Blogger has unclogged it's Blog !

Blogger has Unclogged it's Blog !

Yipee.... we are finally back in business!

Families search for Truth among Autism Treatments.

I found this article recently in the Sydney Morning herald newspaper.

I thought it raised some very interesting points.... especially about the need for parents to do as much as they can for their children's development... early.

"I've networked, I've researched and I've advocated. I do it because the more I do now, the less they'll need later,"
Mrs Taylor

Mrs Taylor has a very familiar sounding philosophy to many of us.

Families search for Truth among Autism Treatments

Julie Robotham

May 5, 2011

BETWEEN the sensory gym and the psychologist, the occupational therapist and the speech therapist, Belinda Taylor and her sons attend up to 15 appointments a week.

Christopher, 14, has tried fish oils, probiotics, elimination diets and massage therapies alongside regular medications in an attempt to manage his autism. His 10-year-old brother, Zachary, who has the related Asperger's syndrome, is enrolled in rugby league, after a recommendation contact sport might help his social development.

"I've networked, I've researched and I've advocated. I do it because the more I do now, the less they'll need later," said Mrs Taylor, referring to the belief that early treatment may improve her sons' development. Her main source of information is other parents, through support groups and Facebook communities.

The first Australian audit of the treatments given to children with autism shows the typical child uses between five and nine different therapies in a year - many of them expensive and scientifically unproven.

Mark Carter, from the Special Education Centre at Macquarie University, said 60 per cent of the 80 families polled in one of twin research projects used complementary or alternative medicines, with no solid evidence of their effectiveness.

Associate Professor Carter said it was of concern that the federal government funded techniques such as sensory integration therapy - based on a hypothesis that the brains of children with autism misinterpret information from their senses - via the occupational therapy component of its Helping Children with Autism support package.

Meanwhile, he said, children were not getting enough of intensive behavioural and educational therapies proven to make a difference. "There's no slam-dunk interventions," he said, "but we have interventions with strong evidence and those with no evidence at all."

About 30 per cent of children were fed a gluten- or casein-free diet, or both, said Associate Professor Carter, who presented his latest online survey last week at the Autism Spectrum Australia Research Forum. "That costs $30 to $120 a week, plus 10 to 20 hours buying and preparing foods. It's a big imposte on families."

Trevor Clark, the director of education and research at autism service provider Aspect, said some families believe they should try ''all and every treatment''.

''Some of the interventions are marketed very cleverly. They feed on families' vulnerability, and some are very expensive," he said.

Leslie Embersits, the director of Mindd Foundation, which promotes alternative therapies for developmental problems in children, said it was legitimate for parents to follow other families' advice. The government's research agenda was "locked in the behavioural paradigm", she said, and funds should be directed towards studies of nutritional treatments.

http://www.smh.com.au/national/families-search-for-truth-among-autism-treatments-20110504-1e8jf.html#ixzz1M0s7YOY3

I don't like Mondays!

I Don't Like Monday's....

When Monday morning finally arrives, it is the start of a new week. All the past challenging days are forgotten and it is a new beginning. Well that is how I usually look at Monday mornings. My youngest son has obviously decided that he doesn't think like me. He has taken it upon himself to challenge the powers that be.... being as difficult as he can possible aspire to at the beginning of the week. Today was one of those days.... full of challenging behaviour, squeals and continual disruptions. The frustrating thing is, my son is acting like any other normal child, testing limits and pushing proverbial buttons. Every parent knows this behaviour and I spoken of it before - the terrible two's. However when you are seven years old... this is not acceptable. Especially within a classroom setting. I really do have to acknowledge my son's persuasive talents. He knows exactly what actions to demonstrate when he doesn't want to do any work. He has taken to hugs, smooches on the cheek, cheeky looks, big smiles and "puppy-dog eyes", all to manipulate a situation to go in his favour. It has worked in the past, as everyone around him is sensitive to his Autistic traits, knowing it is tough, wanting to intervene before he hits melt-down mode. He has gotten time out of the classroom to retreat to the quite of the Learning Support Room.... equipped with mini golf games and ten pin bowling, magnetics and other cool stuff. Why would you want to be in a noisy classroom doing worksheets when you have that other option? Problem is as you can possible tell by now, he has worked out what to do.... to get him to the golden haven of fun games..... clever isn't he!

