Journeys of Gold: An Uplifting Story Of Two Families Raising Children With Aspergers Syndrome

By Kate Johnson and Jodie Lomer

Journeys of Gold is a positive, uplifting book about raising a child on the Autism Spectrum. Much of the information available on ASD, or in our case, Aspergers Syndrome, is quite overwhelming as it is normally read at a time when you are facing the thought of your child being ‘different’ or going through the draining diagnostic process. Journeys of Gold is two stories in one – we both have very different experiences of Aspergers Syndrome yet have both discovered that there is joy to be found in having a child on the Autism Spectrum. This book is one that can be read by parents, teachers, support workers, chaplains, families, grandparents and child care workers and it gives an insight into what it means to parent a child on the Autism Spectrum, as well as offers strategies that can be used after diagnosis (especially when you are faced with long waiting lists to access some services). It looks at important things like starting kindergarten, family relationships, communication, self care and transitioning to school. Our book is full of hope, practical ideas, shares that joy can be found in the little things and that life is not over once a child receives a diagnosis – it is different.

• Language: English
• Publisher: BookBaby
• Release date: Nov 12, 2012
• ISBN: 9781624882975

Book preview

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CHAPTER ONE

The Journey – Jodie

Although my husband Jay and I now realise that we have lived with Aspergers Syndrome (AS) since our eldest son Ethan was born in October 2002, our journey with AS didn’t begin in earnest until the end of 2009 when Ethan was seven years old. However, as we look back over Ethan’s nine years, knowing what we know now, there were very definite and clear indicators of AS from as early as a few months old, but in many ways it was like reading sign posts in a different language, we just didn’t understand what we were seeing. We knew all of Ethan’s likes and dislikes, the idiosyncrasies, the particular ways of doing things, his quirks and the way he needed life to be ordered so that it would run smoothly, but we just didn’t know that all of those little things would one day make a much bigger picture, like a jigsaw puzzle, that spelt out AS.

As a former Early Childhood Teacher, I had diligently mapped out Ethan’s development across all areas from the day he was born. I had written detailed notes in a scrapbook album about each milestone and was constantly checking with my professional text books to ensure that my boy was developing normally and that I was doing a good job as Mum and teacher. From as early as a few weeks old, it was apparent that Ethan had certain likes and dislikes. We often referred to him as strong willed or called him a cheeky bubby when he appeared to stubbornly hold his ground and not give in. Even from just a few weeks old, he would fight really hard not to sleep when we were out and there were lots of people around. He did not like to be laid down in your arms but preferred to be held upright where he could see the world around him. He appeared to get overstimulated by too many people and was often hard to settle unless we were at home. Ethan liked to play on the floor and didn’t like to be held all the time. Ethan only cried if he had reason to, and friends would often comment I’ve never seen him crying or upset. Ethan did not take well to breast feeding and I found it difficult and very stressful. I introduced the bottle with expressed milk when he was just a few weeks old, and he loved the bottle and appeared much happier being able to see the world around him while he fed. He didn’t like sudden loud noises or movements from a very young age, would jump when they occurred and often became upset.

When you have a baby, everybody seems to have an opinion about what the baby should or should not do and what you as a parent should or should not do. People would say things to me like all newborns do is sleep and eat, but Ethan certainly did not fit that mould. I used to say he came out trying to work out how to take over the world because he was extremely alert and was always watching and taking in everything that went on around him. As he grew, he had certain ways of doing things and liked things to happen or be done a particular way. For my own sanity, ease of relationship and connection with Ethan, it was just easier for me to follow his lead in these things and let him have his own way. And it’s very hard to explain and articulate to other people that this tiny little person needs things to be a certain way or else you as a parent suffer the consequences later on when it’s just you and your child and you have to be the one to calm them down.

