Thursday, 25 September 2014

People with Disability and their RIGHTS

The strange concept around people with disabilities and their RIGHTS.

Now this concept is not actually form the people with disabilities, but from others (mainly service providers).

Now let me just clarify, I am NOT saying people with disabilities don't have, before we start, just remove that idea from your minds....

I believe every human being has the RIGHT to be treated with dignity and respect. we all have the RIGHT to feel our feelings and thoughts and to feel safe.....I am not referring to these RIGHTS.

What I am talking about is there seems to be some bazaar concept floating around that people with disabilities have the RIGHT to do and act as they please....irrespective of whether it is in their best interest or not...just because they are adults.

Now I don't know about anyone else, but for me, I WISH!!! I spent many a problematic year fighting the Universe because I believed I have the RIGHT to do as I please, regardless of the consequences to others or myself. Eventually I realized I really DON'T have that RIGHT!!!

In raising both of my children, I allowed them the RIGHT to an opinion, but there were (and still are) many things I expect from them in regards to how they act and treat others, as well as pulling their weight on this earth. Yes, there was much whinging and whining about not wanting to do this or that...and they have a RIGHT to feel whatever way they want to feel about these thing BUT there was no negotiation around WHETHER they would do them.

I sat in a seminar the other week, listening to professionals complaining about some of their non-verbal clients using their iPads for playing games on, instead of interacting and asking what do they do in this situation because their client  HAS THE RIGHT TO DO AS THEY PLEASE BECAUSE THEY ARE ADULTS!!!!!!!!!!!

REALLY - WELL NO! They have an obligation to do what is required of them within the environment & if that means not playing on the iPad, well that is what it means....

In another incidence, I  was chatting to a employer who has some disabled staff. These people are making things and they are bringing their soft drinks & tea/coffees to the production tables. This employer was at their wits end, because they don't want any liquids around the production tables, for the very obvious reason of damages happening.

BUT, because these people have disabilities, they have the RIGHT to have these there, regardless of the obvious concerns!!! Well....nooooo.......they employer has the RIGHT to enforce whatever boundaries they see fit (as long as they are fair and reasonable) and their staff have the RIGHT to be a bit peeved.

"Disability is not a free ticket 
to doing whatever you like!"

Now I don't believe people with disabilities think like this. I think it is a very crazy education system & overzealous advocates who are driving that weird bus. To you people, I say

"Get over your hangups, allow people with disabilities the very SAME RIGHTS everyone else has and give these people the dignity to live a full life...full of healthy boundaries and being treated as everyone else ids treated"

I for one, will never ever let Chloe think she has a RIGHT to do and act as she pleases...My GOD, it would unleash a very scary monster, heehee. And NOT BECAUSE SHE IS DISABLED BUT BECAUSE SHE HAS HER MUMS ATTITUDE!!!!

The sooner we all take a chill pill & treat people with disabilities the same as everyone else, the sooner our lives with become less complicated...LETS ALL JUST CHILL & LAX....
Off for a lie down now.......

Down syndrome & the missing Gene

 The missing Gene...People with Ds gain a chromosome, however it seems they also lose a gene...a gene that others seem to have an abundance of, and how it complicates life. I call it - the BS GENE..

Yes, the BS know the one...the one that seems to clutter the minds of those of us with 46 chromosomes every time we go to make a decision, try to figure out what that person REALLY meant when they said whatever they said. The one that clicks in when we are with some-one we love...'do they love me or are they just being nice. Why don't they call me, BLAHBLAH'. 

I need to also say here, that BS Gene has never stopped Miss Chloe lying if she thinks she can get away with it!!
She has a problem with buying wrong foods & eating them before she gets like hot chips, jam donuts, coke, you get the picture. Chloe is fully travel trained to her 'work' and she has to catch a train. There is a kiosk on the platform & therein lies the problem! she also only ever has a little money in her bank account & when she spends that, there isn't any left to pay for her programs. This is where the lying enters. "I don't know where the money went. I promise I didn't buy ANYTHING."


