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Mark’s story

About Lawrence

I have one child that is on the spectrum, Lawrence who is aged 9 years old.  He has adult stepsisters and one stepbrother. Lawrence is full of energy and stamina and is very excitable. His interests include: Batman, Lego and cartoons.  He’s not very outdoorsy, but if you asked him to go out, he generally answers ‘no’, but if you take him anywhere he has the time of his life, whether it’s swimming or cinema or any activity, especially anything that stimulates him.  His favourite thing is to go to the park, on the swing, but he’s not a fan of taking his bike.  He can ride a bike but only with the training wheels, and he doesn’t quite get the combination of the pedalling and the steering.  Lawrence’s special interest is drawing, he draws for probably three hours every day.  He draws and draws and draws.  If we’re out somewhere and somebody’s forgotten his pad and his pencils, then, it’s chaos.

A typical day with Lawrence is that we will wake him up.  He doesn’t sleep; he moves a lot in his sleep, so when we do wake him up he’s very tired, like a zombie.  We’ll hold his hand, lead him to the shower, turn it on.  He now can shampoo himself and wash and everything, but then he’ll come out and you’re literally handing him the toothbrush.  He calls us his butlers.  During the school morning, we assist him to get organised, we help him put his shoes on, otherwise, we’ll not get out the door.  He’s doing more for himself, a hell of a lot more than he was two years ago, but he’s still greatly assisted.  

Probably 80% of the time my mother-in-law picks Lawrence up from school, and he’ll spend a couple of hours at her house, until my wife is finished work or I’ve finished work, to go and pick him up.  Sometimes he says he’s bored, but as long as he’s got his colouring-in and his pens, pencils and everything he is OK.  My mother-in-law’s Greek and she just pretty much force-feeds him for the couple of hours that he’s there with her, following him around the house when he’s moving, putting food in his mouth!

First noticing developmental delays

I hadn’t had children previously that young, so I wasn’t quite as onto it as my wife in noticing that something was a bit different with Lawrence.  She’d had children before and she would say to me, ‘there’s something not right, I can’t put my finger on it’.  She’d say, ‘oh, you know, Chloe was walking at this time, or Pierce was sitting up’.  They all had different measurements, and he was well behind.

From when he could stand, we used to actually call him Arrogant Baby, because he could be with my mother-in-law for a day, and she’d be waving to him, bye-bye, bye-bye, and making a fuss, like grandmothers do, and he’d sit there like absolutely vacant, emotionless, wouldn’t make eye contact with her.  We thought that he’s just aloof.  Then I read something in a National Geographic magazine, and it was about autism. It showed pictures of twin American boys, who were both autistic.  One was staring really intently, the page was close to his face, and the other one was flapping in front of the TV, and I was like, ‘that’s what Lawrence does!’. Even as a two-year-old he would jump and flap and stim.

We put him kindergarten at age of two-and-a-half, and after six months, he had a teacher named Miss Christine. On the parent how’s-your-kid-going sort of chat one evening, she brought up the ‘A’ word, the autism word.  She asked if we had ever heard about it and if we knew much about it.  It turned out, she had a niece that was on the spectrum, and she said she saw a lot of similar traits in Lawrence.

We responded that we had considered it; we’d seen the National Geographic magazine, we’d watched some stuff on telly, and we were like, yes, you know, he is like that. I’m not saying you hope he hasn’t got it; it’s split: you don’t want him to have the disadvantages that that brings, but at the same time, having an answer for why he’s like he is, is very valuable.  At least you can start giving him what he needs, the right stuff, when you know what it is that they’ve got.

Getting a diagnosis

We then booked Lawrence in to see the paediatrician.  It took a frustratingly long time, and the school wanted to know if there was going to be a diagnosis.  We saw one paediatrician, then were handed over to another one, but she wouldn’t actually diagnose Lawrence on her own.  She wasn’t confident enough; she wanted a panel so she sent us off to a diagnostic centre. So, we went there, and we had a very disappointing outcome, to be honest.

We saw a doctor who came up from Adelaide, about once a month.  He sat with a speech therapist that we’d previously seen who had indicated from her own experiences, that we were on the right track with autism.  But the doctor sat there with his clipboard and ticked.  He didn’t interact with Lawrence at all.  He left him in a corner.  Lawrence is maybe three-and-a-half years old now, getting close to four.  Lawrence was playing with some blocks in the corner, and he wasn’t really playing; he was just sat there.  The doctor just observed. He asked us about what behaviour had caught our attention.  He recommended about six months of speech therapy, that Lawrence should catch up and good day.

