And so this is Christmas...

What should I buy?...
It is that time of the year again?
That went waaaay too quick!

Are you one of those people who have trouble buying for your loved one with a disability at Christmas? 

Or worse, having to give suggestions to grandparents and others?

Here is a few tips:

Purchase gifts around what skills your loved one may be learning at the time, such as;

Cooking     

• Cook Books
• Cooking tools, such as; measuring cups, electric beaters, customised equipment for those with limited motor skills, baking tools, knife sets that are safe for learners
• Cooking kits; groovy sets with all the ingredients to just put together, cup cake and slice mixes and decorations
• The list is endless.

NB: Give them their own cupboard for their equipment

Gardening

• Gardening tools such as; rakes, shovels or basic equipment like gloves or a water can
• Easy growing plants such as; herbs or pot based vegetables.

Empower through experiences:

Either something they love doing like:

• A footie membership
• Train rides to country
• Going to live theatre
• Concerts
• Gold pass movie tickets
• Attending a chocolate cooking class ( or any other cooking class).

Or things they may never have experienced like:

• Yarra river boat cruise
• Hot air ballooning
• High tea.

TIPS:

• Make the most of the companion card ( if they have one)
• Actively use your free rural/regional train travel with the pension card
• Sign up to Living Social or Scoopon Daily deals ( there are many daily deals sites), these have great experiences at great prices
• Get a few people to go in for a bigger present.

Here is hoping these ideas are helpfu!

Wishing everyone a wonderful and peaceful Christmas 2017, from all at iDareU.

   



 

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.

Saved from pinterest/followpics.net

Carer Tips - Language Please.....

One of the biggest divides between disability service providers or organisations and people with a disability and their families, is the language used by professionals.

Goodness, some conferences even have presentations advertised as 'easy english'.

Here are a few things that need to be investigated if we want to make the disability sector vibrant, open and easy to navigate.

1. When you don't think something is possible, don't default to no, suggest you are not sure, but will find out and follow up 
2. Privacy, workplace health & safety and lately NDIS, are unacceptable excuses for not working with or for a clients needs
3. Never, ever, use acronyms without explaining what it means, 90% of our clients have no idea. We do not want to look incompetent by saying so, please just dont use them
4. When writing letters or emails, remember your clients like short, simple and clear messaging.

NOT THIS!!!!!

A letter written to all the perspective participants going into the NDIS!
And what are they really saying......

" We are sorry, but due to higher demand then expected, the NDIS roll out will take longer. We are sorry for any inconvenience"

Well that's what we THINK they are trying to say. This letter has one sentence with 58 words in it, a little too much to read I believe.

The very scary issue is; if this is the type of communication from the NDIS which believe is acceptable, why should other disability service providers or organisations change their language?

NDIS needs to lead by example and break the cycle of unclear and complex language.

The very best way to create inclusive language is to deliver a message for all types of communication levels, from a school year 9 through to sitting in the pub or other social gathering with your friends.

Bring THAT language into all communications with participants and families of people with a disability.

Great communication can melt away barriers, encourage positive interactions and end in a much more constructive result!

The importance of Charity Membership

Membership is so much more.

There are many upsides to membership and very few downsides.

One of the big benefits is feeling a part of something bigger than yourself. If a person believes in something or is passionate about something, becoming a member is a great way to walk that passion.

Becoming a member of iDareU, for example, is very exciting as this is a vibrant and passionate organisation. Membership is for everyone, as our mission to create natural inclusion for families with disability and becoming a vital part of their local communities.

Membership is seen as a commitment, but it is often not a  huge commitment. There is a cost and you have the ability to have a say in the direction of the organisation, at the AGM or by becoming a board member. These are by no means compulsory, though.

The most important things about becoming a member are:

• a sense of belonging and purpose

• satisfaction from knowing that you are making a bigger difference

• access to membership information and portal

• discounted products and training

• helping iDareU reach their goal of natural inclusion.

