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Jacquie’s story

I have one son, Jacob, aged 8, on the spectrum and he has a neurotypical brother, who is 22 months older, named Joe. We also have a few extended family members that have a diagnosis in addition to an eight-year-old nephew that would likely to be diagnosed as high functioning ASD. My husband Shaun, had a cousin who wasn’t diagnosed until he was about 20.

Another cousin’s child, also named also Jacob, has been diagnosed with ASD. He was born on the same day as my Jacob but six years prior. I began to think that naming our son Jacob was the reason why he had Autism.  In all of the books that I had read shortly after his diagnosis, it felt like every child with that was diagnosed, was called Jacob.

About Jacob

I have never thought of Jacob without autism. I’d describe him as being an not overly curious child, but if he does become interested in something he can get very focussed on it. He’s brave and will try anything once.  If he likes the activity he will do it 1,000 times but if he doesn’t enjoy it, he’ll never do it again.  He’s quite loving with the people that he has a vested interest in, but he can be very distant to everyone else. I guess we’re fortunate that he displays that loving side because I know a lot of people don’t get that from their ASD child. He seems quite intelligent as he’s forever surprising us.

Jacob is currently interested in dinosaurs, dragons, swimming and boxing.  Boxing’s new but the other interests have been consistent. Initially he would describe a dragon as some sort of dinosaur, but now he knows that they’re two different things. If he sees for example, an excavator at roadworks, he’ll describe the machine by using a dinosaur’s type or shape as a frame of reference for it.

A typical day

Our day starts early, somewhere between 4am and 5.30am. Jacob will wake up and then he’ll wake me, but over the years it’s gotten better. We had no sleep for seven years. It’s only been since last February that he started sleeping through, and I think that was because we introduced medication to assist.  He’s on Melatonin and Risperidone, but we’re phasing Risperidone out because of his metabolic syndrome. The Risperidone has had a negative effect on his diet. He’s very structured with his routine and he eats at the same time every day. If he eats early he’ll still want the same food again later. He only eats a couple of types of food and none of them are healthy. He’s a very large kid. 

Risperidone is an antipsychotic type drug and he takes it to assist him with behaviour regulation. Jacob can be quite violent when he’s frustrated, uncomfortable, or feels like people aren’t understanding him. He won’t just give up and walk away, instead he will start breaking things or hitting the person that’s not understanding him.  For an 8 year old, he is very strong, and he’s taller than the average 10-year old. He’s in men’s size 9 shoes, men’s clothing and weighs 70 kilos. Due to his size, we really have to get on top of behavioural management. We are phasing him off his medications to try and manage it without them because it’s likely to need a lifelong approach.

Behaviour management

Jacob’s school is very supportive of us.  They have a welfare team who assist us with behavioural strategies. I find that a team approach gives us a broader range of ideas and tactics to try.  Unfortunately, due to issues such as him lashing out at other children, he is back to needing one on one care in the school yard. We had made some progress with that previously but have now needed to reintroduce this intervention. We are aware that the school does not receive funding to provide this and that they have had to find their own resources to deliver it. We have to find a long-term solution to his problem because it’s impacting him socially now. The consequence of this ongoing behaviour for Jacob is that he becomes restricted in the activities that he can join, the impact for the family is that if he can’t participate, we can’t. It can be very isolating.

His behaviour can be violent, and no one likes violence. If it’s just at home you cope with it, but when it happens in a supermarket it’s not OK.  I don’t make eye contact with many people when it’s happening. It happened recently at the supermarket, it was very violent and I could see people worrying. I didn’t feel like there was judgement towards us, I just saw concern. Jacob had indicated many triggers to me that he needed to be out of there, so I stopped shopping.  As I had maybe six items, I decided to go through the self-serve area. I managed to get him to sit calmly just outside the supermarket to wait for me. Unfortunately, it was school holidays and one of the school staff walked past, which triggered him because he wasn’t expecting to see anybody from school.  When I saw them approaching, I signed at them (using Auslan) to not approach Jacob. Unfortunately, they didn’t read my signals.  They moved towards him and he panicked thinking someone else was stepping in or school was all of a sudden about to happen. He came wailing at me with punches. The staff member panicked and I had to ask them to back away so I get him out of there safely. 

Jacob tried to destroy a few things and unfortunately, he’ll just aim at other people as well. I have had to be very conscious of that.  He has hit an older woman in the face once with a DVD. Jacob and I were having an altercation, she wasn’t paying attention and she walked straight between the two of us. It was like when two dogs fight, you just don’t get between them. Situations like that happen quite often.

