Carers are not machines

With the advent of the NDIS, it seems the unpaid carers are not being recognised to their vital role in caring for their loved one.
The NDIS is all about the person with the disability and their needs and this is a good thing.
To begin with, the planners and NDIA didn't take the welfare and well being of unpaid carers into account at all.
They realised, rather quickly that if they do not look after this group, people with disabilities are going to cost Australia millions more then it is now, due to carers not being able to manage or cope.

In saying this, unpaid carers are treated like machines....

• No you are not entitled to timeout from your duties as a carer...
• What do you mean, you need  time with your other family members?
• Why should you have down time for yourself?
• Of course you can't have a holiday without our loved one with a disability.....
• You are lucky you get anything.......

And the list goes on........

I find it interesting how many people leave the industry after a certain amount of years, due to carer burnout, yet they don't truly get that unpaid carers don't have the  luxury of leaving in spite having carer burnout ( unless they relinquish their loved one).

 Isn't it time the unpaid carers are truly recognised and rewarded for what they do for this country?

Isn't it time the carers are included as part of the solution - not seen as part of the problem?

Even machines break down, if they are not well maintained

If the NDIS & Governments continue to only pay lip service to the unpaid carers, the NDIS will go from a preventative program to a crisis program very quickly and we are back to the dirty old system we had before. But worse, because we spent all this money on the NDIS to have..the same old, same old...

We need to ensure the carers are well supported whilst carrying out their selfless duties

www.idareu.org.au

We all need time with our mob

Have you ever noticed how sometimes, out of the blue, we feel a need to contact someone - a family member or an old friend; attend an activity or an event, which simply makes us feel good for no reason other than it just does?

Humans are known to be creatures of a pack and so by nature, we don’t operate well in isolation.

The emergence of NDIS, seems to have created a tendency for one-on-one (individual) support, where a person with a disability is being taken out from their group setting to receive one-on-one support instead.

Don't get me wrong here, one-on-one support is wonderful and many people with disabilities can learn quicker, have access to the community around them easily and, with more dignity when receiving this type of assistance.  There is also the benefit of more flexibility as activities can be tailored to a person’s needs and passions.

However, the biggest problem with one-on-one support is the tendency for isolation to creep in, as there is no avenue for interaction with like-minded people.  This lack of interaction, makes it difficult for such individuals to develop socialising etiquette with others, namely members of the public, and could eventually cause mental health problems.

I tend to see it as spending time with their 'mob'.  We all know there is just something about this that makes people feel wholesome including people with disabilities.  They don't have to be with their 'mob' all the time and it doesn't have to make sense to anyone else...but they do need this time.  Be it once a week, thrice a week, or even once a month.......

We often hear from families with intellectually disabled children, that one of the issues their children face when attending mainstream schools, is difficulty in making ‘real’ friends among their peers.  We need to find a way to give these children an opportunity to spend time with their 'mob' and create a sense of belonging among them.

Chloe Dymond has a candid way of introducing herself when asked where she is from - she always responds saying she 'Comes from Down Syndrome'.  I simply love this phrase, as I think it gives her that sense of belonging, and I visualise “Down Syndrome” as just being another country, with people of different views and cultural backgrounds.  Similar to how many immigrants build a sense of belonging through community centres that reflect their ethnic origins and have a tendency to gravitate to suburbs where people from their country of origin  tend to reside.

Chloe needs to spend time with people from her ‘country’ to feel connected to the world.

I hope the NDIS does not take away these people’s opportunity to 'recharge their batteries' with their mob and further reduce opportunities for the general public to engage with people with disabilities, and learn from them.  Collectively, families who have people with disabilities, need to work together to create a healthy lifestyle balance, for the people we care about, as well as play our role in educating others on creating an inclusive society.

www.idareu.org.au

Dear Doctors, ENOUGH!!!!

This is a letter from my book 'Removing the Fear of Raising a Child with Down Syndrome - Waising Miss Chloe' .Sadly, it is more relevant today than it was 4 years ago, with the advent of the Down Syndrome blood test imminent in Australia.

