Living with autism

[philreich]

I posted this on TPFP a couple of years ago, and it received a fairly positive response, so I thought I'd reproduce it here.

My wife and I have 2 wonderful boys (aged 16 and 15). They're both perfectly healthy, but they're both autistic. We take the attitude that it's not as if they've got cancer, and may not see Christmas - I recently read about a baby girl in Queensland, who died of cancer, aged only 2. So it's all relative, and there's always somebody who's FAR worse off than you are.

My older son Jason is a remarkable kid. His autism is not as severe as that of my younger son Brian, but like most (if not all) autistic people, he's got certain traits that set him apart from anybody else I've ever met. For instance, he's got a morbid fear of bare feet!!! In the middle of winter, if somebody in the family has nothing on their feet, he goes nuts, and demands that the offender at least puts socks on. One day, he was in the lounge, and Brian walked into the room with naked feet. Jason yelled out, "Mum - can you get Brian out of here: he's flashing his bare feet at me."

He came out with a classic recently. He's a deep thinker, and he asked me about what it's like to be married - in particular, he wanted to know about love making. He said, "So you have to take ALL of your clothes off when you're having sex?" I just said, "Yes mate." I then nearly fell off my chair when he added, "Does that include your shoes and socks?"

School kids don't take too kindly to meeting kids who are a little bit different, and throughout his school career, Jason has copped more than his fair share of rough treatment. Autistic people often take what people say to them LITERALLY, and one or two of his class mates have taken advantage of this by saying to him things like, "Jason - I'm gonna eat you." The poor kid thought he was going to die!!!

On the positive side of the ledger, Jason has a phenomenal mathematical brain. Please bear in mind that he doesn't use a calculator - he and I were driving one night, when out of the blue he blurts out, "Dad - what's 10 times 2016?" Easy one - I said, "20160." You could tell his mind was ticking over at a million miles an hour - he then said, "Oh that's right - that's 64 times 315, isn't it?" I nearly ran up a stobie pole.

On the other hand, Brian is just hard work. He's a gorgeous kid, but wow - is he a full time job. On the Cosby Show in the 1980's, Cliff Huxtable (played by Bill Cosby) once said to his son Theo, "Son - I brought you into this world, and I'll take you out of it." At times, I've had similar thoughts about Brian

Brian is still in nappies. I'm hoping he finally gets the idea before Port wins another flag (which hopefully isn't too far away!!!), but I'm not holding my breath. On numerous occasions, we've left him in the bath for a bit too long, and upon our return to the bathroom, the colour of the water and/or the walls has changed to brown. I won't elaborate on this disgusting subject: you get the idea!!!

Brian is also a wanderer (if given the opportunity). I was sick in bed one day, and my wife accidentally left the front door open for a few seconds - in that instant, Brian took his chance to escape. After he'd been missing for a while, Jason cheered us up by saying mournfully, "I no longer have a brother." (yeah thanks son - you sure know how to make us feel better!!!)

A policeman found Brian a couple of hours later, playing on the swings in the park across the road. He simply wanted to go and play, and because everybody was too busy to take him, he just decided to go off by himself. We're now older and more vigilant: security has been stepped up to ensure that a similar incident doesn't occur again.

Positively, Brian is a wonderful singer. His speech vocabulary is fairly limited, but when he decides to burst into song, it puts a broad smile on our faces - it's a delightful moment.

I could say a lot more, but I don't want to bore everybody for too long. Let me finish by re-emphasising the fact that an autistic diagnosis is NOT a death sentence. It's a shock when your child is first diagnosed (our 2 were both diagnosed a couple of years before they went to school), but autistic kids can bring you a heap of joy, as well as a mountain of challenges. If you suspect that your child may have this condition, let me urge you to NOT put it off, but go to Autism SA (that's if you're in Adelaide - if you're elsewhere, your circumstances may be different) and find out for sure. Autism SA is a wonderful organisation - they've given us an enormous amount of support over the years: we've got so much to be thankful for.

 

[Ford Fairlane]

As the parent of a son with Asperger Syndrome I can only applaud you phil. It's difficult for people to appreciate what life is like with neurologically atypical kids.

My son is high functioning but we have had our issues. In some ways it raises the difficulty levels as he seems 'normal' to everyone else and he doesn't get cut any slack for his behaviour.

