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!

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5 thoughts on “A Round Up of April and May.

  1. Great wrap up, it’s interesting reading all your adventures! I’m hoping to attend the Kalparrin talk. Are you going to the retreat?

    Yes, I think most of the time we only think about expenses for home and family, and it’s amazing how little funding there is for schools. My son’s school doesn’t get enough to put an aide in his class. So we’re crossing our eyes, fingers, and toes (lol) and holding our breaths as we wait to see if RockyBay or other can help us out in school.

    Sometimes I wish I could raise funds for his in-school aide! I’d probably need to raise over $40K per year to cover their salary or quit my job and be his aide!!

    We received the expense questionnaire. We also went on the first visit for the Murdoch study but then chose not to continue because at the moment our 5yo is seeing enough people to confuse him, and I didn’t want to add one more to cram up our busy week.

    June looks full for us too, and time is flying too quickly!!! x

    Sorry, long!

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