Wishing Everyone a very Merry Christmas

The thing I love most about Australia is our diversity.

 
I am certainly not an original Australian but I am the seventh generation. So my family settled here close to the beginning of European settlement.

I find it very sad that for whatever reason our world is going backwards when it comes to tolerance of other peoples differences.

It seems in recent times, in Australia, we are trying to become everything to everyone.

It started to creep in when councils decided not to put up Christmas decorations for fear of offending some-one and schools decided to stop singing Christmas carols for the same reason. I don't know about anyone else, but for me, I embrace other peoples beliefs (as long as they don't hurt anyone). It has never entered my head to be offended when in Buddhist countries to be offended by their customs, or in Utah where Mormons are a majority. I love listening to the call to prayers in Muslim countries, yet I am not a follower of any of these.

"I AM a follower of respecting everyone's right to have whatever beliefs they desire and to embrace their love of their culture. I actually think I am a pretty mainstream thinker with this attitude - yes, I tend to see the good in people as a whole."

So if most people embrace the cultural practices WHY does Australian people in high places and people-pleasers think it is a good idea to abandon or alter the time honoured practices of this nation??

There is a saying around the ridges:

If you try to please everyone ALL the time,
You end up pleasing NO-ONE

So lets get rid of the political guilt and just celebrate Christmas, Easter and any other Christian celebration we choose.

But more importantly, let us all begin TODAY to view each & every one of us as people first and lose the intolerance. IMAGINE what type of world we would have if everyone learnt' a little about all our differences. We would get to know to person & ally many of our fears & distrust. WHAT A GIFT!!!

Let me leave you with this message.

LET IT BEGIN WITH ME - do for others what you would like done to you.
What a wonderful world it would be!

iDareU - Dreams CAN become reality

Inspiring people with Disabilities through Awareness, Resources, Empowerment and Unity.

I had a dream to give people who have a child with a disability or have a disability

empowerment, dignity and inspiration.

For whatever reason, these are some of the things that are taken from us when we find ourselves in one or the other (or both ) of the above situations.
 
As a parent of one such person, I was (and still am) amazed by the way we are often disregarded and undervalued by the very people who are meant to be helping us.

I am not one to be put into a little box and told to conform. And this has been a blessing to our family. I have found if you can find the effort to dig past the initial resistance to get the services/opportunities you require, the organisations will bend to your needs.

I am a person with a lot of passion and energy. Because of this, I want to help those less able to be shown how to 'Step into their own Light' and become empowered.

So, after writing a book about raising Miss Chloe, I took it upon myself to setup a charity.

Today all the steep learning of creating a charity and with an amazingly talented board to support my dream it became a reality.

One day, people with disabilities and their loved ones will stand tall and not need to beg or apologise for wanting a good life...a life they deserve.


Please check out the BRAND NEW www.idareu.org.au website and get onboard.

Being a part of the Community

RESEARCH SHOWS THAT 30% OF PEOPLE 

DON'T TRUST THEIR NEIGHBORS.

Now the fact is, 30% of the population are NOT untrustworthy 
its just that we don't know who our neighbors are so we feel we can't trust them!!!!

I don't know if it is because I come from the Aussie bush where houses are few and far between and kangaroos are a plenty, but I am very much into creating my own village of support.

Growing up, we had to make an effort to have any type of social life. The nearest community hall was 20 kms away and the nearest town was 80 kms away, so when we socialised, we made sure it was worth it!

I also learn't that when there is not much choice with whom you can socialise with, you adaptd to what there is, and become more tolerant of others and their differences.

Being so isolated, we needed to lean on each other in times of crisis or illness or hardship.
This was very strong in times of droughts. We were all in the same predicament and we needed to really work with each other for the sake of keeping our community strong.


It is very easy at times of hardship, illness, tragedy or disability to isolate and get it in our heads that this is OUR lot in life and we can't burden anyone else. We just have to put our heads down and get on with what we have been dealt.