If iDareU is not the charity for you to become a member of, please consider one that would align with your vision and purpose and become a member. Whatever you do, become a member and support a community of like-minded people.

Go to: http://idareu.org.au/ to join 

Carer Tips - Prepare early for independance

We all want our children to be independent (not dependent upon us). It is most parents biggest dream AND fear.

Sadly, although many dream of this, not as many actually implement strategies to teach and maintain the taught practices to their person with a disability.

There seems to be a belief that they will do everything for this person and one day, they will just morph and become totally independent!!!!

Intellectually no-one believes this BUT in reality, this is what happens time and time again.

Below are some tips, if this sounds like you, but you have no idea where to start:

• Start early: Start as early as possible, ensure the task is suited to age. Instead of asking what your two years old would like to have read to them, show them a book in each hand & give them the choice of 2
• Build confidence; As they get older and conquer the required task, add another & another, don't stop, because they can have archived one thing
• Goal setting; Set 2 - 4 goals per year to be taught
• Empower; STOP being their mouth piece. Every time you speak for them, you are telling them they are not important.
• Priorities; HOW IMPORTANT IS IT? Is it really a major disaster if the clothes are not pegged properly?
• Teach; the old-fashioned things; like washing up and drying the dishes. Even if you have a dishwasher. It the skills you are teaching - not the convenience
• Communicate; Teach from the level they understand; not try to get them to understand you, use short sentences and only 1 or 2 instructions at a time.

Over time this becomes a complete task, achieved by them with your support.

This is just the tip of the iceberg. Next blog will be more tips towards independence.

Meanwhile pop over to the iDareU website & check out what is going on

http://www.idareu.org.au/

Carer Tips - going the distance better!

When a loved one is first diagnosed with a disability, people tend to go into shock for a while. From there, it is full steam ahead, as they madly chase around to find the very best outcomes for the person. Many carers remain in this mode and even when things are calmer, they find things to keep them at the crisis-driven, edge tipping point.

This way of living is unsustainable over a long period of time.

The direct results are Carer burnout, not being able to cope with unexpected issues, mental illness, isolation, relationship breakdown and many other uglies.

Being an unpaid carer is NOT a sprint, it really is a marathon and people need to learn to pace themselves to ensure a good quality of life.

Here are some simple tips to assist with finding and keeping balance in your lives

When things are not in crisis, relax 

This is the time to recharge your batteries. Have a long walk, or bath, or read a book or anything else you find pleasurable. The housework and other non-urgent things will keep.
Many people find themselves playing housework catch-up when their loved one goes to respite instead of relaxing.

Restoring your energy is more important than a clean house!!!

Create a sustainable plan

NDIS has come or is coming. Ensure your plan is not just a crisis avoidance plan. That is how you live now. The plan needs to be looking at sustainable and healthy living for all. This is the only way for Australia to save money in the long run.

Allow and ask for help

Being all to everyone ensures we will burnout. It is not a natural way for any relationships. Give your loved ones your best and outsource the rest. This way, you are able to enjoy the people closest to you and not be caught with those ugly friends called: RESENTMENT & GUILT.
Don't assume people will say no. If you don't ask the answer is guaranteed to be NO. If you ask, you have a 50% chance the answer will be YES...

Remember the gift of giving. 

Don't deny others the opportunity to give to you and your family, as you are denying them a precious gift.

Laugh & Meditate

Two very simple, yet effective ways to help yourself and give you more energy and reduce your mental stress. Yes, you DO have time....you don't have time NOT to do these things.
Meditation need only be 15 min a day to start with...in the shower, if need be.

Go on - give it a go......


iDareU has teamed with some amazing people to bring you a host of  Living Well - Taking Care of ME workshops.

Go to this link and see if anything strikes a cord with you. If it doesn't strike a cord - sign up for the Carer Kit one anyway, you may need a kick start...

http://www.idareu.org.au/happenings.html

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