Inclusion seems to be the answer to everything, but it's important to remember that just because you include, doesn't mean you solve the problem.
In many cases exposure to the elements, isn't going to create some new inner self esteem and super powers to overcome fear, and social inhibitions, in'fact it does just the opposite.
There is a myth that some believe, that full inclusion is the only way to eliminate
the bigitory & negativity that seems to be around people with a disability in society.
With an 'INCLUSION AT ALL COSTS' mentality that is more about the process rather than the people.
"In a perfect world, with perfect people and environments, this concept would be...well perfect. But there-in lies the problem...we are all different."
Now please, don't get me wrong, I am all for inclusion but there are so, so many ways this can be achieved, and without a blanket rule or culture.
Before Miss Chloe was school age, I had very strong thoughts about where she was going to go to school. I'd decided she was going mainstream, and no way was I going to put her into 'one of those special schools, where she will never learn to read or write'
I even kept her out of school for a year, to build her up, and make her more mature to be able to handle school better.
As with many times in my life, this was just another of those moments where ignorance got in the way of common sense for me. Fortunately, my mind was open enough to hear a suggestion from Chloes' early intervention centre...
"Just go and have a look
at the special schools."
I was not impressed with the responses I received from any of the mainstream schools & was feeling rather disillusioned... So i took the advice and visited 2 special schools in my area. Oh wow, these places blew me away!!!! Both were amazing! And yes, the kids learn the 3Rs, as well as many important living skills (more than most of the mainstream schools even consider)
The classes were small and they had all the extra specialist's on staff (OT, Speechie, Physio etc). What I really loved, was that these schools, operated from a point of positivity,
I knew straight away this was the place for Chloe.
Chloe has a personality that is very competitive & strong, if I had insisted she attend mainstream school, this would have come shinning through, and I would have been called up to the school every second day.
Something, I couldn't afford to have happen, as I was a working single mum.
In mainstream school, she would be noticed as being very slow to get a grasp on things like reading, writing & maths, this also wouldn't have helped her. We also didn't have much of a chance of getting an aide, because Miss Chloe is high functioning, and even if she did get an aide, she would have acted out with them as She HATES having someone in her percible space & hates people doing things differently for her.
She flourished at special school. She fitted right in, made lifetime, natural friends and learnt at her own pace.
Yes, I have integrated her in other ways. She has always gone to mainstream holiday programs and has many mainstream friends, as well as her friends who have a disability.
"I believe inclusion is valuable, but not at the expense of the well-being of your child."
We need to always be monitoring the progress of our kids, and if something is not working, we need to be prepared to do something different. This is the only way our kids can reach their full potential.
Interestingly, many organizations have tried to make me feel guilty for
not choosing inclusion....
BUT I am NOT going to play political games or
use my girl as a pawn in the game of 'everyone has a right'
I believe in a different view. "Everyone has a right to CHOOSE what suits them best."
We need to respect our children & stop making Inclusion the magic wand.
"On the 12th August 1991
I faced my greatest fear, head on."
Pregnancy can be a scarey process. So many things to look out for whilst you are caring for, and carrying a living person to term. Now imagine during that process, that the ONLY thing you truly dreaded was the fear of delivering a child with Down syndrome.
A strange thought as you have never really been associated with people with a disability before, but every fibre inside you shook when you thought about that scenario happening to you. You live your life in fear for 9 whole months.
Truthfully, The
only previous experience I had with a person with Down syndrome was with my neighbor, he had Down syndrome, was an adult and lived with his elderly
mum.
He couldn't talk, but would grunt, he was a large man and walked
with a kind of amble and he always had he tongue out. His mum only
dressed him in Kharki school shorts & a tee. To be honest, he really
frightened me! And the idea of having a baby like him frightened me
even more!!!
I was confident I wouldn't have one (I had a miscarriage the year
before & decided that was because that baby had a disability &
'God' knew I wasn't the mum for a baby with a disability), I still told
my doctor EVERY month of my pregnancy that
"If there was anything wrong
with my baby, I wouldn't take it home."
Now imagine that just after you have brought your child into the world, that your doctor tells you that he suspects she has Down syndrome.
FAST FORWARD.