Please don't allow Australia, to go the way of Iceland and eliminate a group of people because..well no-one really knows why they have to be eliminated.

Open letter to Doctors and Obstetricians.

My name is Sue Dymond and I have a young adult daughter who has Down Syndrome.

Fortunately for me, her and all who know her, I was too young to have the amniocentesis when I was pregnant. I say fortunately, because when my baby had tested positive to Down Syndrome, I would have terminated the pregnancy. I wanted nothing to do with a disabled child and all the hard work I imagined went with that job.

If this had happened, I would have missed out on knowing one of the most pleasant, self-assured, calm and confident young women I have ever met.

I find it very, very sad in the 21^st century that there is still such a strong bias by the medical profession towards termination when Down Syndrome is detected prior to birth. It is very important that we are open-minded and give parents a balanced view of the positive and negative issues surrounding raising a child with Down syndrome.

NEVER ASSUME; not all parents want to terminate, and the reason many others do, is because it is painted as such a negative, unusually an incorrect outlook of theirs and their child’s life.

I can fully understand this attitude 30 or 40 years ago, but today, when there are so many young people in society with Down Syndrome proving to all around them that they are very capable of learning and being productive people in society. Admittedly they need some guidance and assistance, but I would love some one to tell me which child doesn’t?

An interesting statistic from an Australian survey conducted in Feburary 2013 by Sue Blandford, Down Syndrome Victoria, shows: 53.5% said their child's health had been mostly excellent since birth, my daughter is one of those statistics. 

This is over half of all babies born with Down Syndrome being healthy, so why are we advised to terminate on a less than 50% chance of having an unhealthy baby?

Yes, I found the first ten – twelve years hard work, with running around to lots of experts and professionals and teaching her basics, boundaries and consequences. I have to say though, the past ten years she has been a delight (well mainly).

She does volunteer work with Meals on Wheels, she helps an organisation feed the poor every second Tuesday, she has a black-belt in Karate and is a helper teacher. Yes, she still needs guidance and I imagine always will need some, due to her inability to manage unforeseen circumstances.

I was recently told by a friend that I have everything a parent would ever ask for with Chloe. I have a child who loves me and enjoys my company and visa versa. 

Our journey has had its challenges and will continue to, but isn’t that true of anyone who has children?

More than the challenges though, it has been rich with learning the important lessons in life – and some of those lessons are not true of anyone who has children. They are a gift to those who have a special needs person.

I ask the medical profession to please become more learned about what happens to people with Down Syndrome after they leave your care and then deliver the balanced information to parents who find out they are expecting a child with Down Syndrome.

As I mentioned at the top of this letter, the world would have been a way less rich place, if my choice had been different based on knowing that Chloe had Down Syndrome before she was born.

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Why should I pay?

This is a question I hear many times when we do our workshops. People want to know why they have to pay for the workshop and during the workshop they want to know why, with the NDIS, they will have to pay for everything. This is a direct result of the Government creating a welfare mentality within the disability sector as well as other vulnerable people sectors in this country.

Many of us send our loved ones off for the day and someone else pays for them to be there. The money doesn't pass through us - therefore people think it must be free. We pay $10 per hour to council for respite and think this is the total payment.

This is WRONG on both counts! Whenever something is free or cheap - it is because it is being paid for by someone else. We have no idea what the real cost is, so we assume what we see is the real cost.

There is a lot of nonsense floating around with the advent of the NDIS that everything is going to cost more. In reality, many things are going to be charged to us at the true cost. One of the advantages of the NDIS will be the transparency to the clients and their carers of charges and costings. This is powerful on many counts, including:

1. We know EXACTLY what something REALLY costs.
2. Money is just a manner of transfer of giving and receiving. A fair exchange.
3. We devalue people and the transaction when we expect something for nothing. Every person  deserves to be honoured.
4. We are always accountable to the organisation who is paying - they pay - we have to abide by their rules.
5. We respect and value things we have to pay for more than things that are given to us. We see this in our workshops - the workshops that are not free to participants (paid for by an organisation) ALWAYS have a much higher percentage of no-shows than the ones where the participant has to pay.
6. Giving people something for nothing tells these people they are not respected and removes dignity.

