IN, all the medical conditions mentioned above, as with any of the characteristics of DS, can be found in the general population. They are not unique to a person with DS.

In short, this could have been your Son, Daughter, Mother, Father, Uncle or Aunt who just happens to have similar health problems, who may have simply been confused or maybe didn't understand the request made of them, maybe their English language skills were not so good, maybe they had difficulty hearing ... this could have been anyone.  The fact that Robert had DS is completely irrelevant given the methods used to remove him from the Cinema, and yet, his death is being blamed on him having Down syndrome.

Had anyone else with similar medical conditions been hog tied with three sets of hand cuffs and left to lie on the floor face down in a panicked state, they could have also died, but their death would NOT have been blamed on Down syndrome! In fact there are many incidents previously of people who have died in similar situations at the hands of others, who did not have DS.

My heart breaks for Robert, for his family and friends and for the community that had embraced him, as I hope one day will be the experience my son can fondly look forward to, but to ensure complete inclusion, we must continue to fight for the rights of those who need our support.  We must also fight for justice for Robert and ultimately ANY person who might find themselves in that same situation.

Down Syndrome Uprising has also written about this story and have started this petition.  Please sign it, take a stand for Robert and Human Rights!

As I am in Australia, I am not sure what else I can do, but to show my support from afar which hopefully makes this an Internationally supported incident and in the hope that may help keep the fight for justice for Robert and Human Rights going world wide.


There have been many people write about this tragedy, people who are parents of children with DS just like me. People who are articulate and who write heart felt words like these Make World Down Syndrome Day a Day of ACTIONDeath by Down syndrome, We Stand in Solidarity, Abuse (and Murder) of People with Special Needs Has To Stop! and this The Sound of Terror.

You will excuse me if I cannot find a Happy Ending in this post, however, if Robert's killers are brought to justice, that would do it for me.

The hope of a secure and livable world lies with disciplined nonconformists
who are dedicated to justice, peace and brotherhood.
Martin Luther King, Jr.

Thursday, 21 March 2013

World Down Syndrome Day

Well here we are March 21st! Another opportunity to "spread the word" about Down syndrome has arrived and I ask myself, "Am I doing enough?". I think not. And it is not for lack of trying.

My son LJ is 10 years old, and for most of his life I have had to fight to have him enrolled, included, Educated, noticed or simply treated by a medical provider who understood his disability. I have had to advocate for the rights that are legally his and yet at times are so illusive. And it is not always about people ignoring the laws that exist, it is about lack of knowledge of Down syndrome itself, which I am then required to impart, ONE. PERSON. AT. A. TIME. It is exhausting!

LJ as a very cute baby
Social media has made connection with others so much easier in the last decade, the reduced cost of distributing information has made it more accessible for most people to "tell their story" or "send notifications", but are we using these methods wisely? And, are they even effective? Again, I think not. Well, at least not for this cause.

When we are talking about "AWARENESS", we are talking about real people, and yet, the Internet takes away the personal contact aspect that is the crux of the matter when it comes to inclusion and acceptance. It becomes "yet another story".  How can we make that shift?

I not only have this blog, I have Twitter, (370 followers) @s_lynn4 for anyone who might be remotely interested, which is where I keep up with what is going on in the world via news networks, other blogs and common interest groups, I also use it to advertise my blog.

But, telling my story to just 370 people is not really going to change the world! And THAT, my friends is what we are really saying we want to do when we talk about things like inclusion, acceptance, awareness, advocacy etc. Because in this world, the one we really live in, it does not exist to the extent it needs to, because those things come about as a result of interactions with other people!

WE NEED TO CHANGE THE WORLD! (Insert maniacal laugh)

So if we all subscribe to COMMON INTEREST GROUPS on Facebook, Twitter and blogs, in essence, we are actually missing our target audience.

We need to be connecting with PEOPLE WHO ARE NOT INTERESTED!

THOSE, are the people we need to be targeting with all the education!

How do we do that? Glad you asked :-)  We ALL know someone who is NOT INTERESTED!

Your brother in law, the TAFE Teacher; Your Aunt, the University Lecturer; your neighbour the Doctor; your Local Member, The Politician ... you get the picture right?

