Wednesday, December 30, 2015

Dear 2015

Dear 2015,

First of all I'd like to say fuck you and the horse you rode in on. This has been my hardest, most challenging most destructive year ever.

You have given my eldest son a new hell he has had to live through and a heavy burden to bear. You seemed to like to kick people who were already down in the dirt. Repeatedly.

You have created a divide in some relationships and built others. You have bought past ghosts into the present. I've had to both live new hells and revisit old hells that were buried deep inside me.

But I do have to give you one thing. You answered my biggest most possible prayer (not that I pray). Even though I thought in my mind this wish was never going to come true, it did, and it was everything I had hoped for and more. Though this wish has bought pain and sorrow, it has bought so much happiness and healing. Old wounds have left deep scars on my inner being but reopening them and talking them though has helped them heal in a more thorough way. December has proven that no matter how long you haven't seen someone special, deep connections never fade and can feel both new and old at the same time.

I recognise that 2016 is going to require a lot of work and negotiation to find a new normal that I hope all who I love very dearly can be happy with. Although I recognise I have had a lot of personal growth this year, more is on the way if I'm going to be able to move forward.

I welcome 2016 and it's challenges but I hope it will treat me gently.

Much love to those I hold very dearly.

Beck xxx

Tuesday, December 1, 2015

A simple question with a not so simple answer

"How are you?" it seems like a simple enough question, innocent and well-meaning enough. Is it a shop attendant? You fake smile and lie "fine thank you". You're there to buy a carton of milk, you're not actually talking to your psychologist who you're paying to have time to listen. But then a friend asks, are they a close friend and already has at least some idea of what's going on in your life right now? Even if they are, do you really want to be the "Debby Downer" bringing down the conversation describing your current struggles yet again like you did yesterday at the paediatrician? Sometimes I exhaust myself listing all our recent battles with our son. Surely it's exhausting to hear. Especially if it is someone you touch base with regularly, surely they're sick of hearing of ongoing struggles.

Even if you're feeling fine that day and not particularly worn down by recent events, the follow up question will kill it for sure. "How is X?" How am I supposed to answer how my chronically ill son is? "Oh much better" pppffftt right! We're lucky if he's well enough to attend a full week of school at the moment. Are you honestly prepared to hear that he's been so tired he could barely lift his head up long enough to eat his dinner or that he was so weak he couldn't climb up to his own bed for 3 nights and slept on a mattress on the floor? Or are you just trying to make normal, light-hearted conversation? There is nothing normal about my sons life, never has been and at the moment, nothing light-hearted either.

On the same hand I don't want you to not ask me about how he's going, to ignore him and what's going on there is ignoring a huge chunk of my life right now. It's not right to ignore our struggles just to make conversation easier.

You can't ask your friends with heathy children and normal lives to really actually 'get it'. You wouldn't wish this path on your worst enemy. You don't want to walk alone, yet you don't want to drag anyone else down with you, but there's very little choice, there's nothing joyful or uplifting about having a chronically ill child.

Sunday, November 1, 2015

Let's be MAD

Hi, YOU ARE INVITED TO BE MAD... to make a difference for Alex, an autistic boy, who needs Baymax, an assistant dog! Do you care and want to BE MAD with us?

CONVERSATION WITH:  Christine Lewis and Rebecca George 2nd November 2015

A MAD Women (Christine Lewis founder of and A Mum. About A Boy and A Dog.

Christine Lewis believes she is on the planet to BE MAD,that is,TO MAKE A DIFFERENCE to women and community. She has previously reached out to Missy Higgins, Tim Costello, Clare Bowditch who all think it’s great to BE MAD too. Christine recently crossed paths with a mother,Rebecca George who is desperate to unite her 8 year old autistic son who has epilepsy with a dog who can provide safety and independence.Together they are on a quest to BE MAD for Alex and they dare you to BE MAD too.Media, community, business – do you have what it takes to join the MAD quest?

Read the interview below to find out what this MADness is all about… If you have a connection to Media, Melbourne Herald Sun, TV News or anyone who would like to share this story with their audience please TAKE ACTION... spread the word and let us know that you want to BE MAD too.... 

