Time to Shine.....

Time to shine.....

"If life really begins at 40, maybe it's because that's when a women finally gets it... you know, the courage and determination to take back their lives. Seize the day! Glorify a new season of womanhood! It's her time and the time is right for a little self-indulgence. Along with this notion is a beautiful, liberating, life-changing lesson.... you just don't get when you're 28, but, at 40, you see with crystal clarity! " 

(extract from 40 something Blog)

I guess when the actual day arrived, I did not awaken with a over-whelming sense of "womanhood". I didn't feel upset either...something else I have been told I would go through. It hasn't affected me any real way other than the excuse I use every year when addressing my children.... "You have to...it's my birthday! "

When people ask me, what I did ? or how I chose to glorify the 4-0's ?, I guess years ago, I would have had bigger plans. A party or a dinner, like I had for my 30th. My 40th intentions were actually a trip somewhere...not in Australia. I would have loved to just escape for 3/4 days... just somewhere....anywhere.... to stop life from spinning. I'm not saying that I won't still do this....who knows. 

Maybe it doesn't matter what age you actually are, how you choose to celebrate the day you where born, parties/girl's nights or drinking yourself in a state of denial. I guess how each of us handles this "mile-stone" is a personal journey. 

 For me..... I believe, it is a time in our lives involving good conversation, laughter, happiness, spending actual "quality time" with friends and family making fond memories. That is what I am really content with at this stage. Funny how time can change our perceptions. 

We cannot predict how we react or feel when we turn "the big 4-0" BUT I guess if I was asked to share my thoughts, it would be to; 

"take it in your stride." Enjoy the time with family and friends and appreciate all that you have achieved and required so far. Take the time reminisce, relax and laugh. Look at old photos and share some memories with your family. It makes you feel good and that is what celebrating change is all about. 

To my family and friends thank-you for your kind words.

To Jess, you make an amazing chocolate cake.....

I can see clearly now....

....and the rain has gone, well almost  What a perfect way to end another hot day !

I am sitting listening to the evening rain. It's so peaceful....just as my home. Yep, you guessed it, my children are sleeping.

The tonsils are finally making an improvement, but they did keep me guessing until late this afternoon. Playing it safe, my youngest will be resting at home again tomorrow... that is one very long week.  I think I finally got to close my eyes at 4.30am this morning. We had an extremely rough night. I lied awake watching him toss and turn, cry and wince,  struggling to sleep. All I could think of was.... the tonsils must go.  I guess, when I do finally crash at night, I am usually so exhausted, that most of the time I do not hear my boy and his apnoea. But I was watching carefully last night. Observing his breathing purely because I couldn't sleep..he was way too restless. I guess that's what happens when your body is used to not sleeping.... you adapt.  I have been reading a lot about this particular procedure (knowledge is power) and what to expect, but as everyone is different, it will be a case of wait and see. The more I discuss it with friends, whose children have also had their tonsils removed, the more I am convinced I can get my boy through all of this. 

Today I was extremely lucky to be surrounded by good friends and great conversation, a surprise lunch and a much needed laugh.The group of women I am referring to have been great friends for a long time. We first met when our children were all in the same Preschool class. Time has passed by, much too quickly, as we have watched them grow and change. They are all in year 7 now, it's so hard to believe!

During those years, these girls have always supported me. They have been shoulders to cry on, willing listeners and supportive advisers. But I must say the best part about our "circle of friendship" is the laughter. We have shared some really funny moments... especially when there is a few bottles of Vino involved.

So even though the week has been tiring, dealing with sick kids and hearing of tragic news, the girls can always be relied on to bring a smile to my face. 

Friendship is a powerful gift and I thank each and everyone of you !

I have taken refuge from the tonsil tyrant in my peaceful garden..... no... he still has not improved.

In fact, he is getting worse. We are now in day 6 of 2-3 hours of sleep and I'm feeling like a train-wreck....so please no-one be brutally honest with me.

