Going Primal! 

I am honestly enjoying the process of writing my book so much and I’m super excited to see it coming together. A huge thank you to all of you who have been cheering me on! The following is an extract from the book that I wanted to share with you. The Chapter is entitled: Going Primal! 

Here goes….

My normally laid back and easy going self switched into a different gear, one I didn’t know I had. Kiddo at sixteen months of age was different to how he had been three months ago and I was overcome with a primal determination to find out why. Once a Mama goes primal- watch out! 

The answer that was slowly dawning on me was that autism had happened, or was happening. People have said things to me like ‘well, a Mother just knows’ and ‘you have a teaching degree, of course you knew what to look for.’

Both are incorrect. I didn’t ‘just know’. Infact I knew nothing about child development.  As for the teaching degree I had majored in social science and religion for high school aged teens. A world away from infants and their behavior. 

My formal counseling training in self awareness and self reflection was the one part of my educational background that helped me a lot on the road to a formal diagnosis. I had learned to examine my thought processes, record them and know that I could really trust them, and therefore trust myself.

I was going to rely heavily on this skill over the next few months as there would be many educated health professionals that would lead me to second guess myself. 

I would hear things like ‘lets just wait and see’ and ‘he is just being a boy’. Also ‘you are being an overly anxious first time mother’ and my personal favorite ‘your child does not have autism… If he has autism I will eat my hat’.

That assessment came from a medical doctor.

Well- That’s it! …. Just a small sound bite from the book. A short post I know- but I also needed a reason to share with you this gorgeous pic of Kiddo I took recently  Xx Kaz

Ps – have a great week !

 

A Round Up of April and May.

The last two months have been a busy and interesting mish-mash of events.

Lego Time: Daddy and Kiddo

Lego Time: Daddy and Kiddo

There has been a lot going on autism-wise.  I completed a very detailed research questionnaire conducted by the Curtin University of Western Australia about the expense involved in raising a child with autism.    I was appreciative that this topic was (and is) being considered in a formal way.  In terms of how much it has cost our family to raise our son in the past few years the short answer is: a lot.   The long answer would have to be a topic for another blog post.  A few weeks later I met with the researchers (three of them) conducting the survey to talk and give feedback about the ‘Expenses’  questionnaire and talk about other research projects they have on the go.  Two in particular were discussed, the first was community mobility and public transport use in adults with autism or Asperger’s Syndrome (contact tania.barnett@student.curtin.edu.au if you or your adult child want to be involved in this study).   The researchers were particularly interested in the role social media might play in helping them ‘make contact’ with adults on the spectrum who might want to contribute to the study.  So they asked questions about my blog, who reads it etc as well as my other ventures into social media such as online support groups.

Expenses Questionnaire

Expenses Questionnaire

The second topic we discussed was the early detection and formal diagnosis of autism.  I was so touched by the keen interest of these  researchers in hearing my ‘journey’ from the early detection signs to the formal diagnosis of autism for my son.  Those first six months of 2009 are etched in my brain forever, and I have analysed events from every possible angle over the past four years.  A few psychologists have shown some interest over the years, but I have never had anyone ask about the tiny details, each and every step, my thought processes and the intense struggle of that year.  To be honest it was incredibly therapeutic to talk about my experiences with people who may be able to turn the ‘story’ of my family and my Kiddo into something that could assist other families.

I have also recently been involved in another research project called the PRISM study by run Dr Andrew Whitehouse and his team at the  Telethon Institute for Child Health Research.  This study consists of pregnant mothers who have a child/ren with autism.  No surprises as to what these researchers might be looking for!  For more info see the website http://www.childhealthresearch.org.au. So far I have had three scans, my hubby and I have completed a number of IQ-type tests,  given blood and saliva samples, and our son has completed two autism assessments (the ADOS and the Mullen).  I believe cord blood will be collected at the birth of my second child (a mere five weeks away now!), and her (yes, its a girl!) development tracked for two years after birth.  I have mixed emotions about being involved in a study like this one. Dare I say an exploration of that topic would have to be in (yet another) blog!

I should add here my second pregnancy has been (in a good way) entirely uneventful.  The back pain is no fun right now.  The frequent bathroom breaks are annoying.  I feel tired a lot.  But other than that-its been ‘drama-free’ and gone by quickly.  To be honest, it feels like a carbon copy of the pregnancy I had with my son.  My hubby and I (supported by his school) have started preparing our son for his new sibling.  This included school making a gorgeous reading book for him.  The baby sister drawing by Kiddo on the front is too cute!