Christine presented these following questions to Rebecca to gain a better understanding of this MAD situation…

Q: What’s Your Family Snapshot, of the George Family?
·     Married with 2 kids. Living in Cranbourne East,
Q: What’s The Problem?
·     There is no government funding and support for those who choose to use therapy aid dogs like Baymax.
·     There is a fundraiser event in less than 10 days and only a handful of tickets have been sold
·     Action, donation, attendance, media support need to help a family to raise $10,000+
·     Time is running out, there is no funding and a beautiful boy Alex needs Baymax the dog for his independence
Q: Where & When is the Event?
·     The Spaghetti Tree, 59 Bourke St, Melbourne
·     Friday 13th November @ 6.30pm
·     Cost: $50
·     Donate or buy tix at
Q: What do you need?
·     $10,000 to invest in Baymax, a dog who will be trained to assist Alex, my son with Autism
·     To sell tickets to the fundraising dinner so it is filled with compassionate people who want to support my quest
·     Donation of prizes to use as auction/raffle prizes.  Any help is appreciated; we have small $20 items and huge $800 items that have already been donated. No contribution is too big or too small.
·     Attend the event, the event can only be successful if people are there to bid on items, so far only a handful tickets have been sold.
·     Can’t make the event? Why not donate the cost of a cup of coffee instead? $5 isn’t much to some, but if everyone did it, we’d reach our goal in a heartbeat.

Q: Share three words to describe your 8 year old son Alex
         Happy! Even on his worst day, he will usually tell you he is 'awesome' or he has had an 'awesome' day.
         Determined! He's has a fighting spirit ; always puts in 110%; and always gives it all he's got.
         Intelligent! Even with his deficits, he can read any book you put in front of him, including encyclopaedias and he's been teaching himself electronics on YouTube. He can draw series and parallel circuits and I've caught him watching university lectures on electronics. How many 8 year olds do you know can do that?
Q: Why was the dog chosen as an aid and how can it help Alex.
·     Although we have tried lots of therapy, the dog will give my son the most important thing, independence. Baymax will give Alex independence and the ability to play with his peers. Due to the nature of his seizures, Alex cannot be trusted in the 'big kids' play ground where his classmates play as it is not constantly monitored.
·     It is hoped that Baymax will be trained enough to not allow Alex to walk past the school gates without a special command which he could only say if he is fully conscious. We want the dog to grow with Alex and perhaps even learn bus routes when he's old enough for high school.
Q: Tell us about Baymax, the dog.
·     Baymax is a dog, and language to describe his occupation are “medical aid/companion”, “therapy aid/companion” and “assistance companion”. His services will go well beyond any ordinary pet.
·     Dogs like Baymax are as medically relevant to children like Alex as guide dogs are to the blind.
·     Baymax is a 4 month old Black Labrador. He has lots of puppy energy and doesn’t like being left along.
·     Why a Labrador? They're smart and they're widely accepted as assistance dogs.
·     Disney fans or parents of young children will know that Baymax is a healthcare Robot from Disney's movie Big Hero 6.
Q: How does Alex feel when he is with the dog?
·     A connection is growing between my son and the dog.
·     At this early stage they are still forming a bond. Baymax has only been in our house 2 months and Alex takes a long time to form relationships. That being said, there have been a few sweet moments where you can see how connected they are.
Q: Describe your WISH LIST of auction prizes or business donations
·     'Getaway' items. People love the excuse to go away, so why not do it and help at the same time?
·     Secondly, maybe an experience of some kind, like hot air ballooning, v8 racecar hot laps, swim with the seals anything like that.
·     Thirdly maybe tickets to an event/festival or tour I don't think we're exactly going to get Taylor Swift tickets here but maybe a wine and cheese tour.
·     A farm to table produce tour or something similar. People tend to enjoy good wine/cheese/food especially if we can marry it up with some accommodation if it's a bit far away, I can see people going for it.
Q: What has been the best thing and most challenging thing about the Alex Fundraiser
The generosity and community support for sure. Those who have chosen to be involved have been very generous. These days in particular I think it's very hard to feel like there is a genuine community spirit that cares anymore. Big business doesn't tend to be very interested in the little guys so for instance when the local big corporation store manager offered to donate a brand new IPad air, I walked out of the store close to tears because I felt that someone really stuck out a limb for us.

Q: What has been the most challenging thing about the Alex Fundraiser
Trying to get people to understand that we are just a small family needing big help. We're not some massive organisation with a fundraising team and endless resources backing us. We have no corporate sponsorships or deals; I just decided I needed to make a really big run at doing something to hopefully get a big result.

Q: Why did you choose the Spaghetti Tree as your fundraising dinner venue?
 There were some personal factors and some practical factors involved in this decision. Practically speaking, it’s central and accessible to a large number of people. It’s in the city, near a train or tram station, The Spaghetti Tree is a 2 min walk from Parliament Station.
The personal aspect behind that choice is that the manager of the restaurant is an old university friend of mine. We haven't even spoken or seen each other for at least 10 years and I had no guarantee he still even worked there. But when I was starting to look at venues I thought I'd try this place first because I feel it's easier to work with someone I had some personal connection to. It just so happened that yes, he still works there and remembers me, so I guess a bonus has been renewing an old friendship while planning this. He has been a massive support in advocating for us and has bought one of his wine suppliers on board to provide free sparkling wine for the event.
·     Do you have an Autism network that you want to be acknowledged?
We are going to have a guest speaker from The I Can Network, who have been generous enough to give us a massive discount, so definitely a big shout out to them. Unfortunately organisations such as Amaze (Autism Victoria) are too under resourced to help.
Q: Is there any other comments you want to share?
Buy a ticket, lol!! In all seriousness, I really just want people to come along and have some fun. So many people go out on the town on a Fridaynight for dinner/drinks etc. so why not do it in a way that can help someone? You could pick up a massive auction bargain or even if you get tipsy and bid double the item value, I think that's part of the fun.