"It's not my fault...the potato cakes just jumped into my bag & the money jumped out"!. 

 I am sure you get this picture too... She is getting better at not lying, as she has to deal with the consequences of that action & she never likes that.

 Because Chloe & her friends don't have the BS Gene, they are amazing how they see the world! They see the world EXACTLY how they see it and there is NO muddiness or grey. When some-one says something to Chloe, she takes it as exactly how they say it. There is no complication. Mind you, she is no good with jokes...she just doesn't get them! EVERYTHING with Chloe is literal!!! That doesn't stop us joking with her, we just have to tell her to 'toughen up  Princess & that it was a joke'. Chloe can't keep secrets and has no problem telling people she can't keep secrets, so please don't tell her secrets...SIMPLE!!!

I really enjoy being in Chloe's and her friends company, as I find this way of taking life on life terms deliciously refreshing. I used to do volunteer work with teens. Many of them had very low self-esteem and lots of head chatter. Chloe has a very natural acceptance of herself and is very comfy in her own skin. I used to get my 'kids' to go spend time with Chloe to learn her to accept themselves just are they are.  She helped many of these kids live in their own skin, just because she is missing the BS Gene!!

Chloe has amazing radar for those oozing with the BS gene. She can pick a person who is not being real in a flash. Only problem, the missing BS gene means she doesn't do tact.
If a person is being nice, but their 'vibe' is saying something else, Chloe reacts to the vibe. She reacts negatively by being rude, or ignoring them. This sets off an unpleasant chain of events, as usually the person is so used to their vibe, they have no idea they are emitting it. I am not going to tell them Chloe is reacting to their vibe (I value my safety too much for that!), so they just see a rude young person with Ds. 

It  doesn't matter how many times I tell her she has to be polite, when around people with a bad vibe, she acts out. 

She is my very best radar...just wish she would be a little more subtle, heehee I reckon we could all take a leaf out of these guys books & get them to start teaching us to see the world in a much less complicated way... 


Thursday, 11 September 2014

Teaching an old Ds new tricks

I am sitting at my desk, watching Chloe arrive home from Burke & Beyond. She catches public transport.  I gave her a call to buy some milk on the way home. So, firstly she popped into the supermarket, bought the milk, wandered over to the train station, then caught the bus from the station this end & wandered down the hill home. 

She made it home as the day darkened and the thunder started to roll in. Just in time before the skies opened up for our very first Spring storm!

I mention this because people with Ds are known to not be able to break their routine and dropping into the supermarket is out of her normal home routine.

Since MC was born, I have made it my job to ensure she didn't have a chance to set any routines in concrete.

I will and have always done little things like not have the same meals on the same nights, drive a different way to the shops, changed dinner times, get her to do little jobs differently and now she is pretty competent, get her to pick things up for me on her way home. 

Chloe HATES change as much as the next person with Ds, but she has learnt to adjust and be adjustable and that is a good thing for everyone in her little family.

This doesn't mean she hasn't enforced some routines herself. Whenever she leaves a message on my phone she says: "Hello Mum, It's Chloe here...Chloe Dymond......".  It doesn't matter how often I have told her she doesn't need to say her full name, she will still do it. I decided it is OK to lose a few battles, as long as I am on top of the wars, so I let it go through to the keeper. 

Between Chloe & me, we sure don't lead a dull life.....
You too can teach your child with Ds to become flexible...with a little time, patience & being a little consistently inconsistent.

Tuesday, 9 September 2014

Something to think about...

 True Colors -MattyB Raps Cover featuring Olivia Kay

Today, I am cheating....less words - more visual, but so much impact.
How amazing it is when our younger generation 'GET' acceptance - inspite their parents fears!!! AND how beautiful & touching that the 2 kids who were frowned upon and outcasted, just for being different, still had amazing heart to happily share their playtime with the very same kids who shunned them!! One thing I have noticed about the people I know with Ds, they have a capacity to love & forgive the size of a small country!!! One of the many things we can learn from these wonderful people.
Please take the time to watch listen to this video, it will make your day happier!!!!

