Mad as Hell: It's Time For Change

Putting on my serious cap for a bit. Most of my readers realise I have a beautiful son with Asperger Syndrome. Boy 1, now twelve years of age. A little back I documented the bare bones of our journey so far. Have a read.

The Road Less Travelled: The Tale of a Boy and his Journey into Autismness I , 2 , 3 .

Now, as you read of those years of therapy and intervention consider how much, or in our case how little, we have accessed through the public system. I would estimate it at around 10%, and I am being generous there. We are lucky. My amazing mother, Wise Woman, has funded most of the help needed for my son. I would guess, to this point, it has cost her around the $100,000 mark. Well beyond most people's financial reach. We are not doing anything fancy, we are not travelling countries, trying extreme or expensive therapies. We are merely doing the basics trying to help our child.

Costs breakdown to something like this:

• Speech therapy: $100 per hour. In younger years weekly, older monthly.
• Occupational therapy: $100 per hour. In younger years weekly, older monthly. Once programme in place can be managed at home or in school with some monitoring by OT quarterly
• Psychologist: $200 per hour. Frequency depends on anxiety and behavioural issues at the time. Can be weekly for months when things bad. THIS does not include psych sessions for sibling. Refund of half from Medicare if under enhanced mental health care plan.
• Paediatrician: $220 per session. Varies, more often when younger.
• Teacher Aide: up to Grade 4 five days a week. Three to four hours a week funded by education department. TWENTY-ONE hours funded by family. Approx $22,000 a year. Varies on aide experience, hours funded, etc.

This is the bare bones, there are so many other bits and pieces, incidentals, medical expences. And so little help. The public waiting lists are abysmal. The funding even more so. And as parents of a special child you are too damn exhausted to fight the system for funding. I fight ALL the time just for his basic rights, I have no energy or reserves left to fight for more help.
Thus, it was with interest I read my friend Fe's post, which lead me to another blog, and then onto a new site.

This is a site dedicated to instigating change. It is desperately needed. Even if you don't have a child, family member or friend affected please sign. It can make the difference between having quality of life, or not. We should be ashamed that the so-called lucky country is not for so many.

My words are not as eloquent as usual, they are stilted and cold, I cannot seem to convey the emotion in this. I am tired. We return to school tomorrow and my beautiful son is having anxiety attacks, and his stress levels are off the scale. All my emotional reserves are being poured into trying to help him. And so a part of what I am asking here is for you to be strong for me. Read, sign the pledge. One voice is so small, but many can move mountains.