We went out in the car park, and were followed by said speech therapist, who actually came out and said, ‘yes, I can’t believe that either’.  She gave us a name on a piece of paper, of another paediatrician, because what happened in there was wrong. Then we endeavoured to get in touch with the paediatrician, but he was fully booked; he wasn’t taking any more people in.  We were put in touch with yet another paediatrician, and she was absolutely fantastic from the word go.

Our second paediatrician in the meantime, copied us into a very tersely worded email to the diagnostic centre.  She felt like we’ve just lost the best part of the year in him accessing therapies.  We were sent back there again, where Lawrence had to do IQ tests, but he was so fidgety, and they abandoned them after 20 minutes, because he saw it as a game.  He had the intelligence there to take the Mickey out of them, and they could see that and they said he was just messing around.

He was diagnosed with a little bit of ADHD there, but in need of speech therapy because he has a developmental delay. I hadn’t actually connected with Autism NT at this stage. We privately got a speech therapist based on that recommendation. We used to go to her house every Saturday morning, but she was having a baby, so she had to stop seeing Lawrence.  She referred us to another speech therapist. We had started this all on our own back.

The speech therapist advised us that we could get some funding and the next thing, we had a lady call from Autism SA come around our house after work one day. Lawrence was doing his usual jumping up and down. As soon as he gets in from school he just strips everything off, he just lives around the house in his undies.  Lawrence was flapping and jumping and squealing and excitable in front of the TV, and she came in and she asked how there can be any doubt of an autism diagnosis.

We weren’t getting a diagnosis of autism, but his therapist and teachers were seeing it.  We literally didn’t get a diagnosis until about two months before his sixth birthday.  The school were doing what they could, but they weren’t specialised.  We were very fortunate that they had a teacher, when Lawrence was in transition that was an ex-occupational therapist.  She had visual aids and social stories. 

The following year the teacher wasn’t so good.   She would upset my wife by saying ‘I don’t know why you bring him here; he’d really be better off at a special needs school’.  That was the last thing we needed to hear.  My wife left there in tears. I met up with her and, reasoned that this is just one person’s opinion, we’ve seen that not everybody’s like that, and you’re going to run into a bad one occasionally.  In the meantime, our latest paediatrician said that we had a diagnosis. We were then able to continue for a couple of years with the speech therapist.  We did TalkAbility, which used up a big chunk of our available funding.

Talkability

Undertaking this program was really worth it.  I could see it wouldn’t work for everyone, but the speech therapist was pretty selective on who was eligible. It wasn’t something for non-verbal clients; they had to be at a certain developmental level for it to be a benefit.  We met many adults that we’re still in contact with through TalkAbility, because you’re with the same people every week for a long period of time.  TalkAbility is a Canadian programme that teaches the parent on how to best communicate with their child to get positive outcomes.  It’s basically training to bring your child up to the next level of sociability. The evenings where we were meant to be exchanging information, generally descended into parents just swapping stories and creating a support system.

Support systems

We didn’t have much of a support system outside TalkAbility.  If you tried to talk to relatives or friends about autism, they had no idea.  The amount of people that just thought, ‘oh, yes, I’ve seen Rain Man, I know all about that’.  My mother-in-law was totally in denial. My wife just stopped telling her everything, because she was wasting her breath.  Now my mother-in-law can recognise it a lot more, but Lawrence is now nine years old, when he was four, five, six, she absolutely did not see it.

My mum was very good, but a little bit out of date, because she used to teach special-needs children many years ago. It’s quite heartbreaking that she wasn’t able to impart more of her knowledge because she was going downhill fast with dementia.  We lost all that mine of knowledge. She was from the 70’s era where they would literally in England, have the blind kid, the muscular dystrophy kid, the albino child, the Down syndrome child, the autistic child, and the child with spina bifida would all be lumped into one classroom. She had one assistant; but she had a class of about ten students.

My wife and I had a feeling of isolation. The first people you talk to are your friends or relatives, and if they haven’t got an awareness and you’re having to explain every little step of the way, or, more importantly, make excuses and give the reasons for how and why your child is acting like they are (that they’re not just a spoiled brat playing up in a shopping centre or won’t keep still or is climbing all over grandmother’s furniture), it’s hard.