It's funny how when the worst thing you believe could happen to you actually does, and every reaction you actually do, is nothing like what you predicted you would do at al!!!
Not once did it enter my head to leave her in the hospital when I was given the news. Although it did creep into my thoughts, in the days after- when the loopy pediatrician would come visit, bearing doomsday news of what my 'now' sad little life would be like -
A FOREVER SLAVE TO MY BABY.
"She would never walk, she will not advance mentally past the capacity of a 6 year old, she won't be able to be toilet trained, she won't have any friends, you will have to do everything for her'."
These were the words of advice given to me by the pediatrician.
So there we were, him at the end of my bed, with his folder across his chest, talking to me, me sitting up in the bed, with that look endangered species get in their eyes, as the headlights are rushing down on them, then we have my doctor behind him waving his hands in the air like a traffic controller bringing in a plane & mouthing the words NO! NO! NO! My Doc spent at least 2 hours after the pediatrician left repairing the damage that had been done.
I had immense grief, but none of it was for Chloe & how her life would be. It was all about ME. It was about me losing my dream of what my baby was going to be like. BUT more then that, it was grief around what MY life was going to be like now.
I envisioned never being able to go back to the workforce, losing all my friends - because who would want to hang around with some-one with a disabled baby? Now I will have to live in an estranged marriage for the rest of my live. Yes, how odd was that one. We had been not good for a long time & I had it in my head that we would part after the baby was born...NOW I'LL HAVE TO LIVE WITH HIM FOREVER!!!!
"My whole world exploded in-front
of me with the concepts of my new life, and the outlook of my future."
When I was told, I sobbed sooo hard I had trouble breathing, I sure couldn't talk!! Chris (my husband) had gone home, so I was alone. I am a person who gets busy when bad things happen to me, but I was stuck in a hospital bed & couldn't go anywhere - or do anything! No such things as mobile phones back then.
"Instead, I decided I would keep this baby and take on the challenge the Universe had dished out to me."
BUT I was NOT going to look after her for the rest of my life!
I would work hard to ensure she had every opportunity to become a fully functioning (within her limits) , independent human being.
24 years on and NOTHING either of us predicted came even close to reality!!!
In fact Miss Chloe is one of the most amazing women I have ever met. She is a very capable, productive, balanced, kind, daring, witty, calm human being. She is a person magnet and draws people to her without doing anything. I actually hang on HER shirt-tails!!
So although my world caved in on 12th August 1991, my new world is a far more amazing world then I could ever have envisioned & it is BECAUSE I had a baby with Down syndrome - NOT INSPITE OF having a baby with Down syndrome.
As my amazing doctor said to me way back then: "Sue you didn't try to envision Shannon's life as an adult when she was born, so stop trying to envision Chloe's"
"Once you stop listening
to the little voice inside your head,
and remove the fear of
losing your freedom, individuality,
life as you know it, new career as a permanent servant.... you'll be fine."
So how different is it really?
Specialists? 
Doctors?
Hospital visits?
This is not unique to people who have Down syndrome, and can happen with lots of babies who are sick or have issues.
In my world our family operates like any other family, now, before you go off on a tangent, I am NOT SAYING we are the same. I actually have two children, and my first child was without Down syndrome, so I do know the differences in raising a child with and without Down syndrome.
I also know the difference in having a baby with chronic colic for a year,
and having a baby who sleeps through the night from two weeks old.
And Miss Chloe was not the one with the colic!!!!
For whatever reason, I accepted, in my heart, that Chloe had Down syndrome.
But I have never seen it as a curse for her. I clearly remember one day (one of many in the early days) sobbing my heart out. My doctor was there and I remember saying to him that...
"it wasn't her I felt sorry for, as she is who she is, and that is normal for her, it is me I felt sorry for, as my life would never be the same".
Well, if only I knew...I was right about my life never being the same - it has been AMAZING and is mainly because of
Miss Chloe!!!
I was also right about her thinking Down syndrome is normal, as it is for her.
I have never hidden the fact she has Down syndrome from her, just as I have never hidden the fact that there are things she can do easily and things that will take longer and things she will never be able to do -
JUST LIKE EVERYONE ELSE IN THIS WORLD.