I was once asked where the $50 per person charged for a 5 hour workshop which included lunch, refreshments and resources goes! This was a very sad question, as $50 for any 5 hour workshop with the above is dirt cheap and is very obviously not making huge amounts of money, if any at all.

So the next time someone asks "why should I pay" my answer will be "because I value and respect myself and those I do transactions with".

IDareU

'Difficult' carers do not have permission to abuse our disabled loved ones!

I recently read a book titled: 'I've been good so far' by Joan Reid.

It is not an easy read, as it highlights the reluctance within disability land of anyone to protect our most vulnerable.

'Floss' has complex and challenging needs. She became too hard for her family when she was 13 years old and they put her into 'care'.

This book really shines a light on what happens in some of these so called community houses. And no, I am not saying all community houses are the same. I am saying, due to such tight budgets, there are a lot of places that hire people with very little or no experience to work with people with disabilities who have complex needs.

Poor Floss received so much shocking treatment in more than one of these houses, mainly due to her inability to carry out the tasks she was expected to without help. The other tenants loved ones wanted Floss out as a result of the welfare organisations finding it too hard to enforce things to keep her safe. And the services also decided her mum was difficult, therefore Floss' punishment was justified.

Floss endured many years of poor treatment. The book covers the period from 1981 until 2013, which means that 'the olden days' can't be used as an excuse.

I remember when Miss Chloe was around 12 years old, my regular carer was a way for 6 weeks and we were given a replacement during that time. I was very rigid with her bed time and explained to the carer that Chloe needed to be in bed at 8.30pm. For 3 weeks, I would arrive home at 10pm to find Chloe just going to bed (she had to be up for school at 6.30am). I was so frustrated that no matter how many times I told the carer she just would not listen. The carer would simply say 'She (Chloe) didn't want to go to bed', 'She (the carer) can't make her'... Blah, blah, blah.

I explained she (the carer) didn't have a choice. This woman was the paid adult and all she needed to do was tell Chloe at 8pm that is was 8.30pm and that she had ten minutes to be in bed. Chloe couldn't (and still can't) tell the time. This way, the carer was guaranteed that Chloe would be in bed by 8.30pm.

The carer didn't take any notice of this information, so the next morning when Miss Chloe got up she was very distressed telling herself she was a very bad girl and started hitting herself (Miss Chloe always self talks and acts out what people say and do to her).

Eventually I got the gist of what was happening. The carer had verbally and physically abused Chloe.
I notified my case-manager, who contacted the organisation the carer worked for. The response the case manager received was: "No we won't be following up because 'HER MOTHER IS VERY DIFFICULT, YOU KNOW'. Apparently it was OK to abuse someone if their mother was not the complimentary type and made life difficult for the organisation!

A lot of Floss' issues were exactly the same! Poor Floss was punished because her mum would not accept substandard treatment of Floss. And sadly, these are not isolated cases. I am often hearing of family members who are banned from visiting their loved ones in their residence because the families have complained, been concerned, or questioned things about the care their loved ones were receiving.

I hope and pray that the NDIS will make these organisations more accountable once they realise the concerned carers/families won't be trapped any more. I hope we will be able to have more flexibility around who cares for these very vulnerable people.


idareu.org.au

The Art of Giving

There are so many ways of giving. We can give our time, our love, presents, donate to causes...the list goes on.

But to me, the most generous and kindest way of giving is to give from the heart and to give unconditionally. This is not at all easy to do - although I am sure this is what we THINK we do.

I spent many years believing I retained some type of ownership over whatever it was I was giving to someone else. If I gave you a present, I would be really hurt if you:

a. Didn't like it
b. Gave it away
c. Threw it out

I would even be silly enough to ask if you liked it (expecting the answer to be yes). Please don't ask this question if you are at risk of being shattered.

A wise person once told me, "Sue, never ask the question you don't want to hear the answer to". So today I tend to say: "I hope you like it, but if you don't you are free to do as you please with it".

It totally removes my expectations and the receiver's sense of guilt.