Dealing with his life issues prepared me well for moderating here.

 

[I Dont Care]

Our daughter is now adult, but still 3, and always will be...will never be fully toilet trained. It is challenging to say the least. I have a nephew with asperger

 

[philreich]

As the parent of a son with Asperger Syndrome I can only applaud you phil. It's difficult for people to appreciate what life is like with neurologically atypical kids.

My son is high functioning but we have had our issues. In some ways it raises the difficulty levels as he seems 'normal' to everyone else and he doesn't get cut any slack for his behaviour.

Dealing with his life issues prepared me well for moderating here.

Ford: you have my sympathies - I'd far sooner look after my two boys than moderate this lot. Do you have any hair?

 

[I Dont Care]

Ford: you have my sympathies - I'd far sooner look after my two boys than moderate this lot. Do you have any hair?

You mean "you lot" I've never needed to be moderated myself

 

[philreich]

You mean "you lot" I've never needed to be moderated myself

Don't look now Pinocchio, but your nose is growing........

 

[Ant Bear]

I think my dog has ADD.
Throw the ball..
Fetch the ball.
Throw the ball..
Fetch the ball.
Throw the ball..



Wait, what were we doing again?

Seriously, I have full admiration for Phil, Ford, Greg and other parents and carers who dedicate their lives to looking after their progeny. Parenting is hard enough as it is.

 

[Greasyrhys]

Definitely nothing wrong with being Autistic. I've got Asperger Syndrome myself, but it's no barrier for wanting to achieve goals.

 

[Andre]

I can see why the idiocy on linking Autism and Vaccines touched so many nerves here. Of my two boys the eldest 9, is what would have been called Asperger's before they put out the pile of poo that is DSM5. Now he's just classified as very mild ASD. Unless you were told you would be unlikely to pick it up. His main issue is the inability to pick up social cues, rather than academic. Seeing him so desperately wanting friends though and failing more often then not by not knowing when to back off / tone it down is hard to watch.

The younger 7, has just completed a bit over a year at Blackwood's Autism unit, in preparation for being back in a mainstream school from tomorrow. Like many ASD kids he has his obsessions, but we're lucky in so much that he's been evaluated at a normal IQ range for his age (some areas above, some - more the social ones - lagging). Rain Man and it's ilk with the idea that all those with Autism are some sort of savant is definitely an illusion. Odds are kids with Autism also run into other issues with learning, interrelated to it. Having boys with ASD mild enough to make a go at normal school is enough of a handful to have me gobsmacked (in a good way!) at those who cope with kids that require a lot more care. My hat goes off to them. I'll second though that Autism SA is a brilliant organisation.

 

[philreich]

My beautiful wife is the coordinator of a group for autistic teenage boys. It's called Youth Konnections, and it runs on Wednesday nights during the school term, and meets in Salisbury. Some of the boys say that their only friends are the boys they meet each Wednesday night - such is the mateship they've developed since joining the group. One boy comes with his mother from Port Adelaide each week: he says he wouldn't miss it for anything.

My son has gained two close friends from the group: it's been a gift from heaven for several families, including our own.

 

[GranFormaggi]

philreich I remember reading your post on TPFP and recall being so impressed. I have 2 boys, one is 3 years and the other 9 months.

I don't have any reason to suspect either has autism, however your comment about there always being someone else worse off resonates.

At our 12 week foetal scan they found an anomoly which in the majority of cases is associated with chromosomal abnormalities which (and this is the precise term the consultant used) are "incompatible with life".

15000 kms from home my wife and I endured a horrid week to wait for a test and results that ruled out or ruled in this.

Thankfully that test was negative, but thereafter we endured 4 weekly scans eliminating spinal deformities, heart issues the list went on. By the time my son was born we knew he had something called an exomphalos, which is when the organs of the body are born outside of the abdomen. In our case it was a grape sized piece of his bowel that was surgically fixed the day he was born.

In the days spent in the NICU I counted my blessings. We knew what we were dealing with, and that it could be fixed. There we were amongst tiny premature kids who will have life long lung issues. A poor couple who had a normal pregnancy but whose newborn had a temperature of 42 degrees. They managed to get it down by packing the baby in an ice suit, but they had a year long wait to see if the child had suffered any brain damage as a result. Watching them deal with phone calls from well-wishers who wanted to come and visit was heart-breaking.