I have a grand plan, as always.  I don't seem capable of thinking small, which is why often, my plans don't take off, they are too big for one person!

And therein lies the key ... I am a part of a World Wide Community, because I have a son who just happens to have Down syndrome!

I have my 370 give or take people whom I can reach via the Internet and Twitter, and, I have people I know in real life who, would also have their own networks and so on, much like a pyramid scheme!

Now I am not suggesting we do anything illegal, as there will be no money changing hands, but why do we not use these networks better? And why do we now in this age of Internet, rely ONLY on Internet?

Down syndrome education is about people.  People who have Down syndrome, people who go to school with them, who work with them, who go to the same church, who are in the same Theatre groups, people who teach them, provide them therapies, who treat them medically people who are face-to-face with the people who have Down syndrome, which is where real inclusion, acceptance and advocacy counts, face-to-face, with real people.

While I have seen some great ideas like Lots of Socks, they involve individuals educating individuals about the intricacies of Down syndrome. From my experience, once you have shared one fact with a person, their eyes glaze over and they just sit blankly, staring while you talk about a subject which is close to your heart.  Much like a teenager having a "conversation" with a parent.

OR, you have the "I know everything about Down syndrome" group, telling you that you are too sensitive because you are trying to set the record straight on a generalisation such as "they love to hug". I'm here to tell you ... don't get too close to LJ, he's NOT a hugger.

Or the language Nazi haters, I am a language Nazi and believe me, people don't like to be reminded that my son has Down syndrome! I have tried to tell people before about the correct language, here for example. I digress, how unusual ...

Inclusion and acceptance need to be modelled. LJ has attended schools where the support units were an unknown entity to the rest of the school! The other kids wanted to know one day "What's wrong with him?" Heart breaking, and NOT inclusion! There, there is one starting point.

LJ now happens to attend a school which is moving forward in their programs of inclusion and they have happily agreed to send a flyer home to every family in the school which simply tells them "Ten things people with Down syndrome would like you to know ..." (and they are doing that TODAY, on World Down syndrome Day) which, for a Primary School is perfectly appropriate. (see below for those ten things).

Here is a link for you all today that simply outlines What is Down syndrome.

We need to educate from the top to make it easier for Parents to talk to Children, for Teachers to talk to Students, for Government Departments to talk to their front line service providers (Police, Ambulance, SES, Fire Fighters), for Lecturers to talk to our future Doctors ... YES Our Future Doctors!* For Educators to talk to future Disability Industry Service Providers**, and so the list goes on!

We need to get back to campaigning for these things on a greater scale and in real life to the ones who ARE NOT INTERESTED.

So write to and talk to your politicians, Department of Education, TAFE, University, Neighbours, Government body, implore them to include PEOPLE based disability training in their Curriculum, not just what they might need to know medically etc, encourage them to learn more about the person who has Down syndrome and their likenesses as well as the differences, because they are as alike and as different from each other as the rest of us. Tell them to involve their local Down Syndrome support group (so they get their facts right). I challenge you to get on board!

Today, well, I am hosting a Morning Tea - T4321, which of course you all know what that stands for right?

I want everyone in the world to know that the people I love who happen to have Down syndrome, are as much loved and valued as the people you love and value.
LJ as a very cute toddler
My Happy Ending will be when I don't have to explain to someone why LJs speech is not so easy to understand, or why he can do the splits without even trying, or why he looks a bit like the other boy in his class that also has Down syndrome.

But my Happiest Ending of all will be when someone asks me, "Does LJ like to play sport?" because he does, he loves basketball, swimming, soccer, Tball and running, just like any other 10 year old boy.

"Our lives begin to end the day we become silent about things that matter." Martin Luther King

*I had a Doctor interrogate me for 20 minutes when I took LJ at 6 weeks old because he had a cold, as to what I might have done during my pregnancy to have caused LJ to have Down syndrome. He asked me if I had smoked or consumed alcohol "because you know they are contributing factors?" While rationally I knew that was not true, I found it hard to believe he did not know what he was talking about, and while I did neither of these things, I was devastated that I MIGHT have done something!

** You would think it is part of their training. I had a disability worker ask me what disability my son suffered from.  I told her he had Down syndrome, but he suffered from peoples ignorance!

Ten things people with Down syndrome would like you to know. . .