This is also true of giving your love away. To be able to love unconditionally, we need to learn that it is not up to us to put conditions on that love. You know what I mean; 'If you love me, you would/wouldn't...' 'I love you but...' and any others you can fill in yourself. These are not words of love, they are words of emotional blackmail and are not at all loving.

If we are not comfortable we can tell them so, why ask if they could change? And if they don't change, then it is up to us to decide what we do - not continue to try to make them adjust! And yes, that is tough! But it is much tougher trying to mold someone to your requirements when they don't want to be that way.

Then we come the the gift of time - doing things for others. This is ONLY a true gift if you again have no expectations on the outcome and are doing it because you want to. If you find yourself resenting doing things for others, know you are not doing it for love. Love and resentment can't live in the same space. Or, even worse (I believe), is when someone does something for you, then they keep it to use as a lever or bargaining chip later on.

'Well, I looked after your child when they were sick, so you SHOULD lend me your car.'

'Remember when I came and picked you up from the city? Don't get angry at me for forgetting to pick up the child from kinder.' 

And many more...

To truly give from the heart, we must give with an open hand, not a clenched fist. Once it leaves our hand, it is no longer ours. We can no longer decide how it can be used or what happens with it. It has become the receivers gift to accept and all we can do is pray that they receive it with the same loving intention it was given with.

It is very freeing to give with an open heart and hand and it allows us to 

                                                  rejoice in the art of giving.


iDareU

The NDIS Rollout – More than an inconvenience for too many

As anyone who reads my blogs knows, I am a massive fan of the National Disability Insurance Scheme (NDIS) – once it is rolled out and working properly.

What you may not be aware of is that I am extremely nervous about the journey in getting to that point.

I regularly mention in the Imagine Better workshop that I see the process of the NDIS as a long renovation that will produce a much better product than it was before the renovation. And like with any renovation, we are going to have to put up with the mess and inconvenience whilst the renovations are happening.

What I failed to mention is that whilst we are being inconvenienced, we still have a roof over our heads and we are not in any danger of falling off the edge.

Since the introduction of the roll out of the NDIS I have heard some frightening things that are happening, including:

• A 15km limit on the distance you are allowed to travel to get a service and that service providers are allowed to travel to a client.
• Services being removed from a person before the NDIS is in place – leaving people with nothing.
• Inexperienced planners preparing incorrect plans and people being left out in the cold with nothing and nowhere to go to get help or answers.
• Making self-management of the funds so convoluted and paperwork heavy that no client can navigate them.

Although there is a phone number you can call, unfortunately I know from experience that the wait on hold time is insane. I was on hold for 96 minutes and in the end I gave up!

I seriously hope these are isolated issues that are being resolved very quickly, as they are completely unacceptable.

If even a few of these issues are true, many people are going to be tipped over the edge and there will be many more bushfires to put out in the disability community. There are already so many vulnerable people trying to keep it together, it really won’t take much to have them lose their grip on that tiny piece of string that barely holds them together.

I have a dream that the NDIS will be the end of a crisis to crisis driven industry – as the current system is. We are not helped until there is a crisis and because the crisis is being created by not helping those who just need a little bit of help, the crisis are not being managed, as there are too many that the system has created.

The NDIS is meant to be all about giving people with a disability the power to live their lives with dignity, empowerment and choice. It was conceived to remove the shackles of the antiquated system we have endured for far too many years.

As the Productivity Commission said in their report: ‘The system in place now is so broken it needs to be thrown out and completely started again.' Hence the introduction of the NDIS.

Please don’t make this a repeat of the old system with even more pain. People with a disability and their carers deserve more than the scrap heap. We deserve a safety net to be put in place to ensure we are not worse off whilst this mess is sorted out.

Come on powers that be, get working on a transition with dignity – because we certainly deserve it!

iDareU.org

Burnt Toast Syndrome

I  have 2 pieces of toast  - one in each hand. In one hand I have a beautiful golden brown piece. The smell reminds me of a cosy family kitchen. In the other hand, I hold something you find in the bottom of a camp fire - burnt toast. Which one would you choose?

