I have moved my blog!

Hello! Just a note to let you know that I no longer update this blog - I have updated these posts on my new site www.myhometruths.com

Come and say hi, look forward to seeing you soon!

Kirsty

Autism Misinformation

I am really angry today - incredibly angry.  I just saw an article on the 1998 Wakefield study linking the MMR vaccination with Autism Spectrum Disorders (ASD) revealed as an elaborate fraud - Wakefield Study Fraud.  I am angry as this fraud has duped thousand of parents into believing the MMR vaccination could give their child autism so as a result they have decided not to protect their children from the potential deadly complications that can arise from some seemingly innocuous childhood diseases.  I am also angry as this fraudulent link gave more pain to families coming to terms with an ASD diagnosis by making them believe they were the cause of the ASD by giving their child the MMR vaccination.  This is a terrible outcome for thousands of families worldwide and especially sickening as it appears the claim should never have been published in the first place.

Now as a parent of a child with ASD I have never believed there was a link between ASD and the vaccination because if there was, I believe many more kids would have developed ASD after being vaccinated.  Many people believed in a possible link as it was a convenient explanation for the rise in diagnosed cases which increased around the same time the MMR vaccine was introduced.  Others attribute the rise in diagnosed cases to better detection and early intervention which I think is a more likely explanation - more high-functioning kids in particular are being diagnosed where previously they would have been considered just eccentric or odd.

I think it is vitally important to protect our kids from the potentially deadly complications of diseases like measles, polio and whooping cough but this supposed link spooked a lot of people into not vaccinating their children at all.  I had a whooping cough scare earlier this year when friends visited me and my new baby daughter in hospital.  A few weeks later it emerged their son had a persistent cough and was tested for whooping cough.  I was on edge while we waited for the results which, happily, returned a negative result.  As it was, my baby daughter was admitted to hospital at 5 weeks of age with bronchiolitis (another nasty bug for babies) so it was a stressful time for all of us.  I have had all my children vaccinated and hope that it does give them the protection they require against diseases which seemed close to eradication a decade ago but  have since started to reappear as a result of the dip in vaccination rates.

From my reading of other cases, it seems a lot of people first detected potential autistic traits in their kids at around 18 months of age.  In many cases, around this age kids lost their ability to talk and started showing signs of repetitive behaviours, obsessive interests and unreasonable rage when things didn't go their way.  It just so happens that the MMR vaccination is administered overseas at the age of 18 months which led many to question whether the changed behaviours were a result of the vaccine itself.  In Australia, the vaccination schedule is different and seems to change every few years which is another reason I never believed that any vaccine could 'cause' autism or autistic traits.  So this fraudulent claim just dumped yet another layer of guilt on the parents of kids diagnosed with an ASD as it suggested that the parents caused the ASD by trying to do the right thing and getting their kids vaccinated against common childhood diseases.  This was on top of other misguided beliefs such as ASD behaviours were the result of bad parenting or a result of complications in childbirth.... 

The debate (and my rage) has been further fuelled today by the distribution of an interview between journalist Tracey Spicer and the head of the Australian Vaccination Network (AVN), Meryl Dorey.  The AVN (based on information from their website) is an organisation that questions the validity of vaccinations and encourages parents to have an open mind and make an informed choice before getting their kids vaccinated.  The interview was held to discuss the Wakefield scandal and Dorey was asked to concede that the AVN's advice was based on flawed science and therefore wrong.  Dorey refused to concede this point and the interview was terminated. 

Yes, questions need to be raised about anything we give ourselves or our children (remember the relatively recent concerns about adminstering the swine flu vaccine to children?) and I support the bid to make parents better informed.  However, feeding people wilful misinformation is not the way to go about it.  In fact the AVN have been ordered to place a disclaimer on their website to advise parents they are anti-vaccination but have not yet complied with this order.  In addition, according to a Lateline report from earlier this year, they have also been accused of harassing the family of a baby who died of whooping cough because the parents have used the tragedy to encourage others to vaccinate themselves and their children. 

We owe it to ourselves and our kids to consider all aspects of this issue and to make an informed decision based on facts and not on hearsay or twisted research findings.  I respect parents who have reservations about vaccinating and who choose not to vaccinate.  I do not respect those who twist research findings and provide misleading information to vulnerable parents in order to pursue a one-eyed and potentially dangerous agenda.

