Happy Birthday Shhh!

Happy Birthday Shhh!

Shhh.... Today is my youngest son's 7th birthday.

Quite ironic to fall on World Autism Awareness Day..... but never the less.

This year I had made the decision to not to celebrate his Birthday on the day he was actually born. Not that I need to justify this to anyone criticising my actions, but in sharing the factors behind my decision, I am trying to educate, how families living with Autism are required on a daily basis, to "think outside the box."

As posted earlier in the year, my eldest son chose to have a party for his birthday, over a present. A fantastic opportunity to create great memories, socialise and have fun.  Even though we had a few small glitches.... the event was a great success. It wasn't about how many children were invited, the venue, the expense, spectacular themed cakes, extravagant games and prizes, catering and decorations. It was about friendships, family, respect, values and creating a moment for my child where he was confident, relaxed, happy and surrounded by great people. Of course I wanted to provide a similar "birthday memory" for my youngest. Our family is working on the R.D.I Philosophy. Creating Episodic memories, is part of that development. By creating these memories, they will be used when faced with uncertainty in life based on; events, times, places, associated emotions, and other relevant knowledge.

Not all the careful planning and organisation in the world, would have helped in organising a birthday celebration for my son to take place today. Sometimes in life, there are appointments, responsibilities or situations that can not be avoided or postponed for any reason. This week our family had numerous challenges. It was a particularly unsettling week for my young son.  For the first time in three years he was sent home from school as he just could not cope that day. Luckily for me, his teachers, aides and I are optimistic. We know this could have been due to; a slight head-cold, the anxiety in our home at the time - as my eldest was preparing to leave on camp, the fact that this school term is 12 weeks long and  EVERYONE  has had enough, a sensory overload, the fact that he had very irregular sleep patterns for the previous three nights.... anything really.  The point is, that I have faith and trust in wonderful people who work with my son. Our relationship is strong. When they see my son behaving in a distressing way, that isn't the norm, the call is put out to me immediately. It is then MY DECISION, depending on the irregular behaviour, as to whether or not I need to intervene and collect him. 

On this day..... I needed to bring him home.

After this incident at school, the following consumed our week. An Ear, Nose and Throat Specialist appointment, my eldest left for camp, another Psychology appointment and a Sensory Assessment on Friday. As well, during this very expensive week of medical responsibilities, my young son was highly stressed, fretting for his older brother. 

Was this a good time to prepare a birthday party for him......?

Of course it wasn't !  

I needed to consider, not only all the above factors, but also the fact his brother was not here to help, plan and be involved. My little guy would not be at school to take treats in to share with his classmates - due to his medical appointments. His grandparents were in Adelaide, his mood, behaviour and Autistic traits were extreme just from the week's activities.  From past experience trying to celebrate his birthday, at home, then again at school and again with relatives, results in a total shut down from my son. He hates the birthday song.... it's either the volume, tone or pitch... he will retreat with his fingers in his ears and his hands over his eyes. All the different settings and small celebrations confuse him as he doesn't quite "understand" what a birthday is. He never eats the cake... as he doesn't really like that kind of food. He hates the sound of balloons popping or being blown up.  He has only just (in the last year) got the whole idea of unwrapping a "surprise" (present).... so to give him a box full of toys means nothing.

Basically Birthday are a SENSORY NIGHTMARE for him.

Please do not think that I am going to "compensate" to my son's Autistic traits. As his mum, that is not my way or the R.D.I way. He will have his birthday celebration. He will be surrounded by family and friends who know him, understand his needs and love him. We will create beautiful, birthday memories for him to recall and use again when he attends other children's parties. He will have his day of feeling special. We will continue to work towards helping him understand what his age and a "birthday" means. He will have a great home-made cake (one of my new birthday traditions), he will have brightly presented gifts to unwrap, he will blow out his 7 candles surrounded by those who adore and support him and he will take his 25 little treats to school to share with his school friends.  The only difference, I need to choose a more settled time, when his whole family can be around to celebrate with him.  My son's birthday is not about my feelings or what I want !  It is what is best for him.  It is not about a big expensive party filled with children he cannot even engage or look at. It is not about noise, surprises and atmosphere. It is about him. Giving him the opportunity to feel special for just one day out of the year.