Let me add something to this scenario: these are the only 2 pieces of bread left in the house and you don’t get paid until tomorrow. Your child is waiting for breakfast. Which one do you choose now?

Burnt Toast Syndrome is more prevalent in women than men, but men, you need to listen up, because what you are about to hear and learn will be one of the keys to a happy life.

When a woman is on the labour table having her baby, something else arrives with that precious parcel. And once this bundle of joy is placed in our arms, we hear ourselves promising we will protect them from harm and pain -  no matter what. The love is so enormous that they become the most important thing in our lives. And so begins our burnt toast journey.

‘It doesn’t matter that I am so tired I can’t function I have to because my baby is calling me and I must go’.

'It’s fine that my dinner is cold, I have to tend my children first, and make sure they are all happy.'

'Oh, I missed lunch. Never mind, at least I was able to drop everything I was doing to ensure my darling got to her party.' The list goes on and on and on.

Although we take this role on, we are also getting a little bitter at YOU lads and eventually our children:

'A little thanks would be nice.'

'Don’t you see what I do for you?'

'It would be nice if you could do something to help.'

'Why don't you ever do anything nice for me?'

And that list also goes on.

I am here to tell you why they don’t tend to that list. The reason is that we have shown them with our actions that we don’t consider ourselves worthy of anything other than crumbs. We show our offspring that we will do anything for them – no matter what - and they have no idea that what we are doing for them is what we call sacrifice! They don’t know to be appreciative because that is all they have ever known!

Often if our partner does notice what is happening and dares to ask if he can help, we shoot him down, telling him “It’s easier to do it myself, by the time I explain everything to you, I could have done it myself.”

I am here to tell anyone who suffers from ‘Burnt Toast Syndrome’ that you need to wean yourself off it. The saying: ‘If we are no good for us - we are no good for anyone' is spot on!

When I spend too much time in Burnt Toast land, I find myself getting really resentful.  If I am resentful and feeling sorry for myself, my loved ones whinge at everything and I have more misery! So I have to stop! Yes, I love my children to the moon and back but I love myself even more!

Now if there is only 1 piece of toast left – I get my loved ones to share. I eat a hot meal and have found the world doesn’t end when my loved ones are forced to wait. Instead, they see me treating myself with kindness and dignity and that is what I get back from them in return. I accept help – even if I have to take the time to explain. I have also figured out that my right way isn't the only right way!

So to all the people here that suffer from burnt toast syndrome – it's time to start looking after the most important person in your life, and showing others that you value yourself, so they, in turn can value you.

And to the partners (or partners to be), you can assist by offering to do things that allow your loved one to be valued. Their no is not an option. When we learn to share the burdens and to say ‘I am worth it', we never accept Burnt Toast again!

And I need to finish with: I am worth it and so are you!

iDareU

Businesses: get disability friendly!

Yesterday in Carlton (Melbourne) seemed to be one of those bazaar days when Chloe was invisible to everyone else except me!

We decided to visit one of our favourite and very well known food places in Carlton. Miss Chloe had completed her lovely lunch and decided she wanted an ice-cream. There were a couple of people at the counter waiting to be served, so she waited politely and patiently for her turn. These people were served and left while the girl behind the counter completely ignored Chloe. She started serving people who had arrived at the counter well after Chloe.

I watched for a while – very unimpressed. I asked one to the lads on the floor if I could speak to the person in charge. He informed me that no-one was in charge. He asked what the problem was and I explained that my daughter was being ignored. I looked towards the ice-cream counter and the girl behind the counter was starting at us, with a very nasty look on her face (she still hadn’t served or asked Chloe if she was being looked after).

More people came to be served and she asked what they would like, in the end Chloe spoke up and asked for a mint ice-cream in a cup. The girl proceeded in putting the ice-cream in the cup, meanwhile Chloe had moved along the counter and said she also wanted cookies and cream (two flavours). Well this young lass continued to just put mint into the cup until a man (a complete stranger) beside Chloe told the lady behind that counter that Chloe was actually asking for two flavours. The lass then gave Chloe what she wanted AND THEN ASKED THE STRANGER if there was anything else he wanted!

