The Sibling War

One of the biggest questions couples face is 'Do we have a child?'. It's a challenging one, as having a child will always result in some level of sacrifice, and having children is not necessarily right or a priority for every couple. The second biggest question is 'Do we have another child?'. Adding to your family is a bit of a tricky concept. How long do you wait between children? You probably want them to grow up relatively close to each other, but having children close together can be extremely stressful both physically and financially for the parents. I think it's an even harder question for parents of a child with a disability, particularly a genetically inheritable disorder such as Autism. Are you prepared and willing to be parents of two children with Special Needs?

For the general population, the risk of having a child with ASD currently stands at approximately 1 in 150 in developed countries such as Australia and the U.S. But what about those who already have a child with ASD? Recent studies show that the statistics begin to stack up against you. Some studies make a broad claim of approximately 1 in 10, whilst other studies are more specific and break it down for each gender. They conclude that if you already have one ASD child, and your second child is a girl, the risk is 9%, whereas if you have a boy, it's a staggering 26%! For those who already have two children on the spectrum, the risk rises once again to a heart stopping 1 in 3, or 33.3% (non-specific to gender).

Although much is still to be discovered about Autism and how it occurs, these statistics strongly show that there is a genetic component to the disorder that needs to be considered. There are family history factors that can also have an effect on these statistics. For example, if your child seems to be a statistical anomaly, there is no ASD, and no other mental disorders such as Schizophrenia on either side of the family, it is probably more likely that your child just happened to have a random genetic mutation, or environmental factors may have influenced the ASD. Whereas, if you do have a family history of mental disorders on either side of the family, this can make your 'risk factor' even higher.

Genetic counselling can be a helpful tool in finding out the specifics of your genetic risk. A gene with too many copies, or where something got changed may be detected, but the meaning of this is less than concrete. The dominance or recessive nature of Autism genes is not yet known, and even if a 'faulty gene' can be detected, it does not automatically mean that Autism will present in that individual. Genes have on and off switches; we can have them present in our body, but they might not necessarily be doing anything. The same genetic defect can be found in both the mother and the child where the mother does not have ASD, but the child does. There is probably more than one gene involved in Autism, and of course there are environmental factors which also come in to play. So is it even worth trying genetic counselling? I cannot say.

Science is yet to get to a point where we can pin point ASD on a gene map with 100% certainty, and the likes of neonatal genetic screening such as what is offered for Downs Syndrome is probably in the realms of 10 years away. Most parents asking themselves about a second child would be past their child bearing years if they were to wait that long to decide.

So how can parents decide? Well, your guess is as good as mine. Inconclusive science can muddy the picture as much as it can bring clarity, and blind hope and faith is folly. Parents need to brace themselves for the risk and the possibility that this may happen again, and be wary for the signs. They can celebrate if any possibility of ASD is dismissed and, they still have the right to be shattered if their greatest fears are realised. Friends and family should be as supportive as possible and never suggest that the parents "knew what risk they were taking" because, really, they don't.

Living left of normal

Having a child with special needs is a difficult job. Some may label it 'impossible'. You lose all sight of normality, or more tortuously you can just see it there sitting on the horizon in your no go zone. Sitting there in the park while you stare at all the children laughing and playing normally while your child stims and fixates on a wheel.slapping you in the face when they're the only child not invited to a birthday party. But I think as parents of children with special needs we start to live a new kind of normal our normal. Where play dates are replaced by therapy where special outings are omitted so you can do more therapy.

I mean who decides what normal is anyway? It just seems like a statistical fallacy. Greater than 50% of the worlds population do X so if your not doing that, you're not normal. Or is it just a manner of perspective? You see all your friends, all your friends children enjoying what we might consider luxuries such as a carefree visit to the shopping centre, a meltdown free visit to the hairdresser and fantasise what it must be like to be them. What it must be like to be normal.

The decision of denying Alex 'normal' 4 year old kinder was an easy yet heartbreaking one for me to make. It came down to a simple equation of no aide time = no mainstream kinder. After last years nappy nightmares I knew with out an aide, he would be once again left to wander the playground for countless hours in soiled nappies or clothes. Of course NT parents all seemed to think I was doing the wrong thing.

The flawed assumption of denying him time to socialize with normal children will only make him less normal. Don't you know by letting him only socialize with Autistic children will only make him more Autistic and he'll only learn more Autistic behaviors? What NT parents don't seem to understand is with our kids, just because monkey sees, it does not equal monkey do.

Our children learn differently. If only it were as simple as force him in to more normal situations he can't comprehend and he will just become normal by some means of social osmosis. If anything, these last 10 months in an Autism exclusive learning environment have made him 'less Autistic' although I do not believe this to be a correct term or description of any sort. Let's just say the gap between normal and my son has shrunk somewhat this year.

I grieve somewhat as this isn't some phase that we can work through and I grieve on my sons behalf. His view of the world and ability to interpret it will always be impaired. I yearn to know what it must be like to parent a normal child. To play without set rules of where the car must be, or where the helicopter must go. To have the freedom of taking your child out for a random outing without fearing the meltdown consequences. To not have to make the choice between time playing at the park, or more therapy. But this our normal, and any different would seem unusual to us.

Follow the money trail

There are some pools of funding and hidden savings for parents of children with ASDs. The problem is not much of it is ever advertised. The government doesn't want you to know they offer financial support. You need to know how to ask the right questions, and who to ask them to; so here's my guide to what I've learnt so far:

Name: Carer's Allowance

Provider: Centrelink

Details: Carer's Allowance is a non-means tested payment to parents of children with Autism and other disabilities. It is best applied for after you have your full diagnosis of Autism. What I mean by this is after you've had your full round of multi-disciplinary assessments, you have to go back to your pediatrician one more time to get the outcome of the assessments, take the Carers allowance forms with you to this appointment and ask your pediatrician to fill it in for you. They will know how to fill it out so you get the maximum financial benefit. In addition to the Carer's Allowance, Centrelink will issue you with a Health Care Card in your child's name.