Isn't that what a birthday is really about anyway ?

This morning I crept into his room while he slept. I wished him a Happy Birthday, kissed his forehead and stroked his hair. I reminded myself of why I need to stay strong, focused and determined in my efforts. I affirmed everything I know, how thankful I am to have my sons, thankful for family and friend's support and blessed that I have the determination to continue striving for a better quality of life .... for my Autistic child.

"Happy Birthday Little Man!"

Pictures of Blue Light Support....

Pictures of Blue Light Support!

As the pictures come in I will continue to upload changing this post.

Lights on Everyone!

Lights on Everyone!....

Thank-you AEIOU....
The Story Bridge looked spectacular tonight!
1/4/2011

Hope you have your lights on......
Let's not forget the purpose......
Autism Awareness

"Look at the lights....."

     

"No Matter how small we are or where we might be.

Like a small candle, we all can produce the same amount of light.

Spread light with your thoughts, words and actions.

It can be a dark world....

And you are here to create light.

So keep shining brightly"

Not only is "Light it Up Blue" about making the world aware of Autism.... but it is also about acknowledging those who support families with Autism.

I am honoured to have exceptional people in my life who encourage me, inspire me and give me hope to keep going when life becomes a challenge.

All that I am today.... All that I can give my children.... is because of these mentors.

I thank-you with all of my heart.

Rae

     

Call for cooperative research centre to combat autism

Call for cooperative research centre to combat autism

Autism researchers at The University of Queensland (UQ), along with Autism Queensland, are leading a national call for the establishment of a major cooperative research centre (CRC) to improve diagnosis and treatment of the increasingly common disorder. UQ occupational therapist, Professor Sylvia Rodger, will call for government and private support for the proposed Autism CRC at the National Autism Summit in Sydney tomorrow (1 April 2011) on World Autism Day. 

Researchers from seven organisations, including universities across Australia, have each committed to contributing $50,000-100,000 per annum over 10 years and are calling for further funding from government and private sources. 

Professor Rodger said The Autism CRC, which would work closely with patients and their families, would mean better services and outcomes for children and adults with Autism Spectrum Disorder (ASD). 

“Schools struggle to provide for children with ASD who frequently under-achieve academically, drop out, or are excluded for behavioural reasons. As adults, the majority experience dependence and unemployment, while around one third experience psychiatric illness,” Professor Rodger said. 

“The Autism CRC will enable earlier, more accurate and efficient diagnoses and find more effective and cost efficient ways of enabling children and adults with ASD to achieve valued life outcomes,” she said. 

“Currently, diagnosis of autism is imprecise, time-consuming and expensive. While families can use a range of intervention programs, there needs to be more work done to find out which of these is most effective.” 

“Only through the establishment of a collaborative, inter-disciplinary research team of experts will we be able to improve the prospects of more than a million Australians directly or indirectly affected by ASD.” 

Members of CRC core bid team are: The University of Queensland, Autism Queensland, Queensland University of Technology, La Trobe University, Curtin University, University of New South Wales, University of Western Australia. 

Media: Marlene McKendry, UQ Faculty of Health, 0401 996 847 

ASD FACTS 

Autism Spectrum Disorder (ASD) is a lifelong condition affecting at least 1 in 1001 children with an estimated annual cost to Australia of $4.5-7.2 billion. More than one million Australians are effected directly or indirectly by ASD and there has been an unexplained 25-fold increase in diagnosis in the past 30 years. There are now more children with ASD than the combined number of children with cerebral palsy, diabetes, deafness, blindness and leukemia. 

ABOUT CRC 

1. The CRC bid team has engaged parents (as end users) from the outset to listen to what parents needs are as well as those of their children with ASD. 