"It is forever ago that I stopped thinking
Down syndrome is a dirty word,
and just see it the same as anything else."
Miss Chloe says she COMES FROM Down syndrome, and I agree with this concept.
On planet Down syndrome,
they do things differently, they take longer to learn our ways, they see things differently then we do, they are very clear in their thinking and they 'Say what they mean'.
I have many friends of different nationalities and I GET what Chloe is saying.
Whenever someone is in a conversation with Chloe I suggest they listen like they are listening to a heavy accent (I will never, and have never - ever spoken for her), and this is what I do when speaking to other people with Down syndrome.
"Yes, Down syndrome has it's
challenges, but shame or heartache, shouldn't be one of them"
Please do not assume your child will have a difficult life just because they have Ds.
They are more likely to have a difficult life because they are told it will be difficult!!
When you meet Miss Chloe and say:"It's nice to meet you", she most likely will respond with:"I know".
Over the years I spent a lot of time mentoring teens with very low self-esteem. I would actually tell them to go & spend some time with Chloe, as Chloe is a person who presumably has lots of reasons to have low self-esteem and has NONE!!!! She thinks she is awesome and so do most other people, and if they don't, she doesn't really care that much!
Recently we went to her weight specialist. Yes, she is overweight. The specialist asked if she would feel better if she lost more weight and Chloe looked at her and went:"Huh?"
I suggested to the specialist that she already feels good about the way she looks and we need to focus on the health aspects.
WHAT A WOMAN!!!! I SOOO ENVY HER WITH HER HEALTHY BODY IMAGE!!!!
Down syndrome is not something to be ashamed about, it is not a noose around anyone's neck and it is not dirty word ,UNLESS YOU MAKE IT SO.
Our kids will become whatever we project onto them.
WHAT ARE YOU PROJECTING ONTO YOUR CHILD AND THE REST OF THE WORLD?
Miss Chloe and I recently traveled around the world, visiting some amazing places.
This is the welcome we received almost as soon as our feet hit the ground in the Land of the Lepricorn.
Even before we alighted from the plane, Miss Chloe had started. She has a habit of talking to herself out loud. Not only does she talk to herself, but she actually has around 3 different characters, with 3 different personalities, with 3 different voices......
These conversations become more regular when she is placed in surroundings of unfamiliarity, or does not know what is going to happen next.
Arriving in a foreign country we had never to been before ?
yep fitted right into this category!
I politely mentioned to her on the plane that she needed to put her friends away and she could talk to them when we got to the hotel.
I have never ever tried to stop this behavior, because, to be honest, it doesn't hurt anyone and more importantly, it is her tool for figuring things out.
I have always been firm on what she does in public, as I fully understand that people judge when someone is doing something out of the 'norm', so I have taught her to leave her 'friends' at home when we venture out.
This is usually all good, but not this time....
When I politely made the suggestion, Miss Chloe came back with:"I'm a young adult and you can't tell me what to do".
This is about the time my attitude went pear-shaped. I was already slightly stressed, thinking about going through customs and collecting our luggage...
I hissed at her:" I don't care that you are a young adult - we are in a foreign country and I don't want to get in trouble because you are talking out loud to yourself, so please just put them away till we get to the room!"
Miss Chloe proceeds to argue rather loudly and then promptly ignores me. This is always the signal to me that this conversation is finished and Miss Chloe is not happy with me.
We get out of the airport with no incidents or dramas,
(if you don't call Chloe loudly carrrying on about her horrible mother to her 'friends' an incident.)
We grab a taxi,
and are greeted by
this wonderful
cheerful Irish cabbie.
Cabbie: "How are we, girls?"
Me: "Good"
Chloe: "Not good"
Cabbie: "Oh luv, whats your problem?"
Miss Chloe: "MUM, she won't let me talk to my friends".
Me: "Chloe has invisible friends and I asked her to stop talking to them
until we got to the hotel because we are in public".
Cabbie: "Oh, luv, you can talk to your invisible friends all you like in this country.
You will fit right in with the rest of us here, Luv!!!'
Miss Chloe: "SEE MUM!!"
OK, I gave up, but inside my little heart was singing with joy at the amazing welcome we received in that very fine country.
