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


  1. Very informative. I'm ashamed at how little I knew about Down Syndrome. I too, believed the myth that it was mostly 'older' mothers who had DS babies. I remember being worried when I had Mr4 at 37.

    Your LJ is gorgeous. x

    1. I too was a little ashamed when I had LJ as I very quickly found out how little I knew and how much of what I thought I knew was wrong! Thank you, he is very cute, even now as a ten year old with attitude he had his cute moments. Thank you for taking the time to learn something :-)