The Good, The Bad and the UGLY...

I am sorry peoples, but I am getting back up onto my soapbox today. To say it has been one hell of a day is a massive understatement, and the only way I can get through all this is to start with the hardest.

The Ugly:

This person is a supposed social commentator. Prue Macsween. Last Sunday, 11th July 2010, on the Channel Seven Sunrise programme this woman espoused her views on classroom integration. The topic was one of a teacher suing the education system for her loss of voice from yelling. The number of special needs children in this class was cited as one of the reasons for her yelling (always an effective tool when dealing with children with various disabilities, and yes my tone is dripping with sarcasm). This lead to our uneducated, ill-informed, big mouth no brain friend spouting some classics such as:

• Children with special needs should not be allowed to be in mainstream classes with “normal” kids - not quite sure what the definition of normal is;
• Children with special needs hold back children without special needs;
• Children with special needs should be "put somewhere and trained” and where they can be “properly administered to”;
• Children with special needs should be slowly re-introduced into a classroom once or if they are properly trained;
• Oh, and just for good measure she said all boys are retarded... I think somewhere in her little mind that was meant to be funny. Ha. Yeah, ha.

This incident has impacted so strongly to many parents and family and friends that there is a facebook page devoted to the topic. Go, if you feel as sickened by bigotry and segregation as I do, please join. In just 48 hours it is rapidly heading towards 900 members.

Now, I think the lovely people who started this group are more tolerant of this sort of thing than I am. If it were up to me I would take all the small-minded, self-obsessed, discriminatory idiots like this one, put them in a special training room, and keep them there utilising some archaic forms of teaching which I am positive are now outlawed. Unfortunately I am not allowed to do this, or to start a group to suggest it. At the very least she needs to be fired. But knowing the way the television industry works she'll probably be given her own show. Matty Johns anyone?

You know, you just get sick of beating your head against ignorance sometimes.

Ah screw it - this is such a big issue I am giving it a post all of its own. I'll blog the rest later.

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.

National Carers Week 18- 24 Oct, 2009

I am a carer. Actually, I am a mother and a carer. My oldest child was diagnosed with a form of autism spectrum disorder: PDD-NOS; at 4 years of age. Diagnosis was changed to Asperger Syndrome at age 7. He will be 12 in January. Over the years we have intensely accessed speech therapy, occupational therapy, physio therapy, psychologists, paediatricians, osteopaths, homeopaths, and many other groups and therapies. We have employed teacher aides and social skills teachers. Our lives have been moulded around him, and his needs.



Someone commented to me yesterday, a diagnosis or illness or disability not only affects the patient or person, it is of a huge consequence to the whole family. Such truer words have never been spoken. Next week I am off to school camp with him. No other parents are going as their child's carer, only me. Luckily it is a joint grade camp and Boy 2 is also attending. Happily, he is as excited as his brother to have mum on school camp, to him it is a bonus not a detriment.

I do not know what I am aiming for with this post. National Carer Week is over, life goes on, no-one in our lives even acknowledged it.

But to all out their who do care for family members, or friends, or partners: you are wonderful, loving, very special unique people, and from one carer to any other, I applaud you!