Now whilst I agree, we can only work with what we have been dealt, I have learn't there are 2 ways to achieve this: 1) the very hard way 2) the less hard way.

Yes, I am not going to say there is an easy way because many a time that is not really an option BUT we can do it much easier when we become a part of a community that looks out for us.

From when I first moved into our nearest town and then onto the very big smoke (Melbourne), I have always made the effort to not just introduce myself to ALL my neighbours, but to develop a relationship with them. I have very been in the same social circles, but have always stopped for a chat, given them Chrissy cards, invited them to BBQs...you get the picture.

I am so grateful this was the norm for me when I had Chloe. I was sooo overwhelmed with everything in those first months, I didn't have an ounce left to give to making new connections. It didn't matter because the connections were already in place and I was supported in my local environments.

We have moved twice since then and each time, I have made it a point to get to know ALL my neighbours, shop locally and involve ourselves in our local environment with our recreation.

This has produced the most amazing results for us. Chloe has become an entrenched part of this environment and they all just see Chloe NOT "Chloe - the disabled one".

AND I have received bucket loads of free support from people and businesses who care about us as people. I know this isn't just luck, as both moves have been into very different areas, with one of them living on a very busy main road.

It works, because  I make it work and although there is a bit of extra effort in the beginning, once everything is in place, the rewards are substantial!!!

iDareU will be having workshops starting in Feb in Melbourne to teach people how to create their own villages and maintain them. If you are interested in making your lives more enjoyable and getting the added benefit of free support, come along and learn how!!

 

Visit idareu.org.au or phone our hotline on 0468854186

to find out how you can get onboard.

A mindshift to create a Solution

 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!!!!!!

www.suedymond.com

A story of love.

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!!

www.suedymond.com

The Routine Setter

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.

www.suedymond.com

 

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.

suedymond.com

Caring for the Carer

 For 1 week out of 52 weeks in the year, Carers are allowed to give themselves permission to do something nice for themselves. 

Carers Week has just passed in Australia and Councils and other organizations arrange outings and lunches to celebrate these unsung heros of our society, and that is great.. 
But...

If we were waiting for the one week of the year to look after ourselves, we would land in a sorry mess rather quickly. Sadly, though, this is the state a lot of carers find themselves...just managing to focus on the loved one and getting the job at hand done to the best of their ability and not having any energy left to care for themselves.

There is a very good reason we are asked to place our oxygen masks on first, before helping others on a plane. It is because if we are no good for ourselves, we are no good for anyone! 

Caring for a loved one with a disability is not for sprinters, it is a true marathon and we really need to pace ourselves and keep ourselves as strong as we can, physically, mentally, emotionally and spiritually.

In my book: 'Waising Miss Chloe', I dedicate an entire chapter to self-care & time out.And  In this blog, I am going a share a few of the ideas with you all.

Self-care and time out do not need to be time consuming or expensive. Although I do think it is nice - every now & then to treat yourself to something special. I have learnt in life that is actually MY JOB to ensure these 2 things are covered. If I am relying or expecting someone else to step up & provide me with the time out or self care, I could be very disappointed.

The very easiest way to do some (except when you are under the pump) time out, is to remember to breathe...Silly you may think...of course you breathe...be when we are stressed, our breathing becomes very shallow and this induces more stress.



The breathing I am talking about is conscious, deep, slow breathing. Once your breathing slows down, you become less tense and are able to manage things better.

Daily meditation is a great tool as well...nooo, you don't have to sit lotus style ummming for hours on end, if that is not your style. Just sit in a comfy seat, with a guided detestation for 10 minutes to begin with and wortk your way up to half an hour.

Go for a walk on your own, with a friend or the dog, if your dog is a good walker. Remember, this time is time out...so a stressful dog walk is for a different time.











I LOVE a bubble bath, with candles!



When I am in the car alone, I put MY music on or I listen to a talking tape, that way I enjoy the journey & arrive feeling more refreshed.