THE STORY written by A MUM               
DONATION PAGE:                                   
EVENT PAGE:                                          
INTERVIEW & MEDIA CONTACT:                    A MAD Woman: Christine Lewis 0438 379 450

Wednesday, July 22, 2015

Paws for a cause

So now Alex is on 3 different medications to help try and manage his issues of concentration, seizures and a few others.

I am always trying to think of new ways to help him. He tries so hard and has to go through a lot for a kid his age. I spend a lot of time researching medical and alternative therapies. By alternative therapies I mean supportive, proven therapies such as Occupational Therapy, Speech Therapy, Psychology, not dangerous Jenny Mccarthy nonsense such as chelation.

There have been lots of recent studies which have proven Autism Assistance dogs to be extremely useful as both a service dog, like they are used for the blind, and an emotional support for an Autistic person. The dog can help with safety issues such as wandering off (which we have been scared shitless by recently) the dog will circle the child repeatedly and bark to alert nearby adults that the child is attempting to wander.

Here's a brief excerpt from Wikipedia about some of the proven benefits:
Self-stimulationWill signal behavior to handler, handler may choose to stop (potentially harmful)
Self harmingWill interrupt behavior
Overstimulation/meltdown/shutdownDeep pressure tasks: step on foot, paws on lap, lie on handler
Poor balance/motor controlCounterbalance, brace for stability
DisorientationFind the car, go home, find other specified places
Auditory scene analysisAlert to important sounds
Visual processing problemsGuide work - steer around obstacles
To help prevent the child from wandering or running away.In addition to the above responses, there are three major ways a service dog can help, especially with children:
  • To help with self-soothing during melt-downs. The tactile stimulation, whether by petting, hugging, or having the dog actually lie on the child, can help the child learn the skills of calming themselves.
  • Socialization (including serving as a "social bridge", so as children and adults come over and ask about the dog, the child with autism is prompted to answer. The parent should not answer questions, but should refer all inquiries to the child. Thus with the dog, rather than having just the parent or teacher try to bring the child out of their own world, the entire community is talking to the child.)
A long-term study of service dogs and children with autism reported:
  • “Highly significant increase in pro-social behavior with a parallel decrease in self-absorption."
  • "Fewer autistic behaviors - examples include clicking noises, repetitive spinning or jumping or hand-posturing (stimming), and bolting or roaming."
  • "More socially-appropriate behaviors (such as reaching up for hugs, frequently imitating the therapist's actions, joining or initiating games).”
Autism Assistance dogs can be trained to help keep the child safe. With tracking the family is able to quickly find the child if they wander away and can't be seen. With tethering the family is able to enter the community with their child who has Autism safely. The parent is always in charge of the dog.
I believe an Autism Assistance dog could really benefit Alex. There are public programs which offer this but of course, as it is the case with most public programs, demand outweighs supply. There are programs where you can buy a puppy and do the training yourself, but that training is expensive.
I have set up a Go Fund Me page to attempt to raise enough funds to purchase and train a dog fro Alex.
Please visit and donate today.

Sunday, July 5, 2015

The Squeaky Wheel

I don't like whinge posts, I really don't but I think more needs to be said about the inequality in the disability world. I get better discounts for movies being with Telstra than being a carer, tell me what is right or fair about that picture?

The classification by the government of 'high income earners' is obscene. Where any household earning above $60k a year is excluded from a myriad of discounts and payments. While I don't exactly think we should be giving 'handouts' to the rich either, the means test is now just an income and assets test. It does not test your means at all. You can be earning $100,000 a year but if our outgoings are $98,000 a year because of necessary bills for food, education and therapy, you're not exactly the millionaire.

Being above the magical line cuts you off to more than just the Carer Payment. It denies you the pension card which then denies you access to discount energy bills, discount medicines, discount or in some cases free stamp duty, discount movie tickets, car registration the list goes on. I earn nothing, zip, zero dollars a year. What is my compensation for giving up any idea of a career of my own that could improve our family finances? Free entry to the zoo. I feel so rewarded. I get better rewards with Flybuys, and I rarely shop at Coles any more.