Safety

I worry for Joe’s safety, because when Jacob is upset he will try to restrain Jacob until he can calm down. I don’t care if a window gets broken, we built this house knowing what we had to deal with; all of our walls are made of brick and our TVs are cheap. Ultimately, you don’t care about possessions being destroyed but you do worry if someone gets hit on the head. Jacob’s size and strength is a growing concern for us, so we’re aiming to find some strategies to assist with his self-regulation.

I’ve noticed that as Jacob’s language improves, he gets less frustrated.  He will now stop and think to see if he has a word that will rescue the situation. He couldn’t do that a year ago. Recently I didn’t understand him and that escalated very quickly, and I managed to restrain him after about 15 or 20 minutes. While he was doing his calming breathing exercises, I asked him to tell me again what he wanted as I was just scrambling my brain to try and work it out.  In the end I worked it out, and the second we understood what he was trying to communicate, he calmed down. It was like nothing had ever happened.

He can now reflect on his actions. He will recognise that you are upset, and he’ll come out with a statement like ‘I’m offering an apology’ or, ‘everyone just breathe, everyone be calm. I’m not stupid’. I don’t know where he gets those phrases from. Some of them are lines from the movies and I think ‘everyone be calm’ is something from school because he sings a little ‘just breathe’ song.

Lately he’s been randomly stating, ‘I’m not stupid’, and there’s a sentence after it that I can’t understand. It worries me because I don’t know why he has that thought pattern. I can’t identify where it’s coming from and it only comes out when we are in a quiet moment, like driving (we never take electronic devices with us when we leave the house).  I don’t know if during those times, whether he’s reflecting on something or that he feels that he is stupid. We don’t even use the word ‘stupid’ in our house and since Joe was five he’s been told that you never call someone stupid or an idiot.

Siblings

On, the whole, Joe is very capable and manages really well with Jacob although we do over compensate. Joe has a lot of anxiety, he’ll walk around and lock every door and window at night. Jacob was one of those escape artist kids. Sometimes we couldn’t find him and he would have been sitting on the roof for an hour or he’d be walking the streets and he was always naked. If Joe’s at home reading or on the computer and he hasn’t heard or seen Jacob for 20 minutes, he’ll hop up and start looking for him.  He’s always conscious of it especially in public. Sometimes he doesn’t trust Shaun and I to look after him well enough. Joe has had some highly anxious moments when Jacob was younger.

Joe has been able to maintain his own peer group friendships.  He is very socially capable and has some good friends.  He’s quite comfortable bringing friends back to the house. They all involve Jacob but they know that Jacob’s only ever going to be involved for three to five minutes at a time and then he will go away but they don’t exclude him from their activities.

Getting a diagnosis

Shaun and I hadn’t noticed any developmental delay with Jacob as a baby.  We moved to a small community at Yulara when Jacob was three months old. I didn’t really know anyone there but we soon made some good friends (who were friends of friends). We arrived on the 23rd December and by the 25th we were at their house for Christmas, it was like we’d known them for 20 years. They approached us when Jacob was just over 2 years old and said, ‘we’re concerned that he might not be developing typically, have you considered there might be something wrong’, which was very brave of them to raise with us.

I thought that I had a child who was really easy. He ate all the food I cooked, everything was homemade, not processed. If I gave him a book he’d sit there for an hour and read it. If I gave him a movie he’d watch it.  I can’t remember if he crawled or not.  We lived in a compound style house with a really high fence which had a lot of grass. Our house was at the police station in the town, everyone walked everywhere and everyone just came to us. I never had to take Jacob anywhere and therefore I never had to push his boundaries.

Our friends said that they noticed when we went to the recreation centre if you said, ‘no, you can’t go on the stage’, the second you turn around he’d be trying to get on the stage again and you’d have to do that 1,000 times. You couldn’t distract him from what he wanted to do. If he was reading a book or watching a movie you could drop ten saucepans behind him and he wouldn’t flinch but if you opened a packet of chips he’d hear it a mile away. So, I always knew he wasn’t deaf, but people questioned his hearing and things like that.

When they approached me about their concerns, I don’t remember feeling much. I just remember thinking, ‘oh, maybe I can go to Alice Springs and see a paediatrician and do some shopping’.  I never for a second, thought I’d get diagnosis of anything. I flew to Alice Springs, went to the community health centre and saw a paediatrician.  The paediatrician was amazing She just happened to have come from Tony Attwood’s team in Queensland, it was incredible luck. Within half an hour, she’d diagnosed Jacob as having low functioning autism.  I had lost it by the time that I reached the carpark. I never would have gone to an appointment like that without my partner, if I’d known that was going to happen.