I am trying to look for even the smallest positive out of my son's tonsil infection.  But when he decides to share with his older brother,  I am struggling.  I consult my R.D.I positive thinking parent cards for enlightenment. Hmmmmm, let's see; 

"I remain calm despite the storms that may blow around me" . 

Oh give me a break!  How can anyone be calm with a tonsil tyrant and a 12yr old victim of the universally acclaimed, life-threatening man-flu, running around the house?  

 "Oh the poor dears!"  

Well that's about as sympathetic as I am possibly gonna get today.

Now back to the positives..... let's see. Well with the tonsil tyrant loosing his voice, I have been able to practice my facial gesture communication. (R.D.I Objective.)  My older son has completed a little bit of his technology assignment.... building a solar powered car.  And I guess I have been able to blog a few thoughts, sort out my QTAC application for a course I hope to be accepted into in July (Dip of Science) and help my eldest organise his latest quest.  Yes... that is right.... his latest quest. His mother's new found ability to "rise-up" has obviously been a good influence.  My Yr 7 child, has now taken it upon himself to organise and promote "Dress Differently Day", at his school. This is a fund-raising opportunity spreading awareness of Autism and a fun way for the entire school to dress differently and collect some much needed moola to benefit Autism Queensland.  I did almost fall over when he came to me with the idea... "Who is this responsible child?" I thought to my self!  Very non-aspie behaviour, don't you think?

 I mean.... to want to raise funds and awareness supporting those children on the Autistic Spectrum. Hmmmmm....

 Oh my gosh!

Is that a light I see at the end of a dark tunnel?

Cheers and Tears

"It is better to lead from behind and to put others in front, especially when you celebrate victory when nice things occur. You take the front line when there is danger. Then people will appreciate your leadership."

Nelson Mandela

Last night we attended our school Year 7 leadership ceremony. My eldest who is one of the Year 7 children this year, was really excited. It's a "big deal" as we say. All the children were presented with Yr 7 badges. Our parish priest reflected on some inspiring words of leadership and showing "true colours". The children recited a pledge and the audience raised their hands, giving their blessing. Afterwards there was a lovely supper provided, which is fantastic, as it always allows me to catch up with parents who I do not get to regularly see.

The tonsil tyrant, did o.k.  He did unleash a few "darth vader" moments, but generally speaking, sat quietly, clapping and cheering where appropriate. Our church had a lovely, family orientated aura to it last night. It was packed to capacity, with the year 7 parents, grandparents, friends and other family members. It reminded me of my childhood actually. Children were having photographs taken outside the church with grandma and grand dad, school friends arm 'n arm, mum and dad. Most of the kids had been to a dinner before hand, celebrating with their families, the year to come. The sense of pride from everyone was evident as our children were called in one by one, receiving their badges, blessed by our very caring parish priest. We are so lucky to still have him attending our church and it is a lovely feeling to think he Baptised my son and was now there to see him, turning into a responsible young man.  Our priest has always supported myself and the boys.... always with a warm smile and a joke.

The sense of community at our school and parish is like no other. Everyone surrounds you when help is needed. People whom I've never met, have approached me to tell me what an amazing mother I am...just by watching me with my children. This was shown last night and like most times we attend a celebration.  I watched as parents approached my son's good friend, hugging him, offering words of support. You see, unfortunately, his family was involved in the recent earthquake in New Zealand.  Last Tuesday during the swimming carnival, a lovely woman whom I have so much time for, (purely from our son's friendship)... received a phone call that her family was affected by the earthquake in Christchurch. She is from New Zealand and her parents, in-laws and brother still reside there. All the mums, that day surrounded her with words of encouragement, hugs and support. Until the end of last week she still had no word on her missing brother. Then tragedy... as we all heard, that her brother had been killed. She left a few days ago to grieve with her parents. So last night to watch her brave son, attend this ceremony without his parents, to watch him show an occasional smile, was just amazing. He did so well and was so strong, holding his head high. Afterwards I spoke to him, offered some words of support, a quick hug, and a caring smile. I reassured him that he was incredible and how proud I felt. The rest of the family are leaving today for New Zealand.  I pray that they travel safely, and have strength during such a tragic time.