This is a story about
why I can't wait for NDIS
(National Disability Insurance Scheme) to commence in the land of OZ.
Miss Chloe has a Personal Trainer to assist to get her fit and out of the Morbid obesity zone. She trains two times a week and is making really good inroads.
I pay for one session and I have a package that pays for the other one, Chloe's PT invoices them directly. Now this is one of those disability organizations we see a bit in this great country that believes they are doing the client a favor, and the client and client's service providers MUST work around them and fit into their boxes.
Chloe's trainer is a micro-business owner. She works for herself and like most
micro-business owners relies on being paid on-time or with the 30 days.
She recently approached me, desperate for some guidance. The disability organization hadn't paid her for 10+weeks...and she had left numerous messages and sent many emails, and had NO response. I was disgusted, as I have lost a service provider before, due to another disability organizations lack of respect or care about paying within an acceptable time. Chloes personal trainer is excellent for Chloe and she really takes her out of her comfort zone. The results have been remarkable. I am not at all keen on losing her, due to this organizations incompetency and lack of decency.
I spoke to my case manager and voiced my concerns. Her supervisor called me back within 24 hours and was lovely. She arranged a manager to call me.
Well, he was on the defensive right from the get-go.
Rude, short and bullying. Silly man, I am not the type to slink away from this behavior. In his words,
"It is very unfortunate that they are 3 months behind,
but accounts are very busy. She will eventually get paid".
I couldn't help but verbalise "would he find it acceptable if they took 3 months to pay him because they are busy?" Well, no, he wouldn't accept that, "but we aren't talking about me..." he said.
He then proceeded to tell me, she should never have spoken to me about the issue, as IT ISN'T MY BUSINESS.
OOOH and of course one of the old favs came out...IT"S A PRIVACY ISSUE!!!
I am really not sure who's business it is when my service provider needs to cut my services because they aren't getting paid. And I explained that she had tried to contact the organisation several times with no joy, so what exactly should she have done?
After a bit of ArgyBargy, they agreed to pay her promptly. I am praying this is every time..not just this time!
When NDIS comes into play, this won't be an issue, as we will be responsible for our own packages and it will be up to us to pay our service providers on time.
AND DISABILITY ORGANIZATIONS WHO ARE FULLY SELF-ABSORBED AND BULLYING WILL BE LEFT ON THE SIDE OF THE ROAD.
Then the manager won't have to worry about being too busy to pay honest people, he won't have a job to go to himself.
BRING ON N.D.I.S AND GIVE US BACK SOME RESPECT AND DIGNITY.
IGNORANCE -
lacking knowledge or information about something;
not educated (Oxford Advanced Learner's Dictionary)
So if this is the definition of ignorance -
why is it so many people are offended when some-one says they are ignorant??
I am a member of a few facebook sites specifically for people who love a person with
Down syndrome, I never stop being bemused at people who get angry because
some-one said something 'ignorant' about their child.
Before I had Miss Chloe, I thought all people with Ds needed to be locked away.
I ooozed ignorance in every meaning of the word, I was a person who was not only ignorant herself, but also not interested in learning anything about the topic and was very vocal (if anyone would listen) about my views.
Miss Chloe rocked the very foundation of everything I stood for,
And this was the very best thing that could ever have happened to me!!!
From the time I bought her home and a wonderful person from the
DS Assoc of Victoria came out to visit me (she had a spring in her step & a huge smile on her face), my ignorance around Ds and humankind started to melt away.
I am here to tell you, I never, ever get upset or offended when some-one says something ignorant about my child.
You know, something like: "She isn't severe, is she?", "Does she love music",
"You're so lucky', they are so loving", "Will she grow out of it?",
"Does she understand?", "Will she ever get married?" and on it goes................
You see, I promised myself I would never forget what I was like before I had Chloe,
and these statements and questions are a great reminder of my past life, but they also give
me great clues that a person is genuinely interested in Miss Chloe and is humble enough to admit they don't know everything, but are open to be taught.
And teach them is what I do well. I always feel honored when this happens, as I know with all my heart there will be one more person in the world who is a little more enlightened after our conversation.
It is never tiring and I find it very stimulating.