Because we lived at Yulara, there were no on-site therapists, only the visiting teams from Alice Springs that would come to see you every six months, but they didn’t do much. Even then, we didn’t really qualify for assistance because we weren’t Indigenous. I had to give an address from another police officer’s house in Alice Springs to get access to community health and even then, it was 13 months before they contacted us for an appointment. Jacob was diagnosed at two and a half and he was nearly four by the time they contacted me, they hadn’t even started to do anything to assist us.

We instigated our own plan from day dot of the diagnosis, realising the importance of early intervention, and started to see a speech therapist and an occupational therapist in Brisbane. We travelled to Brisbane every six weeks. It cost us up to $2,500 in airfares each trip, as mostly we all went to the sessions as our approach required the whole family to have awareness of how to 'teach' and 'guide' Jacob through skills and interactions. We were lucky that we had family that we could stay with, and that we had private health cover. We had $20,000 in the bank with the hope to save another $40,000 to build our dream home. We were in Yulara for another year and a half and eventually, we had no money left. We physically couldn’t afford to stay there anymore and get Jacob assistance. We couldn’t move straight to Darwin as we didn’t have jobs there so we had to move to Alice Springs first. We stayed in Alice Springs for 6 months and then we came up to Darwin as soon as we could.

We don’t travel interstate for support now, we have been connected with a local occupational therapist’s team and she is great.  The team also work closely with the speech therapist which was helpful because they would often consult with each other. When we did get in to see the Child Development Team, we were referred to a local disability service provider who we saw until he turned six, they were not very good. Now, I liaise quite closely with the school teams and student services. We need to up the ante with his therapies, but we can’t afford to. We would like to start with Applied Behaviour Analysis (ABA) therapy. That’s only recently been recognised here in Darwin as far as local therapists are concerned, and we certainly couldn’t afford to pay for the 20 hours or 40 hours which is what is required.

I think the most beneficial therapy for us was Floor Time. In Alice Springs, we engaged a speech therapist from the hospital, who also consulted privately, to come to our home. She worked with us as a family regarding how we communicated with Jacob. I think that it was big step forward and I was surprised at how receptive my family was to it. We would run pretend classroom sessions and she gave us ways to communicate with him using pictures or drawings.  I think as a family that was the most beneficial aspect. She could look at us as and say: your house is too cluttered, you’ve got too many toys, you’ve got too many things on display and you need to remove some things from your life. ‘Just dull it down a bit’, which was fine. She told us ‘you talk too much’, like when you say, ‘good morning, Jacob, how are you, let’s get this day on the go’, don’t say any of that just say, ‘good morning’.  She taught us to just start communicating the purpose of what we needed not all the added words that a lot of us like to use.

School

Jacob goes to a special needs primary school and is in an autism specific class*. Last year he enjoyed school as he had a really good teacher. She was the school’s first autism specific teacher (*that I am aware of) and we saw a lot of growth and development in Jacob. This year he’s got a new teacher straight out of training. Though he’s familiar with her (she also worked in a holiday vacation care programme), I think that he really needs that autism specific guidance and a lot more consistency. 

Jacob can count numbers. He can’t identify ten but he can count to 20 or so, but to read 10 he would call that one-ten. He can read numbers and letters on car number plates and sort of write his name. We never thought he’d be able to do any of that. He can name every dinosaur that’s ever lived.

He’s really situationally aware.  If he is driven somewhere once, he will know how to get there the next time. So, we’re practicing that now when we drive. If I’m going somewhere he wants to go I’ll say, ‘do I go left, or straight, or right’, and he will tell me which way.

I don’t know what level that puts him at on the mainstream scale of education. He’s developing all of the time. Autism is a developmental disorder, it’s not a stalemate. It’s just that you don’t know how far or how fast or in what areas it will be in. It’s just all unknowns.

Friendships

Last year Jacob had a friend, the school commented on it but I don’t think that child’s there anymore. If he sees children he knows, outside of school, they’ll often call his name and he’ll just smile. So, he recognises them, and I’ll say, ‘who’s that?’ and he’ll tell me their names. However, he makes no move to go and play with them. When we lived in Palmerston we had neighbours who had young kids that used to like to play chasey with Jacob on the street, they were a fair bit younger, and if he saw them at a supermarket he would get so excited and just start wanting to play with them.