We're all going on a summer holiday

Okay, call me mad, but in 3 days we are packing up the 3 kids and my in-laws and doing a road trip to Melbourne.  I am actually looking forward to it, I am going to a session of the Australian Open and going to do lots of fun things with the kids like catching trams, going to the zoo and the aquarium and just soaking up the distinctive Melbourne vibe.  I have been to Melbourne quite a number of times already, mainly flying visits for work, but I did travel there for a week of pleasure back in 1998 when I last attended the Australian Open.  It was an awesome week, although I do admit, by the end of it, my friend and I were heartily sick of each other...thankfully, years later, we're still the best of friends!

My husband and kids have never been there and I think they will love it.  Melbourne is one of those places I think I could relocate to without too much heartache (Brisbane also makes that list - it's a short one!).  It is old and fun and sporty and funky and modern all at the same time.  I love the hidden cafes and bars in the little laneways and the cobblestones, and, most importantly, the fact it's nothing like Sydney (which is a great place to visit but I would never, ever consider living there!)  We have rented a house in Elwood and I'm looking forward to easy visits into the city when the urge takes us as well as lazy days just hanging around St Kilda.  Sure we have to travel 2 full days to get there in a car with 3 kids but I am sure (fingers crossed!!!) that the trip will be more than worth the pain of listening to the same kids' CDs over and over and over again...

What about the other mad part of this scheme, I hear you ask, the fact we are going to voluntarily spend 2 weeks with the in-laws?  Sorry to disappoint those who love family fireworks, but I actually get on really well with my husband's parents and look forward to spending some quality time with them.  I can't deny I'm also looking forward to some rare alone time with my husband, something my in-laws have also promised to give us at times during our stay.  But I am genuinely looking forward to spending a rare family holiday with people that I really love and respect - and hopefully the mutual regard we have for one another will survive 2 weeks at close quarters...

My plan is to continue blogging while I'm away - it has actually been quite therapeutic for me so far.  Yes, there has been the stress of hitting on a suitable topic, the strain of formulating the right wording and the challenge of finding the time to gather my thoughts and actually write.  But I have really enjoyed the opportunity to think for myself and write about whatever takes my fancy.  Some would say the next step is to actually let people know that my blog exists and see whether anybody is interested in my random thoughts.  Hell, my husband doesn't even know that I have started a blog!  I'm still pretty self conscious about it all and to be honest it truly doesn't matter to me whether anyone ever reads what I write here.  I am just proud I have started and I really hope that I can continue....so, until next time....see ya!

When inspiration fails you....

I came into 2011 wanting to write a daily blog.  The first few days were fine, inspiration flowed....until tonight.  I feel quite flat and uninspired.  I am not sure whether it is the lag of not having a routine as everyone is home from school and at loose ends, or whether I have gone into holiday mode waiting for my upcoming Melbourne adventure to begin, or whether I am just bored - which I feel is quite a boring and unacceptable explanation!  Whatever the reason, not even watching my beloved tennis is helping shift my sense of ennui tonight.  I have resorted to playing around on Twitter and Facebook, unable to even update my status in any meaningful way as I am so freakin' bored and uninspired.  This is not something that happens to me very often.  I am reasonably energetic and as a wife and mother there is always something that needs to be done or planned for or cleaned up....you get the picture.  So on the rare occasions I have time to contemplate things for myself and I come up empty, it's pretty hard to take.

I've really been scraping the bottom of the barrel tonight - I even checked out whether Princess Mary had had her twins yet (that is quite an embarrassing admission), one I would hasten to add, would not normally have happened had I been more entertained and inspired! I have looked for more people to follow on Twitter and have actually looked properly at friends' photo albums on Facebook (I admit I am a dodgy friend and don't often take the time to look at others' albums...).  And it's always when you have all the time and opportunity in the world that you have no idea how to use it.  I am sure while I am being harassed by my adorable kids in the morning I will remember all these pages I need/want to check out - but can't think of any of them right now, when I have all the time and opportunity in the world.  In the iconic words of Alanis Morrisette, "Isn't it ironic, don't you think?"

So, while I am still bored and uninspired I will bid you adieu - I will try to spare you the need to read any more desperate and rambling confessions on how far I will go to find amusement....

N.B. Just laughed out loud at my husband, at his expense of course! Wish I could share that little bit of amusement with you but that might be a little embarassing for him...farewell!

Tennis, friendships & me

I played tennis tonight for the first time in months.  In keeping with my resolution to lose weight and do more exercise I thought I should accept the offer from a friend for a game with some friends of hers.  It was a great night, not only as I got to do some exercise and get those endorphins flowing, but more so as I met some lovely people.  As an adult it is not easy to make friends - we get set in our ways and tend to stick with those we've already made connections with - so meeting new people and finding an immediate connection with them is quite an achievement.  It was a strange evening as I knew I would be meeting new people and that I would only know the one person there but I was not at all worried about it (which is unusual as I do tend to be anxious sometimes when in similar situations).  But our shared interest and enjoyment of tennis was a great springboard for conversation, as was our shared experiences living in the same town.  I found I was not at all worried and was comfortable and relaxed.  It was a very enjoyable evening and I do hope I can repeat the experience again.