Everyone is ignorant about something - YEP EVEN YOU!!!!
We just don't know everything about everything. Once you realise you are ignorant about something, you are given two choices:
1. Ignore the information and remain ignorant ( an insult for you and the other person )
2. Listen and learn. ( opportunity to see something in a different light and become aware )
I have just come back from visiting Northern Ireland. Until I went to Belfast, I had an entrenched opinion about the conflict that had taken place over there in recent history. I acquired these strong opinions and ideas from what I had seen on TV and read.
Whilst there I was blessed to be taken on 2 tours, one in Belfast and one in Londonderry/Derry. WOW, what an eye-opener this was for me. Listening to people who have been personally involved in this crisis really made me see,
I had a lot of mis-information.
I came away feeling very moved and with a massive mind-shift around the whole event and the people. It was the most inspiring feeling I have had for many years.
I am one of those people who now love to admit I am ignorant, as it opens up an opportunity for me to learn something new and to become a less judgmental person.
So the next time a person asks what you think is an ignorant opinion or gives an ignorant comment, see it as an opportunity to educate...not as an insult or drag.
REMEMBER WE WILL ALL BE GIVEN THE OPPORTUNITY TO BE TEACHERS IN THIS WORLD - STOP A MINUTE AND THINK ABOUT WHAT KIND OF TEACHER YOU WOULD LIKE TO BE........I WOULD LIKE TO BE A TEACHER WHO ENLIGHTENS PEOPLE.
I have been off the air for a bit...
But you know, sometimes life just gets in the way! it's funny how when you first have a baby presented to you with a disability, the whole world just orbits around said child and you forget about all the other 'life issues' everyone has.
As time rolls on and you slot into the same life, but different, and this new way of life becomes routine,these 'life issues' come back to the front & the idea of having a child with a disability becomes 'normal'.
At the moment, I am in the midst of creating an amazing new Not For Profit Organisation
to help all people with disabilities step into their own light...no matter what that light may look like.
I am also living through one of those 'life issues' we all have from time to time, so my mental resources and stretched very thin...for now....
I am a firm believer in the saying: 'This too shall pass', and know with every fibre of myself, that what I learn from this experience can either make me stronger and wiser or bitter and twisted...I choose STRONGER and WISER.
So, I haven't run away, just prioritizing for now...I will be back with loads of new & interesting items to chat about..
Till then...Which choice do you make when life gets in the way...
stronger and wiser or bitter and twisted? - it's your choice.
Once I recovered from the gut-wrenching, free-falling emotions of having given birth to a baby with Down syndrome, I began to bask in the rosy glow of my ignorance around Down syndrome.
"Well at least she will ALWAYS adore me.
"She will be my biggest fan & LOVE spending time with MAMA"
"She will hang on every word I say AND
I will be able to tell her anything and she will believe me!"
"If I treat her normal, she may 'turn' normal".
"Although I will need to teach her everything,
she will be an easy child and will love to learn from me"
And on it went. Now these things were easy to believe for the first 18 odd months, as Miss Chloe was an ideal baby. She slept 8 hours every night in hospital, when she would awaken in the day, she would politely lie there, waiting patiently for me to feed & change her...BLISS......
She knew exactly what she was doing. Over time, the above disillusion became rather entrenched with me and I was lolled into a very false sense of security!!!
Mind you, her not being attached to anything,
(no teddy for Chloe, no thumb, no dummy, no blankie, nothing) from birth should have been a warning marker for me...but my rosy glasses were fogged over...
Imagine my shock when she found her feet AND a very bad attitude to go with them!!! Overnight my perfect angel turned into mini-me with an extra chromosome.
Examples of early arguments:
ME: "Oh look, Chloe - there's a train"
Miss Chloe: "No bus"
Me: "No darling that is a train"
Miss Chloe: "BUS!"
Back & forth till I got grumpy & said: "OK, it a bloody bus!!!"
I have never, ever been able to get her to say 'Mummy". I would say things like:
"Love u Mummy" to her, to which she would respond: "Love u MUM".
Shannon my other daughter, used to adore me and love being in my company.
We would go crazy on the dance floor together. Chloe, on the other hand - exact opposite!