1. People with Down syndrome have an extra 21st chromosome but the regular 46 we all have are there too. They are as alike and as different from each other as the rest of us. Although people with DS may share some common facial features, they share more in common with their parents in both looks and personalities than with others who have Down syndrome.
2. Contrary to myth, most people with Down syndrome are born to mothers younger than 35. Down syndrome is not caused by anything their parents have or have not done.
3. Every person with Down syndrome is an individual, with an individual personality, likes, dislikes, abilities and needs, just like the rest of us.
4. People with Down syndrome enjoy their lives when they are well supported – like all of us. One cannot assume they are ‘a victim of Down syndrome’ or ‘suffer from Down syndrome’. They are not a ‘Down syndrome person’. They are a person, who happens to have Down syndrome.
5. Down syndrome causes disability, but it is not an illness. Some people with Down syndrome do have health problems, and are entitled to the same quality health care as everyone else.
6. Learning starts at birth for children with Down syndrome, just like everyone else, and doesn’t stop.
7. Children, teenagers, adults with Down syndrome all have feelings, thoughts, ideas, interests and dreams. They know what they want from life - friends, relationships, work, leisure choices and a measure of independence for a start. With support, people with Down syndrome can live interesting, fulfilling independent adult lives.
8. You may have difficulty understanding the speech of some people with Down syndrome, though they are usually excellent communicators. Their understanding is usually better than their speech. Some do have a lot to say!
9. You’ll find people with Down syndrome working successfully, with varying degrees of support, in retail, offices, child care, hospitality and gardening to name but a few occupations.
10. In 1960 the life expectancy of an Australian with Down syndrome was ten years of age. Today people with Down syndrome live longer lives than ever before – most will live into their 50s and 60s. The oldest person with Down syndrome on record was 85 when she died in 1998.

For more information for Parents, Students or Professionals here are some helpful links:
Down Syndrome NSW
Down Syndrome Association of Queensland Inc
Down Syndrome Ireland
Down Syndrome Education USA

Try Google for a Down Syndrome Association in your country

Saturday, 16 March 2013

Why do we blog?

Well, here I am, blogging about blogging!

I believe it is the cardinal sin of blogging, but I am not an experienced enough blogger to really know the rules, nor am I Catholic.

I suppose the question for me is not really why do we blog so much as why do we share?

Blogging is just another way to put out there those thoughts that spin around in my head all day and DO. NOT. STOP. Much like my talking (which you can find out more about here).

We all have a way of sharing that is most comfortable or convenient for us.

Some chat over coffee with a friend or family member, some email, some write letters to various customer service centres (to compliment or complain), some keep a journal or a diary, some have husbands who listen and sometimes even speak back, some talk with colleagues and in "the olden days" we wrote letters, put them in envelopes, put a stamp on the envelope with an address and popped them in a "letter box". (See image below for those who are unfamiliar).

And of course, there is the telephone to enable you to speak with whomever you so desire anywhere in the world.  We also have Skype and many other VOIP choices these days and well, the iDevices, we now have Face Time!!! What an irony?

Before we had all these devices, that was all we had ... face time, REAL FACE TIME!

While this photo is not exactly indicative of a Letter Box in Australia, I found it a good opportunity to show you all what a Telephone Booth was too! But I digress ...

As humans, we need other humans.  It is really that simple.

A while ago now, I was given a list of "Characteristics of a Healthy Relationship".  In the past I have chosen the wrong people to be a part of my life, and while they have moved on or I have, I am always concerned I will make the same mistakes over again, so I often refer to my list (below for those who may be interested), but one of the Characteristics on the list is:

"You can talk comfortably with each other and you feel listened to".

If you are here reading this, you will know that I am a single parent and my youngest son LJ has Down syndrome.  What you may not know is that I have no source of support.  I have no formal respite package, I have no extended family and, as we moved away from the place that we had lived for 15 years only 1 year ago, I have no local networks, so that does not leave many opportunities to get out and have a chat.

When my kids are home, I have no time for anyone else or when I do, it is too late at night to be phoning people for a bit of a chin wag.

I often have people comment on how late I have sent emails! Oh well ... I still ponder why people check that on an email? They ponder I suppose why I blog .. but I do.