Siblings

Lawrence’s youngest sibling definitely felt like she wasn’t getting the attention that she was used to, because she was the baby of the family until she was 13 years old. The older two were very protective of him.  I remember one instance we saw them through the window, they weren’t teasing him but they were mimicking him.  They were doing the jumping and running back and forth.  We gave them a real bawl outside where Lawrence couldn’t hear, and absolutely read the riot act on: he’s your little brother and that he counts on you. The last thing Lawrence needs is his siblings mocking him.  After that they were very upset, but they never did it again.  I think they realised the magnitude of what they’d done.  They’ve all been very good and very caring.

The biggest issue with his siblings now is that Lawrence absolutely idolises his big brother; his big brother’s 21, and Lawrence is nine.  He pesters his brother and will not leave him alone.  When his brother comes home from work and just wants to be left alone in his room or talk to his friend on the phone, Lawrence is there saying ‘look at this, look at this, look at this!’.  His mother and I always stop and give him our full attention, maybe we shouldn’t, but we see that the siblings stay away or say to him that they have had enough, and they’ll cut him off.  He doesn’t get upset, but he’ll have an angry five minutes because he just cannot fathom why his siblings no longer want to talk to him.  He just doesn’t get that he has been repeating himself and talking to someone that’s already tired for too long. He has a lack of social awareness. 

How life has changed

My wife and I have often joked – I don’t read too much into star signs, but we’re both Aries.  An Aries bad trait is that they are impatient, and they don’t suffer fools at all. I’m not a religious man either, but I think that someone was looking down on us and saying, you need to learn to be more patient.  Lawrence has been that tonic that has made us change and be like that.

He has changed by the fact that we just put him first in everything we do.  We realise that he’s going to lead us through our whole life.  I know we don’t hand our children over at 18, but they become adults, and I hope he can be as independent as he is, but we’re both set up that he’s got full ongoing support till the end.  That’s the worry that I think enters many a parent’s mind, with any child with a special need is, what happens when I’m gone?  And you do; I think about that every day, every single day.  And, yes, that’s kind of sobering, and it’s very hard with that mindset to not wallow in it but you haven’t got time to be depressed.  You have got to just keep going for the child. 

Friends

Our dream is that Lawrence is happy and that he lives as independently as he can. I hope he has lots of friends.  He doesn’t need a lot, just some that he can rely on or communicate with. He even says to me now, ‘why do we have to live here?  I want to live closer to my friends’. 

Lawrence thinks he has friends at school.  That’s the difference, he probably did have but he struggles socially.  The kids in his class are very good, caring and mothering towards him, but I see him waiting outside the class for the teacher to arrive. He’s always on his own just sitting there in his own thoughts, and everyone else is doing what children do: playing catch, playing tag, messing around, talking to each other, telling each other what they watched on telly last night. Lawrence is always on the fringes.  I can see he’s watching and he’s wanting to join in, but he doesn’t quite get how.

The teacher says he has absolutely no fear of standing up in front of the class and telling them how it is or how it should be, so there’s not a shyness there or a fear.  She said that they were doing a science experiment, something like mouldy bread in a bag experiment, and she said to the class, ‘what do you think will happen, or how did you feel after the results?  Were the results what you were expecting?’, and Lawrence apparently stood up and said to her, ‘yes’.  She says, ‘yes, Lawrence?’  He replied, ‘I thought we were going to at least clone a new creature or make a new human being.  This is science, isn’t it?  This is just boring stuff!’.  He has an interest in science.  I think he’s a cross between having a bat-cave and having a laboratory.  He loves dressing up, in Year One we had to get him for Christmas, a lab coat, goggles and all this stuff.

He does have a friend that comes over to play that lives, a five-minute walk away.  I’m 90% convinced that this little boy is on the spectrum too, but has different needs to Lawrence.  I don’t know if this boy would be more Asperger’s, he definitely, absolutely excels academically, but he’s got all the social awkwardness and he stims. His parents are quite dismissive and they haven’t sought a diagnosis.  The mother feels that her son is just a bit odd as she is but after my oldest babysat this child she said that he’s just like Lawrence.  I asked Lawrence why he was such good friends with Aidan, and he said that ‘he’s just like me’.

Awareness of his diagnosis

Lawrence is aware of his diagnosis.  I’ve explained it to him, but he generally doesn’t want to talk about it. It’s very hard to explain what you’ve got, and I kept it as positive as I could, because you do not want to destroy how a child feels about himself, especially at a young age. I was trying to explain it: you’re actually special, you’re better; you see things that I never see; you’ve got these powers.  You put everything in a positive light but understand that people don’t understand you. I’m sort of referring to Theory of Mind, and not to presume that people know and understand if they haven’t seen it.  Don’t get angry when they haven’t seen it or they don’t understand what you’re trying to say.