2. CRCs aim to find solutions for challenges experienced by end users (parents, families, teachers, service providers) and to provide benefits for Australians. 

3. The Autism CRC aims to: 

a. Bring together researchers in psychology, education, health, neuroscience, technology to solve end user challenges. 

b. Never before have this range of researchers come together across Australia collectively to tackle the issues. 

c. Aim to develop a national protocol for diagnosis; consistent training for diagnostic practitioners; identification of biomarkers – make diagnosis easier and less burdensome/time consuming for parents. 

d. Aim to research best practice in provision of educational interventions for school age children including technological applications, classroom environments and social skills interventions. 

e. Aim to improve outcomes for adults with ASD in education sector, enhance employment options and community living to improve independence and decrease stress on parents/families. 

4. If The Autism CRC could achieve these outcomes individuals with ASD and their families would be better informed, provided with evidence based services, and better outcomes. 

5. The Autism CRC will also increase autism awareness in the community, schools and in employment.

It's Scary When It's Quiet

It's Scary When It's Quiet

Having such a challenging week! (sarcastic tone.)  But I guess it is not time to curl up in a ball...rocking in a corner just yet.
My eldest son is on Camp.  A Year 7 leadership adventure down in the New South Wales Hinterland, at "Camp Good Enough!".  He would be having a great time doing Archery, canoeing, not sleeping, pranking teachers, camp fires, all the usual stuff kids get up to. But that leaves just me and the youngest.  Even though I love spending some quality time with my little guy, I must say the conversation is a little sparse.  As is, we don't get a two-way conversation rolling, but at present he is going through his "Spanish" stage thanks to Dora the Explorer and Diego. He is reciting phrases, counting and greeting people all in Spanish... FANTASTICO!
The house the quieter than normal, come to think of it cleaner too!  At first it was a welcome change. The peace and serenity of no televisions blaring, no arguments, no back-chatting or trouble making giggles. But the novelty has well and truly worn off.  I didn't realise how much I missed my eldest until he was at camp.  He is my conversation. I ask about school, what he is learning, jokes, social gossip amongst friends etc.  We will talk about choices for dinner and cook together, plans for the weekend etc. I think I am even starting to miss his one-sided thinking and the way he will argue with me over the drop of a hat!  All the seeming-less family chatter many people have... they do not realise what a precious gift that is.... just to talk. 
I am even missing my son's independence. His ability to shower himself, dress himself, organise his school bag, sometimes lunch (If he is on a roll!)  Most of the time I always hear myself nagging him, to help out more....but now that he isn't here... I can see how much he does. How much he helps me with his younger brother. I really didn't think how much I rely on him.  WOW....... that has hit home. I think I've just had an 
(OMG moment.... kid slang!)

At times I ponder, carrying guilt over the home responsibilities placed on my eldest. But I really don't think it is any different from the requirements needed by; larger families, or families who have working parents, with younger siblings or other families who have siblings with needs. A home is about helping each other and doing what you can. All pitching in to work as a team. You do lean on each other, that is what a loving family is all about.


One of most favourite quotes of all time......

It's a Date!

It's A Date..... with an E.N.T that is!

Well it's a go!  The D-Day for my son's Tonsils and Adenoids is Monday 9th of May.

Apparently that are "huge!" .... duh!  hence all the infections.

A 6.00am morning start, due to the fasting.... (I'm rotten with no coffee at that time of the morning, so luckily North West at McDowall have a cappuccino machine), and he will have a private room for a few nights.  I will be staying, while friends are helping out with my eldest. 

I think the most unnerving part about the whole operation is the post-operative care.

There is a chance the throat could rupture and bleed, especially if my youngest decides to squeal or bang his head. We will need to keep a watch for 10-14 days for this and then of course the whole eating thing. My youngest has a sensitive diet now.... so I can just imagine what I am in store for.  He won't eat anything frozen or cold, but drinks cold water. The only "soft" food he eats is mashed vegetables and bread.... no jelly....no dairy...no scrambled eggs but will tackle French toast.