I think that my family is very lucky to have a wonderful, supportive parish, a caring group of friends and such a fantastic school community in our lives.  Raising children is no easy feat.  But I know that when you have access to affiliations like this, it makes the journey so much easier. That sense of "community" and "acceptance" is not found everywhere in today's world. This is what I had hoped for my boys on the day they were Baptised... this is what I had envisioned for my family..... and this is what will help guide them in the future.

Who's Responsible ?

Thank you for contacting the office of the Honourable Curtis Pitt MP, Minister for Disability Services, Mental Health and Aboriginal and Torres Strait Islander Partnerships.

We are considering the matters raised in your email and should a formal response be required, one will be provided to you in due course.

Kind regards,

Office of the Minister for Disability Services, Mental Health and Aboriginal and Torres Strait Islander Partnerships Postal Address: GPO Box 806, Brisbane, Queensland, 4001

Telephone: 3235 4562 Fax: 3235 4564

Email: disabilityservices@ministerial.qld.gov.au

And so it begins... the ever so polite, automated response we all get. In other words. 

"Yeah thanks for that but go away!"

Don't you just love the phrase....

"should a formal response be required, one will be provided to you in due course." 

In other words... "we really do not have any thoughts on your opinion or concerns so, do no expect to here from us..."

I remember quite distinctly, doing the "same dance" around words with Minister Bill Shorten.

Tonsil Update

Time for a Tonsil Update.

It's day 4.... so as you can imagine I am a little unhinged by now.

We have been to the G.P for a "let's wait 24hrs and see what happens" verdict.

I'm actually down with that advice, as I am not a fan of over-using antibiotics. It doesn't exactly boost your immune system.  

So 24 hours later and it is like I am living with Darth Vader.

My son's tonsils are now even more inflamed, he is more uncomfortable and is struggling to eat or swallow water. We are heading back to the doctors this afternoon to get our medicine.

He is sleeping for 2-3 hours at night. Is quiet irritable and pale. He's just sick.  Poor kid!

When I can get him to sit down, he just needs hugs and attention. But as he has recently taken to learning roller skating, it is hard to pin him in one spot.  Yes we are still roller skating up and down on the tiles in our house, wearing just bonds undies.

The heat isn't helping either. I think even if he was not sick, he would have been at home. There is no way he copes with anything over 30 degrees. He is just so hot all the time. His body senses are extreme in this type of weather. Today we have been told the temps will reach 35 degrees. Even though our school has air-conditioning in the classrooms, it still affects the smaller children. I pity all those little kids who don't have cooler classrooms. My mind boggles how children can they be expected to learn in these types of conditions.  So for now... I am trying to get my son to just stop skating and rest.  He constantly needs intellectual stimulation, being stuck at home with Mum, is just boring. It is kind of like I need to run a 24/7 mind challenge for him. I think for today I will just try and get him accustomed to eating ice-blocks. He won't eat or even lick anything cold or frozen. It would give him such relief and be a real benefit when those dang tonsils do come out.  

Anyway... will get to the doctors and hopefully within 24 hours he will have improved enough to get some sleep and maybe, maybe, go back to school...Yipee! 

Love my boy, but love him more on Mondays through to Fridays or when he is asleep!

State Government and their 1 Million Promises....

State Government announces $1 million to support 1,000 children with a disability

1,000 Queensland children with a disability will benefit from a new $1 million State Government early intervention initiative.

Disability Services Minister Annastacia Palaszczuk today said community organisations from Innisfail to Ipswich would share in the funding.

Ms Palaszczuk said the funding boost would deliver extra early intervention support for families in Innisfail, Bowen, Rockhampton, Gympie, the Darling Downs, Ipswich and Moreton.

"Children and their families in Brisbane, Logan, Redlands and the Gold Coast and the Sunshine Coasts will also benefit," she said.

"These extra funds will deliver more early intervention services and supports for around 1,000 children with a disability right across Queensland.