So, I blog and I will keep on blogging.  You may think this a little odd, but I do feel comfortable and I do feel listened to. I receive comments on my blog, and when I post my blog notice on Twitter or Facebook, I often get comments there too or ever a "like".  They are responses, they are interactions and they are my company and my conversations.

Another Characteristic on my list is this:

"You are growing and the relationship is growing".

This, to me, is the most important thing, which I do believe we can do via a blog.
In fact, if I am not doing this, then I am not sure my sharing is what it should be?

My hope for me, my blog and my blog readers is that we can all learn something new everyday, and often, the best way to really learn, is from a different perspective.

Here is my list of Characteristics of a Healthy Relationship. I hope you have these in your lives.
  •  You feel respected as a person
  • Your physical, emotional and spiritual needs are met
  • You are not afraid to be yourself
  • Trust, trust, trust is everywhere
  • There is a sense of humour and play
  • Love is a verb not a noun
  • You feel good about yourself
  • You can affirm and support each other
  • You are appreciated and not taken for granted
  • You want to spend time together
  • You are growing and the relationship is growing
  • You like the other person and you feel liked by the other person
  • Privacy is respected
  • You can talk comfortably with each other and you feel listened to.
My Happy Ending: Since I started blogging, I have found a whole new community online that I never knew existed. It is full of people who have opinions and are happy to share them, intelligent people, interesting people, people who have experienced some incredible things and most importantly, people I can learn from.

"Live as if you were to die tomorrow.
Learn as if you were to live forever."
Mahatma Ghandi

Friday, 8 March 2013

Our Mardi Gras Experience

Thank you to all of my readers who enjoyed and commented on Gay Pride or Mum Pride. and all the Tweets of support and encouragement.

As promised, herewith is the follow up post.

So you know what to expect, let me just say, I will not be commenting on the events that took place involving Police after Mardi Gras in this post, however, it is highly possible there will be another post that covers that!

I left off in the above post where I had dropped MJ to catch the train to the city ... Fade to memory shot like in the movies.

On screen: Mum and younger sibling pulling away in the car from the train station ... worried look on Mum's face, younger sibling "Can we go to MacDonald's NOW?"
Narration: In the spirit of supporting my son and acknowledging his maturity and the trust I have in him, I decided to refrain from texting him every 5 minutes to be sure he was OK and off we went to Maccas.

A few hours later: Vision of me checking my phone with surprised look on my face and a big smile.
Narration: I was very relieved when I received a text from MJ letting me know they had arrived safely and had eaten!

Getting on with the day: More foggy memory vision (in slow motion) of Mother and younger sibling playing in the backyard with bubbles.
Narration: I then got on with my afternoon, enthusiastically keeping LJ entertained as a method of distracting myself.

Enough with the theatrics, life is theatrical enough! (not to mention how difficult that is to write).

I hurried to feed LJ, bath him and get him into bed (after of course reading him a book, or 10!), he was also noticing his brother's absence with many "W" questions causing a significant distraction to sleep.

The minute he was asleep, I took to Twitter, Facebook, MSM, anything ... to simply try to get some idea of how things were going at Mardi Gras. BECAUSE IT WAS NOT TELEVISED!!! Pretty sure there is a Petition in order over that!

I managed to get a bit of a running commentary and was soon aware that Mardi Gras 2013 had come to an end. Pondering my previous commitment to trust in MJ and allow him the level of autonomy he needed to be liberated as a Young Gay Man at his first Mardi Gras, I fought the urge to text him to see he was OK.

It paid off!  I received a text informing me that they were all safe and on their way to get some food. I waited a full 30 seconds before I replied with "That's good ... How was it?"

Back came the reply I had hoped for ... "It was beyond fabulous! Such an amazing vibe!"

Not long after the appetites had been suppressed, I received another text to say they would all be on the train home soon.

That was not the end of the night for us. Because we live so far from the city, MJ was staying the night with his friends whose parents had made room for 4 more teenagers in their home (Thank You!)

I received a few more unsolicited text messages with status updates and finally the one I always like to get when MJ is not at home, "Good night. Sweet Dreams. Love you. xo"

And so I slept.

Happy Ending: When MJ arrived home the next day, we talked for hours. I have to say just one more time how proud I am of him. 