Come on, this is 2016 - people with disabilities are actually living and being a part of our community, surely it is time businesses ensured their staff treated EVERYONE with dignity and respect and not make blind assumptions about them.

As we were leaving, we decided to go the shopping centre toilets. There was a large queue for the disabled toilet, as the ladies toilets were being cleaned. As Chloe was the only DISABLED person there, I moved her to the front of the line, no-one had a problem with this expect for the lady at the very front of the queue. As soon as the toilet door opened, she stepped around Chloe and disappeared into the disabled toilet - at the same time the cleaner re-opened the ladies toilets.

Chloe was standing outside the disabled toilet and as the very abled youngish woman came out, another woman walked up to her and asked her what her disability was. To which she replied, "I was before her". I'm sorry, but if there is a disabled person waiting to go to the disabled toilet - they have precedence over everyone else!

Surely in this day and age our communities are able to accommodate easily and comfortably people who are different and less abled?

Please, when doing customer service, instead of 'assuming some-one is just looking or can't speak or waiting for they mum/dad...ASK if they are right  - they may just be waiting to be served just like the person before them.....

Community Inclusion - The Norm

iDareU recently hosted a Community Fair. People with disabilities sold things they created alongside small businesses in the community and iDareU selling lots of amazing, pre-loved things.

We made a decision to not use the word 'inclusion' anywhere in the advertising. "WHY?" - I hear you ask. Inclusion needs to STOP being an announcement and needs to become so common and natural that no-one notices.

People who have a disability and their families live in a community of some sort. They are mainly in suburbs or towns or districts and co-habitat with everyone else. So WHY then do we need to make a fuss when people with a disability join with other members of their community to do something as normal as selling their goods (whether they make those goods themselves or source them)?

I loved the story from Dylan Alcott - Australian Open champion and quad wheelchair world No.1.
He tells of a well-meaning woman congratulating him on the way he smoothly transitioned from airplane seat to his chair. He found this a bizarre comment, as this is what he always does - his wheels are his legs. He lightly made the comment that he almost congratulated her on the way she made her way from her seat to a standing position to leave the plane.

People with a disability are not heroes because they do what comes naturally to them, they are just a normal person. A person who mainly lives in a diverse community and tries to make the most of what they have. The time has come for community to not only embrace people who are different but to just accept them and love their differences...whether they be disabled, immigrants, have different sexuality, whatever! A community that embraces diversity is indeed a much richer and more tolerant community then one that repels it!

So lets all make a concerted effort the next time we plan a community event to invite and include all involved in your community to participate, and to not make a huge song and dance about the fact you are being inclusive but be natural. This way we teach others to do the same.

Lets all be a part of making community inclusion the norm!

iDareU
Sue Dymond

The wind beneath my wings

I have recently been presenting workshops for Carers of people with disabilities. These interactive workshops are very casual, yet it amazes me that a large group of people can sit in a room and listen to someone speak for a couple of hours, then get up and leave without connecting with anyone else! However, when you ask people to introduce themselves and actually include everyone in the process of the workshop, the chatter with new friends in incessant!

There is a section where attendees can discuss their fears around their loved ones with a disability. They then have to come up with something to remove that fear. The astonishing thing about this exercise is that when people start discussing their fears, they realise they all have the same fears! And right up until this point - they thought they were the only ones, that they were weak or crazy for having such fears! All of a sudden a huge weight is lifted, as they realise they are normal and like everyone else. I don't believe there is anything more healing for the soul than to realise you are not alone on your journey and there are people like you that are willing to walk beside you.

The most important thing about a Community is talking to each other and finding out we are much more alike than different. I have previously spoken about becoming part of a greater local Community, but you should never underestimate the importance of becoming a part of our disability Community. I like to see this Community as my Tribe. My tribe does not have to have a loved one with Down syndrome, they just have to have a loved one with a disability to be able to connect with me on a very different level to someone who has never walked this path. These are the people I don't need to have my 'happy face' painted on for. These are the people who really GET IT when I say I just want to run away.

