Monday, 31 August 2015

Too cruel for school?

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.

Thursday, 20 August 2015

Ds Day, The Day My World Changed Forever.

"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. 

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 -  



"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"

Wednesday, 12 August 2015

Down syndrome is not a dirty word

"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? 

 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 -

"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.


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.


Tuesday, 4 August 2015

You'll fit right in here, luv

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.