"Early intervention is important to so many Queensland families, and it's one of my top priorities as Minister.

"Early intervention works - I've seen with my own eyes the way it can change the course of a young person's life. It also help families to build a brighter future."

Ms Palaszczuk said the Building Family Capacity Initiative would target children aged up to 18 and their families.

"It will help to link families to training, education and social opportunities," she said.

"Programs will include after school play groups, sport activities and autism workshops.

"It's about helping families access support networks to help their children grow and prosper."

Ms Palaszczuk said the organisations to receive funding through the initiative are:
•    Centacare - $374,450
•    FSG Australia - $154,750
•    Family Planning Queensland - $140,000
•    Ipswich Community Youth Services - $89,000
•    Autism Queensland - $82,898
•    Lifeline Darling Downs and Southwest Queensland - $70,467
•    Bowen Flexi Care - $52,183
•    Innisfail District Flexi Respite Assistance - $36,252

Minister for Disability Services and Multicultural Affairs
The Honourable Annastacia Palaszczuk
17/02/2011
State Government announces $1 million to support 1,000 children with a disability

Yeah it all sounds really promising doesn't it. But we live in the real world.

Maybe instead of putting another 1 million into Early Intervention, which already has $6,000 available for children up to the age of 7 years old, the Government...if it was really focused on helping Qld families, should be investing in funding for children over the cut off age from HCWA.

Don't get me wrong, the government funded Help Children With Autism Package is a wonderful support to families with children on the Spectrum, but as I am nearing a phase with my youngest of the funding cutting off, I am faced with the harsh reality of the lack of support for families. Families which has no doubt been struggling with this for years before me. Just recently the Department of Disability Qld rang to confirm that they had received my application for support and that under new directives, everyone who lodges an application will now be entitled to a needs based assessment. My assessment date is May. That is over 2 months away. These needs based assessments will determine whether or not you qualify for funding. So does this imply that my child who suffers Autism will be compared to a child with a physical or intellectual disability, depending on needs?  If so, I can almost guarantee, those children with more severe disabilities, of course require more support, but that is not for any Department to say that my child's needs are not valid . I am very thankful that my children do not require wheel chairs or feeding tubes but it is ridiculous for the Department of Disability to even place them in the same category. Those children who do have extremely severe needs, should not even have to be assessed on "needs".... the funding should just be given to them, purely for the way they have to live.  A no brainier situation there.
So if Ms Anna Palaszczuk was really informed and focused on helping those with disabilities she would stop wasting money on websites and play groups. "My Time" and " Positive Partnerships" offer a lot of support and information for parents and setting up play groups for those under 6 years. Those two organisations are doing a great job, filling a required need of informing families.  What Queensland families need is more funding for therapy. Therapy that will help improve their child's quality of life. It is inhumane to say to families... I am sorry but your child has turned 7 years old so now they can no longer receive the funds they require to continue their therapy. In my personal situation, we have only benefited from the end of the HCWA funding.. that is when it was implemented. My son was 5 yrs old then so he really only got 2 years out of it. Now I know I am lucky just to have that 2 years. Some parents couldn't even get that. But his funding has been paying for R.D.I  therapy.  R.D.I  therapy has a philosophy of improving quality of life. It is not a short-term fix, not a band-aide. That is how I know, what we are doing with my son will change his overall life. It takes time to reteach all the development phases that he did not have at birth. So where do I stand now knowing there is no way to fund this therapy.... we'll  I guess I have two choices. 
Firstly I can abandon his therapy, which undoubtedly will greatly affect my child's chances of having quality therapy or I can find another way to source the funding.  I know that the Department of Disability or Government sectors will not help my family, nor will other financially responsible parties. So, I guess it is all up to me. 
I need to consider....  Do I try and go back to work to pay for R.D.I while at the same time, support my children at school and with all their specialised therapies ?... that will require a lot of time off. Would you employ someone under those circumstances? 
Or, do I work and stop all therapies for my older son? Hmmmm, harsh thought really. I still couldn't really do RDI or support the younger son at school. Besides why should my older son have his needs denied just because he is older.  Both boys would also would require before school and after school care if I choose to work.  With my youngest sons diagnosis,  this care would need to be specialised before/after school care. Of course then, I need to consider my role as a sole parent, with 100% care, while working full time?  I can honestly say I could not do it without more help.  
For anyone who has no choice but to do this level of care.... you are the most admirable and amazing people. 
I suppose my other choice is to stay on the disability pension, and through the help of family and friends try to find ways of funding the "life-long" supports my boys will need. That is a massive responsibility on my family's finances. They may not be able to help! and really why should they have to step up.... to fill in the gaps that Government and Child Support regulations leave. 

