CHILDREN TEACH US WHAT LIFE IS ALL ABOUT!

CHILDREN TEACH US WHAT LIFE IS ALL ABOUT!

"While we try to teach our children all about life, our children teach us what life is all about." Angela Schwindt.

As we come the end of another turbulent week, I ponder on today's results. My youngest had begun to settle at school. He was following the routine of the days, completing tasks that were required of him. He was happy and content.

On Tuesday afternoon we had a surprise 24 hour visit from his Dad. He was in transit to the northern end of Queensland. Knowing my boys would jump at any chance they got to spend time with him, we organised the afternoon for some quality "dad-play."

I knew my youngest would be confused by the fleeting visit.... but better than not at all. I would deal with the consequences. How bad could they be.... this was a positive opportunity.

Well...... this time the consequences were a little more damaging than anyone could have imagined. Maybe this is because my child is growing up. He absolutely adores his dad. I have spoken of their special bond before. He can provide something as a father that I can simply NOT as a parent.

After the smiles, giggles and play time.... goodbyes were said without too much stress and we continued with our daily routine. But since that afternoon, my son has been in complete distress. He has shut down his communication again. He is resistant at school, not eating, squealing and head-banging...every chance he gets. He has shown some jealousy traits when his aide tried to work with other children and his sleep patterns have once again been irregular.

Not wanting to see the obvious, his supports at school and I were trying to interpret his erratic behaviour. Is he testing limits again? / Is he getting sick? / Could he be tired from the lack of sleep? We all stepped up our commitments and energy levels to try and ensure he was settled and in routine. Sometimes that takes real effort to ensure everything runs like clockwork. I was organised and working extra hard with his meals, making sure I was crushing up all his Vitamin B and Taurine vitamins, Epsom salt baths, extra attention, signing, using more visual cues...organising the house hold to make certain he was eating at the right time, in bed and asleep at the right time, burning energy and exercising in the afternoon to release pressure from his muscles, massaging his body to help him relax at night. It is basically devoting yourself every minute to his needs.... this isn't ideal but I am under constant pressure to have him in the right frame of mind for school and learning.

After ensuring all this was happening, he continued to resist, head-bang and melt down at school. So next I thought we wait, until the storm is over and the calm seas return! 

Well.... all that extra hard work climaxed today in a massive melt-down of his emotional state of mind. All week he had been babbling about his Dad. Repeating sentences over and over about his Dad.... usually from books that he has read. He was substituting characters for the word Dad.  Today after pushed to the limit.... the tears came flowing. Falling into an emotional heap of tears and exhaustion. He just cried and cried.

I have been told by his teacher and his supports that the realisation of how difficult it must be for him to not understand why his dad was here then gone ?.... where he had gone to ?.... why it is so long between visits ?... the inability to say "I miss Daddy".... or just in general to say "I'm sad today...." was really evident. This was showing through his resistance. But unaware to what was going on... he was pushed to comply.... resulting in today's events.

It is difficult for me to interject too much at school as he relates differently to me, to his teachers, friends, his brother etc. I trust his supports and the decisions that they make. But I think today, sensing this was coming, my son has shown all those around him at school, that even though the words are not there... the feeling, confusion and emotion certainly is. Great when you have a diagnosis of Autism as these traits are supposed to be absent from their development.... but certainly very difficult to try and ease or preempt.

No-one did anything wrong. It is purely just one of those things. A day where I really see the pressure placed on my son attending a mainstream school. No matter how much love and support he has around him, I often think to myself, that sometimes we all forgetful he is Autistic and just trying to survive in an ever-changing world.

So we just experience and learn.

Slow down, be more patient, really look and watch what is going on.

Experience and learn.

Love and accept.

Time will ease the storm.... 

and the actions of today will be remembered.

Tomorrow is a new beginning.


I know my son is a challenge....
But I also know he is destined for greatness.
Just think what would have become of Helen Keller.... 
if Anne Sullivan had not walked into her life as a teacher and mentor.

"Only a mother understands what a child does not say."

Anonymous

WHERE'S THE GOOD NEWS ON DISABILITY?

When I read the paper I see on page 3,...

"A soaring Australian dollar, coupled with income gains due to the mining boom and the world's appetite for iron ore and coal, was behind a strong rise in Australia's net worth over the 18 months to June 2011.The report showed Australia's median net worth of $US221,704 was the highest in the world."

Then scrolling down the news for Disability in Australia.....

"Disability services in South Australia are unsustainable and disabled people, their families and their carers cannot wait years for real change."

"Australia's disability discrimination commissioner Graeme Innes is calling for national reform of laws that he says discriminate against the intellectually disabled....."

"FUNDING must be directed to the disability sector "within one Budget cycle" to address critical risks." 

"Plans for a national disability insurance scheme are being fast-tracked so it can be launched a year ahead of time, a Senate hearing has been told."

It is very contradictory isn't it. On one hand we have reports stating that Australia has a high "net worth," But somehow Australia cannot support it's disabled population, education or Medical and Mental health sectors....!

Here is the latest on the NDIS and Disability front, from the Sydney Morning Herald.

From personal experience.... Minister Jenny Macklin, will only regurge information from a policy.... one minister not to be trusted!

