Life in the fast lane...............*

(written in 1998)

We started off life as a relatively normal family.......the first child, William, was a curly-haired cherub, who showed all the signs of normal development........cuddly, great eye-contact, good play and imitative skills.

William aged 3 months..great eye contact!!!!

Then he seemed to be insidiously derailed about halfway through his second year......his speech progression vanished from babble to screaming, alternating with weird noises and muteness.

Will eating his yummy Vegemite on toast.....still great eye contact and imitative skills..aged about one.

And then he fell in love with a Hansa toy block trolley, pushing it for hours around the yard. I was reassured that the onset of late speech happened to my husband so maybe I shouldn't worry.......David spoke when he was three and besides Einstein didn't talk until age 5 and then couldn't again be understood till age 9!!!

When Will was halfway through his third year, Andrew was born with Beta-haemolytic strep pneumonia and was immediately in ICU for a week fighting for his life.

In the time leading up to the birth, Will became unruly and aloof, even prone to escaping and head-banging. (He regularly shattered glass windows with his head too...) An admission to hospital for gastro and subsequent speech therapy assessments did not produce a diagnosis, which really happened in a fortuitious way when a child psychologist happened to visit his day care centre to assess another child and heard my complaints. So a full diagnosis of autism at age three and we were lucky to get him into a fabulous autistic centre in Melbourne, IRABINA, for early intervention.

Will's first day of school......10th Nov, 1987. Getting on the Irabina bus.

 

William aged four and deceptively cute to look at.

By this time of Will's diagnosis, Andrew was 6 months old and likewise, initially perfect....we thought - at least he was fine! WRONG!!!!! He became dramatically autistic almost overnight like the old English fairy tales about changelings being left on doorsteps. The two boys had totally different symptoms of autism

Andrew sitting in the cedar chest of drawers aged 2.

....the eldest lined up toys and head-banged, whereas the youngest rocked incessantly, twirled his fingers and played with the terylene curtains to see the light coming through them. The genetic tests were fine......and it wasn't until years later that I came across articles in ARRI (the Autism Research Review International) discussing US vaccine damage claims related to disabilty. And I immediately twigged.......as both boys, especially the eldest, had considerable reactions to their infant immunization....drowsiness, irritability, disinterest in feeds and fever.....and they WERE normal right from the start. Our boys' professor, a world expert on autism, verified Andrew's behaviour as normal when he saw our home movies.......and the Child Health Sister thought that I was loopy ringing up for a psychology assessment when she had recently seen Andrew for his check-up.

Andrew finds the ink pad!!!

And you would have to wonder whether a medical insult had occurred to make two boys' behaviour become retrograde, especially number two who seemed to be almost instantly brain-damaged.

William in his Irabina school uniform....aged 9. This was taken at the Irabina (satellite) classroom unit in Bayswater Primary School.....a great concept that allowed integration for autistic children and also reverse integration for the mainstream kids.

Anyway, years have passed now.........they have made great progress because of our persistent efforts and the excellent intervention from Irabina for 7 years each. (Unfortunately, we have wasted time and valuable money on quack cures - the list is long - and I have seen my friends get burnt too with false promises.) Will, the eldest is now a 6' tall verbal man-child...but has always tended to be aggressive, which has now become a placement issue. He is sufficently able to be in a great special school here - ASHWOOD SCHOOL. He is the one who is obsessed with Godzilla and Armageddon..you cannot access his bed without knocking over cardboard skyscrapers and helicopters.

Andrew playing music in the dishwasher.

Will binge-eats and steals food and hangs around our kitchen like a bad smell. He sings that Aerosmith song "I Don't Want to Miss a Thing" totally tunelessly and often too......can I move home?????? The second son, Andrew, fits into the most autistic category there is..Profound......when he became autistic, his dietary intake plummetted as did his fluid intake.

Andrew (Houdini) constantly escaped from his car booster seat - so we had to use an army belt between his legs over the full harness, then a luggage strap around the whole seat and child plus another to secure the harness straps.....and within 30 seconds or so, he would escape and be clambering around the car. So we then used a Special Purpose Car Seat (for disabled kids) - it weighed a ton but it kept him safe!!!!

Andrew became skeletal and anaemic.........so we had a brilliant gastrostomy tube inserted, which has saved his life and given us a healthy happy child. All he has to show for it is a little Bard Button on his tummy....like the cap on an inflatable toy. No big deal! He is mute but can scream as loudly as a drunken Aussie on the outer at the footy........also we finally toilet-trained him at age 10!!!!! A bloody miracle!!!!! His teeth are fine, thank you..he often leaves his imprint on your arm when he gets cranky. In 1995 we undertook a massive house extension (a la The Money Pit!!) and doubled the size of our 12 square tiny cottage to a double story, necessitated by the need to move the big boy into his own living area.

Andrew in the Irabina early intervention program........they did wonders!!!!!!!

You see, these two do NOT get on at all..they hate each other with a vengeance that far exceeds sibling rivalry. It is the excessive and mutual autistic obsessiveness of brotherly hate accelerated an octave or two. Behaviourally, they both settled down with the extra space and, at this time, I heard of an SRN, Sue Roebuck, who specialised in natural gender selection - something that I, a midwife, had never encountered professionally. I was recommended her by a parent advocate who had tried for two girls and achieved them. We weighed all the pro and con factors for exposing a normal child to autistic brothers and we decided to go ahead. And, down the track, I would have to say that it is the best thing we have ever done.........as she is the happiest, most gregarious easy-going toddler imaginable......she plays with the boys and they with her. Plus, in the last six months, realising that she needed to model on normal peers, we do tadpole swimming classes and also weekly daycare in a 2yo group......she loves it!!!! I must confess that (as I thought!) raising a normal toddler compared to her severe autistic siblings has been a piece of cake.