Name: Carer's Payment

Provider: Centrelink

Details: Carer's Payment is a means tested payment to parents of children with Autism and other disabilities. Again, it is best to apply for it at the same time you are applying for the Carer's Allowance. The current financial cut-off for Carer's Payment is $61,000 per family. If you qualify for the Carer's Payment, the Health Care Card issued will also have your, and your husband's name on it, which means you are entitled to a swathe of discounts including gas, electricity, water and many more.

Name: Flexible Support Package

Provider: Early Childhood Intervention Services/Yooralla

Details:If you ring and give the ECIS the details of the issues with your child, they will assign you a case worker. Your child must be under 6 years of age to be registered, but you do not need an official diagnosis to be able to register. After you have been assigned a case worker and have worked through your child's needs and what services would be useful, you should ask about applying for a Flexible Support Package. You'll need to discuss with your case worker what you want for your child, and explain how it would help your child overcome his issues by having it. You can apply for up to $1,000 worth of any goods or service. We've only applied for this once, but rumour tells me you can apply for it multiple times.

Name: Helping Children With Autism package

Provider: Department of Families Housing Community Services and Indigenous Affairs

Details: The Helping Children With Autism package is a one off government provided tax free payment of $12,000 you can access to pay for therapies. There are restrictions such as; the money is paid directly to the provider, you can not spend more than $6,000 in any Financial Year, you can only spend the money on services that are porvided by those who are on the 'provider panel' which is available to browse on the FAHCSIA website. Every month you use this, you are sent a monthly activity staement so you can track your spending. The Helping Children With Autism package must be applied for before the childs 6th birthday and will cease being available when the child has their 7th birthday, regardless of whether there is money left or not.

Name: Carer's Adjustment Payment

Provider: Centerlink

Details: The Carer's Adjustment Payment is a one off tax free payment to help families following a catastrophic event when a child up to 6 years of age is diagnosed with a severe illness, medical condition or major disability. The payment is case by case dependent up to a maximum of $10,000. It is specifically for parents who are ineligible for the Carers Payment to help with the added financial burden of the 'catastrophic event'. Although Autism isn't specifically listed in the examples on the website, since it's all determined by a review panel, it's worth giving it a shot. Even if you don't get granted the full $10,000, partial grants can be given out, so it's worth applying to see how much you can be granted.

Somewhere over the rainbow

As I was reading an article today on 'The Over-Diagnosis of Autism', I began to feel more and more frustrated and angry. The claim was that pediatricians in NSW are deliberately diagnosing non-genuine cases of Autism so that schools can access funding. Now this is a double pronged sting for parents like me.

I highly doubt that pediatricians are genuinely doing what the article claims and simply exaggerating learning difficulties to be able to diagnose Autism. For one it's exceptionally unethical, and secondly, unless the rules are very different in NSW to Victoria, most the children wouldn't qualify for much aide time anyway, merely off the back of an ASD diagnosis. You see not only do you have to drag your child through a harrowing set of assessments to gain a diagnosis in the first place, to qualify for aide time, the numbers need to be quite severe.

Articles such as this perpetuate the inane and stupid comments and thoughts that harm families like ours. Silly claims such as Autism is the new 'flavour of the month' and is 'the new ADHD of the decade'. Insinuations that we can, and would, just walk in to a doctors office and say "Hi, please diagnose my child with Autism" and get a response like "Sure, and while you're here, here's a huge wad of cash." Let me assure you once and for all, there is no free ride for kids on the spectrum, and diagnosis' and aide time are not handed out like free cookies.

For any pediatrician who is genuinely doing this, they should not only be stripped of their medical licence, they should be shot. Not only does it put an additional strain on the already scarce amount of government funding available, it cheapens the pain and trials that parents like myself go through every day. Yes, over-diagnosis can be an issue, and it certainly did happen back in the late 80's and early 90's with ADHD/ADD but I can once again be sure it wasn't for some mystical great pool of free money or aide time. These days for any diagnosis, even ADHD, the rules have changed and the hurdles are set that much higher as a consequence of the past abuse.

If Autism is supposedly "the new ADHD" and so popular, why is it that parents are still getting diagnosis' of ADHD today? I can just imagine it now in the pediatricians office "I think your child has ADHD" with the mother replying "Oh no! That's too 90's, give me Autism, that's what's cool!". Also how come children on spectrum commonly have a double diagnosis of ASD and ADHD? I bet you think they wanted to be double cool and get twice the money.

There is nothing "Cool" "Hip" or "Very now" about Autism at all. Parents with children genuinely on the spectrum struggle every day to fight for what they need for their child and still quite often can't obtain it.

The evils of Autism

One of the pitfalls of the fact that there is no cure for Autism is that it leaves it open for almost anyone to offer a 'solution' no matter how dangerous or crazy. Now we all like to think that we're smart and can pick a bad idea when we see one, but the problem is that even the dangerous people have become smart and figured out how to appear scientific and sane.

There are all manners of 'whack jobs' out there who will offer you just about anything for a share in everyone else's fortune, but if even the dangerous people have 'doctors' and 'scientists' on their side how do we pick it? Good bloody question.

One of the highest profile dangerous people in regards to Autism is Jenny McCarthy. She is dangerous for a lot of reasons: She is perpetuating the myth that vaccines cause Autism for one thing. Now I don't use the word myth lightly here; it has been studied to a great depth of detail now and there is no scientific link between Autism and any of the vaccines. Period. In fact the man who gave 'credit' to this great lie, Andrew Wakefield, has indeed had his medical license revoked on account of performing medical fraud.