He’s not used to having friends over to our house, so it’s a bit out of context for him. Joe’s got a friend, who will come over and Jacob will announce when he walks in the door that he is his best friend. He will hug him and say things like ‘so glad you could make it, welcome’, and other random things that are obviously from a movie.  He’ll comment two or three times throughout the day that this boy is his friend (or his best friend). Joe’s friends are cool with that. They’re great. They’ll shake his hand or give him a man hug but they’re a little bit embarrassed because they aren’t used to being so effusive about something or saying what they think or feel. But they’re not really his best friends or anything.

How life has changed          

For us, life changed gradually. I guess materialistically we’re financially worse off than we thought we’d be right now. We had children later in life so we felt that we were quite established but now we’re back to having to be more conscious of our spending. We need to plan to make sure that we have Jacob and Joe set up for the future. We anticipate that Joe will look out for Jacob when we are unable to.

Future plans

We built this house with a granny flat attached in the hope that Jacob can learn to live independently, whether he does that short-term or forever. It’s got internal access but also has its own external access and is fully self-contained. Our plan for the next 20 years is to be financially set up, for when we die to provide for the children’s needs. Our aspiration is for Joe to have a fulfilled life and for him to be able to follow his chosen career whilst simultaneously providing support and advice to Jacob when needed.

Our wish for Jacob is that he’s got friends and that he’s part of the community as we are, and that’s a big thing for us. We work hard to model for our kids to be productive community minded people and that we as a couple maintain a healthy relationship. We use all his school vouchers for the rugby club. He went for the first and the second year but now I can’t even get him out of the car when we are there. I’m not sure why that is, we will try to ease him back into it. It is our intent that our community is aware of him and what he’s capable of. So if a community member sees him out in public or if he’s having a hard day at the supermarket, they can step in and assist him.  The rugby club has a pretty big network.

What I might have done differently looking back

Looking back, I guess I might have risked more for his therapy.  I might have sold everything to do it. I think America is further ahead in regards to assisting people with Autism. We’d contemplated at one stage that myself and Jacob would live in the States in the hope that we could get some cutting edge therapy.  We really value family and the strength that you get from their network; we just weren’t prepared to separate the family even though we knew it was potentially the best thing for Jacob. We couldn’t bring ourselves to put our family unit at risk.  We also had to consider that we had another child.

Perhaps, we just didn’t have the courage but there’s always going to be that thought about what our life might have been like if we had followed through with it. I don’t regret our decision, it’s just something that has been at the back of my mind.  I am committed wholeheartedly to the amount of time and effort that we put into Jacob’s development and I’m blessed that as a family we do it together. If I say to Shaun and Joe ‘from now on whenever you have this interaction with Jacob I need you to say this, this and this’, they do it. We all want it to work so we are all are committed to whatever approach we decide as a family (often me), whether it’s cutting out gluten and diary or whatever.

I’m not entirely happy with our paediatrician type care approach because by living in Darwin you don’t get that consistency with paediatricians.  I find they work, two days a week or whatever and you can’t see them when you want to see them. You have to wait three months for an appointment, even if you’re private, you still can’t get in to see them. So that brings me much angst. Often, I’ll leave those appointments to Shaun and primarily we use those appointments to make sure what we’re doing with Jacob isn’t detrimental.  For example, he’s weight is scary and the rate in which it’s increasing is scary and I’m pretty sure it’s not good for his health. I’m working with the paediatrician to look at weaning him off his medication. I want to trial medical cannabis to assist his regulation, but because she’s not convinced there’re enough studies to justify it, my whole desire to try it is kyboshed. I find it limiting and frustrating.

Resources that are needed in the Northern Territory

I would like for Autism NT to obtain a larger venue that enable allow families to come and visit together in an environment where everybody feels safe.  In this setting, the kids could get familiar with it, like they are in their own home.  This would allow parents to have timeout and know that their child was: sitting in one of the venue rooms, in a quiet room, or sitting with other kids talking about like-minded activities and feeling like they’re meeting with friends. This is important for families such as mine, as Jacob is never going to able to participate in regular social gatherings because he’s just not that way inclined. It’s probably more for my and our family’s mental health that we’re part of something like it, and that we also have an opportunity to share our knowledge and understanding with other families. I think if I could wave a magic wand I would wish for that property and that they have therapists on site. 