Govt 'cheeky' on funding announcement

October 20, 2011 - 11:14AM

AAP

Money earmarked for establishing a national disability insurance scheme may be taken away from other federal community services programs, a Senate hearing has been told.

The Gillard's government's announcement of $10 million for technical policy work had given a "misleading" impression that the investment was all new money, Liberal senator Mitch Fifield said.

"The way it was phrased was a little cheeky," he told a Senate estimates hearing in Canberra on Thursday.

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"It might have been better to say there has been an allocation of $10 million."

The national disability insurance scheme will provide long-term care and support to anyone who acquires a significant disability.

The Productivity Commission recommended setting up the insurance scheme earlier this year.

It is estimated the scheme would come with a annual price tag of about $14 billion.

Australian Greens senator Rachel Siewert asked Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) officials whether the initial investment was "coming at the expense of other services" which could potentially disadvantage disabled people.

The department's deputy secretary Serena Wilson denied that was the case, but was unable to give further information about from where the money was being relocated, saying it had not been finalised.

"It's additional for this task," Ms Wilson said.

"But at the same time the government is managing a tight fiscal strategy with budget rules that require the identification of savings and offsets to support new investment."

The department had tried to protect existing services, Ms Wilson said.

Minister Jenny Macklin announced earlier this week that the scheme would be fast tracked by a year to begin in 2013.

http://news.smh.com.au/breaking-news-national/govt-cheeky-on-funding-announcement-20111020-1m948.html


I can tell you now.... if the Department of Families and Housing, Community Services and Indigenous Affairs (FaHCSIA) officials... including Macklin, are going to be in control of any NDIS funding initiatives... the future will not look very bright for all of those living with disabilities. This same department was in charge of the HCWA ( Helping Children With Autism Funding) and that was a disastrous nightmare. Most families including myself took their fight to Canberra, only to have Bill Shorten, the condescending voice who represented disability at the time.... to back down to the parents demands for equality!

....and within the silence cometh the answers!

....and within the silence cometh the answers!

Life is busy..... rarely do we take the time to stop and think..... stop and watch.... stop and listen to those around us. I find that I surround myself with friends and family.....relying on them to understand, support and strengthen me. 

 I found myself this morning....having a cup of coffee at our local parish, chatting to acquaintances.... I was taking time to listen.....taking time to hear, what was said.

Isn't it funny how sometimes those who do not know us the best.... or who are not family, can offer words that make all the sense in the world to you or give you answers to challenges that you hadn't even considered !  It's a bit like an outside point of view..... I guess we just have to WANT to hear the message.

Conversations this morning shifted towards my children, how I was coping?  The fact that I looked tired and drained....but was still smiling.  Some of these people have watched my boys grow up over the years, baptised them, looked on from afar. Watching and learning about my role as a sole parent, and a parent of autism, purely from what we experience.  I do try to share knowledge.... if we seek acceptance and understanding for children and families on the spectrum.... then shared knowledge is the key to unlocking that closed door.  No-one was disputing my strength or will to continue on.... the fact that I have come so far.... to reflect on what an amazing job I have and no doubt will continue to do with my children.... and the admiration others have for my sense of determination..... but then it comes.... the sense of pity and sympathy. 

I don't like pity!

Our conversations shifted towards these topics. How I do not like asking for help.... how I would rather do things on my own.... I would call it head-strong and stubborn, maybe even if I was being completely honest... taking control..... those who were around me today, called it pride.  A question was raised... "Would it be such a bad thing to accept help from someone who wasn't a close friend or family member?  Surely if I seek acceptance through knowledge, then opening my home to those who want to support... would be an option?"

I was at first a little confused. I have organised home respite workers before. I have opened my door to support workers who either have their funding cut...and leave or visit once, fill you with hope ...never to be seen again. Sometimes it's all too hard. Better to do it on your own then to go through the drama and disappointment of that change.... 

it's not positive.  

But then a point was raised which has really affected me. 

Could it be that my ideals on acceptance and understanding, were somewhat closed.  That I cannot pursue a path that I long for, if I only allow certain people to join me on that path. Maybe I have been chasing away the possibility for more support, though these expectations (on friends/family) and my strong will. I guess, after listening to this, and contemplating what was said...it comes down to my fear.  Fear of being rejected, of others not wanting to accept my life and my children's disability. We have faced so much rejection in the past. But sometimes it is necessary to "take a good hard look at ourself... sometimes we can be our own worst enemy...." By recognising this only then can we grow and change for the better. Last year while studying Theology in a pursuit to teach again in Catholic Education, I struggled with accepting that I need to forgive. Rising to that challenge I feel that, time has helped me to do this. Maybe this is a new personal goal to strive for..... maybe I need to learn to accept that not everyone will understand my situation... and that is O.k. We all have the right to think and believe what we do. 

People will show their support in different ways..... I need to strive towards understanding and accepting that. Open those doors!

Good will and support is all around us. From people whom we may not know so well.

I guess sometimes we just need the courage to open our eyes and our minds to that.

When your mind and body are so physically drained it is difficult to see the "good" all the time. This is when, for me.... I need to look for support in the one belief I know is always there... who does understand... who does listen, will always accept and never reject who I am. If I truly believe this, my eyes will see the support that is there for me through the goodness of others.

It takes courage to be accepting.....

It also takes courage to believe.....