Watch a comedy show on TV...laughter is an amazing stress release & wonderful for time out.

Go for a nice drive ( and use some of that music I mentioned above). Country markets, seaside, a lake...there are many beautiful places to go for time out.

If you have a partner make sure you have regular date nights (mark them on the calendar)...where children talk is off-limits!

These are but a few suggestions, there are many, many more....what will your self-care program look like??

Something else I have learnt to be very aware of is H.A.L.T.S mode.

H - Hungry
A - Anxious/Angry
L - Lonely
T - Tired
S - Sick

If life seems to be getting on top of me more then usual, I stop and do this check list. 

If I am hungry, I eat...tired, I rest & any of the others I look after myself and try to be kind to me till it has passed.

There is nothing wrong with asking for time out & doing self care...in fact it is vital when you have an demanding role as being a carer can be.

AND IT IS UP TO YOU TO ENSURE THESE NEEDS ARE BEING MET!!!

Take time out and start enjoying life....

Purchase my book, click the link below, and get some more great hints and tips.

www.suedymond.com

Are you “plan ready” for NDIS?

Moving away from
'Burnt Toast' Syndrome

For the past few years, the buzz word in the disability world, has been NDIS in Australia.

You would think NDIS was some great white horse, coming to sweep people with disabilities and their families up and out of the challenges and scarcity or today and onto a fluffy white cloud of abundance and peace. (insert unicorn and rainbows here -->)
 
And even though we are having all these trials, it seem a few things are being left behind or overlooked completely.

1)  We DESPERATELY need a permanent card for people with permanent disabilities,
this I spoke about in a previous blog (Cards on the Table)

2)  Its great that the power is being given back to clients and their families  BUT many of them have no idea how to ask for what they want.

In the past, this group of people have been forced to accept whatever comes their way and to not make a fuss, in case they are noticed and that smattering of help gets whisked away.

They sure were not game to ask services for what they needed. 
 You see, disability in Australia has ALWAYS been Service Focused. This means, services are given a block of money to provide services for their clients. They set their programs or services then get the clients. The said clients then get told what the service provides, and how often they will provide this wonderful service.

There is no flexibility and you are reminded over & over again that if you are not happy, there are many on a wait list who would LOVE your place...so...even though this service  doesn't work for you, you learn to adjust yours & your families lives to fit into it. (eat your burnt toast and enjoy it)

After all, when you have spent hours & hours having to fill in copious amount of paper work - right down sometimes to 'What words does your child say', AND HAD TO HIGHLIGHT EVERY SINGLE DEFECT YOUR LOVED ONE HAS... You are not keen to face having to repeat this process somewhere else. So, you learn to be very quite and just fit in and don't rock any boats. I call this Burnt Toast Syndrome





 


Now they turn around and tell us NDIS is all about US taking control and TELLING the services what WE WANT!!!!!

AND they are providing short courses for people to learn to become  PLANNERS. 
HOW EXCITING!!!  Or is it.....Planners are the people who sit with you and work out a plan for the need of the person with a disability. 



Many of the people they will be working with are the EXACT group who have been taught Burnt Toast Syndrome. These people have no idea where to start...but all of a sudden, they are being told to sit down & tell us what your loved one will need for the rest of their lives?

You will recognise them....they are wandering around looking like they have been struck in the headlights of a fast on-coming car, muttering NDIS NDIS NDIS ... 

We need to help this group get PLAN READY.

These people need to learn to imagine better & remember what it feels like to dream again.
These people need to learn how to get an advocate to do the negative speak for their loved ones & start only focusing on their positives...just like parents of non-disabled children do!!!

NEVER MIND EMPOWERMENT TO PEOPLE WITH DISABILITIES - LETS ALSO GET EMPOWERMENT FOR THE CARERS!!!!

Contact me at: connect@idareu.org.au if you'd like me to do a workshop around getting carers to 'IMAGINE BETTER & BE PLAN READY' 

www.suedymond.com.au