I remember being a bit rude to my mum when she expressed her sympathy on what we had been through. Not one of my proudest moments but one that was influenced by the stresses of the environment. I felt guilty that post surgery my son could expect an entirely normal life yet these other parents were going through the mill.

My 3 year old had another surgery at 19 months for something else and may need his abdominal muscles tightened in the next year or two, however his outlook is superb.

There's always someone else worse off.

 

[philreich]

philreich I remember reading your post on TPFP and recall being so impressed. I have 2 boys, one is 3 years and the other 9 months.

I don't have any reason to suspect either has autism, however your comment about there always being someone else worse off resonates.

At our 12 week foetal scan they found an anomoly which in the majority of cases is associated with chromosomal abnormalities which (and this is the precise term the consultant used) are "incompatible with life".

15000 kms from home my wife and I endured a horrid week to wait for a test and results that ruled out or ruled in this.

Thankfully that test was negative, but thereafter we endured 4 weekly scans eliminating spinal deformities, heart issues the list went on. By the time my son was born we knew he had something called an exomphalos, which is when the organs of the body are born outside of the abdomen. In our case it was a grape sized piece of his bowel that was surgically fixed the day he was born.

In the days spent in the NICU I counted my blessings. We knew what we were dealing with, and that it could be fixed. There we were amongst tiny premature kids who will have life long lung issues. A poor couple who had a normal pregnancy but whose newborn had a temperature of 42 degrees. They managed to get it down by packing the baby in an ice suit, but they had a year long wait to see if the child had suffered any brain damage as a result. Watching them deal with phone calls from well-wishers who wanted to come and visit was heart-breaking.

I remember being a bit rude to my mum when she expressed her sympathy on what we had been through. Not one of my proudest moments but one that was influenced by the stresses of the environment. I felt guilty that post surgery my son could expect an entirely normal life yet these other parents were going through the mill.

My 3 year old had another surgery at 19 months for something else and may need his abdominal muscles tightened in the next year or two, however his outlook is superb.

There's always someone else worse off.

When I get the time, I hope to also reproduce my TPFP article called "Kids - they're amazing." As part of that article, I mention that there's nothing as confronting as watching your own child enduring pain, flat on his/her back in a hospital. The Hughes family had to face something unimaginable recently: we need to give our kids all the love we can, because you just never know what's around the corner.

 

[Powerstufff]

As the parent of a son with Asperger Syndrome I can only applaud you phil ....

My wife's cousin in Melbourne has a son with Asperger's. He is the same age as my youngest and we've often stayed with them when over for Port games. He's high functioning from my perspective, several times I took the two of them to games and there were no huge problems. He was absolutely inflexible re food that he would eat which made for an interesting lunch in a food court when the boys were about 10. And he was very literal/lacking in subtlety when spoken to, oddly like Sheldon in Big Bang in some ways. His parents were brilliant with him. I remember his mother telling me he'd been taught to mimic some aspects of normal non-verbal communication by making eye contact when you spoke to him and blinking and nodding during that conversation. I watched it next time I talked to him, it was very clever. Made him look a lot more polite than some kids with no issues.

 

[HaroldOliver]

Seriously, I have full admiration for Phil, Ford, Greg and other parents and carers who dedicate their lives to looking after their progeny. Parenting is hard enough as it is.

Hear, hear. I wholeheartedly second your admiration AB.

 

[philreich]

Thought I'd bump this thread, because Brian is now almost 5 years older, and let's just say I have 2 full time jobs!!! In recent months, he's become considerably more aggressive towards my wife - she has scratch marks on her arms and neck to prove it. Most disturbing of all is the fact that he has grabbed her by the throat while she's been driving!!!!!!!!!

Last night may well have been the turning point. We went to see our family doctor, hoping to get him to prescribe some kind of sedative, to assist us in curbing his aggression. While we were there, the doctor saw first hand what Brian is capable of: one moment, he was sitting quietly, looking at my wife's phone - without warning, he threw the phone across the room and physically attacked my wife!!!

The doctor asked to see us separately, so my wife and Brian left the room, and he then told me that the time had come to take him to the emergency ward at Lyell McEwin Hospital, with a view to having him admitted. We're taking him later today, so we're not sure what the future holds. We've done our best as parents, but it's now time for somebody else to take the reigns, because my poor wife needs a well earned break!!!