These are the people who are the wind beneath my wings. They help me fly, as well as allow me to grieve and even throw a tantrum.

THESE ARE PEOPLE WHO ALLOW ME TO BE ME and for that, I thank you!

Sue Dymond
iDareU

The Invisibility of Disability

Have you ever noticed when you are out shopping with your loved one who has a disability that retail or hospitality staff will ask YOU what THEY want?

Miss Chloe has always watched them to see whether I am going to speak for her AND if I do...she has ALWAYS contradicted me!! I spent a few years feeling guilty that I was 'wasting people's precious time' waiting for Chloe to get the words out. I also felt it was my job to not have them feel 'uncomfortable or embarrassed'  because they didn't understand her the first, second and sometimes third time.

I am so grateful for her tenacity because she taught it SHE WAS WORTH IT!

I was unconsciously telling her that strangers were worth more then her when I spoke for her or tired to hurry her up. It is a long time since she taught me this and every retail or hospitality person EVENTUALLY gets what she is saying and today, I see THAT as customer service. They are learning a great lesson in respect and patience as well.

So next time you speak for your child KNOW you are telling them you don't think they are capable.

I watch Chloe sometimes and it never ceases to amaze me when she is shopping or trying to buy something from a food court, how many times staff see straight through her! She is a polite person and will just keep standing there...waiting, waiting, waiting until eventually a customer will say; "I think you are next".

It is very sad that she (and others with a disability) are invisible to most of society where transactions take place. There seems to be this concept that they wouldn't know, so we will just wait for the carer/person with them to come and tell us what they want.

Chloe was asked to leave a bookshop once because the owner ASSUMED she was under 12 (she was 17). When asked why he didn't just ask how old she was, he looked at me with this look of shock...I really don't think he thought she could talk, so he didn't bother finding out.

We were at a market once in Melbourne and Chloe was buying a t-shirt. She was holding the t-shirt and was in front of me. I was talking to a friend and the stall holder leaned over Chloe and tapped me on the shoulder and asked if I needed anything.

Rather annoyed, I pretended I didn't know Chloe, pointed to her and her t-shirt and suggested it looked like SHE is the next customer!

I spend a lot of time pretending I don't know her and suggest SHE is the customer, so maybe they should ask her...

Another issue we have is the height of the benches in the food courts. They are so high, that even when the service person eventually sees Chloe, they can't understand her because there is so much glass between her and them on the other side. I also found this an issue when I had my stroke and was in a wheelchair.

Perhaps Customer Service staff need to be trained to never assume and maybe some clever inventor will create a disability-friendly way of making the retail and eating out experience more enjoyable for those who are not the generic size, shape or look!


www.idareu.org.au
www.suedymond.com

Let the Mountain come to you

Recently I was involved in a Regional Toastmasters competition where the standard of speeches was exceptionally high. However, there was one speech that really resonated with me and my life.

The speaker was speaking about mountain climbing and how he kept looking up to see how far he had to go or looking down to see how far up he was. He had a very experienced guide with him but there came a point where he was exhausted and KNEW he couldn't make it all the way to the top. The guide came over to him and quietly said;

"Just worry about your next step and when you have done that one, focus on the one after that. Before you know it, the mountain would have come to you."

WOW...what amazingly wise words. How many times in our lives do we look so far ahead, not noticing there are many steps to be taken before we reach there. Once we set our goal (whatever the goal may be), we need to come back to the now and just deal with the very next step. Every time I do this, I am amazed how easy the complete task has been when it is finished, one step at a time...

With Miss Chloe, I was so overwhelmed when she was born, worrying about what her life would be like when I was gone - I just wanted to hide. This has turned out to be a complete waste of time and energy. I have lost quite a few precious peaceful days worrying. The strange thing is, as every day passed and my little girl developed from a baby, into a girl and into a woman, I have realised that my mindset is nowhere near the place it was when she was born. And her life is wonderful and complete and she will manage exactly as she is supposed to!

Chloe loves her life and feels complete (yes, eventhough she has down syndrome - she doesn't see this as a big deal). She achieves many things that are just out of her capabilities AND she just focuses on the next step. She has had many mountains to overcome in her lifetime and I am sure there will be many more to come.