I'm not sure which path I will choose and I don't know where my future lies here.

What I am sure of is this. Minister Jenny Macklin, Minister Anna Palaszczuk and Senator Jan McLucas, need to consider if they are really promoting equality and respect towards children and families affected by disability. 

Do not underestimate the determination of parents to fight for children's rights. They will not stop "rising-up" for more funding. These families have "a will and strength" like no other and they never give up. Parents will always be the voice for their children. Your role is to listen to them not "advise" them.

We are not uninformed in our knowledge of our children's needs or in their disability, so do not try to blanket us with "political jargon". We are the ones who know our children best... 

According to the Australian Human Rights Commission and the Disability Discrimination Act 1992  disability discrimination is unlawful. The Commission states that people with disabilities have the same rights to equality before the law as other people in the community. 

The right to quality of life. Maybe Government Departments, who claim to hold the "key" to the "golden chest of funding" ...need to revisit the Human rights Commission Web page.

http://www.hreoc.gov.au

That is so Interesting...... when looking at email addresses to forward this Blog to; it came to my attention that as of 21/2/2011, Minister Anna Palaszczuk is no longer in charge of disability... now it is Minister Curtis Pitt. 
Don't these people know what continuity mean? 

The above Blog Post has been put forward to the following;

jmacklin.mp@aph.gov.au

thepremier@premiers.qld.gov.au

disabilityservices@ministerial.qld.gov.au

senator.mclucas@aph.gov.au

Ode to Motherhood

"Life's journey is easier when you hear a friends footsteps beside you...."

Today I had some very sad news. 

A beautiful mother and friend lost her son to teenage suicide. He was only 17 yrs old.

My family was lucky to have this caring woman in our lives, working with my son.

As time passed we all became close, discussing our boys and the challenges we faced both as sole parents. 

When it's hard to find the right words, the choice just to walk beside....

hopefully will be enough.

A message to my family and friends, if I haven't told you recently... hear me know when I say  how grateful I am to have your support, friendship, loyalty and love. 

I've taken time today just to hug my kids, listen to their words, cherish them in silence. 

Appreciate what you have....

More Coffee!

It's 1.08am.... The boy is still awake and miserable.  Even the wiggles are not working

their Magic tonight!  I guess he will eventually fall asleep... but will I ?

Be the Change You Want to See....

"Sometimes by losing a battle you find a new way to win the war."

Donald Trump

When I first started this blog, I was relieved in a way. I finally felt I had the strength and courage to talk openly about life. Growing up in a Catholic family, our past was full of secrets. Things were just not spoken of during that time. It wasn't the done thing. I can understand why things were handled in a particular way back then, but now I feel it is important to know what happened, with respect and support not judgement or opinion. 
Everyone needs a sense of belonging. To know where we have come from, who it is that we respect and who inspired us to become the people we are today. We need to understand and connect with those qualities and opinions we value. It's important to learn how our families faced troubled times, if we are ever going to be able to face and overcome them ourselves. We also need to know what qualities run deep through our veins....strong, weak, determined, hard-working, caring, loving, gentle. From here our self-identity can be evolved. Our values and morals are formed and even though we cannot change our experiences in life, what we do with those "lessons learnt" is purely up to us. 
In both my mother and fathers ancestry, women were strong role-models. They dealt with so much hard-ship. Caring, supportive, holding families together in times of grief, sickness, war, poverty, social pressures and sometimes even dealing with predicaments that brought unwanted attention to the family. All of this, with a strong sense of loyalty and responsibility, with faith, patience, grace and poise. It was these women, who also stood behind and honoured the male figures within the home. Always giving, helping and working hard. They were inspirational. 
I think I would have liked to have known more about these relatives, much earlier in my life. To appreciate, to learn, to understand and embrace their spirit. 