Because I think his frustrations are what destroy social relationships, more than anything else, because he has no patience.  If you don’t get it the first time, he says it’s ‘ah, ah, ah!’  It’s like, how would I know?  I’ve never seen this cartoon; I don’t know that character, you know, it’s not my fault.  I’ve not seen it before and you’ve got to explain it.  This probably happens three times a week.

Therapies and interventions

I worked with a lady who had autistic twin boys who are now in their 20s, one was severe. Her boys are now in their 20s, one works for the NT Government, and the other boy has never progressed from a toddler. She told me that back when her boys were needing a diagnosis, there was nothing up here at all.  The Variety Club paid for her, her husband and the boys to go down to Melbourne, to the Royal Children’s Hospital where she met Dr Rick Jarman. He stayed in their lives all the way through their journey including over the phone.  She walked into his office and he spent some time with them and he outlined what he could do for one of the children. He continued to say that unfortunately, she cries when she tells me, he says in relation to the other son ‘I’m sorry this son will be like a baby forever’. 

We had a school, we had a diagnosis, we had speech therapy, we had Occupational Therapy (OT), but we didn’t actually have any tailor-made plan.  There were no neuropsychologists up here. My work friend recommended that we see Dr Jarman. I found him online and booked an appointment.  I think there was about a six-month waiting list, but his receptionist rang me after four months and said that there was a gap and put us on the next flight to Melbourne. We were there from the Monday to the Friday and he was fantastic.  He dropped everything for us; he pencilled us in every single day. He explained that you need your plan, because how do you know Lawrence needs that amount of speech therapy or that amount of OT etc. 

They did some brain mapping and neuropsych tests. A lady came in and spent probably the longest four hours of Lawrence’s life with him.  When we left, Dr Jarman had written us basically, a guide tailor-made for Lawrence for us to take this back to the school.  What annoyed me – yes, the NT is limited, but the first piece of the puzzle we were actually doing last.  If we’d done that first, we would have been able to concentrate on all the areas that were needed the most, but no one said that, and they don’t advertise that up here because they haven’t got it to offer.  It was only me seeking it out. I want the best, many other people might just accept what they’re told, and other people might not have the time to do that; they might not be financially able to do that.  This was certainly not covered on a grant, it cost $5,000 just to get what I needed, in the first place.  But that’s what you do.

It was worth it because now he’s thriving in ways that he definitely wouldn’t have been.  I just wish that people were steered in the areas that they should be, rather than just steered to what we’ve got, because what we’ve got isn’t necessarily the best things that people need.  It’s not always that one size fits all, the spectrum’s huge.  Like I said, Lawrence has got his little friend, who I think is so similar, but, God, they’re different in so many other ways.  None of them are the same.  They share a common kind of area, but it’s certainly not one-size-fits-all.

Current levels of functioning

Lawrence’s current level of functioning now is that he’s behind, but he’s happy.  The meltdowns, instead of being three a day, are now probably two a week, and that’s marvellous that it’s kind of like he’s growing into accepting or being able to regulate.  That’s the biggest thing.  It taught us not to hit the panic button; TalkAbility taught us all the tactics that you can do and the way you should word things: how to best communicate with your child.  Don’t just bark instructions from the kitchen when you’re not looking at them.  You go up and say, ‘right, now we’re going to…’.  We have got visual aids and timers, so we can say, ‘next time we come in, in 15 minutes’ time, it’s time for a shower or bed’.  If you just walk in and go, okay, bed – whoa!  End of the world!  But it’s all pre-empting; it’s all about pre-empting and keeping a calm and happy house.

We set up structures.  We were always heavily suggested to do lots of social stories, but it didn’t seem to have as much success for us.  Actually, physically doing it alongside him was the best way: pointing to pictures in books and being very hands-on.

He absolutely adores movement, and it doesn’t matter if he’s floating on a raft on a lake or being pushed in a swing, he gets such joy.   He gets the most out of life, just through sometimes the simplest things. I’ve never, ever heard this child, and I have three others, I’ve never heard this child say he’s bored, because he’s always got something going on.  He doesn’t stop. He’s like a zombie in the morning, but within five minutes he’s running at 80 kilometres an hour, up and down, up and down, and he will still be going at ten o’clock at night.