When I voiced my concerns to the Ear Nose and Throat surgeon he immediately responded with an answer, which only reinforced my decision in choosing his services.  He understood where I was coming from, but said...." usually if we pre-empt issues then we will have them.  I recommend we just wait and see what happens. He might surprise us!  He might be OK and heal quickly afterwards."    

Well that was a huge relief.  But then, the words I wasn't keen to hear..... 

"He will need a few weeks off school and basically we need to try and keep him "quiet" for the first week, not much activity!"

Dang!  

I'm going to need a lot of wine!  

Donations would be gratefully accepted.

SECRET AGENT SOCIETY

New program helping kids

·         HEALTH

18 MAR 11 @ 06:21AM BY ANNA HILTON

Dr Renae Beaumont.

IT’S not often playing video games is shown to have health benefits but an Indooroopilly child psychologist is gaining international recognition with a new program she has developed.

Dr Renae Beaumont created Secret Agent Society to help children with disorders like autism and Asperger’s Syndrome develop their social skills and the results have been dramatic.

Dr Beaumont, who is based at Indooroopilly’s Triple P Centre where her program is available, is holding a practitioner training course next week for interested parties.

To register for the course call the Triple P Centre on 3226 8555.

Check out a preview of the game at www.sst-institute.net.

My son has the program at school. He can access it through Learning Support.

It is fantastic. He is 12 years old and loves it! Must check it out.

Walk Alone

Walk Alone.

"Being strong sometimes means being able to let go....."

“There are things that we never want to let go of, people we never want to leave behind. But keep in mind that letting go isn’t the end, it’s the beginning.” 

Unknown

Saying goodbye to friend, relationship or accepting that you need to let go of those you care about.......  letting your child grow and experience life, to have strength that you cannot change the inevitable, the only way forward..... a road best travelled alone. Everybody hates 'goodbyes", they take strength and courage.  

But sometimes we need to walk alone to show we have the strength to live and leave a legacy. We need to stop living for what maybe or what may never come....

Close your eyes, hold your breath and hang onto the day already here!

Ear Nose and Throat... here we come!

Our appointment time has finally arrived as we are off to see the Ear Nose and Throat Specialists about my youngest son's tonsils.  Just in time too, as he came home early from school yesterday with another looming infection. 

Our Paediatrician told me the specialist he was referring me to had personal experience operating on a child with Autism.  I would prefer this option. My sons are my life and I want the most appropriate level of care when needed. I just feel if experience or knowledge of a child on the spectrum is known, then pre and post operative complexities will be prepared for if needed. 

I have no idea how we are going to get a good look at my youngest throat.... but that's not my job really is it?  I am confident the Doctor will be able to persuade him round.  My little guy will be on guard anyway. He would not remember the Holy Spirit Hospital at Chermside. We have frequently visited the specialist clinic over the years; E.N.T (different one) and audiologist but he was way too small. So his senses will be heightened and his traits on show, purely from going somewhere new and not knowing what to expect. In this situation it is up to me to be calm and in control. He will feed off any anxieties or stress that I will have. We have our sensory kit to take with us.... fidget toys and skin brush. I have ensured a big lunch is on the menu and I also have the Ipod. This is a great device as he can put ear plugs in and block out any noises that will irritate him.  I haven't covered the smell sense, but feel confident we are prepared.

So hopefully, when I return this afternoon I will have lots of information to share. 

Wish us luck!

Inner Strength.

Inner Strength.