Part of my of understanding of who I am, is the reason behind this blog. A"gift" that I choose to give my sons, a gift of knowledge.  The more I can communicate about the different "mountains," we as a family had to climb, about how we conquered these and succeeded in life...the better. With age will come appreciation, this I know, but at least the knowledge is here ready to teach, and guide when they are ready. Little by little I am revealing inner thoughts, information and beliefs that I stand by. It has been difficult, and for a very long time, it was easier not to discuss, think or feel any emotion. I guess in my "survival bag of goodies"-  to show real, honest emotion was a sign of weakness. It can be tiresome to relive past memories that have left a scar. But as I hope for a future, when the boys will have families of their own, and all these moments will light up the right path in times of need.
When considering what I need to say about the past, I guess, I was conflicted. I could have blogged about events we experienced, but really...... the drama, confusion and pain attached to those memories is somewhat unreal. A bit like an episode of "days of our lives". Way too confusing to rehash. I also need to consider the types of lessons or phrasing of words I want to use, to communicate meaning . If said in a way, the boys could attach a past memory, then my guidance will hopefully be appreciated and understood. 


So my thoughts turn towards some very simple small points. I have already mentioned a few in previous postings:

1. Have Faith in what you believe.

2. Treat people the same way you want to be treated.

3. Know and be proud of who you are. Believe in yourself.

4. Take the time to think before decisions are made.

5. Take responsibility for your words and actions.

6. Love and Respect your family and friends.

7. Remember to say "please and thank-you".

8. The simple things in life are the most precious.

9. You will only ever have one mother. Cherish her.

10. Nothing is easy in life, so work hard.

11. Chance is a gift, so act on chance when given the opportunity.

12. Slow down and live.

13. Knowledge is power.

14. Perseverance is Priceless.

15. Nothing is Perfect. Make Mistakes.

16. Learn the rules, then play better.

17. Sometimes you need to believe — in other people and in life.

18. Always ask questions.

19. There are more important things in life than whatever is bothering you today.

20. Always get up and go another round.

Anything I left out? I am so sure there would be. But just for now, to start off....
I think I will stick to these. I know, mistakes and changes are good. This will be a work in progress.

DOWN FOR THE COUNT!

And there it is.  I had a feeling this would eventuate . I was certain he was coming down with something.

The tonsils have flared and the temperatures are raging.  We are keeping them down, but when he is sick.... Look out world!  This boy has the ability to be really unwell with boundless energy.  For example right now....he has a high temperature but is roller-skating around the house in his undies. Great look!  He then wears himself out after a few minutes and has to rest.

So, it looks like our family, is in for some temperamental times this week!  Not to worry though. We are all prepared.... and ready for action!  Just hatched a new brew of coffee, we have puzzles, books, Wii games, Panadol and lots of cuddles ready to deploy.

Will check in later......

It's now past 4pm. Youngest is in full swing. Temps are still high. 

All we get at this stage is usually squealing all day long which hurts and irritates his throat accompanied by lots of head banging.  I would say his head would be hurting by now too! The permanent lump, on his forehead is twice the size it normally is - red and bruised. He is tired and extremely cranky. His behaviour off-sets his brother, making them both feel frustrated.

I have just separated them. The youngest is lying on the bed in my room...in the air-conditioning. I am hoping he will fall asleep. He hasn't eaten but is taking water. Will help with all the Panadol. I usually just lie next to him gently stroking his arms and legs. A sensory stimulation that helps to calm him. Who knows?   I may not be in for a rough night... think I will try and stay optimistic!

9.25pm  Well he's awake... so much for being optimistic!  Fevers still high. Bit happier though.