Now until the Autism mystery is solved, people are going to want something to blame and vaccines are a very convenient scape goat. They have preservatives in them that a lot of people don't understand and Autism symptoms typically begin to appear not long after the age a child typically receives their MMR vaccine. This ladies and gentlemen is what they call a coincidence. There is no great conspiracy. Most the Australian vaccines have in fact been Thiomersal free since 1999, but the number one thing you'll hear anti-vaccine supporters harping on about is Thiomersal. Millions of children die each year from preventable vaccinable diseases. Anti-vaccine grand standing is destroying herd immunity and killing babies who aren't old enough to be vaccinated yet. But as long as you sit in your ivory tower with your superiority complex and bullshit herbs from your homeopath, I'm sure you're fine!

I'm strongly starting to believe all anti-vaccine supporters should be shipped off to 3rd world countries like Somalia where vaccinating your child is only something the rich can afford to do. See how long them and their beliefs in 'all natural' survive there. At least that way you're not contributing towards chipping away at our hard earned herd immunity.

Our good friend Jenny doesn't stop at just promoting anti vaccination though, she also advocates for Chelation Therapy. Chelation Therapy involves a series of intravenous infusions of a mixture of chemicals (usually EDTA). The theory is that these chemicals bind to heavy metals in the body (such as Mercury) and help the body pass them. What some people don't realise is that the Chelation chemicals themselves can be toxic or significantly harmful, especially to a child.

So surely by now you can see how an all encompassing approach of "I'll try anything once to cure Autism" can be extremely dangerous. Yes, all people have a right to be heard. Voice and opinion is important, but we have to be able to apply a nutbaggery filter in order not to endanger our loved ones. How can we effectively do this with the evil ones claiming 'science'? Lots and lots of research and keeping a look out for one word: Cure. Because surely by now if Jenny McCarthy had have in fact cured Autism, she would have been given millions of dollars; not killed hundreds of innocent children.

http://www.jennymccarthybodycount.com/Jenny_McCarthy_Body_Count/Home.html

Autism: A picture or 1000 pieces?

Autism is a tricky and complex disorder, and I can only imagine growing up as a child with Autism is challenging. Unfortunately, a lot of people with Autism end up with a secondary diagnosis. It doesn't really invalidate the original diagnosis, supersede it or make it any easier or harder; it just highlights the child's challenges.

Common secondary diagnoses for Autism include: Intellectual Disability, Sensory Integration Disorder, Attention Deficit Hyperactive Disorder, Epilepsy, Oppositional Defiance Disorder, Anxiety, Obsessive Compulsive Disorder, Tourette Syndrome, Gender Identity Disorder, Language disorders, Dispraxia/Apraxia and many more. These conditions are often refereed to as co-morbid conditions, as they are not the main condition, but can contribute towards it.

While each additional diagnosis means the child has yet another burden to bear, do we break down the puzzle and look at every individual piece? Or do we look at the whole picture that little bit clearer?

A common theme I'm noticing especially in online places is for parents to list after their child's name all the diagnosis' the child has been given. Much like Arnold Rimmer BSC, SSC or what have you, you might see Alex ASD, ID, SID. Whilst I can understand on today of all days (when we have been handed two new labels of Severe Expressive Language Disorder and Severe Receptive Language Disorder) how each new diagnosis can be extremely distressing, surely the Autism badge is a heavy enough badge for your child to be wearing without all the extras. Also, are they genuine extras? Would your child still have these if they did not have Autism? Or do these extra pieces of information help describe your child's weaknesses?

Every child with Autism has a different sort of Autism, a flavour if you will. Each person's Autism is made up of so many different aspects that affect their life in a certain way. Autism without a language delay is usually Aspergers. If little Johnny down the street didn't have a language disorder and Sensory Integration Disorder, would he have been diagnosed with Autism at all?

While I think it's important for us as parents to know which aspects of their child's Autism are affecting them the most, I think it's also important not to get too bogged down in the detail, and look at the bigger picture.

The cost of ASD

We've got into some pretty nasty debt over the last 12 months getting our son diagnosed with Autism. I had originally thought by this time this year we'd be relatively ok and able to stop spending and get some of that debt down. What I didn't take into account was the fact that the cost seems to be almost as ongoing as the illness itself. By September last year we had already reached our Medicare Safety Net and we hadn't even reached the point of diagnosis.
The diagnosis came and it was time for us to take the next step; Early Intervention. As it turns out, all the assessments we had done weren't enough; we needed another. Even though we were now armed with our special Medicare number that was supposed to make things cheaper, and over the limit for Medicare (this is supposed to entitle you to a higher rebate) we still only received about 50% back. We're done now right? Wrong!

Right near Christmas Alex had a 'seizure type event'. Now I use those words and the quotation marks because that's the best description the doctors could give at the time.
So far we had spent around $3-4k, so surely we're done now right? Nope, not even close! There's also 3 different tests that need to be done for primary school entry as well!

It's all too easy for those who are outside of our situations, and look at our $12,000 in FAHCSIA funding and the $110 a fortnight Carer's Allowance and assume that parents are trying to con their pediatricians into giving their child an ASD diagnosis for the 'free ride'. But I can tell you from this side of the fence, it's not even close to that!

When we crossed our Medicare Safety Net last year, most people's responses to that was "oh good! You'll get more back now" but not only did that not happen, but somethings were not covered at all. Report writing for example, does not have a medicare number, so even for crucial reports which you need for entry into programs, you don't get a cent back. Let me also remind you that you can't touch the FAHCSIA funding and you wont squeeze a cent out of Centrelink until you actually have your diagnosis, which believe me is no picnic. Also, to get to the medicare Safety Net in the first place, your medical expenses must exceed $1,500 out of pocket within that calendar year!