A special book for Kiddo

A special book for Kiddo

I feel an overwhelming sense of delight at the thought of my son meeting and having a baby sister.  Coolest.Thing.Ever! This child will also round out our family to one of four.  Hubby had a vasectomy last week, and the jokes are abounding in this house at the moment.  Also Kiddo thinks two adults groaning (one with back pain and the other groin pain)  every time they get up is cause for hysterical laughter.  His line: ”groan-again mummy, say that “aarggghhh” noise again-daddy-hahahahahahahaha!!!  And just like that, the child bearing years are over.

On a less eventful note I also attended a school funding forum yesterday (yes, with my dodgy back suffering on a most uncomfortable chair) discussing continued funding for children in schools with disabilities.  It was really targeted at school educators and administrators.  The Federal government funding is called More Support for Students with Disabilities or MSSD.  Always gotta have an acronym!  Basically the schools who had received these funds in the last round of funding had to present (justify) the expenditure, and also make a presentation that would hopefully secure more funding for the future.  My son’s school was one presenting.  I was asked to give a parent perspective, but then later I was not needed.  (I will however post my little speech for you to read about my son’s school).  I came away from that forum thinking its not just the parents who have to fight for and justify the funding and support they need for their own children, but the professionals who work in this field also have the same struggles.  Money. Seems to be a theme in disability.

The theme continued at a Federal level with the Budget being introduced this month and it included funding the NDIS, now renamed Disability Care.  The PM then introduced the legislation to Parliament, and did so in tears.  Now the WA State Premier appears to be the last one holding out on signing up to this scheme of universal care and support for eligible people with disabilities.  I will, along with the rest of  those concerned about such things in this State and nation, stay tuned for the WA Premier’s next move.

And that’s about it.  I have a little talk lined up for the end of this month at the disability support organisation Kalparrin- see http://www.kalparrin.org.au.  My son is travelling along nicely, and gets funnier by the week.  Seriously, I need to start writing down some of the hilarious things he says and does to share with the blogosphere sometime soon.  So basically out of this one post I think I have another given myself another four or five to write…  But then again I just might have new topics to write about once June rolls around, bringing with it the great pleasure of meeting my little girl.  Happy days!

Taking a Leap of Faith

This week I did something I don’t normally do.  I attended a community presentation/discussion forum about the Australian legislation relating to a National Disability Insurance Scheme (NDIS).  Basically this is about a nationalised system of funding to provide care, supports and services to people with disability across the country.  To date the disability ‘system’ in this nation is described by our own Prime Minister as ‘piecemeal, fragmented and underfunded.’  I believe a significant change is a good thing, and I share the PM’s view about the state of disability in this nation.   I did however need someone to unpack the fine print in the NDIS for me.

Well, attending the forum did this.  The presenters were from DDC and PWDWA (see links below for info on these organisations) and did a really good job at ‘unpacking’ and opening up key areas for discussion, as well as keeping the whole afternoon ‘moving’ along at a nice pace.  Key areas discussed included criteria for eligibility, early intervention, and the nature of the so-called ‘Agency’ appointed to oversee  what has been termed ‘care plans’ (basically what support, services and funding will be allocated for each person eligible) .  There was discussion about the principles relating to these ‘care plans’, whether the role of advocacy needed to be included in the legislation, and what constitutes ‘reasonable and necessary supports’ for people with disability.  See these links for an outline on the key parts of the legislation: http://ddc.org.au/news-ndis/ and http://www.pwdwa.org/.

From the comments and discussions it was evident where people’s passions and concerns lay…There were those with disabilities themselves, some had a special interest in advocating for adults with an intellectual disability, others wanted to advocate for the needs of their own children after they had passed away.  I (one of the younger ones in attendance!) wanted to know about early intervention, possible funding for those children ‘at risk’ of autism, and how the NDIS and the Education sector would interface.  On this point I got ‘fired up’ when outlining my concerns…don’t even get me started…it’s seriously like winding up a jack in the box!

The presenter did a good  job with all of us ‘fired up and vocal ones’ and I was told that in relation to Education and the NDIS the ‘interface’ was not clear…but she said she would follow it up and let me know on this point.

One small remark made by the presenter stuck with me more than any other…it was that ‘we are putting a lot of faith in this legislation.’

Then I had a flashback to my days as an undergraduate studying politics at University.  The Founding Fathers of the Australian Constitution intended for that document to reflect their desire to keep the power with the States and keep a check on having a powerful centralised government.  Would those men ever be shocked now at how the Australian Constitution has been interpreted by the High Court over the past two centuries.  This, along with a number of other factors, has seen the power shift over time from the states to what is now a powerful centralised federal government.