Unfortunately, due to insecurity and self–doubt and a lack of maturity, I used to care way too much what other people thought about me as a person and my ability as a mum. Ethan was our first born and the only grandchild on both sides of our family until our second son, Seth, was born in mid 2005. Ethan is also part of a large extended family and has always attended church with us and so he has grown up being part of a large social network (although looking back I realise that most of his connections were with adults and teens or much younger children rather than peers). I used to really feel the weight of the expectations of all the other adults in our family and of friends who had children of a similar age to Ethan. It seemed other people had their own perceptions and expectations about how Ethan should behave, what he should be like, what he should do, how he should fit and the role he should fill, and I very much felt the pressure that Ethan had to be the perfect child. I distinctly remember that I used to say to friends, Sometimes it’s really hard work being Ethan’s mum, because I knew that life and everything in it had to be a certain way for Ethan and yet it was so hard to convey this message to other people. I felt like no one other than Jay could really see this or understand the depth to which this was true. So I just kept quiet and tried to manage Ethan and his routine as best I could, whilst trying to manage and mask my own anxiety. I hoped that this ‘difficult season’ would pass and life would get better.

Despite Ethan’s need for things to be a certain way, he really was a delightful little man. As a baby and toddler, Ethan loved routine and life with him was predictable. I guess in some ways that made life easy; he loved to do the same things every day, eat the same things every day, and play with the same toys every day. He had a favourite stuffed toy, Calvin the Cow, who always went with him wherever he went. He met all his developmental milestones, many of them earlier than expected. Ethan either liked something or didn’t, and when he liked something he was very much an ‘all or nothing’ sort of person. He didn’t really engage in imaginative play but preferred ‘closed–ended’ activities or objects that had a definite purpose. He didn’t really like change or to have things sprung upon him at the last minute, so from about 12 months onwards I always told him what we were going to do each day, and sometimes told him at bedtime, Tomorrow we will be doing…. I would always give him a five minute warning before the next activity and name the change before it occurred. For example, In five minutes it will be time to pack up for lunch or in five minutes we will be going to the shops.

I guess in many ways my experience as a teacher gave me the skills and strategies to cope with Ethan’s needs, his likes and dislikes and to just accept that’s the way things needed to be for him. Ethan was a funny and sometimes quirky little guy and family and friends often called him a little old man or a little professor. From about the age of 2½ to 3 years Ethan often said about himself I’m a lot like an adult aren’t I. He used phrases such as Well, actually…. to correct me when we were in conversation. He had an amazing eye for detail and an equally amazing long term memory. He was still a strong–willed and stubborn little guy and when he got an idea in his head it was set.

Our second son, Seth, arrived into the world when Ethan was 2½ years old. On the whole it was a fairly smooth transition, although compared to Ethan, Seth was a difficult baby who had no routine, was not at all predictable and who appeared to be very emotional. However, Seth was also a very animated little baby, who loved people and disliked being alone, and it was apparent very early on that the boys’ personalities were opposite. As the boys grew and Seth was old enough to be a playmate, Ethan’s inability to make Seth comply with his ideas and ways of doing things caused Ethan obvious frustration and conflict between them. Ethan seemed to be always complaining that Seth was doing something with a toy he shouldn’t (i.e. using it for something other than the purpose for which it was designed), that Seth was in his space and ‘touching me’, or touching his special or favourite toys. You need to share ideas while you play, and Let Seth use his own ideas while he’s playing, and It’s ok for him to do that with that toy, became common phrases in our household, much to Ethan’s frustration and annoyance.

In 2006, at three years old, Ethan began attending 3 year old Kinder. Since this was my ‘area of expertise’, I had carefully chosen a local Kinder that ‘had the right feel’ and a great outdoor area for little boys to play. I had prepared Ethan well for this experience, talking positively all summer about his teachers and how much fun he would have, all the activities he would do and the friends he would make, and so on his first day he walked straight into the room, made himself busy, and I had to ask for a kiss goodbye! He loved blocks and bikes and puzzles, and appeared to really enjoy Kinder, although he wasn’t that keen on craft or messy play. He had a few friends that he regularly played with and despite the fact he was occasionally reluctant to get involved at group time, the teacher didn’t have any problems or concerns with him, his development or his behaviour, and nothing seemed to set him apart from the other children.