When arriving to school to pick up my children, I am approached by his beautiful teacher.... Miss D. She is a brilliant teacher. I hear about his day.... it isn't good. But Miss D and I have a history, she knows my family well (teaching my eldest son too). She knows I expect honesty and in return I am very open with her too. I think my son would be a complete nightmare to teach in the classroom. He would drive me nuts! But this is where Miss D and I differ. She has the "Patience of Jobe" as they say. She is kind and caring but also routined and persistent. He is challenging her and she is sticking to her guns, being firm, but calm, following through with consequences. Holding the routine and not budging from the line she has drawn in the sand!...... if my son thinks he is going to win this battle... he has chosen the wrong opponent. We discussed various ideas on how to curb his disruptive behaviours, both wanting to do the best thing for my son. I finally came to the conclusion that, I would support Miss D, in whatever ideas and strategies she decides to use. You see I am relying on her natural mothering skills and natural teaching rapport to connect with my son. Even though we are changing our attitudes at home, not compensating for my sons ASD traits, I am still learning to change my ways. It is very easy for a parent to do what they have to do... to cope or survive the day. In essence, the way you raise your kids is different from what would have happened if your children had been not Autistic. But, will this style of parenting really benefit your children, helping them in the long run to cope and understand real life? These train of thoughts were the reason behind our family learning about R.D.I . This therapy looked at quality of life.... not just coping skills.

So Miss D needs to follow her instincts with my full support. We need to reaffirm limits for my son. He needs to know that Miss D is his teacher and accept guidance from her. We joked yesterday how similar it was to control crying... but really Miss D has a mammoth task on her hands. Our school and supports are continually having to review and change ways to communicate and help my son. One strategy will work for a few weeks, but then all of a sudden it doesn't... and a change in thinking is required. I guess I am just really blessed that I have a school and network that is so willing to do this.

I believe that this is where parents and schools need to work on their partnerships, together building communication bridges to benefit everyone. This is why it is so important. I know my son would not receive this level of care anywhere else.... some schools would just not be financially capable of the aide time alone. Some teaching staff would not be able to rise to the challenge of my son. But in relationships, we learn from each other, we respect each other and we support each other. No matter what type of relationship you are in .... communication is the key. Honesty, integrity, trust, appreciation will come if built on communication. You really need this as a foundation. For a minute too, think what wonderful skills you are modelling to your children, by demonstrating these actions.

Disability Queensland Assessment

Disability Queensland Assessment.

Today my youngest son had his appointment with Disability Queensland.  The process goes something like this..... You have a child with a disability. You apply to Disability Services (government organisation) for help and support.  You wait 4 months for an appointment. Then you have an initial assessment.... by the way this is only a new format as in previous years you needed to fill out a  40 page document. This will determine whether or not your child is "disabled" enough to move through to the next level of assessment. Once you get through to this stage, then you need to wait and wait by the phone, until cob-webs grow under your arm-pits. Then and only then, you maybe lucky enough to receive a phone call, email or letter telling you that your disabled child's needs are not high enough to warrant any type of assistance.  I have not yet met anyone who is lucky enough to receive funding support from DSQ. Most of the families I know, have been through the process once or twice and simply do not bother to apply any more.  I have act been told by an advisor who works for DSQ, receiving funding or assistance is like winning the lotto - rare!

