I recently presented at the 50th ASID (Australasian Society of Intellectual Disability).
What a wonderful event is was, held in sunnyish Melbourne, Australia. There were many interesting speakers and the common theme was 'SELF-ADVOCACY' & "CHANGING MINDSETS"
I sat in the room and listened to the 2 speakers before me. Before sittng down, I was a little anxious BUT once the first speaker opened up, I started to relax.
Her talked completely complimented what I was presenting on.
Never accept less than excellence for our loved ones with a disability and, more importantly NEVER GIVE UP!!!
Then the second was a researcher and spoke about
results of some workshops around teaching carers and families empowerment and ways to get unpaid support!
Well, I started to think these guys had been looking over my shoulder as we compiled my presentation, so many common thoughts an ideas!
I spoke about iDareU and how we are going to give families tools to find their voice and to dare to dream for them and their loved ones.
Carers and service providers need to start changing the way they dance with each other.
It is a very sad truth to say, the Disability field is based on scarcity, distrust and fear.
This starts at the top and bleeds into every crevice of disability....no wonder by the time the front-line workers come face-to-face with their clients, they have become the Keepers of the funds and clutch tightly to the key that unlocks a clients 'GOOD LIFE',
Ensuring these pesky GIMME GIMME GIMMERs' act according to the Keepers demands to receive...maybe not what they want....but something they MAY be able to use!
"I spoke about how for very little money, service providers and clients need to see each other in a positive light."
Service providers need to be responding to a client with
" I will need to go do some homework & get back to you.....
instead to the automatic NO or Can't or I don't think we can..."
I, for one, can accept something can't be done, if I am shown why it can't be done
just telling me no never cuts it for me!!!
More than once or twice in our lives, we have worked with a 'CAN'T KEEPER' and had them go away and do some exploring and thinking outside the box.
ON EVERY OCCASION, SAID KEEPER HAS COME BACK WITH A SMILE ON HER FACE AND A SOLUTION!!!!
Carers, on the other-hand, need to not accept the initial negative response and learn to dig for the 'YES'. They also need to work WITH the Keeper to achieve the positive end result, not expect the keeper to do all the work.
Learning to respect each other and trust each other will build amazing rapport. Once we have these foundations in place - even if we don't get more money, we will have more pleasant lives, as we won't have to waste so much energy in negative space and everyone in the disability field will have a common respect & trust.
"Creating a mindshift from
SCARCITY TO ABUNDANCE,
allows good things to happen"
Soooo, let me finish the same way I did at ASID.....
iDareU to shift your mindset and get onboard the IDareU train of doing DISABILITY DIFFERENTLY!!!!!!
So, the first Tuesday in November has come and the Race that stops a Nation (The Aussie nation) has been run & won. I LOVE this day...I come from horse-racing stock, so I must confess, I love the races, thought I only take notice on that ONE DAY IN NOVEMBER these days. I LOVE the glam and the glitz associated with the day and I LOVE there is,
"more often than not a great story attached to the winner of the Great Race"
This year was no different, with the first woman jockey winning and her brother who has Down syndrome being her strapper.
The thing I LOVED most about this story is the very obvious bond and love they have for each other, this and his sis clearly have an amazing love and respect for each other and I LOVED that Michelle Payne just treated Stevie as her brother...not her brother with Ds.
It is something very special to observe the deep, deep love between siblings and I have found that when one has a disability, that connection seems to be even stronger in most cases.
It is also very special because the sibs don't see the disability, they just see the person and accept them as they are, lock, stock & barrel!!!
AND I LOVE that Stevie just took the whole amazing experience (it's not every day some-one is responsible for the winner of the Melbourne Cup) in his stride...though the grin on his face at the end of the race was worth bottling!!!
This is one example of people with Down syndrome being able to achieve their dreams and be a very important and valuable contributor to society.
There has been much ado about Stevie having Ds, and he is a bit of a superstar at the moment (and so he should be), but I see people with Ds, achieving their dreams regularly.
We have the young model who has taken the internet by storm.
We have the young lad who is an famous photographer.
There are people everywhere just doing what regular people do, working, playing...Just doing what regular people do...when given a chance.
For many years, I was a mentor to teens who had a rough start in life and I LOVED watching them fly when they were given some space, faith & opportunities. It is the same with people with disabilities, given a chance, they will achieve and reach their dreams.
AND THAT FOR ME IS A TRUE LOVE STORY!!
No, not a breed of dog,
it is a trait many people who have
intellectual disabilities have.
I remember when Miss Chloe was born, all the nurses said:
"Oh, these children LOOOVVE routine, they thrive on it".
I was terrified, as routine was not something I aspired to, being a bit of a free spirit.
When I mentioned this to one of the nurses. she commented that
"No routine will be Chloes' routine".
At the risk of sounding controversial (again), I need to say: "
I believe advising frightened new parents of a baby with a disability to create good strong routines, so your baby can thrive", is not a responsible action!
Yes, they may thrive and get VERY comfortable in these set routines BUT what happens when the inevitable happens and that routine needs to be changed for whatever reason.
You can only get a specialist appointment at the same time as Jane's morning tea. Good luck in getting Jane to that appointment without a fuss!!
Because the world can be a very overwhelming place for many people with disabilities, they like to create 'safe havens'. Now there is nothing wrong with these 'Safe Havens', as long as they don't live in them. They need to venture out into the unknown and stretch themselves and get more competent in living a whole life, then retreat into the Safe Haven for refresh time and to gather their straighten.
A few easy ways of not creating set routines
is to mix up times for bathing, eating,
shopping etc.
When asked by your loved one:'Whats for dinner", at breakfast time, reply with:
"You will find out tonight".
I have taught Chloe to trust me when we are on holidays. This was a conscious and challenging process but the rewards have been endless...
culminating in road trips in foreign countries.
For the full story of how I achieved this, read my book:
REMOVING THE FEAR OF RAISING A CHILD WITH DOWN SYNDROME - WAISING MISS CHLOE.
I noticed with Chloe that she would try to enforce her own routines and if I wasn't alert with her, I would find myself automatically going along with them.
I don't know about anyone else, but I have had to become very awake in my journey as the parent of a child with special needs!!!
I have learnt the things our loved ones can learn are endless, BUT we have to teach them AND we can't unteach them.
BE VERY CAREFUL NOT TO TEACH THEM ROUTINES THAT WILL IMPRISON YOU ALL IN LATER YEARS.