I wonder what history will reveal about this disability legislation? Will successive governments remain true to the intentions of giving people with disability the support and care they need to live their lives …or will there be cost cutting, scrimping during tough economic times, hand balling, exclusions and excuses.   Ultimately, will people with disability and their loved ones be left better off or worse off?   In my cynical moments I wonder how Australia’s care and provision for people with disability could honestly get any worse. I get the feeling with this NDIS legislation that the ‘train has left the station’.

Maybe our job now is to take a leap of faith .  Maybe only the passing of the decades will reveal if Australia remains true to the original intentions of the legislation.  How will the High Court rule when the legislation is challenged? How will the NDIS ‘Agency’ and ‘CEO’ outlined within the legislation decide what each person needs?  Will people with disability and their loved ones truly experience a better quality of life? Who will speak for and advocate for the many, many people with disabilities who literally cannot speak for themselves?   Who will decide what is in their best interests?  I’m trusting that agencies like DDC and PWDWA and the countless others will do their best work and ensure that good outcomes come from this legislation, from this government and from the governments to come.

A complete roll out of the scheme is not scheduled until 2018.  The ‘little baby in mummy’s tummy’ (as my son says!) will be getting ready for school in 2018.  My first born will be on the cusp of high school.  Its a little while off but in this NDIS legislation lies the hope for a better future for ALL  Australians.  In it lies the hope of a global disability community…one that looks to prosperous, developed counties like Australia to give people their basic human rights and be responsible on the world stage.

I’m hopeful that things will BE better because I KNOW this nation can DO better…

And on that note…I hope you all had (or are still having) a Happy Australia Day folks!

Kangaroo with flag pic

Sitting in a Waiting Room

I seem to spend a bit of time in waiting rooms.

Recently I picked up a copy of ‘In Psych’ – June 2012 magazine whilst in one of those waiting rooms to have a look at. Lo and behold I opened to the following: ‘The trouble with autism: Delays in early identification and diagnosis’.

Seriously, what are the odds?!

Written by Associate Professor Cheryl Dissanayake, the article outlined the results from a study that set out to identify infants with ASD (Autism Spectrum Disorder) between 12 and 24 months of age.

Currently the mean age for diagnosis in Australia is 4 years of age. For some children on the spectrum who are verbal and cognitively able identification can be later. Speaking from experience, accurately identifying autism in a young child is absolutely not an easy task. There can also feelings of distress and guilt experienced when a diagnosis is not made in a timely manner.

Having a ‘better system’ of identification for ASD’s would be a game-changer for countless families and their children.

So back to the study…241 nurses were trained in Victoria, Australia in a 2.5 hour session to identify infants with an ASD during their routine check-ups at 8 months, 12 months, 18 months and 24 months of age.

It was termed ‘developmental surveillance’. I like that term.

Over 20, 000 children were seen by these nurses. Of the children referred by the nurses for a standardized assessment, 81% met the criteria for autism. Only one child was incorrectly referred and the remaining children had either a developmental or language delay. A follow up study at preschool age indicated a rate of 86% in terms of diagnostic stability.

I think those results are pretty amazing.

The author states that ‘the earlier this (accurate diagnosis of autism) is possible, the more likely the child will be able to make the necessary developmental gains.’ This point is highlighted in the article:

‘The importance of education about early characteristics of ASD and the value of early identification, diagnosis and intervention cannot be underestimated.’

The author continues, ‘Indeed, early identification, diagnosis and intervention provides the greatest opportunity for better long-term outcomes, including greater independence, decreased burden on families and communities as a whole, and better quality of life for individuals and their families.’

That paragraph captures a simple concept. We have an opportunity to make a big difference.

Education is key and the message from this research study is clear: do not delay.

So here they are: 8 key signs in the second year of life (12 to 24 months) indicating risk of autism (as stated in the above mentioned article):

  1. Reduced or atypical eye contact
  2. Failure to couple eye contact with other communicative behaviour, like smiles
  3. Reduced social smiles
  4. Failure to initiate pointing, particularly to show/share
  5. Failure to follow a point
  6. Reduced to no response to name call
  7. Lack of imitative behaviours, including waving bye-bye etc
  8. Limited or no pretend play

To view the ‘M-CHAT’, a modified checklist for autism in toddlers, go to

http://www.autismspeaks.org/what-autism/diagnosis/mchat