Even in our post funding grant days, we are very limited in choice and must select from predetermined providers, you can't use any more than $6,000 of the funding in a financial year, Carers Payment is means tested for low income families only and so it goes. Now I know to the average Joe out there $6,000 for a financial year sounds like a lot but when it's $130 an OT session, $130 a Speech Therapy session, and $170 a psychologist or ABA session, $6,000 doesn't last long!

On top of that is personal sacrifice. I have pretty much had the choice of stay at home and help my son or go back to work and to hell with trying to help him to improve. This isn't even a choice at all, even though Centrelink doesn't compensate me a cent for my potential lost income, Alex is at the most vital age for therapy to be at it's highest effectiveness. We are even seriously looking at selling our biggest asset, our house, and returning to renting so that we can live closer to Alex's school and cut down his commute time and our petrol bill.

So what is the real cost of ASD? I'm not sure there's a calculator with enough zeros on it to answer that question!

Learning to ask for help

There are many new skills we need to learn being parents. We learn how to bathe, feed and care for our child. One skill a lot of parents of Special Needs kids need to learn is asking for help. It's harder than you think. One of the things that often stops us is pride.

You don't want to look like a bad parent and you don't want to feel like a bad parent. Admitting you need help out aloud takes away a lot of pride and requires a lot of courage. Asking for help is basically admitting to whomever you are talking to that you are not coping with your currently available resources. But you know what? That's ok. It's ok that you're not perfect. Probability is you're doing a damned lot better than what you're giving yourself credit for anyway. Most people do have networks of friends, family etc. You often hear "if there's anything I can ever do...."

Sometimes it's hard not to feel hopeless. What could they possibly do? Babysitting may not be an option as your child may have a lot of anxieties when it comes to strange people. What if they had a meltdown while you were gone? Your friend or relative may not have the skills to handle a meltdown. There's also the fact that you are doing all these things anyway, so what does it matter if you do another. But we forget, eventually, the 'camels back' will break. You are only an effective parent if you are functioning enough to be one.

Even I shocked myself a few months ago when I found myself accidentally asking a friend for help. I knew I had a problem; a situation that was making my day less than ideal. I was coping with the situation, but there was definitely a much better solution than just sucking it up. I hadn't actually intended on asking for help, the conversation just worked out that way. Suddenly, a solution was found for my difficult every day routine.

If you are lucky enough to have a support network offering help, it's ok to ask for it. Even if you can't think of something the first day it's offered, if you find yourself thinking "you know what would make my day easier?' think about who could make it happen.

R-E-S-P-E-C-T

Being a modern day Mum to any child right now is challenging. There are pressures all around you; pressure to appear as the perfect mother, pressures to return to work and contribute money to the household, pressure to stay at home and never miss a scrape or bump. The debate of stay at home vs. return to work will most likely never be settled but it's particularly important for parents of special needs children to acknowledge how much we already work. One thing that seems to be missing for a lot of mothers is respect. Respect for themselves and acknowledging how much we do work, and are not paid or recognised for it.

Take your average 40 hour a week job, I dare say that most mums who return to the workforce don't take on full time work, but let's just take this example for simplicity. Currently in my situation, my son attends an 18 hour Early Education Program Due to rising fuel prices and the stress of driving back and forth, it is easier for me to not come home during his school time. Now since teleports don't exist, I have to drive him there. Early morning traffic means it usually takes me about an hour from door to door and in the evenings, about 45 minutes as peak hour hasn't come into full swing yet. So for a three day a week program, we're already sitting at 23.5 hours. Alex has Occupational Therapy once a fortnight for an hour, so let's just simplify that to half an hour a week; 24 hours plus travel time equals 25 hours. We have recently  started an ABA program. So far the sessions have been 1.5 hours in duration, and then we have our ABA homework. I've decided to aim for an hour a day, so over the course of a week, that adds up to 8.5 hours a week. So now we're at 34.5 hours a week including travel. Weekly speech therapy bumps the total up to 36.5 hours a week. I spend about half an hour a day doing Alex's readers which brings it up to 40 hours, and I haven't even touched the housework!!

Let's not forget that stay at home mum's don't get sick leave. If we're sick, we have to either suck it up and carry on or find someone else to take them to therapy. We get no long service leave, no pay and no recognition; and let's not forget the snide comments like "it must be so nice to stay at home and play all day".

Recently on our trip overseas I felt so embarrassed and degraded when filling out forms on the aeroplane, when  I wrote in the occupation space 'mother'. Is that all I am? Someone's mother? Don't I deserve a little more credit than that? I know what they were really looking for; 'home duties' or the like, but I refuse to write that. I think from now on, I'm going to give myself a little more respect and write 'volunteer therapist'.

Words....

Words have the power to both destroy and heal. When words are both true and kind, they can change our world. - Buddha

Two words, two terrifying words that change both everything and nothing at once. Intellectual Disability.

"Intellectual Disability" is the term used in Australia to describe individuals who have impaired cognitive functioning manifesting before 18 years of age . The same condition is described as "learning disability" in the United Kingdom and "mental retardation" in the United States.

Intellectual Disability can range from mild to profound in severity, and like Autism itself, there is no cure. In Australia, roughly 3% of the general population suffer from some form of Intellectual Disability. In the case of Autism (Kanner's or Classic) , approximately 70% of Autistic individuals have an Intellectual Disability. The remaining 30% usually have some form of Learning Disability. In Australia learning disability and Intellectual Disability are two unique terms and should not be confused. An Intellectual Disability is more severe than an learning disability and is much more difficult to overcome.

But can someone with an Intellectual Disability still learn? In most cases yes. More than half the people in Australia with an Intellectual Disability are classified as 'Mild', and even though learning may take longer, take more explanation and may need added props such as visuals, they can still learn.

Our experience with Alex is it can take a while for information to be learned, but once he has truly learnt it, he tends to retain it. For example it took us approximately 6 months to teach him to recognise the full alphabet, now he can point out and recognise any letter and is starting to have some word recognition. We have been working on numbers for nearly a year now and he can recognise more than 20 numbers and can count to 10 with a bit of help and encouragement. Alex has bigger trouble with more abstract concepts though, for example, he only learnt 3 months ago the correct response to "What's your name?" is "Name is Alex".