Dead set easy!!!!!!! I could easily have had four or five of her!!!!!!! So, knowing that, statistically, autism was a 1:5 occurrence in girls and realising that we had seen very, very few at Irabina....we underwent the program....it was very difficult too!!!!!! The diet was the worst part. We also knew that we could delay the baby's immunisation till after the first 18 months to maximise her chances. In Australia, childhood immunisation is not compulsory but there is no avenue, bar the courts, for compensation....as in the US and New Zealand (with the ACC).

Anyway, I digressed there.....our normal baby girl was born two years ago - and she did not have any vaccines till 18 months and we also staggered the courses...first we did the HIB for 6 months; then oral Sabin for 6 months; then the MMR; now at nearly 2.6 years we will soon do the CDT. We dropped the Pertussis component as, next to the MMR, this was the most likely cause of their disability. She had mild Whooping Cough at 18 months and recovered quickly.....so fortunately we could omit it.

Will dressed in his Ashwood School uniform, does his Men in Black impression!!!!!

Please note that I am not anti-vaccination at all......the course and timing of immunisation we undertook with Holly was relevent to our family history. Even our medical specialist concurred that we could NOT exclude vaccine damage as a cause of our sons' autism. I tend to think that they might have had some genetic predisposition for vaccine damage. There is a family history of severe food allergies. Our testimony is that she will never be autistic and her normalcy relates to two factors......female and/or delayed immunisation. Even after such unreal happiness, we were to face an assault on our family life........

Andrew's behaviour deteriorated for a while under the care of a male agency carer in an after-school-hours program. The department had organised a carer for each boy as they both needed full 1:1 attention and I was busy/exhausted with the new baby. All I can say that a gorgeous-looking, affectionate mute child is obvious prey. I would never trust a general police check nor anyone's personal recommendation for a male carer ever again.

The experience has burnt us badly. Andrew's behaviour, experts concurred, was also consistent with our worst suspicions - unfortunately, we initially assumed that a change in routine/structure was the cause. Nowadays, Andrew has only female carers after school (to help me with my workload) and they have been fantastic and he has come through all this trauma with flying colours. Our cuddly affectionate child has returned......and he was off his face for almost a year. It was a nightmare. How any person can justify that paedophilia does not harm children is beyond me.

Andrew in his Irabina school uniform - aged 5.

Sitting back, writing this, if there was anything I could impart to a parent reading this, concerned about their autistic child's behaviour.......I would reassure them that all the worst stuff (smearing/eating faeces; escaping; refusal to be toilet-trained; removing clothes; headbanging; swearing; eating shampoo, detergent, sand, dirt = pica; smashing windows and walls; breaking appliances; going berko in the car if the route is different; dead drops in public necessitating a special wheelchair and restraint) have all disappeared......they were all phases, some protracted and others small.

The only ones that are fixated/permanent are:

1) Andrew's lack of recognition of hunger and thirst, which I essentially relate to brain damage - but doing enteral feeds is so easy (and life-saving as his GE specialist said that he would not have survived the year had he not had it performed) that it is a non-issue. My hubbie, who gets phobic about hospitals and nursing procedures doesn't mind doing GT feeds at all.

2) Will's tendency for aggression....it is phasic in its intensity. Placement is necessitated by the sheer size of him. My two kids are lovely really. They have un-autistic qualities too. Will is a whizz at USNF 97.....he has incredible rapid-fire computer game skills....and has a fast learning curve with F-18 type games.....move over Tom Cruise! And he is classified as severe, scraping into his higher-ranked school with an IQ of 70.

Andrew posesses sheer rat-cunning.........and an incredible memory. He uses his scanning eyes (like his older brother in a toy shop!) to know EXACTLY when we have taken our eyes off him. We are just now giving him some slack on the leash after years of close 1:1 non stop supervision. Apart from him biting the paint off the Land Rover, he has been almost trustworthy. But the vacuum cleaner still lives in the roof.......as he still can open the padlocked barrel and rip up the bags, blowing up the dust-clogged motor. Next one will be a bagless Dyson for sure!!!!!!

Unlike some, I don't call my kids 'special kids' - they are just 'different kids'. And I don't hold out any hope for a cure.........early in the piece, when they were little, I thought that someone would unlock the key to the door and they would revert to being normal.....of course I cannot turn back the clock, refuse their needles and make them normal again. I have been cheated.....and it is OK to be permanently pissed off about it. But now, only because many years have passed and they will be young adults soon, I have become a realist. I appreciate them for being what they are.....I like their amusing quirks. It keeps me sane!!!!!!! It is the funny things like sitting at a Xmas barbie and having your feet squirted by a boy armed with a water pistol who, when asked WHY?????? says that the packet said that "it squirts 18 feet". The literal side of autism is fascinating. Am I allowed to grin???

(*A story I did for a friend's website five years ago when both boys were just on the cusp of serious escalating behaviour.)

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© Debs 2003