So, the next time you get an attack of the 'CAN'T or QUIT' just remember - the only thing you need to worry about is the next step, AND before you know it, your mountain would have come to you!

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www.suedymond.com

Many disabilities DON'T have a wheelchair

There seems to be this very strange practice creeping into society at the moment. It is also very disturbing!

People with disabilities are coming back to their cars to find rude notes attached to the windscreen.
They have been parked in a disability spot, they have a disability permit to park there and yet people are taking it upon themselves to write nasty little notes.
These notes are stating the obvious....You are not in a wheelchair.....blahblah…..

I have a couple of issues here and I would like to address these people who feel it is their civic right to behave in this manner.

1. SURPRISE!!!!!!! The wheelchair in the image is ONLY to let you know it is a DISABILITY car park...it is NOT A WHEELCHAIR ONLY car park!!! Therefore if a person is NOT in a wheelchair, please don't assume there is nothing wrong with them.
2. If you are that concerned, why don't you actually approach and ask the person (politely) if they have a disability??? Yes, a novel idea, I know…What? TALK to them and have the issue cleared up? It is much more powerful to assume the worst and leave a message on some vulnerable persons windscreen.  This is just a type of bullying - dressed up as doing your civic duty. If it really bothers you - speak to the person.

People who have a disability that can't be seen clearly have a hard enough time trying to navigate this complex world we live in. Perhaps a little kindness would be a good replacement for this type of behaviour.

It is the same with public toilets. Miss Chloe has a disability, but can walk. I can't tell you how many people give her dagger looks when she goes to the disabled toilet...
They believe the wheelchair sign means it is ONLY for people in a wheelchair.

It seems there needs to be a big campaign around re-educating society as to the meaning of the disability logo.

COME ON big advertising companies, how about you do a huge community service and create a funky ad around this concept?

iDareU to help make our most vulnerable and ill count.

PLEASE REMEMBER NOT ALL DISABILITIES INVOLVE A WHEELCHAIR. SHOW COMPASSION AND EMPATHY INSTEAD OF CONDEMNATION AND JUDGEMENT!!!

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Let them Flap till they Soar

iDareU recently hosted a workshop to assist carers of loved ones with a disability to become 'naturally' involved in their local community. I decided to eliminate all the 'YEAH BUTS' and other excuses why this can't be done at the beginning of the session. There wasn't one valid reason for not being involved in the local community.

The most interesting thing that came out of the workshop was that 'we' (the carers) are the biggest obstacle to allowing our loved ones to become involved in the local community. It's amazing how often we think we need to protect our children from the 'big bad world' and inadvertently make them dependent upon us. We just KNOW if we allow them to become travel trained they WILL be bullied or worse….We KNOW if the train isn't running, no-one will help our loved one...This is so sad…It is just as likely that the OPPOSITE will happen.

Miss Chloe has been out on her own in the community for approximately six years now and not once has she been bullied or ignored. In fact, she will go up to a person, hand them the phone and tell them her mum wants to speak to them. They will let me know the situation and then watch out for her and make sure she gets to the right place. Many times she has asked school kids....zero times have they treated her badly.

Now I'm not saying that bad things don't happen in the community…But I AM saying:

NOTHING CAN BE WORSE FOR US OR OUR LOVED ONES THAN KEEPING THEM WRAPPED IN COTTON WOOL AND NOT ALLOWING THEM TO LIVE!

Life is all about taking risks. Risk taking is how we grow, become empowered and gain self-esteem. Please don't take this powerful gift away from your children because you fear they CAN'T.... Or because you believe they need protecting from EVERYTHING. Get the local community on board and create a safety net, allowing your loved one to take risks and learn to fly.

A mother bird will push her baby bird out of the nest when it's time for her baby to become independent. They have no idea they can fly until they awkwardly flap their wings about - heading for the dirt. But they keep trying and before they crash, they get the flying thing worked out and they soar.

Isn't it time to let your loved one flap around and learn to soar?

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