We have a lot of hope for Alex and Alex's future but for now we have our daily struggles of aiding him to get dressed and undressed, bathing him, brushing his teeth, changing his nappy and so much more. The daily grind for us as parents to try and not only teach him information children 1 or 2 years his junior know, but to teach him life skills and subtleties of social interaction does become quite a labor. But it's a labor of love for one very special little man, who I believe has all the potential in the world.

[There will be no blog post on Monday 18th April, due to the fact we're overseas. The next post will be Monday 25th April.]

Welcome to Sensory Hell

My clothes annoy me

They've never done this before

I want to chew on everything

And it's not 'cause I'm bored

I wont eat my food

I just sit and stare

I can't sit still

I wriggle in my chair

If you take me to a noisy place

I'm bound to meltdown

If you try and cut my hair

I'll scream the house down

I really don't like it

When you wash my hair

Please don't take me swimming

I can't stand it there

I prefer heavy blankets

They help me sleep at night

When you go near an escalator

You'll need to hug me tight

Big firm cuddles

Really calm me down

I like to play with cars

And spin the wheels round and round

I get frightened when you vacuum

And I have to run away

I really can't help it

I was born this way

So, what IS Autism? (Part 2)

As previously mentioned, it's a neurological disorder. A problem with the brain's 'wiring' so messages can be slow and/or jumbled in getting through to the brain. Autism affects many different areas; Social, Behavioural, Communication and often the Senses. Autism is part of the Autism Spectrum Disorders including Aspergers, PDD-NOS, Rhett's, Fragile X and of course Autism (classical). It is referred to as a spectrum to attempt to illustrate how widely varying the disorder can be. An Autistic person can be profoundly both mentally and physically disabled, or in the case of Aspergers, be 'a little odd' but otherwise indeterminable from any other person in the 'normal' population. There is constant debate in the medical world over diagnostic symptoms and labels. There is fierce debate over whether the Aspergers label will stand alone in the new Diagnostic and Statistical Manual (DSM) or be absorbed into the Autism label, and whether 'high functioning' Autism really exists, and if and how it differs from Aspergers.

Common Social markers for Autism may include limited eye contact or avoidance, limited or absent social intuition, not being able to read social situations, cues and body language, may not point at objects or use hand gestures, can not read or understand emotions. In play they do not tend to seek out other children, often lack imaginative play and often play with toys in an odd manner. For example, one of Alex's favourite things to do is find every matchbox car he owns and line them all up perfectly in a row, all facing the same direction. When he has run out of cars to line up, he will often start a new line. If you try and disrupt the line, or try and make the cars drive normally, he will get very distressed. Rather than play with a truck or wagon 'normally', he likes to turn the wagon upside down and spin the wheels. He can do this for an hour or more.

A common Communication problem Autistic children have is delayed/limited speech. They may grow to have a more varied vocabulary, but still not construct full sentences, or give instructions. ‘Echolalia’ is very common in Autistic children. This means they can repeat language, but not necessarily understand the language, or use that word in their every day vocabulary. We can say to Alex "would you like a drink" and his response can be "drink" rather than "Yes". A lot of Autistic children have difficulty understanding and following instructions. "Give me the block and sit on the chair" may be too much for them to comprehend at once. They often find it easier if you keep it to short concise instructions. Autistic children may display repetitive language, repeating the same word or words over and over. Alex has a lot of difficulty with pronouns in his speech. If you say "where's your ...." or "would you like......" he often won't understand, where as if you say "where's Alex's ......" or "would Alex like......." he'll understand perfectly. He'll often even get that jumbled as well and when looking for his shoes he'll say "where's your shoes?" not "where's my shoes".

The most common Behavioural symptom in Autism  is repetitiveness. Autistic children are typically incredibly routine focused. Sheldon makes a shining example of this on The Big Bang Theory in that he can't possibly have Chinese on a Friday night because Friday night is pizza night or something to that effect. Routines must be carried out just so, in the correct order or the child may become upset or confused. Children may focus on one very small part of a toy with great intensity, either just spinning the wheel of a car, or getting down on the same level as the car and moving the car back and forth in front of their eyes, watching the wheels. Self stimulatory behaviours such as hand flapping, rocking back and forth and toe walking are also quite common.

Not all Autistic children have sensory issues, but most often they will. Some can't stand the touch or feel of certain fabrics on their skin, while with others, certain fabrics can send them in to a 'trance'. I've heard of more than one Autistic child who was entranced by corduroy fabric. He'd sit there, for hours on end just feeling the ridges. Some Autistic children are very sensitive to noises; loud busy places like shopping centres overload them, they run and hide if you turn on the vacuum cleaner and they're terrified by hand driers. Some Autistic children suffer from visual sensitivities; they can't stand fluorescent lights, and if a room is too busy with colours and pictures they can't focus. Smell can be another issue; some can't stand to be within 20 metres of the fish shop whilst others will insist on following you into The Body Shop and need to smell everything intently. Even taste/texture can be an issue with Autistic children. Some prefer very plain tasting things and will prefer to eat plain bread and chicken, others can't stand crunchy things like stir fried broccoli.

As you can see, Autism is no one particular behaviour or symptom. It's a varying degree of many issues, some of which I have not even mentioned. The most important thing is that we love and support these children and give them the understanding that they need.

What is Autism? (Part 1)

[In recognition of April 2nd being International Autism Awareness Day I have written two very special awareness posts]

I still get asked this question more than I expected to so maybe it's time to clarify.