He doesn’t sit to eat his dinners.  There’s no point, he’s happier walking around the room, and he’ll pass his plate and stick his fork in something and put it in his mouth and carry on walking around the room.  We’ve instilled something called restaurant manners, when we go to other people’s houses so he doesn’t do it then, but we try to meet him halfway.  We’re not trying to make him be a little robot because he’s already recognising that he’s struggling so much, just to cope with everything that’s going on, so his tolerance is already half-spent.

Things I like about Lawrence

My happiest memory of Lawrence is we took him to LEGOLAND in Windsor.  I don’t think I’ve ever seen a child as happy, you could not wipe that smile off his face from the moment he realised where we were going.

What I Iike the most about Lawrence, is his happiness.  He’s just always happy.  He has the bad moments, but he will resume his happiness.  He gets so much joy out of simple things in life.  I never heard a kid laugh so much in a day.  And you’d think the way he carries on he’s just heard the funniest thing ever in his life, but this happens every day.  He squeals, you would think he’s going to have a seizure sometimes the way he’s holding his chest because he’s laughing so much.

He’s brought untold joy into our lives.  And I’m not saying I’d want another one, because I think one is so much. I’m not saying he takes up so much of our time, but you want to give your all, and it would be so much harder to give your all if you had more than one.

I had some friends years ago who had an autistic daughter before I knew what autism really was, other than Rain Man. They originally were going to be a three-children family, but they had Lara, who was autistic. The husband had a vasectomy, because they decided that she was just going to take up everything. It’s varied and every family’s different, and how they’ll cope and what they’ll do, but you adjust to make it fit.  We all just want to have a happy home life and a happy family, don’t we?  And you don’t want to make it difficult for the people you love, especially your children.

Top tips for families that are newly diagnosed or looking into a diagnosis

My biggest tip would be to seek out an individual plan for your child, because up here it’s very kind of tick the boxes: yes, there’s some speech; yes, there’s an OT; yes, we can look at the diet, but I think that you need to get that initial plan to find out where their strengths and weaknesses are, what areas need more attention than others.  That is the big, big number one.

Number two, if the kid is very sensory, make as good an environment for them at home, at school, even at their grandparents, as much as possible.  If it means turning the TV down to a lower level, if it means buying decent curtains to keep the light out, do everything in your power to make the environment as conducive for the child’s wellbeing as possible, because they’re battling against it.  I don’t think it works to train them into liking bright lights, because, they don’t want the brightness.  It’s like waving a spider in front of somebody’s face who’s terrified of them and expecting them to get over it now they have faced their fears.  It’s not the same.

The third thing is don’t be on your own.  Don’t forget yourself, because if you’re not functioning properly, then that’s going to have a knock-on effect on the child.  If you’re not getting your sleep, if you’re not eating properly, if work’s really heavy, you might need to adjust and get a less stressful job, because if you’re burnt out, you’re not going to be able to help.  Seek the support of groups like Autism NT, or other parents in the know.

I met parents at TalkAbility.  I’ve even had one ring me up a couple of days ago, having a tough time, and just needing a sounding-board.  Just listen to them and, rather than being too clichéd and ‘it’ll be all right in the end’, you can, try and help.  I think things will get easier for future generations, because I think it’s not just the fact that the percentage of people on the spectrum seems to be increasing, but more and more people are hearing about it, or it’s getting to the stage now where everybody knows someone who’s dealing with someone on the spectrum or has a friend of a friend, or a cousin etc. 

The thing is, humans are very selfish; society’s selfish.  There are the do-gooders and there’s the helpful people, but the majority of society, unfortunately, don’t read or don’t want to know about something until it affects them.  I’ll say that even about myself.  Before autism came up, I had a friend with a daughter that was autistic. I knew this girl had meltdowns, I knew she’d just pull down her pants in the middle of the shops, I knew all this. But I didn’t actually know anything about the condition until it actually came to my doorstep. You don’t worry about it until it happens to you.  We’ve only got one brain that can only soak up so much.  I can’t suddenly start being an expert on Down’s Syndrome people or autistic people or epileptic people, we’re not all trained doctors and nurses.

Patience is the biggest thing.  There’s no pride in denying your feelings and there’s no pride in any parent trying to be tough and saying, ‘my kid will be right’. Get them the help that they need.  Get them the assistance and you’ll have a much better relationship with them, because at the end of the day, that’s all we want, isn’t it?  We want to get on with our children and our families as best as we can.

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