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Saturday, June 18, 2011

Heraldsun... Victorian Newspaper: Only US school can help our son

Only US school can help our son.

Evonne Barry     Herald Sun     June 18, 2011 12:00AM

  • From:

  • Parents of some special needs children say public schools have been failing them. The Daily Telegraph
    A MELBOURNE family is moving to the US for "emergency education" because it believes the Victorian school system has failed their 11-year-old son.
    The autistic boy is from one of at least nine families suing the Education Department through the Federal Court for discrimination and what they claim is inadequate education.
    Some families say they have spent up to $100,000 on therapy, tutoring and legal fees in their bids to get their "left behind" disabled children up to speed.
    While experts warn parents their court battles could come with big financial and psychological costs, the desperate mums and dads say legal action has become a last resort.
    The mother moving her family to the US next month said she sent her "severely autistic" son to three Melbourne schools before researching overseas options.
    The family will continue Federal Court action against the Education Department after settling in a US school that specialises in teaching autistic children.
    "It's very hard going to court, but it's also very hard not to. We're hoping to avoid a ghastly outcome for our son," the mother said.
    "It's a pretty lonely life for him at the moment. He does not have grade-five language and he doesn't have much confidence around his peers. But he's a learner, so we're excited about him making progress."
    Documents lodged with the Federal Court show the family's claims include expenses for "emergency education" in the US.
    Other students with discrimination cases in the Federal Court include:
    A GIRL, 13, with several diagnosed learning disabilities who, according to her mother, has been denied funding for an aide despite "having the reading and writing skills of a grade one (student)".
    A BOY, 16, allegedly suffering low self-esteem, anxiety, bullying and victimisation because his learning difficulties were not properly addressed by a Melbourne high school.
    Bendigo mother Anne Maree Stewart is also considering legal action against the state education system. She claims her son Matthew, 9, who has a form of autism called Asperger's syndrome, has at times been "treated like a piece of dirt" because of his disability.
    Children with a Disability Australia executive officer Stephanie Gotlib said education standards were the chief concern for parents of disabled children.
    But child psychologist Michael Carr-Gregg urged parents to think carefully about legal action.
    "I can certainly understand their frustration. But the psychological impact of having your shortcomings paraded in the public arena may not be in the best interests of these kids."
    An Education Department spokeswoman said its $550 million Program for Students with Disabilities supported 20,000 students.
    barrye@heraldsun.com.au
    The following are only a few examples of the comments found in response to this particular story.  Please go to the following link to view all. Everyone has the right to their own opinion despite how we feel personally. Let's not be judgemental!


    K of Carrum Downs 
    Posted at 7:49 AM Today
    My family has had a similar experience with the Education Department. We took our battle to our local minister who heard our concerns but did nothing. Our son also has Asperger's and has been refused aid. We have had to pay for additional tutoring twice a week to ensure he keeps up as he does not get the support he needs in the class room. Our son's school has let us all down and when we looked at alternative schools, one school said 'we have got enough problem students of our own'. The department does not support those children who are fit for main stream school but need that extra assistance and support.
    Comment 2 of 41

    Adrian of mildura 
    Posted at 8:21 AM Today
    It is sad that families are forced into such situations in this day and age. However mainstream education is designed to handle the masses and is unable to cater for every child. Children with very specific needs will struggle with 'normal' classes, and in special cases, special facilities are needed.Public education is neither designed or funded to handle these extreme cases.My son has mild Asperger's syndrome and although his teachers are dedicated, caring and hard working they have 26 kids to worry,care, and cater for. Special treatment is given but, we as parents need to be active and participate in the classroom environment, sit in, provide support and in the end not expect the education system to provide all the answers. Our children are special and although we may wish to normalise them they will never be normal and will always be very special, they are who they are. Good luck in the US but dont be suprised if their system has similar issues, reagrdless of how special the facility.
    Comment 4 of 41

    Mim of Melbourne 
    Posted at 8:26 AM Today
    Fiona of Melbourne, How selfish are you...Every child has the right to an education. Perhaps if you had a child with special needs you would feel very differently. I am a grandmother with an Autistic granddaughter who is yet to start school and a granddaughter with Asperger's who is currently in prep and way ahead of all the other children in her class. I am extremely proud of both my angels.
    Comment 6 of 41

    TD of Drouin 
    Posted at 8:33 AM Today
    There are some ignorant people out there , Children with additional needs have a right to be in main stream school. My son who is 18 as additional needs and over the years hes been let down by the public system. Parents with out a child with additional needs donot understand the stress and grief we go through everyday. Put yourself in our lives .
    Comment 11 of 41

    Marco of Polo Posted at 8:05 AM Today
    Why didn't they just enroll their kids into specialist Autism Schools? There's a few dotted around Australia. No need to go to the US.
    Comment 3 of 41

    Soft Parenting of Melbourne Posted at 8:25 AM Today
    Amazing how many student's now have 'so called' learning disabilities! 95% of the problem is the parent's not taking time to teach and discipline THEIR children. Clearly there are children out there who do need help and deserve it but for the most part it's a massive cop out. Too many student's have NO respect for teacher's and this start's in the home! Parent's need to take far more responsibilty for their child and stop blaming the education system for their inept parenting!
    Comment 5 of 41

    Friday, June 17, 2011

    HOW TO PREPARE FOR TONSILS, HOSPITALS AND AUTISM ? Step 2.

    HOW TO PREPARE FOR TONSILS, HOSPITALS AND AUTISM ?
    Step 2.

