Wednesday, March 24, 2010

Just ironing out the creases in my forehead.......



Good grief!  It's only day three in a whirl wind of a week around here (is there any other sort?).

Day one was the graduation ceremony for the business course I completed which was sponsored by The Wise foundation, The Body Shop and American Express.  Free business training to women with big ideas but not necessarily the means to fulfill them without a helping hand. See here for more info about Bizness Babes.

I am now in a much better position to get my business ideas off the ground and not only provide a brighter future for my boys but also eventually provide more access to the awareness raising stories I write for kids with special needs see here.

I had barely had time to reflect on the pride I felt at having been selected for that course and then completing it than after I literally just walked in the door from the graduation ceremony with two really tired boys after the car trip from HELL which involved traffic, meltdowns, emergency rescuing by my knight in shining armor (hubby came to my aid in a last minute dash to accompany me to the ceremony after a near nervous breakdown from me in that car from HELL via mobile phone begging for help).  So anyway, I'd literally just walked in the door and I received a phone call from Carers NSW informing me my last minute application to become a Carers Representative had been accepted and training for that role would be starting in a month's time See here for more information about Carers Representation.

Here is an explanation of the role from the Carers NSW website (above link):

"Carers NSW provides Carer Representation at all levels of government and non-government organisations, and to the media. Carer Representatives can be involved through guest speaking, committee meetings, forums and media interviews. The aim is to inform a range of professionals and general members of the community of carers’ perspectives.

Carers have the opportunity to participate as Carer Representatives and engage in policy planning and service decisions that affect them as individual carers; carers in general; in relation to the people they care for; and their families."

I received an email about 6 weeks ago from two of the services our family is involved with through the Autism therapy for the boys, suggesting I apply.  I initially did not want to do it as I am already struggling with time management but then after a few discussions with key helpers and mentors in my life I decided to give it a go and apply as after consideration I felt like I really would be suited to the role and it would help me voice the issues families living with disability and difference face on a broader platform which can only be a good thing?  Well at least I hope so.  I'm a firm believer in getting off your duff if something is not working in your life and doing your best to change it yourself.  Hokey isn't it?  I'm one of those people who want to make a difference.  Oh dear.  Sounds so trite but it is sincere.

I really don't like the world my boys are growing up in and the opportunities (or lack there of) for them so I do my best to change their world for them.  With regards to this role though it's about the family unit as a whole and I also do not like the lack of opportunity out there for the people who care for their children and loved ones who need it.  Our Prime Minister was recently asked on a morning television program about the lack of funding for carers and Mr Rudd replied that the federal govt had increased the carers allowance since he was elected and will continue to review the funding allocated to carers.  It's true.  The allowance has indeed been raised and I am grateful for it.  The $53 per week per child with a recognised disability/developmental delay is indeed helpful.  I used to earn roughly $60,000 per year in a part time employment arrangement which is no longer possible with the countless appointments, assessments, therapy and general parenting demands a child with an Autism Spectrum Disorder requires.  Clearly the $53 per week per child does not come close to even my part time earning potential and whilst I am grateful for any help it really is clear that families in our situation are desperate.  Yes desperate.  Not just in need of a helping hand but desperate.

It's also no secret that I think the respite situation for carers is not even close to adequate and many families I know personally have simply canceled their respite service after months and sometimes years of desperate (there is that word again) fighting to prove eligibility for any respite to begin with.  Why do they cancel the service?  Because it is inadequate in many cases.  Many respite workers are not specifically trained to deal with Autism in our case or whatever the specific need of the individual family is for that matter.  Most respite services do not look after siblings which can create massive organisation and family harmony problems whilst the respite worker is in the house (yes, this one is my own personal experience as I was only deemed eligible for respite for one of my children and was told repeatedly by the worker that she was only there to look after him, not both when my other son wanted to join in the fun and play with is brother too).  It boggles my mind why childcare/preschool cannot be claimed as respite up to the the allocated package allowance for younger children as it is possibly the only place that does indeed provide the promised respite with actually qualified and familiar workers who understand the needs of the individual  they are caring for best.  It would certainly solve the waiting list problems and help us already financially and emotionally desperate families (sorry but it really is the only word to adequately describe the situation of many of our families).

Seeing as I'm on a roll I'm about to bring up the golden nugget of things carers related in at least the Autism world right now.......  Autism funding.  The Federal Govt recently implemented the "Helping Children with Autism" package see here  which has been the sole reason my own children have received some partially funded top level private therapy over the last 18 months.  Did I mention I was grateful?  Oh my word am I grateful.  My sons have had access to world leaders in occupational therapy based on sensory integration which has been the reason for their phenomenal progress without a doubt.  see here for more information.  I am lucky enough to live near such world class providers of therapy but I do personally know one family (and there are thousands of them in reality) that had no such access to services in their regional home town so they actually picked up their lives and moved the family miles and miles away from their extended family and friendship support network to live closer to the services their son needs.  Such was their dedication and the dedication of all of us mums desperate to help our children.

So yes I am grateful for the funding allocated for my sons but I am also very conscious the funding is temporary and that I will have to come up with some means of affording this therapy on my own very very soon when their funding runs out.  It's also worth noting that whilst children under the age of 7 get access to this funding, what about the kids just turning 8, 9, 10, 11.......  The teenagers? The adults?  You get the idea...  What about those people living with Autism and their carers desperately trying to afford to pay for them to receive treatment to help them function in everyday life, improve communication or find employment and housing when us carers get too old or exhausted to continue caring for them?