It is a neurological disorder, which means there's a problem with that person's brain. It isn't curable, despite what all the Jenny McCarthy nutbags of this world will tell you, there is currently no cure for Autism. It is possible however to 'recover' from Autism to a point where the person can easily blend in to mainstream society, get a job, live independently etc.

Not all Autistic children are 'little geniuses', quite often higher functioning Autistic and Aspergers children will have a passion,  a subject that they know everything about and can list off every single fact imaginable, but not every Autistic child.

Not every Autistic child is unaffectionate or can't stand being touched. While it was very well demonstrated in the movie Temple Grandin that even her own mother could not hug her, this is not every Autistic child. Our son loves cuddles and kisses.

Not every Autistic child is completely unable to speak. While there are non-verbal Autistic children, a large percentage can communicate to some degree. The Autistic diagnosis does in fact require a language delay, where for example a 4 year old may have the language skills of a 2 year old, but the language is not necessarily absent.

Autistic people don't necessarily 'stim' all the time and not all 'stimming' looks the same. Self stimulatory behaviour such as rocking, hand flapping, spinning is a very common Autistic trait, and they may do that some of the time, but they don't necessarily do it constantly. Autistic children can play with cars, trains, playdoh but it maybe a little different to other NT kids.

Not all Autistic people have an Intellectual Disability. There seems to be widely varying statistics (anywhere from 25 to 80 percent) on the number of Autistic people who have an ID, but if they do not have an ID, it doesn't mean they're not Autistic. Conversely, the majority of Autistic people do have a Learning Disability, where they can learn, but it might take 3 times as long for the information to sink in, or they can only learn in a certain way eg. Can learn visually with picture cards, but not just using words.

Not all Autistic people have gut problems. It is common that people with Autism do have additional GI tract problems which often result in their child needing to have Gluten free, Casein free, Dairy free diets, or just one of the above, but it is a select percentage which are affected, not all.

Not all Autistic people are anti-social. Some may enjoy social interaction. They may not understand the social 'rules' or be able to read body language. They may even prefer to interact with adults, rather than children their own age, but they are not necessarily anti-social.

Not all Autistic people are violent. While most Autistic children do have some behavioural problems, not all of them kick, bite, punch etc. A lot of Autistic children do 'resort' to violent behaviour out of sheer frustration of not being able to communicate, but Autistic doesn't automatically equal violent.

So then, what IS Autism? Part Two will be next Monday.

Grateful for the little things

I always found it odd reading books about going through the ASD diagnosis stage. There would always be a section about grief, where they warn you to prepare for the grief of losing all your original hopes and dreams for your child. It has been said in at least one book I've read that you go through all the same stages as if your child had died. Anger, bargaining etc. This really spins me on my head and makes me think "What the hell?"

I never went through any sort of grieving stage. I found out what the problem was, and I learned how I could best deal with and manage the disorder for the best possible outcome. But maybe I am a strange kind of alien mother who actually always accepted her son for who he is? I've only ever expected from him, the things he seems capable of. Of course, there's still plenty of time left in both our lives for me to be 'disappointed'; maybe he never will get married, but who's to say that has anything to do with the fact that he's Autistic anyway?

It's like finding out you're having a girl, deciding automatically they're going to be winning all sorts of pageants and then 'grieving' because you think your baby is ugly, or they have a birth mark. As parents I don't believe we get the right to automatically decide who they're going to be.

I think any parent who grieves for their perfectly healthy child's life is looking at the picture wrong. More than likely, with enough help and early intervention their child can achieve some truly brilliant things. Or even mediocre; what's the problem with mediocrity? I for one am stoked about the fact that my child is healthy and happy. Sure conversations are difficult due to his language delay and at times I do cry out of sheer frustration over how hard our daily life can be. There is plenty of 'why us?' and 'I wish I could know what it would be like to raise an NT child, I bet it would be easy'. But wishing will never change who our son is, and ultimately, I wouldn't change him for the world anyway.

The Consequence of Intelligence

As you navigate your way through the minefield of diagnosis and assessments you begin to find available services , and how your child can qualify. Early Intervention is a new marketplace which has recently exploded with providers giving the illusion of plenty of choice, but never enough places. Every parent out there must at some point approach one very important learning environment: Primary School.

There are all the usual options available, Public, Private, Independent etc. but there's two options most parents don't need to consider, Special School and Special Development School. One can not simply decide to send their child to either of these schools; their child has to qualify to attend. Parents are told their child must undergo an IQ test and admission will be based on this score.

The current admission system goes like so: Children scoring below 55 are eligible for SDS entry, children between 50 and 70 qualify for SS entry, and any child scoring 71 and above is forced into mainstream. Many parents of children in the latter category are left with nothing but the piddly amount of $12,000 of FAHCSIA funding, or to privately fund an aide and special help so they don't get left behind. While no parent would wish it upon their child to have a score below 70, the cut and dry situation of help vs. fend for yourself puts you in an awkward position.

While the government is spruiking the benefits of Early Intervention, they are leaving any child who manages to just cross the line out in the cold. It's enough to make any parent who spent all their time and money running around getting their child help before primary school regret their 'investment'.

The Waiting Game

The Waiting Game is a cruel and unusual game any parent must play while wading through our addled medical system for a diagnosis of ASD.

The goal of the game is simple: Get to the end of the game still alive, whilst retaining as much money and sanity as possible.

What most parents don't seem to realise is there are proactive things you can be doing while playing the waiting game. Usually there are large gaps in between making the phone call for an appointment and the appointment itself. There are things you can actually do in this 'dead time'.