    O.k... I have confirmed all the respite to begin a week after my son's operation.
    I have stocked up on necessary items for the pantry as I know I won't be able to just pop out and buy food. I've loaded my medicine kit with Panadol and Painstop.
    The "Wine-cupboard" has been fully stocked for quite some time now...  so I'm set there!
    My older son is going to my best friend while all this is happening. She will be looking after  the school run while I'm in the hospital.  The boy's school has been given all necessary paperwork and information. I signed all the consent forms... crossing the t's and dotting the i's.  Sounds all a bit too much hey... but what my reality is, being a single mum, I do not have the back up to quickly drive down to the shops to buy bread or more medicine. I know I will be house bound for a least a week. After that first 7 days,  the respite kicks in.... I will get a few hours to myself to go for a run or go and do some grocery shopping. And it's not just the youngest I needed to prepare for. I had to make certain all my eldest son's commitments and assignments were up to date. All my school commitments were ahead of schedule, all appointments reorganised and medication filled.  
    At times I wonder about those families without children on the Autistic Spectrum. I do not think they realise how much effort, planning and organising is involved in just "raising" kids like mine. Remember Tony Attwood's quote ?  "1:16 children".... that is what it is like, and I consider myself lucky compared to others. The energy, time, commitment... all involved in caring for 1 ASD child. No wonder why I constantly feel like I have been shoved into a washing machine and been set on the long cycle!
    Anyway back to the plans.........I have organised Ipads, Ipods, his D.S, colouring in books, stories and a few other things to distract my youngest before and after surgery. I have to preempt all of this, as I do not want to be caught out with a melt-down... eventuating in a rupture of his throat. We have movies up to our eyeballs, so the hospital staff had better be prepared for my son blurting out Spanish phrases from his favourite Dora and Diego DVDs for our entire stay.  I have heaps of straws for sipping fluids and even bought ice-cream to try him on.  You never know.
    Ahhhhhh!
      
    I'm starting to think that after all this has passed I am going to need a nice, short, break somewhere. Maybe to a place where children are not allowed? 

    Thursday, June 16, 2011

    HOW TO PREPARE FOR TONSILS, HOSPITALS AND AUTISM ?

    HOW TO PREPARE FOR TONSILS, HOSPITALS AND AUTISM ?
    Step 1.

    Call your Ear Nose and Throat specialists to confirm all details and Hospital admission times.
    Also ask what drugs you can give your child to stay on top of a head cold if they start getting sick 4 days before the operation....
    AGGHHHHHH!


    Find out what time the actual Adenotonsillectomy is ?


    Here I was thinking the hardest part of all this would be the boy going under and then coming out of the aesthetic.
    When checking on the admission time, at 6.45am..... I was told he is 4th on the list. That means his actual operation time should be somewhere between 10.30am-11.00am.  He is fasting as of 2am that morning.  
    Dang!  
    Keeping food and water away from him is going to be a nightmare !
    When my boy needs to eat.... he needs to eat and look out whoever is in his way!

                       


    Finally.... I have been told it will be better to wait and talk to the Anaesthetist face to face before the operation, rather than leaving the youngest's details and Autism history over the phone via a message.  Well he'd better be attentive for the amount of money charged just to knock my little angel out. His fees are costing more than the E.N.T. specialist.


    Maybe that is what I can push my children into when they become older?
    I would certainly be well looked after in my old age!

    Tuesday, June 14, 2011

    The Countdown.....

    THE COUNTDOWN!

    The clock is ticking and the countdown is on.
    I don't think I could pop any more Nervatona, Vitamin B and Kava Calm (natural remedies for stress).  I am trying to center myself, taking time to think positive, to pray, breathe anything I can possibly do just to remain relaxed and confident.... oh ok.... I'm sprung! Maybe I stretched the truth a little there.... it's more like a combination of smoking, drinking and running until I vomit. Don't recommend it!
    I think I am strong enough to get through the next few days. I know that I have support from family and friends. I'm hoping I can keep my emotions under control. I just keep reminding myself... it's a simple operation.  But there is a cloud hanging over my head....it's fear.... I'm terrified that my youngest boy will regress. Go backwards as he did a few weeks ago after his seizure. I don't think I could deal with the sorrow of seeing that again. We have all worked so hard for so long, so many years. We have sacrificed everything for therapy. To be confronted with the chance of loosing his small amount of speech that he has..... to go back to that total silence.... it's scares me.  I know all too well the frustration and confusion on his face when he tries to speak but nothing comes out.... we live with it daily.....it's heartbreaking.  
    My other concern.....when he goes under in the anaesthetic. I can't explain to him what he will be doing at the hospital or what will be happening. It is the fear in his eyes that I dread the most. I know he will be looking to me for reassurance. I know the doctors, lights and masks worn by the medical staff will terrify him. I know he will resist and will possibly need restraining. I only pray that I will be able to go with him into the theatre while they put him under.  And once we get over that hurdle, then it will be him waking up. How will he come out of it all ? There is a risk of him seizing. Again the regression associated with this. Of course in the back of my mind is the pain factor too. He won't be able to tell me if he is in pain. No mother wants to see her child in any sort of distress. Also the sooner he can take fluids the better. There is a chance he won't swallow or eat so we may need feeding tubes inserted..... I've been told what to do if he ruptures his throat... a 7/10 chance he will. I know the drill. But like the seizure he had last year.... I panicked under the pressure.  What if I do that again? 


    Ok... when I reviewed everything I just said....
     I don't know if I can do this...  to make those tough decisions. 
    The pressure of being the one responsible for all this.... is agony.
    My family and friends try to support.... but they have absolutely no idea of how difficult this day will be... so maybe it's better that I am on my own in this.


    The reality of the situation is.... 



    I found this and thought it said it all really.