The insights he gained from this experience, the fun he was able to have, the way he responsibly did what was required of him to ensure his safety and how he embraces all people without prejudice or judgement just makes me look forward to what he will accomplish in this world.

We could all take a leaf out of that book.
The NOH8 Campaign is a charitable organisation whose mission is to promote marriage, gender and human equality through education, advocacy, social media, and visual protest.
This is not a sponsored post

Saturday, 2 March 2013

Gay Pride or Mum Pride

After thumping out my post of Things That Make Me Smile, I of course thought of many more things. As you do. 

But one thing, or person, who makes me smile, in fact, makes me grin with bursting pride, is my eldest son MJ. 

Disclaimer: The little one has the same effect on me although for different reasons. 

When MJ was 12, he came to me looking a bit nervous and with a very serious look on his face, not to mention all the other body language that was going on and told me he needed to talk to me.

We had had a tedious year, for want of a better word. I had recognised that this was probably due to puberty creeping into our otherwise peaceful home and had duly done copious amounts of reading on the subject. But generally, things were still OK.

I had noticed on this occasion my usually outspoken, confident, articulate son was taking a bit of a back seat it seemed; so I was immediately on alert. I became very concerned as terrible scenarios started to play in my mind. He NEEDED to talk to me! Oh.My.God., what could be so terrible that not only was my usually very talkative son preempting his need to talk to me, but he looked so terribly worried?

I took a very deep breath and tried to clear my mind, which had already come up with at least 20 awful things that might have happened or might be about to happen. 

Being a bit later in the night and with his brother asleep in bed, I asked him if he would like a hot chocolate, and so we both had one and we sat on opposite sides of the kitchen bench facing each other. Our usual positions to engage in open, honest communication. It was difficult, but I tried to do more listening than I am at times known for, because I knew whatever this was, it was important and I needed to give him my full attention.

And there it was, after much uncharacteristic small talk, hypotheticals, facts and talk of statistics and research already done, the words finally came.
"Mum, I am gay."

NOT, I think I might be, or I am not sure but, nor was there any hesitation or quiet voice. Right from the very first time my son had said those words out loud, he was a proud gay man! I immediately knew he would be OK.

I already knew he had it in him to have the maturity, confidence and self esteem to be whoever his path in life would make of him, but I was glad to hear with those four words that he knew who he was!

I don't know if that makes me a proud gay mother, but however the sequence of words, the most valuable of them all is proud.

Gay Pride Flag
The colours represent: Red for life, orange for healing, yellow for sun, green for serenity with nature, indigo for harmony and violet for spirit.
It turns out his nerves were for me, he was worried about me, not what he had to tell me, nor really my reaction and I am still not sure if he thought I would feint or have a heart attack, but I hope he never for even a split second thought there would be anything negative in this news to me. Because I am proud of him. I am proud he can stand up and be counted for who he is, that he is already advocating for the GLBTIQ (Gay, Lesbian, Bisexual, Transgender, Intersex, gender Queer or Questioning) Community, that he is making friends across all walks of life and most of all, that he is following his heart to be the best person he can possibly be in all areas of his life.

I told him that while I was intrigued that we had never before really touched on the subject, I was actually not very surprised, you see, he is my son and I love him and as a result of having spent a lot of time with him those previous 12 years, I had sort of got to know him. As you do. He then informed me that he had been feeling this for a year, so he knew when he was 11 that he was gay, but because of societal attitudes, he had not know what to do with that information, hence our "tedious" year. 
Rainbow Pedestrian Crossing on Oxford Street near Taylor Square Sydney
Today as I write this MJ is nearly 16 and is at Mardi Gras under the expert supervision of an organisation that has lent its support and provided valuable services within the GLBTIQ Community for some thirty years!  He is with friends, advocates, professionals and people who support not only the GLBTIQ Community, but the Youth of that Community, he is with twenty10

As I dropped him at the train station, I admitted to him it was freaking me out sending him on his way to Mardi Gras, but I also told him how proud I am of him, also, how to not drink any water unless he knew exactly where it had been, how to stay together, how to wear his rain poncho and not get too wet, and most of all, to have a wonderful time and enjoy himself as any 16 year old should be able to do dressed as a dinosaur!