I go on the dance floor & she will do 1 of 2 things.
1) If the dance floors is really big, with lots of people, she will go to the other side of it and dance with strangers.
2) If it a small dance floor, she will go & sit down.
I was shattered, but it doesn't matter how much I beg, she won't budge!
I took her to the MBS (Mind Body Spirit festival) once in Melbourne.
Chloe hates wandering around the isles, so I took a picnic for her & set her up at a small, round table in the cafe area. I would come back & check on her every few isles.
I ran into a dear friend in an isle, who asked about Chloe, so we wandered back, so my friend could say hello. As she turned the final corner, she heard a strangers voice say
"Is that your mum?" Miss Chloe turned & looked & just said "No, that's just Jane, Oh that's Mum behind her"
This is the scene that met me:
Approx 10-12 people crowded around this tiny table for 2. All in various stages of fits of laughter or leaning forward to hear more, and what exactly was Miss Chloe saying to enthrall these people....
WELL SHE WAS REGALING
THEM WITH STORIES
ABOUT HOW HER MUM
ANNOYS HER....
My friend suggested putting her on the stage, seeing as so many people make money out of airing their issues around their parents.
MY SHATTERED DELUSIONS..
Lucky I have enough self-esteem to not need her constant approval!
Just this morning she came out with:
MISS CHLOE : "Bye - Love you.."
With a heart full of joy I responded with:
ME : "Love you back!!"
I then got the reply
MISS CHLOE: "NOT YOU...THE DOG!!!"
ME: "Still love you Chloe"!!!!
Response from my beloved one:
MISS CHLOE: "Yeah Whatever"
and out the door she went...
AHHHH MY SHATTERED DELUSIONS......
This was the attitude I received from a 'lovely' disability officer today when I called to see where we stand in regards to traveling overseas to see Chloe's only sister, Shannon who lives in Scotland.
When I called to find out some Information regards the pension and traveling,
I was told that:
"The reason I should consider myself lucky
is because this very rich country actually gives
people with a disability money to help them survive...
"not all countries do that, you know".
NO LOVE.....YOU SHOULD CONSIDER YOURSELF LUCKY I DIDN'T LEAVE HER AT THE HOSPITAL WHEN SHE WAS BORN!!!!
It costs Australia approx $100,000 per person with a disability to keep them if they live in a community residence (staff wages, food etc). yet I only get approx $22,100 per year to do the exact same job as they do. Add Chloe's pension & it STILL is under half!!!
So, WHO SHOULD BE SO LUCKY???
The reason for this comment is yet again the Government have found a way to screw us with less.
I booked tickets to go over to Scotland in November, These were booked using money that was inherited from Miss Chloe's dead father.
Four years ago when we traveled OS, a person with a disability was allowed to be away for 12 weeks before she had her pension suspended. It has changed to 6 weeks. Even worse
The Government announced in the May budget they were going to drop this in 2015 to
just 4 weeks. Legislation went through in early Dec 2015.
Problem is, we are away for 5 weeks & the Government won't adjust it for people who booked their tickets before the legislation was passed. Funny thing is, there is a 4 month wait to get assessed to see if she is able to get an exemption for the extra week.
At present Miss Chloe is assessed as being capable of working 0-7 hours per week.
To be eligible, she needs to be incapable of doing ANY hours per week.
Am I missing something here, because this smug Centerlink woman thought this was a reasonable demand!
Hmmm, so let me see (hand on chin, pondering)....Chloe is capable of doing paid work max of 7 hours per week. She can't stay out of the country for more the 4 weeks in any 1 year....I suspect, because this is normal holiday allowance in Aus & Oh My God, 'we' can't have her extending a holiday, when she could be working...even though, 'we' refuse to pay her for any work she is capable of doing...cause we don't have to....... yes, I can see how that would work!!!
I wonder when society are going to give families caring for a person with a disability a fair go & start to stand up & demand better services & deals of us...
WE GET TIRED & WE NEED SOCIETY TO UNDERSTAND that by looking after carers & their needs , they are saving themselves millions every year.
Yes, YOU should consider yourselves lucky, carers have big enough hearts to do one of the hardest jobs for the very least payment!!!
"Just go and have a look 
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