In fact, I have made a number of new friends in the last year or so, friends I know I will keep in the longterm.  Up to now I had my school friends, my work friends and my uni friends - they have been the mainstays of my social circle for over 15 years and I am very comfortable and happy in their company.  In the last year or so I have had to step up and befriend other parents of kids in classes and activities with my own kids.  Surprisingly, I have found a lot of common ground and true friendship with some of them which I am beginning to really cherish and enjoy.  It is widening my social circle and encouraging me to think in new ways, something that I didn't realise I needed.  While it has been challenging to establish connections with others again and go through all the uncertainties of early friendship, it has proved that it is worthwhile to invest in others even if you are comfortable with the friendships you already have.

Another platform I have utilised to make new friends is Twitter.  Now, I admit, I thought Twitter was a real waste of space when I first encountered it.  I thought it was a program for the self-indulgent and could not see any purpose to seemingly meaningless 140 character limit status updates.  It was not until our antenna came down just before the Australian federal election last year that I found what an amazing news service it provided for someone without TV reception.  Since then I have relied on Twitter to give me the most up-to-minute news updates and have found lots of people to follow with similar interests and points of view (and also those with opposing views to spice things up a bit!).  I have only recently started to fully interact with Twitter - you might laugh, but I was too self-conscious to really respond to others directly and to put my point of view out there.  But I am learning the etiquette of Twitter as I go and find following the various conversations between different "tweeps" hugely absorbing. 

Although I have no face-to-face friends on Twitter, I feel part of a community of people bonded by their love of the program, their need to interact in real-time with others and a shared passion for the power of social media.  This feeling of cameraderie is becoming more evident all the time, particularly when it perceived that a member of the community is being unfairly targeted or attacked.  Recent examples of this include the outing of an anonymous blogger by a mainstream journalist and an ongoing defamation case between an editor of a major Australian newspaper and a journalism academic who used Twitter to live-tweet details of a speech.  The support shown to the "tweeps" in these examples by their Twitter friends illustrate the real sense of community that has been established in what I once thought a self-indulgent and purposeless phenomenon. I am proud to be a member of this community and hope to further interact and befriend other like-minded people in the coming year.  Who knows, in time I could also make some real, long-term friendships as my understanding and interaction with Twitter improves.  I am finally ready and willing to enlarge my social circle and accept new ideas and viewpoints - it's got to make me a richer and more informed individual, doesn't it?

Master Six

My eldest son turns 7 in March and is a ball of energy all the time.  Apparently he has no stop button - trust me I have tried and failed to find one!  He is exceptionally bright and is forever asking questions which is quite exhausting for me as I am not as energetic as he...unfortunately.  His mind is amazing and I know the day is not too far away when his knowledge will completely outstrip mine - I am already struggling to provide adequate answers for his questions and, believe me, he will not take 'I don't know' as an answer.  He is a unique little boy and I wouldn't change him for the world, despite the other challenges his high-functioning autism and albinism pose.

Part of this thirst for knowledge is due to his high intelligence which is part of the autism.  The flip-side of this thirst for knowledge are the obsessions that take over everyday life.  My son's current obsessions are escalators, travelators, elevators, public telephones, pedestrian crossings, speed humps, street lights, road signs and ATMs.  Whenever these items are encountered we must stop and inspect them and talk about them incessantly and ask the same questions about them over and over again.  I would like him to find out how they work and have more purpose to his interest but for now he just wants to look at them and talk about them.  We'll see whether these obsessions can progress to more purposeful interests as he gets older and his need for knowledge deepens.

The autism is a challenge in many ways.  Even though he is high-functioning (which means he can communicate verbally and convey some idea of what he is feeling and thinking) he still doesn't understand social interaction and finds it difficult to talk to other kids.  He doesn't know what to say, how to hold a conversation or how to properly behave in social settings.  He is extremely literal and doesn't understand sarcasm or common phrases and when under stress loses his ability to control himself and convey his frustration verbally.  He can get upset over the tiniest change to routine - for example he raged at me in the car for half an hour the other day as I chose to travel home a different way - and can also lose his cool when he is denied something he wants (but hey, all kids are like that!).  On the plus side, he is affectionate, witty, talented at drawing and writing his own stories, an entertaining companion and, at heart, a really good little boy.  He adores his baby sister and also loves his other sister (when they're not fighting or annoying each other) and in many ways is just a regular nearly 7 year old boy.