The main goal for children under school age going through the diagnosis stage is Early Intervention, research your options in your state. Most programs take children as young as 2.8 years old. Most programs also require things you most likely don't have yet; diagnosis letter, Childhood Autism Rating Scale (CARS) score, Wechsler Preschool and Primary Scale of Intelligence (colloquially Wippsi) or Wechsler Intelligence Scale for Children (WISC) depending on how old your child is, Vineland Adaptive Behaviour Scale (VABS) but don't let that put you off. Waiting queues are long and there's a high probability you will have at least some of these by the time your child's name is at the top of the list. Yes that's right, fudge it a little, twist the truth. It also gives you an added advantage of knowing what tests to ask your psychologist for. The psychologist will pick from a standard subset to perform, that's fine, but if you already know you need a CARS score for a service you're on the waiting list for, you can make sure that it's done. Don't assume it's automatically included in the list of assessments he or she will do.

To find Intervention Services there are multiple places you can start looking. Books, Websites, Maternal and Child Health Nurses even give the Autism specific services in your state eg. Autism Victoria, Autism Queensland etc.

While you may have your 'first preference' as to which program you would like your child to attend, you should never put 'all of your eggs in one basket'. I recommend you put your child on a minimum of 3 waiting lists, ultimately, it doesn't matter if they're on the waiting list for 10!! Even if you start a less preferable program, and 3 weeks later your first preference becomes available, you can always switch, any program is better than nothing at all. I know we were on one waiting list for 10 months, and we only came off it after a completely different service came through with a spot. Use your time wisely. Before long your child will be knocking on the door of Primary School, where they'll need all the help they can get.

I once was blind, but now I see

How does one become able to recognise Autism? How does a parent recognise, and realise there's something not right about their 'odd' child? How does a friend recognise it? A stranger? A professional?

As a parent of an Autistic child there was a time I thought I had failed. Failed as a parent because I could not recognise the signs of Autism in my child, while professional after professional would spend as little as 30-45 minutes with my child and see it almost instantly. Was I really so bad at being a parent that I had failed to see something so obvious? The only answer to this is 'no'. I did not fail, and most responsible parents who didn't recognise it didn't fail either. Most new parents suffer from 'new parent anxiety,' and study the baby development charts. When will they roll? When will they crawl? When will they sit? And so it goes. I guess for parents of non-verbal Autistic kids, the signs would have been a bit more obvious than in our experience, but with comments such as "You know, Einstein didn't talk until he was 3!" it's easily possible that even they may have quashed any doubts from their mind.

We quickly realised we were far from the only ones who hadn't noticed that Alex is Autistic. Like a pregnancy, we only wanted to tell family at first, especially since we'd only seen the pediatrician once and it was still a case of *may be Autistic*. Comments of disbelief came one after the other, after the other. We ourselves didn't believe the pediatrician. "Are you insane?" was my first thought as our world seemed to shatter into a million pieces.

Now I believe I truly understand why Autism has adopted the puzzle piece as their 'symbol'. We both had a picture in our heads of what Autism was, but none of that matched our son. As we began to learn what Autism really is, like some gut wrenching horror story we began to see every sign, every symptom come together and make a perfect picture of our son. I clearly remember 'Googling' for an Autism checklist and stumbling across one that psychologists use for diagnosing. It required "A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)" as I browsed the list Alex had a tick in nearly every box.


I think one of my big "Ah Ha!" moments (Thank You Oprah!) happened the first time my husband's parents admitted they struggled while caring for my son for a day. That was the day I realised I wasn't a bad parent for not noting my son's Autism after all. Alex was having a hyper episode it seemed. Our son does not have an additional diagnosis of ADHD, but I can imagine it's fairly similar to one of Alex's hyper episodes, except ongoing. I can't recall what happened in detail; whether we were asked to pick him up early, or whether they said they had thought about asking us to get him early. But with a clear look of exhaustion on their faces they admitted they struggled, and now they "got what we go through" at home on a daily basis. After having four children of their own, they were utterly exhausted after one day of our son on a hyper.

Advocate or Suffocate

When you have a child with Special Needs you often want to advocate for them. You want to find all the services that fulfil their needs, and make sure their rights as children are not ignored. I often find a lot of parents, like myself want to raise awareness. Awareness decreases ignorance of the particular condition, and with enough public awareness, it can often lead to positive programs and government funding. Since our children can not advocate for themselves, we have to do it for them. But how does one advocate for their child, fulfill all their needs, without over stepping the boundaries and suffocating their child? Making the disability define them. Not providing them a path where they can be themselves.

It's a very fine balance. With services and funding always being in short supply it's often a fact that, as the saying goes "The squeakiest wheels get the most oil" but sometimes even that is not enough. I've had to beg services that we are technically 'out of zone' for to help us because those within zone were full 6 months ago.

I am also commonly frustrated by common misinformation on Autism, how almost everyone has one picture in their head of what Autism is, and if my son doesn't fit that picture, I almost certainly get asked "Really? Are you sure?" Part of me thinks I should almost throw an Autism Awareness party, handing out information leaflets to each guest and making grand speeches. I have to restrain myself an remind myself while information and awareness are both important tools, the disability should never define or overshadow my son, and who he is.

After all, he is Alex, who happens to have Autism, Not Autism who happens to have the name Alex.

Into the Melting Pot

It's an interesting new world being a mum to a special needs child. You see a whole new world you never saw before, meet people you would have never met, and hear words and terms you've never heard before. Educating yourself on all your childs needs, and the new fancy words, they could run a whole new TAFE course on it all. Seeing through the mud I think I'd call it.

One of the new terms I've come to understand as a mum to a child with Autism is 'Meltdown'.