I find myself thinking about Inner Strength tonight.  We have had a testing week. But this time it's not my boys who have been out of balance..... it's me. In fact my youngest has been having one of his best weeks yet this year. He is social, working independently, he has had a few meltdowns, but nothing of real distress like previously. I suppose the only difference has been that he is very unsettled when he arrives homes. His behaviour has been draining. My boy at the age of almost 7 years, is testing limits, squealing and head butting - but not from frustration, just when consumed by a temper tantrum. (I have always referred to it as the terrible two's but it's harder because of his size and strength.)  The developmental years were never typical milestones. My son was very much in his own world during that time.  I guess I should feel grateful and relieved that he is acting "typically" now..... but I'm way too tired!
Again my eldest has had a busy week. I.T assignments due, solar powered inventions to make, he is back at Taekwondo, which is great as it releases any built up tension, liturgy's, leadership assemblies... it just goes on and on!   I have been working a lot with my eldest on his "time management" skills.  Basically he has none!  So I have to help him to understand this concept before he goes off to High School next year.   To be positive, he is starting to make progress, but it's a challenge for him and me.  I need to be extremely patient, understanding and I need to be constantly thinking ahead, choosing whether to set a limit... or whether to let certain outbursts go.   As you can probably gather by now, that if I am feeling drained, tired or just generally "off my game",  I don't cope with the demands of the day.  It's difficult to pinpoint why I am easily rattled. The boys have not been sick, I have been running everyday, I am getting sleep, making sure I take time to eat, not overwhelmed by school meetings, I have been busy activating the Light It Up Blue Campaign in the community.  I can't really explain it... why my energy is so flat.  All in all it has been a relatively quiet week.... that is compared to others!   It's like time is just dragging. The days have been hot again, and I am just feeling mentally, emotionally and physically empty all the time.


But then, after listening to a friend this week of her anguish, pain, suffering and grief over a loss, I was drawn to her "inner strength."  On commenting on her courage and resilience, her reply was simply... "well that's what we have to do."  Her strength inspires me. Even though I am fortunate to not go through a similar ordeal, I was overwhelmed by her courage, her faith, her will and her sense of hope.  I think it is only when you assimilate to friends in times of need that you realise there are many others around you, going through a lot tougher times. So matter how tired or exhausted you feel.... you continue to move forward because ...."It what we have to do!"


My eldest son, drew my attention to something quite enlightening tonight after we returned home from church. The day was full of altercations. Tests of patience, a lack of energy, complaining and nagging.  (No it wasn't ALL coming from me!).  But once home, I received help to cook dinner. My youngest was settled not  resisting bath or dinner time. The house was quiet, no background noise, just our chatter. It was relaxing !   The eldest took great pride in pointing out how he thought, we needed to be at church tonight purely for the reason of, we were not appreciating each other.  It was a real stop and think moment.  Firstly for my "Aspie" son to point out such a compassionate assumption and secondly, that he was taking ownership for his actions, as well as alerting me to mine.
I am certainly not saying that our local parish healed our spirits... but I do feel; the upbeat gospel by our priest, loud, lively music by the youth band, the smiles and conversation with friends afterwards over coffee and milkshakes, taking time to be grateful. It has all made a difference. Sometimes these types of social situations can breathe new energy into your tired mind and body. I guess it was just the break from "Autism" or from "Parenting".  To just be a friend, or a voice or to feel like a "person", .... that helps to build up my "Inner Strength" to keep going.  
AND if I am strong, my children are at peace, and life feels balanced!

To my dear friend in her hour of grief, I hope she will, in time find some solace. I know her faith will be guiding her, while friends walk by her side, ready to listen.

A Strong Woman vs. A Woman Of Strength

A strong woman works out every day to keep her body in shape ...
but a woman of strength kneels in prayer to keep her soul in shape...

A strong woman isn't afraid of anything ...
but a woman of strength shows courage in the midst of her fear...

A strong woman won't let anyone get the best of her ...
but a woman of strength gives the best of her to everyone...

A strong woman makes mistakes and avoids the same in the future...
a woman of strength realises life's mistakes can also be God's blessings and uses them...

A strong woman walks sure footed ...
but a woman of strength knows God will catch her when she falls...

A strong woman wears the look of confidence on her face ...
but a woman of strength wears grace...

A strong woman has faith that she is strong enough for the journey ...
but a woman of strength has faith that it is in the journey that she will become strong...


Dedicated to a Strong Woman