There is also the guilt that many of us Autism mums have that we should not be complaining in the slightest seeing as at least we get SOME funding.  There are many many many other special needs that receive NOTHING in the way of funding and I simply cannot imagine how the carers of those kids put one foot in front of the other and keep a roof over the family's head because even with the funding my kids get we struggle (desperately).

There has been much talk recently (oh look, are we in an election year again already?) about the proposed increase in funding and all of a sudden I see the proposed ideas of the opposition govt and what they are about to promise if elected.  see here  The cynic in me cannot help but think it's an empty promise as so many of the election promises always seem to be but everyone has their reasons for choosing who they vote for and trust me, mine is very transparent.   I will vote for whoever throws the most money at Autism therefore, whoever will help my sons best.  Opposition leader, Tony Abbott recently put his foot in his mouth when he slipped up on camera and described women as "housewives of Australia doing the ironing." see here for entire comment and story regarding power bills going up and the govt's proposed trading emissions scheme

Ticking his box on the voting card does not really light my fire after such comments and many of his other public views on women's issues but as I said.....  I'll vote for my boys future first and foremost so will be watching the Autism funding based election promises of all parties with much interest.

However, if I should ever get the opportunity to meet Mr Abbott via my new role as a carers representative or via any other means actually I do ask that he forgives my disheveled appearance these days as the only thing I have time to or would even consider ironing are the creases in my forehead due to the stress, financial hardship and emotional strain my family lives with about every fight we have to embark upon and every battle we have to pick a side in to receive any hope of a crumb being thrown in our direction to help the special children we love (who anyone could have become a parent of in the great crap shoot of the genetic lottery and that my husband and I consider being big winners in incidentally and would not change for the world which is vastly different to us both wanting to change the actual world).

I would love to see education options improved for children with special needs seeing as this is a wealthy country and I was brought up to believe education was a basic right here but seems not really to be the case for kids of different learning abilities.  I would call it discrimination but the dept of education simply calls it lack of funding (well at least lack of funding for special needs... there seems to be quite a good deal of funding for improving the infrastructure and decor of schools lately).....  Here's a crazy thought from a perhaps crazy woman....  Hire more teachers aids, hire occupational therapists, hire speech therapists and hire additional school counselors in mainstream schools and instead of additional schools which are what we are constantly being told there is no money for, we can cater to children with additional needs within the mainstream system better and negate the need for building separate schools!  In the immortal words of one of my heroes, John Lennon, "you may say I'm a dreamer but I'm not the only one."  Surely?

Then again click on the link following for an example of a so called specialist class in NSW for children with Autism and it's really hard not to feel defeat that things will never improve, especially if you are the mother of a child at this school (as one of my friends is and recently fought very hard to improve her son's conditions so Bravo Tammy)! http://www.dailytelegraph.com.au/news/national/outrage-over-seven-hills-west-public-school-putting-autistic-kids-in-cage/story-e6freuzr-1225839691640

Deep breaths....  Then a big sigh.  Yep.  It's a massive job to try and change things.  Slow too.  It makes me crazy with frustration to consider how slow progress and change is to be made but no way am I throwing my hands in the air and giving up whilst I'm still able to breathe.  Slow change is better than no change so I'm up for the task and Carers NSW thinks I am too and is giving me the opportunity to raise my voice up.  Who knows how effective I'll be or how effective any of us asked to the role will be and who knows if raising our voices will make any difference but at least we are willing to give it a go.

Soooooooooooo anyway, did I mention that I'm now an official representative for carers in NSW (pending training completion next month which I am really looking forward to and yes my tongue is firmly in my cheek as I spout off the name of the role over and over again but yes I am also properly chuffed).

Yes an officially appointed representative instead of just a woman with a big mouth, a couple of committee positions, a PR & writing based freelance job to pay the bills when time allows (time, what time?), a fledgling business based on raising awareness for kids with special needs, a young family, a blog and a few facebook pages.  Why take on so much?  Easy answer.  My boys and their future.

Whilst there are surely many out there thinking the last thing they want to hear is more of me and my perhaps naive but definitely passionate views and some who are rolling their eyes because they might disagree with or disapprove of my approach or my opinions....  But!  Well in honesty, I'm proud to have been offered this opportunity and hopefully I can fulfill that really hokey ambition of making some kind of difference (however small it is or how slowly it happens).

Look out world, I am marking you for change and whether you love me or loathe me, I am not going away or shutting up any time soon.  My boys depend on this (as do I as their devoted and privileged carer).  Hope to do all my fellow desperate paddlers in our leaky old carer boat justice and please at least a few (most of all my boys) as I'm learning you simply can't please EVERYONE.

3 comments:

  1. There is more and more research that links many learning and developmental difficulties to poor communication and synchronisation between the two brain halves. An effective way of improving the processing functions in the brain is to listen to specially altered sound or music through headphones as pioneered by Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training - AIT).

    Now there is a new Sound Therapy Programme which has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning and it is entirely free to download and use at home. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

    Check out the Free Sound Therapy Home Programme from Sensory Activation Solutions. There is no catch, it's absolutely free and most importantly often effective. Find it at: http://www.uk.sascentre.com/uk_free.html.

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  2. *standing on chair applauding with hands high in the air*

    That's me. Applauding you.

    And you? Well you're doing it. Nice work indeed Ms Jary. We're a lucky bunch of parents for having you advocate for us, that is for sure.

    *still clapping*

    :)

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  3. Thanks.... That's me accepting the applause and taking the massive undertaking ahead into consideration. It's a massive and indeed huge honor to be deemed respnsible for speaking for all of the fabbo carers I've met along the way..... Hope the lot of you keep me honest and let me know how I'm doing. xoxo

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