How is the 'household income' indicative of how much I sacrifice to put my childs needs first and everything else second? Sorry boss, I need to leave early because my child has had a seizure at school, yes I'm well aware he had a seizure last week and therapy the week before but I really need to leave this time too. Wrong answer, you're fired for being too unreliable. Is the teacher meant to leave the class and ride in the Ambulance to the ER? Maybe after school care will be up to date with all the speech therapy and OT techniques. Yeh, and pigs might fly.

I sacrifice my time and my future prospects so that my sons future prospects are brighter. So that instead of being a burden on society because he has no coping mechanisms, he may actually go to university and be a valuable and productive member of society. Think of the tax savings I'm giving you, the Government. Instead of needing government funding to stay in care for the rest of his life, I am spending my time to turn him into a tax paying citizen. And you think free admittance to the Aquarium is justified reparations?

Shame on you Martin Foley!

Wednesday, June 10, 2015

One giant leap

One small step for my little man and one giant leap into the future with my son on anti seizure medication.

I have to say I love the fact that we have a confident and knowledgable neurologist, Alex loved him too. I think he spent more time drawing parallel and serial circuits with Alex then he did talking to us. Not actually though, just seemingly because I was quietly sitting there both stunned and freaking out at the same time. Last August when we saw the same neurologist it seemed it took the entire appointment to twist his arm on an epilepsy diagnosis where as this time, I spent barely 2 minutes explaining how bad things had been lately and BAM! Medication.

I'm still trying to digest it all. Trying to stomach the fact of the swift and sudden changes Alex's seizures have taken. To deal with the utter fear when he walked off the grounds at school and walked off in a car park with me. To accept that medication is absolutely the best answer, but to have to face the reality that my 8 year old son actually needs anti seizure medication.

Week 1

No change - Blogspot ate my post.

Week 2

Mister is now on twice daily doses and still no improvement. I meet with his teacher next Friday to discuss if she's seen any change in the classroom. So far from brief discussions when I've seen her, there's been no change at school either. Next Tuesday we see the paediatrician, again, I will be attempting to push for an MRI as futile as my attempts so far have been, maybe if I ask enough, eventually someone will say yes.

Sorry for the short post this week, I am mentally, physically and emotionally exhausted.

Thursday, May 21, 2015

Has it really been nearly 2 years???

Has it really been nearly 2 years since my last post??? Holy moly! Well to catch you up a bit, Alex started mainstream at the start of last year. I found a fantastic school about 20 minutes drive (half hour in school traffic) that has really gone above and beyond to accommodate him. The teachers are all friendly and willing to communicate as need be and he's happy as a pig in mud.

We saw a neurologist roughly 12 months ago as Alex was having seizures roughly every 3 or so months and we managed to get a diagnosis of epilepsy and an epilepsy plan for the school. This wasn't easy as he's had at least 4 EEG's none of which have shown any indication of epilepsy but I pushed the point to the neurologist that the school needed an action plan,  so we got the diagnosis and the plan. Everything was travelling well until shit hit the fan recently.

Alex's seizures have taken a sudden and severe turn for the worse. He's having seizures if not every day, then every other day now. About a fortnight ago he had a complex partial seizure, which is kind of like sleep walking, where he walked out of school grounds through the school car park and down the street. Luckily a teacher leaving the school for lunch spotted him. He had no idea nor no memory of what he'd done. 

He's also had a few absence seizures and other CP seizures. He's in a day dream like state, almost like a zombie at least 70% of the time now, even his teacher from last year commented how his personality seems to have changed and he's just not with it. 
It's really stressful at home with Alex, trying to get him to "stay with it" I can't trust him while we're out because he can wander off in the blink of an eye. I'm really stressed about what's going on in his head. Googling just paints bad scenarios. 

He has the Neurologist on Monday, but I know that's just going to be the first step in a long journey of figuring out what's wrong, he's going to need an MRI, his paediatrician wants to see him. He's going to miss a fair bit of school. I'm not coping well, freaking out a lot I don't know how to handle this, 

We've had to make changes to Alex's school drop off and pick up routine which he's really unhappy about because it takes away his independence. Now instead of dropping him off near the gate and walking himself in, he has to be walked right up to his classroom door, and at pick up time, instead of meeting me under the shelter at the front of the school, I pick him up from the classroom. He is restricted to only playing in the front school playground because that's the only playground that has full time supervision and at play times and excursions, he has to wear a high visibility vest. It feels like I'm punishing him for something that's not his fault. At the same time though, I have to put his safety first.

He's even caught me off guard, yesterday at Bunnings, I took my eyes off him for a few moments to load the boot, next thing I look up and he's wandered off halfway across the car park and there's cars everywhere. I panicked, yelled at him an he got all upset. It's like I've got a 2 year old again, I can't trust him, not even for for a few seconds.

I don't know what the outcome of all these tests will be but I get the feeling we're in for another long, hard chapter.