I think the ideal for any family in our situation would be to receive 20 to 40 hours of care a week, particularly a therapy such as Applied Behaviour Analysis (ABA). My biggest desire would be to have someone coming in to our home and teaching Jacob life skills like how to dress himself or to go to the toilet, that would be so life changing.  Jacob doesn’t wear a nappy but he needs it to do a poo, he won’t remove it himself so you have to help him and do all of the cleaning which is unfortunate.  I think that he can physically dress himself but if I’m around he won’t do it, and he will get angry if I don’t assist, but I’m finding ways to change that. Like I’ll get naked as well and then we have a race to get dressed but then will I need to get naked every time he’s getting dressed which is good for now, but it’s not going to last the next ten years I can tell you. I think it’s mainly because, as mums we do everything and in turn we create a rod for our own backs.

Self-care

In regards to self-care, I’m lucky that I have a long-term network in the Territory, however, a lot of my friends don’t have children at all. They’ll ask quietly about Jacob and the family, and 9 times out of 10 it’s just a cursory, ‘yes, everything’s good’ and we keep going. But if I have to unload, they don’t mind listening. I attended a locally run self-help program, it’s quite expensive but it was very valuable.  It’s all about transforming and reshaping your own life in a holistic sense. It gives you the tools and strategies to change the meaning you assign to things.  When my child got diagnosed, I carried a bit of guilt. I don’t think that I did anything wrong, but when you go through the diagnostic process, all of the health care providers ask if it was a normal pregnancy. Did you drink? Did you smoke? Did you bond when he was born? Did you breastfeed? You continuously get asked all of these questions, and then you just start thinking what did I do wrong?

At the course they hypnotised me and removed the word guilt from my self-talk, it was amazing and it turned my life around. It made me own up to everything I’ve ever done which is fine. I know that I have never smoked and I’ve always drunk (but never when pregnant), I might have eaten some soft cheeses on the odd occasion. I’m sure someone has written a book and they’re going to find things that I did wrong somewhere, but I feel I didn’t do anything different to my other pregnancy.  But, I lost it that guilt and it allowed me to let go, move forward and I stopped second guessing myself.

I felt an overwhelming sense of responsibility when I became a mother of a child with autism because I knew that he had a developmental disorder and that I was now responsible for his development.  Why I didn’t feel that sense of responsibility with my neuro-typical child, I couldn’t explain. I can tell you though that I expect a lot from Jacob’s teachers, but I expect a lot more from Joe’s because he’s neuro-typical and they’re trained to manage that. I feel like they’re getting the easy task. I’ll support them with Joe’s educational development, but I think I do leave a lot of the responsibility for it to the school system. Joe attends a private college, we pay for his education in the hope that he’ll be better off and that it will set him up in life. It’s probably misguided, but we overcompensate for him because of Jacob, we recognise that.

What I like the most about Jacob

Jacob is big and he is very loving. I like how he has got so much knowledge inside him that we don’t know about, sometimes it just surfaces randomly and takes us by surprise. For example, he will just come out with the funniest statements and we might not have realised that he had the capacity to formulate those words let alone to use them in context

I have developed an appreciation of the mundane.  I can stand at the clothes line and shed tears some days when it’s calm and peaceful, particularly in the dry season when the evenings and early mornings are tranquil. There are also times when we’ve been to someone’s house for dinner and we’ve been there for two hours, without an incident (we’ve probably only done that 3-4 times in our life).  Shaun and I just look across the room at each other and smile. Or, I’ll be standing at the sink on a Sunday morning cooking breakfast, Shaun will be reading the paper and the boys will be playing together outside with the dog. I’ll start crying, and Shaun will ask why, I reply to him that ‘I think this is what a normal family feels like’.

I really appreciate those moments.

Top Tips

My first tip would be to remember that’s he is still your child, nobody can take that away from you. He is the child that brought you joy and made you cry just as your other children did. It’s really hard to remember that when somebody gives them a diagnosis.

Your child is developing all of the time. Right now, he may not have slept for seven years or have ever spoken; you might not have heard him say the words ‘mum’ or ‘I love you’ but it can happen. He might not express it verbally but it could be communicated via sign language or pictorials. There are different ways that it could happen, and when it does you’ll remember that moment forever. Even during the bad moments, they can continue to develop. Jacob doesn’t tell us verbally but he can demonstrate to us that when he’s lost control, he’s not enjoying how he is feeling and that he can’t stop it. As much as you’re not loving those moments, they hate it even more.

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