Monday, 19 January 2015

The world of butterflies, rainbows and Ds.

 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....


My friend suggested putting her on the stage, seeing as so many people make money out of airing their issues around their parents.

 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

ME: "Still love you Chloe"!!!! 

Response from my beloved one:

MISS CHLOE: "Yeah Whatever"
and out the door she went...


Take ya crumbs and be quiet!

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".



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!!!

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!!!


The BS about Ds. (Down syndome)

"My life will never be
the same, I will never be able to work....
I'll just be looking after this person for the
rest of my life.

This is what went through my head when I was in hospital..

I was so very, very wrong on so many levels. Yes my life has never been the same.
It's been a big adventure of myth-busting and learning.

"Removing the fear of raising a child with Down syndrome - Waising Miss Chloe" 

In my book, I mention some common myths and bust them wide open,
so I'll will start with them:

1) All people with Down syndrome are sooo loving..
I WISH!!! Of my 2 girls, Miss Chloe is by far the least 'loving'.  She likes her percible space.....

2) There are varying degrees of Ds.
Not if they have Trisomy 21.Then they ALL have 3 x chromosome 21.
BUT there are varying ranges of intelligence, health etc..just like everyone else..
still got 3 x chromosome 21

3) People with Ds all look the samePut them all in a room together & see how true this one is.. heehee

4) People with Ds LOVE their mums....except Miss Chloe,
I irritate the hell out of her.......... :)

5) They will be children forever
This is a weird belief. I have learn't that Chloe is very multi-faceted. Although she may only have the reading & counting capacity of a young child, she processes grief & death far more maturely than any adult I have met. She has a very grown up and strong
concept of her self and her abilities.

6)They will never walk, talk, breastfeed, toilet train..blahblah....
Clearly in so many cases, some-one forgot to tell the kids with Ds. this!!!

7) Down syndrome is NOT a medical condition
but people with Down syndrome can HAVE medical conditions OH and some don't!!!
It is not a guarantee that a person with Ds. WILL be sickly.
Miss Chloe is as healthy as an ox!!!!

8) The medical Profession MUST be right

This belief should be changed, as they can be extremely dangerous with their inexcusable ignorance and sport of negative counseling.

9) Oh, they ALL love music - REALLY!!!!
All our family loves music and Miss Chloe just like what we less.
it took her awhile to get into dancing as much me & her sis...

10) People with Ds. will never get marriedThere is no reason why they can't and many are nowadays.
Miss Chloe is planning to move out with her boyfriend in a few years...and like everyone else, she is just waiting to find the right guy :)

11) People with Ds. can't learnExcept those who have completed and graduated from high school, TAFE, got their licenses, work and get trained.

12) My child will never have friendsWhilst i'll admit this was one of my concerns, Miss Chloe has many, many friends from many, many areas of her life & NO they are NOT all paid carers...mainly just her peers, some with disabilities, some without, some young, some old....

13) The family & siblings will suffer
nooo, unless the family had severe cracks anyway & were suffering already.
In saying this, yes, early days the first 10 years, heehee, can put a strain on families with all the running around, but what if you have a sick child without Ds.
same strain & what if you have a healthy child with Ds...less strain.

14) They are a drain on society
Now this is the one I HATE most and is MOST untrue.
People with Ds. have contributed to the amazing advancements around heart surgery, are contributing to finding a cure or answers for Alzheimer, contribute in making this world a kinder & softer place, teach us to slow down & smell the roses, that love is more important then money & give us lessons on pure unconditional love. If given a chance by the rest of us, there is absolutely no reason for them to not contribute economically...the ONLY REASON they don't' is because people don't want to train or pay them!
There are many jobs put there they would be great at..given half a chance.


That tells me that people with Ds. are giving a whole lot more to the world, than they are taking!!!!

Down Syndrome - the Scapegoat

"Down Syndrome, 
is often the scapegoat 
for other problems, 
easy to blame,  
and perfect to label."

When Miss Chloe was little (and not so little), I blamed every ailment on Down syndrome.
She has none of the big ugly health heart or bowel etc BUT, gee, she has a myriad of minor, very annoying, mind - messing ones!!

Let me explain, Miss Chloe has a stigmatism in one of her eyes and she is extremely long sighted. Originally, I just put this down to her having Ds. However I attended a conference where they said her condition was NOT common to people with Ds.  - Hmmm, I just didn't hear that bit... or maybe I didn't want to hear it ... :)

Anyway, Fast forward approx 5 years from this conference, and my other daughter
(without Ds.) is in year 12. She goes off to the optometrist, because she is having difficulties seeing the blackboard.


And has had
for many years....

Now guilt is not an emotion I have very often, but l sure went close on that day.
You see, with Miss Chloe, I was ALWAYS getting tests for one thing or another & was completely on top of every condition she had, or in my mind, ever condition she was
ever going to get.

BUT With my poor other "no Ds. daughter",
I had COMPLETELY dropped the ball!

it never entered my head that she my have sight or even any other issues...
cause for a good 10+ years only people with Ds have health issues.

The other realization about this issue was, they both inherited it from MY family, as they have different dads!!!

This was a real wake up call, and a stark reminder how important it is to care for ALL.

Chloe had sleep apnea and had her tonsils removed when she was 15yo. This is a rather common condition with people with Ds. So if you have a very tired & grumpy child in the morning, who sleeps loads of hours at night & snores,
get them to a sleep clinic

The change in her demeanor once the tonsils were removed was amazing, and she became a very pleasant human being.

Now comes the interesting thing...recently, I have been diagnosed with sleep apnea,
so I wonder whether I was giving Ds. just another bad wrap?

She also has shocking feet. I actually wish I had taught her to walk on her hands, the feet was such a drama!!!! This is also pretty common with people with Ds.
But I had my Mum visiting recently and Chloe was telling her about her feet -
and you guessed it MUM HAS EXACTLY THE SAME ISSUES!!!

I would love to say, her short & wide stature is because she has Ds.
and can get away with it - till I put her beside her Nanna on her Dads side.
They are 2 peas in a pod!

Now that is not to say, she doesn't have any issues directly linked to having Ds.  Her low muscle tone & occasional dislocated knees are a result of her low muscle tone. She can't wear thongs or Flip-Flops as our international friends call them, because the gap between her big toe & next one is too wide.

But I have to be very careful not to blame Down syndrome for every ailment she has.
I think I sometimes forget she has 46 family-of-origin chromosomes!!

Until next time,