He is also special as he has Occulocutaneous Albinism, a condition where he lacks pigmentation in his hair, skin and eyes.  He is lucky in some ways as the usual vision impairment that occurs with this condition is relatively mild - he is legally blind but he can read and does not require a cane or other aids to get around.  He has no long distance vision or depth perception though, which does cause problems for him, but he is still able to get around in the playground and navigate stairs (another strong interest for him!).  His natural enemy is the sun which is unfortunate as we live in one of the harshest environments here in Australia.  He wears long sleeves all year round, wears sunscreen constantly and has transitions lenses in his glasses to help with his sensitivity to glare.  He has a growing collections of hats and is being brought up to accept that these precautions are what he will always have to do in order to look after himself properly. 

Autism and Albinism are not ideal companions.  The basis of autism teaching and assistance are visual aides which can be a challenge for someone who is visually impaired.  Conversely, a common strategy used for those with a vision impairment is to listen to the spoken word, particularly where increasing a font size or enlarging print is not an option.  Unfortunately, a common problem with autism is an auditory processing disorder which means it is difficult for those with autism to concentrate on what is said without some visual or other support.  These issues are not insurmountable but they will be constant challenges for us and for our son as we continue our journey together. 

We have been blessed with the support of the Royal Institute for Deaf & Blind Children for providing early intervention for his vision impairment and the continuing assistance of Autism Spectrum Australia for giving him an autism specific education while we work on integrating him into the mainstream achooling system.  Hopefully, if all goes well, we will see our son integrated by the end of this year which would be an awesome result for a special little boy who faces many challenges but who rises to each one and makes both his mother and father extremely proud.  As I said earlier, despite everything I wouldn't change him for the world - I just hope I can guide him and protect him and do everything I humanly can to maximise his strengths and give him the best chance to have the incredible life he deserves.

Kids these days....

I was quite saddened and disturbed to wake up to the news this morning that a toddler had been stabbed to death (possibly by one of their parents) and that another had been accidentally run over by their father and killed.  As a parent of 3 kids aged 6 years, 5 years and 8 months, these stories always make me sick to the stomach.  I often question whether I am too overprotective of my kids but hearing stories like this and others about children abused by care givers or those vulnerable to abuse makes me want to protect them even more.  If anything ever happened to my kids that I either caused, or could have prevented, it would haunt me for the rest of my life.  I can't believe that others clearly do not feel the same - how can people perpetrate such terrible acts on kids?  It's the fear that I may not be able to stop something terrible happening to my children that sometimes keeps me up at night and disturbs my dreams - so these stories really do touch a chord in me.  Although unpalatable to hear, I hope such stories make us all hold our kids a little tighter and make us more grateful that we have them in our lives.

As I said earlier, I do wonder whether I am too overprotective of my kids.  I can remember riding on my bike all round the streets near my house for hours on end, only returning home to grab something to eat or for toilet breaks.  When I think back now, my parents gave me so much freedom to explore the world around me, something I am not sure I'll be able to give my kids when they get a little older.  I would visit nearby friends, sit down in a park and read a book, ride to the pool, walk to the shops, anything that took my fancy really.  I am not sure whether I would have had those same experiences in today's litigious and paranoid world.  I can only hope I can give my kids a similar degree of freedom as they grow older, but I do seriously doubt it.

Reminiscing about my own childhood also led me to reflect on the materiality of life these days.  For instance, my older kids each got a digital camera for christmas - I think I got my first camera when I was a teenager, and from memory, I helped pay for it too!  Some kids of a similar age also have mobile phones or handheld gaming devices or ipods - it's overwhelming to think of all the technology and gadgets available to kids these days.  Technology and it's affordability is the key but I often wonder whether they would be better off with the simple outdoor toys and games I had in my youth. God, I sound old sprouting off like that, but I really do think it is true.  So this year for christmas my kids also got a lot of cheap and simple things like frisbees, bubbles, foam swords (my husband's idea...!!!), kites and water pistols to encourage some more outdoor fun and games.  They have loved them and I'm hoping they will continue to lure them away from the DVD player and the Xbox during these school holidays.

So we need to look after our kids in this new world where there is so much happening and so many things to attract their interest.  Hopefully the simple things will eventually prevail and we'll bring them up to make the right choices and to explore the world safely.  On that note, I will go and give each of my kids a kiss as they lay sleeping and bid you all a very good night.