Pondering on the past week, experiencing the seizure, the sensory meltdowns (another area not seen as severe enough to be warranted as a dysfunction or disability)  I have been coming to the reality of my child's situation.  The therapy expenses are looming... so what do you do if you cannot afford therapy ?....... 
I guess your child just doesn't receive it!  
I think it is quite sad that we have, as a society, the means and ability to provide quality intervention for Autistic children.... we just cannot implement it because of red-tape and unrealistic funding guidelines.  Families in general do not have a stack of cash locked away to pay for therapy. Some therapist you can claim against... but they are generally so booked out, it's hard to access them. In fact with rising costs of fuel, utilities and groceries....everyone, especially in Brisbane since the floods that devastated our city at the beginning of the year, is feeling the pinch.  If Government agencies can can provide funds for political campaigns, lavish lunches, obscene bonus payout figures and other political perks used to buy voters... then why cannot they not provide funding for children who need help... help to support their disability ? Just to live day to day.  
Maybe changes should not be focussed on the disability sector.  We do live in a privileged country. Disability expenses should be provided without question or constant assessment. It should just happen, without parents having to feel constantly degraded asking for assistance. In the past 4 years I have had to find around $10,000- $20,000 (out-of-pocket) .... just to cover therapy costs for my two boys. I would hate to think of how lost my youngest child would be without that therapy and without the support network I have in place for him.  In my case.... it has been worth every cent!
Maybe the government needs to revisit the policies of Centrelink, the  C.S.A - Child Support Agency.. who allow parents to walk away from all financial and child rearing responsibility... (it is just way too easy to walk away now days) and constantly rising Private Health Expenses.  Australian families are really at a disadvantage not to have private health. The Public Health option means long waiting lists and the lacking availability of specialists to support special needs.  Maybe Government Ministers should not be focusing on Early Intervention as the solution for the large number of children who require assistance, but instead how the Australian Public Health system is letting these kids and their families down. My mind boggles at the thought processes made by some of these advising Departments.  For example.... presently millions have been invested into the HCWA package for families with children who have Autism... but only up to the age of 7 years.  A new and much needed initiative... yes.... of course!   But the agenda of this policy, is that this intervention will in fact... "cure" or suddenly change the level of need required by these children who do suffer from Autism... Do they honestly believe that this small amount of funding will transforming them magically into fully functional, independent children?  They must do.... otherwise why would they cut off ALL FUNDING AND SUPPORT after the child turns a particular age.  In fact this type of practice only causes the children and families.. more distress, creating more mental health statistics.  If Government advisors really knew anything about Autism they would know that therapy cannot stop.  It needs to be accessed constantly.  Children with Autism in most cases, are at a high risk of regression.... An analogy.... The driver cannot take their foot of the accelerator or the power to the car runs out and the car stops running!
It all sounds a bit bleak doesn't it?  Well this is the reality of the situation. This is life!
I guess at this point, parents have two options;
1.  Sit back, totally overwhelmed and give up trying to battle a system that is seemingly never going to change,
or
2.  Rise up and fight it. Rise up and find a way to pay for that therapy. Rise up and do what-ever you have to... what ever it takes.
What will you choose ?

For me....
I think my choice is obvious!

Happy Mothers Day

Happy Mothers Day

To all the beautiful and special Mother's all over the world, 

You are loved and appreciated always.
Have a blessed Mother's Day.

A MOTHER’S LOVE

A Mother’s love is something

that no on can explain,

It is made of deep devotion

and of sacrifice and pain,

It is endless and unselfish

and enduring come what may

For nothing can destroy it

or take that love away . . .

It is patient and forgiving

when all others are forsaking,

And it never fails or falters

even though the heart is breaking . . .

It believes beyond believing

when the world around condemns,

And it glows with all the beauty

of the rarest, brightest gems . . .

It is far beyond defining,

it defies all explanation,

And it still remains a secret

like the mysteries of creation . . .

A many splendid miracle

man cannot understand

And another wondrous evidence

of God’s tender guiding hand.

~Helen Steiner Rice~