Now the word Meltdown is hardly exclusive to the Autism world. Nuclear reactors melt down, you melt down chocolate for a recipe but I never really understood the term 'meltdown' in relation to Autism Spectrum Disorder kids until I knew my son. Now at first, I didn't understand what it was, because he was having meltdowns long before his diagnosis. I knew he wasn't having a tantrum, tantrums are easily recognisable, but this experience was a whole new ball game. I think I've figured out why professionals use the term meltdown to describe this behaviour. When my child has a melt down you can actually see all that is my son, melt away and all that is left is a hollow shell, vaguely resembling my son. He looks like my son, except if you look at his eyes, his eyes are vacant, he is not taking any information in, nothing is rational, all that's left is his fight instinct, to fight his way out of this situation. The meltdown is as frightening for us as parents as it is for him to be experiencing it. There's no bargaining, it's a black or white "I can not handle this situation'. There are repercussions for the meltdown also, there maybe the initial mess from the flailing limbs, fingers crossed no injuries to your child, yourself, or anyone else in the firing line, but some linger beyond the event. Sometimes the emptiness in his eyes can fade in and out for days. Communication bounces off his ears. Even simple instructions need to be repeated, and simplified even further.

So I do find it strange almost funny when I hear mums of Neurotypical children using the word meltdown to describe their childs tantrum. I borrow the term Neurotypical from medical professionals, I'm not intending to bamboozle anybody, it's their way of officially labelling 'normal'. Now why do I laugh? Not that I think it's funny that their child is chucking a hissy fit over mummy saying no to the chocolate bar but the fact they think that it rates on the same scale as an actual meltdown. I'm not trying to be smug or exclusive about words and terms and claim that as parents to ASD kids we have ownership over words and terms. If ASD kids can have tantrums, why can't NT kids have meltdowns? Why? Because the fundamental reasons for the meltdown aren't there in an NT child. They don't suffer from sensory overload, unless they have an Sensory Processing Disorder outside of having an ASD. Sensory overload to such a point that they can not cope, they can not function, they just shut down. Melt down.

The Politics of Disability

It came up recently on a forum I frequent the question of comparison with our Special Needs kids. Did we feel like we were out on a limb where no one could possibly compare or relate to our situation, or did we feel we were more or less in the same boat. I had to say I felt we were more or less in the same boat, even though some of the children could do a lot more than my child can, there were also those that can do a lot less. It still doesn't dampen the feeling of sheer frustration when you just want them to do one thing. A lot of the other children with ASD can do it, some more 'severe' than my son, but I also know logically, I'm not asking him to do one thing, as to be able to do it, he has to do several others first. It's like trying to recite the alphabet starting from L.

One thing that has really come to my attention since knowing I was a mum of a SN child is the R word. As a teenager and even in my 20's I threw it around like it meant nothing. Never giving it a second thought. Now being around SN kids, some with Intellectual Disabilities some without, I can really understand the impact of the word. Especially when it's being thrown around without a second thought or empathy. I always thought those who objected to the R word being thrown around were being a little precious, but now I 'get it'. But maybe now I know the other side of the coin, have I become precious? At this point it has neither been confirmed or denied whether my son has an ID or not, but I have seen enough, that I can understand the profound effect that thoughtless comments have.

So do the unaware need to make a better effort at understanding, or at least displaying some thoughtfulness towards those dealing with Special Needs? Or do the aware need to grow a thicker skin and realise those who don't know, will never understand.

Sweets for my sweetie

I was cleaning up the kitchen bench yesterday when I stumbled upon a lolly bag. My son attended a child birthday party a little over a week ago and the lolly bag had been sitting on the bench, long forgotten. Alex was happily eating his lunch so I offered him the deal if he finished his lunch he could have a few lollies as a treat. He eventually got there so I gave him half a dozen jelly baby type lollies. Later on that evening, as Alex was struggling through his dinner as usual, his father offered him the same deal. "Finish your dinner and you can have a few lollies" Alex eventually got through the meal and he was given five lollies. Later on that night I was thinking, 'Geez Alex has had a lot of lollies today!' and cast my mind back to a previous birthday party.
It was your fairly standard birthday party, children running around, boys 'shooting' one another of course Alex did not participate in this, he doesn't understand the social norms so he lay on the floor driving a car back and forth in front of his eyes. There was fairly standard party food, cupcakes, lollies, chips and all sorts of things that would make any childs eyes light up. Alex wasn't any different to any other child when it came to treat food he had about half a cupcake and was green ear to ear from the icing. He requested chips, we gave him two or three, he asked for lollies, again we gave him a small amount. The other children whilst running around were downing handfuls of lollies, handfuls of chips a cupcake was downed in a matter of seconds and they eyed off having another. The end of the party was my real eye opener. A 'loot bag' was handed out to each child, Alex recognised it straight away and asked for a lolly. I told him no, he'd had enough sweets and treats that day and he can have some tomorrow he accepted the answer and went back to playing. "Geez he's good!" I hear near me I look around and see one of the mothers nearby is talking to me. I look around and every other child is digging hand over fist into their lolly bag, most were empty before they left the party. Should it be expected for a child to tantrum if they are told they're not having any more junk? Or was it the fact that earlier on that day I had broken the news to this parent of my childs recent diagnosis of Autism, and she expected a tantrum like in the movies? But am I an over paranoid parent who doesn't 'let up' and let him go hog wild crazy at parties? Or in a house of over-hyped, over-tired and over-sugared children, am I the sense of reason?

So maybe it's time I blogged

Many people I know blog. I have never really understood why, what the point was etc. Then I thought, I have all these things I'd like to write about mainly what I'm going through in life at the moment and geez wouldn't it be good to get it all out there.

Alex starts his special program at Southern Autistic School this Wednesday, so I'm going to find myself with something that's been completely foreign to me for the last nearly 4 years: Free time. I haven't figured out exactly what I'm going to do with this free time yet, it's not quite enough free time to return to the workforce, but that doesn't mean I can't achieve anything. This blog is just one new project I'm experimenting with.

I will be using it to get out what I'm thinking, I'm hoping for it to be meaningful, not mindless, but tackle both large and small issues.You may find that I might soapbox a little, especially about Autism, but there are so many misconceptions, generalisations and ignorance out there that I honestly feel that people need to be taught what Autism is,and that no two Autistic children are ever the same.

Enjoy my blog, or not....