Down syndrome people or us the burden?

Well now, that is an interesting concept!
If we listen to some people they are not backward in coming forward about how people with Ds are an economic burden on our society...especially when their loving parents or guardians have died and they become the responsibility of the State.

Now I have already spoken about the fact that young people with Ds are very capable, when taught, but I want to look at the other side.

Sue and her daughter Miss Chloe
Miss Chloe (my daughter) loves the idea of becoming a waitress or hairdresser helper. I know she would be great at both. Chloe gives the very best head massages, she knows how to make people feel good, and would enjoy making a tea/coffee & getting a mag for hairdressing clients, She would be happy to sweep up the hair & whatever other duties she was taught.

I can imagine her waiting on tables...preferably at a quieter cafe. She has a knack of recognizing words (even if she can't read that well) & would work out a way to take the orders. She could easily be taught to use the coffee machine, and would have no prob taking the order to the client, as she already does this when we do soup kitchen every two weeks.

The ONLY reason Chloe doesn't have paid work is because employers can't see past her disability and immediately assume she is incapable...all the time though, be moaning about the fact that they can't get staff to be doing these type of jobs!!!

I believe there has been a new class of employee created by forcing our young ones to complete year 12 & do higher education, strive for degrees etc. These people do not believe they should complete all that study to then perform jobs that are seen as starting at the bottom. (unless they use it to get them through completing the degree in the first place.)

So, boys & gals, who is going to do these menial but vital jobs???

Maybe, just maybe, employers need to stop trying to find the elusive person for the whole job & OMG!!! Look outside the square, split the job into 2 jobs & give one each to 2 people who will really enjoy each job they have.

The joy of hiring a person with Ds is they have no ego, This means, once they have been taught, they will never, ever deviate from that way. Now the downside of this, is the same applies, if you teach them incorrectly...then you can't unteach them. The other reason  they make great employees is they LOVE going to work & will never take a 'sickie', in fact you MAY need to send them home if they are too sick, as they will WANT to be at work!!!

So I ask, WHO is the economic burden?? 


Maybe the economic burden is employers attitudes, cause I know from my girl, she is keen as mustard to be in paid work and she would be an awesome employee for any place that takes the time to correctly train her.


Monday, 8 September 2014

Down syndrome - A life sentence NOT!!!!

 I was asked on radio recently whether I think people with Ds get a bad rap. OF COURSE they DO!!! When a woman is pregnant, do you hear them say: "It's now time for your ultrasound to see if your baby has Fragile X syndrome, Williams syndrome or anything else for that matter"? No, everyone who has had a baby in the past 20+years knows they have the ultrasound to test for ...DOWN SYNDROME!!!!

The medical profession treat Ds like a plague....something that needs to be eradicated & as soon as possible!!! They counsel towards abortion & use words like: "He'll never walk, you will need to look after her for the rest of your life , he will have the capacity of a six year old, she will never toilet train, he will always be sick, she will never work, he will never marry or have a girlfriend or any friends for that matter, she will not have a happy life, because the world will pick on her".

They make rational people do irrational actions that are irreversible, based on fear and negative potential.
Now when we start aborting on potential, we will have very few people left in this world! I, for example, am the child of an alcoholic, so I have a higher potential of becoming one myself...are we next????

What the professionals fail to mention is that only 53% of people born with Ds have heart problems & only a very small percentage of these have severe heart problems.

Many people with Ds are perfectly healthy individuals. Most can walk, eat independently, go to the toilet, and do most things everyone else can.

Yes, they do need to be taught more and we need to break down the teaching steps BUT most people with Ds are waaaay more capable then most people give them credit for!!!

"Society tends to really underestimate people with Ds, & therefore don't bother giving them a fair go!"