 

[Eddie Dingle]

Thought I'd bump this thread, because Brian is now almost 5 years older, and let's just say I have 2 full time jobs!!! In recent months, he's become considerably more aggressive towards my wife - she has scratch marks on her arms and neck to prove it. Most disturbing of all is the fact that he has grabbed her by the throat while she's been driving!!!!!!!!!

Last night may well have been the turning point. We went to see our family doctor, hoping to get him to prescribe some kind of sedative, to assist us in curbing his aggression. While we were there, the doctor saw first hand what Brian is capable of: one moment, he was sitting quietly, looking at my wife's phone - without warning, he threw the phone across the room and physically attacked my wife!!!

The doctor asked to see us separately, so my wife and Brian left the room, and he then told me that the time had come to take him to the emergency ward at Lyell McEwin Hospital, with a view to having him admitted. We're taking him later today, so we're not sure what the future holds. We've done our best as parents, but it's now time for somebody else to take the reigns, because my poor wife needs a well earned break!!!

Good luck Phil

 

[philreich]

Good luck Phil

Thanks mate. He's been admitted to the emergency department at Lyell McEwin - he's so bloody strong, that they had to shackle him to the bed before they could treat him!!!

 

[JimmyBeerCans]

Best wishes Phil at least with observation they might be able to find a positive treatment for the aggressive outbursts.

 

[philreich]

Best wishes Phil at least with observation they might be able to find a positive treatment for the aggressive outbursts.

Yeah JBC it might be as simple as adjusting his medication levels: we'll find out tomorrow. A comment from one of the workers resonated with me. I asked him if the hospital sees people like Brian regularly - he touched me by saying, "A lot of meth heads come in here: I've got no sympathy for them. But your son - he's worth it." I nearly shed a tear!!!

 

[Garibaldi Red]

Best wishes to you, your wife and your sons. Here’s hoping for really positive outcome for you all.

 

[philreich]

Best wishes to you, your wife and your sons. Here’s hoping for really positive outcome for you all.

It's looking encouraging. The latest is that they won't be allowing him to go home until they're sure his aggressive tenancies are under control with the right amount of medication. So that might mean he'll be in respite for a few days, which will give us some welcome relief!!!

 

[Turiyasangitananda]

Thought I'd bump this thread, because Brian is now almost 5 years older, and let's just say I have 2 full time jobs!!! In recent months, he's become considerably more aggressive towards my wife - she has scratch marks on her arms and neck to prove it. Most disturbing of all is the fact that he has grabbed her by the throat while she's been driving!!!!!!!!!

Last night may well have been the turning point. We went to see our family doctor, hoping to get him to prescribe some kind of sedative, to assist us in curbing his aggression. While we were there, the doctor saw first hand what Brian is capable of: one moment, he was sitting quietly, looking at my wife's phone - without warning, he threw the phone across the room and physically attacked my wife!!!

The doctor asked to see us separately, so my wife and Brian left the room, and he then told me that the time had come to take him to the emergency ward at Lyell McEwin Hospital, with a view to having him admitted. We're taking him later today, so we're not sure what the future holds. We've done our best as parents, but it's now time for somebody else to take the reigns, because my poor wife needs a well earned break!!!

All the best mate! I used to work as a nurse at WCH. We'd get kids in for observation (poor feeding, change of medication, change in behaviour). It was tough at times not knowing the cues in order to interact. Parents were a god send. I admired how they'd interact with their child, and it made our job so much easier on us and the child. It was beautiful to see the mutual displays of affection.

I hope you all get a good outcome from the admission. It sounds like your wife in particular needs some respite. Thanks for sharing your story.

 

[Greasyrhys]

Hope it goes well Phil, doesn’t sound good.

 

[philreich]

Hope it goes well Phil, doesn’t sound good.

Thanks mate. I've been at the hospital with him all day, and he's barely stopped for more than a minute or 2 - I reckon I've explored every square inch of Lyell McEwin Hospital several times over. I asked the nurse to give him a double dose of chloroform for his dinner .

 

[GranFormaggi]

Thanks mate. I've been at the hospital with him all day, and he's barely stopped for more than a minute or 2 - I reckon I've explored every square inch of Lyell McEwin Hospital several times over. I asked the nurse to give him a double dose of chloroform for his dinner .

My heartfelt best wishes on Father's Day