Now I want to give some examples of people with Ds who are just oozing with ABILITY.
THIS IS THE ABILITY TO BE THE VERY BEST PERSON YOU POSSIBILITY CAN BE, in-spite your limitations. And yes, I am very aware people with Ds have IQ limitations, but boy, they just find other ways to achieve!!!

Lets start with Chloe: She has been flying independently since she was 15yo. Has even flown from London to Edinburgh on her own. She is an amazing artist & is sells her crafts. She waitresses at a Soup kitchen every fortnight. She figured out & taught me how to call her sister on facebook. Does all her own house cleaning, cooking and gets herself off to wherever every day. She has a black belt in Martial Arts & is a helper teacher, she is also a very competent public speaker. She did her Dads eulogy when he died & didn't want any one up there with her.

A few of the experiences Chloe has had in her life are: 
Hot Air Ballooning, learning to sail, feeding the dolphins at Monkey Mia WA, cruising on many boats, skiing, jet-skiing,
International bus tour, chocolate making course,the London Eye, The Lourve, The Vatican, Vienna & gondola riding, motor bike riding (she LOVES speed), many, many camps, zoos, dining out, exploring most places, road trips, going to day spas, going to live musicals & concerts, going to the Aust Open tennis, AFL footie matches...the list goes on.

She has 2 friends who both speak more then 1 language (one speaks 4 & is an actress!), Another friend has traveled to South Africa & around Australia with his dance group. Some-one else is actually a dance teacher. Another friends parents went OS for 1 month & he stayed home alone, then flew from Australia to meet them in USA.

The we have the young lad in USA who owns his own restaurant, many people who are respected actors, people who have completed year 12 studies & gotten degrees at Uni, people who drive cars, many very successful artists.

Chloe & her friends have absolutely no intention of living at home - or in a group institution.  They all intend to live where they want to live & with who they want to live with & get married, if they want to.

OK, so families & carers do need to put more time into teaching them skills to achieve these goals, but most of them are keen & willing learners!

I need to say, Chloe is not the exception when it comes to people with Ds, she is very much the same as her friends. It's just all her friends, parents & me, have pushed our kids to become exceptional humans in their own right!


Monday, 1 September 2014

A Little Bit Down syndrome

How often do I hear that!!

"Jane is not as severe as Peter....Sally is very Down syndrome..."
Almost every radio interviewer I have spoken to this week ( and there have been many) has mentioned something about the varying degrees of Ds.

Well Guys, I am here to blow that concept right out of the water!!
There is NO SUCH THING AS DEGREES of Down syndrome. As I mentioned in my previous have Ds, you need to have 3 x Chromosome 21..FULLSTOP!!!!

Now we have that sorted, this is not to say all people with Ds are exactly the same.
Just like people with 46 chromosomes, there are many types of people with 47 chromosomes (Ds).

Yes, some can be very sick, but some are very healthy. Babys whose bodys have to deal with staying alive tend to be slower to learn then healthy kids. This makes perfect sense to me!!!

People with Ds seem to have a varying IQ of between 40 & 55 (mild to moderate). People with 46 chromosomes tend to vary between 70 - early 90's).

People with Ds who are bought up in a very stimulating environment, where they are taught to take risks & taught to do things for themselves are more capable then those whose parents do everything for them or are neglected.

Are you seeing the similarity here?? I can hear you; 'Sounds just like 'normal' people'...REALLY....and there are no varying degrees of severity with them are there.

OK OK, yes, people with Ds have additional (or some different needs, mainly due to their lower IQ), but seriously this does not make them more or less Down syndrome.

If only we could have a wheel of life that we spin & we pick the degree of normality we want for our kids.......Actually I reckon it would be very dull...we would be stuck with a whole world of little clones and no diversity..

Give me diversity any day.

Ill be at the RIDE Eastern Expo in Burwood Melbourne, please pop by, say hello & buy my book.
Bye for now