Looking back, it is now apparent to me that my teaching training and my ability to put in place strategies to deal with Ethan’s quirks and behaviours probably covered over many of the indicators of AS. I would often say things like Ethan, ________ is talking to you or It’s nice to look at people when they say hello. I guess I have to admit that I was never too far away from Ethan and always ready to step in and ‘fill in the gaps’ in his interactions. Deep down, I was a bit nervous about him going off to Kinder because I wondered if the teacher would understand Ethan the way I did, or if she would cater to his idiosyncrasies the way I did. Would she know he was frightened of thunderstorms and console him or would she just tell him not to worry? Would she know he doesn’t always respond the first time when you speak to him or would she just think he was being rude? When someone asked Ethan a question or said something that he didn’t understand, he would look at me and I would clarify the question for him, or put it into other words so he would understand, and I wondered what would happen when I wasn’t there to do that for him. My nervous undertakings, coupled with my insecurities, meant that I kept my qualifications secret from the Kindergarten staff, fearing that more might be expected of Ethan, or of me, if the staff found out.

In 2007, Ethan graduated to the four year old group at the same Kinder and although he had a different teacher, he had the same assistant teacher as he had in 2006. I thought that was a huge bonus for Ethan to have someone who already knew him. During Ethan’s 3½ year old check up with the Maternal Child Health Nurse, he was very uncooperative when it came time for her to check his sight as she wanted to put a pirate patch on his eye and he was scared of pirates. Needless to say, no eye test was conducted that day! The nurse suggested that when he turned four, we should take him to the Optometrist for an assessment. So in February 2007, he had his eyes tested and he’s worn glasses ever since. In March of 2007, when the teacher sent home her initial summary of Ethan’s developmental profile, we had a chuckle when her goal was For Ethan to continue to follow directions without argument. When I asked the teacher about it she commented that he wasn’t being uncooperative or misbehaving, but that he just seemed to need a good reason to do things and always asked why he had to. She thought that in preparation for school it would be good for him to just follow instructions without questioning or reasoning why he needed to. She also referred Ethan for a hearing test because he wasn’t always responding to her when she would speak to him and she wanted to give him the benefit of the doubt that he was not hearing her properly rather than just ignoring her. His hearing test was normal, although during the assessment he was very easily distracted and his hands were very busy, which affected his concentration. I also had to keep intervening and telling him to listen to the audiologist as he was not responding to her questions. We were given a few strategies such as make sure you have eye contact with him before giving instructions and ask Ethan to repeat an instruction after you have given it to him to make sure he has heard correctly. Ethan had a favourite friend at Kinder and they played together most days, although he was happy to play with anyone who would join in the activity he wanted to do. Ethan loved going to Kinder and appeared happy and healthy and ‘normal’.

The transition to school in 2008 was an easy one. The school we chose had an excellent transition program so by the time the first day of school arrived, Ethan was very excited about going, knew his teacher, knew many of the other children and we were lucky to get a goodbye from him as he marched off into the classroom. Ethan’s favourite friend from Kinder was attending the same school and they were in the same grade, so that also helped to make the transition an easy one. Ethan’s mid–year report indicated that his development was at the expected level. The only concern that his teacher had was that he sometimes required monitoring to remain ‘on task’ to ensure he completed his work to a set deadline. She suggested that he would need to continue to focus on developing settled and independent working habits. After some discussion with his teacher and a few friends, we made the decision to begin giving Ethan fish oil tablets to see if this would help aid his developing concentration levels, in conjunction with reinforcing good work habits, completing tasks on–time and finishing one thing before beginning another. I’m not sure if the tablets really made a difference or not, but he continued taking them until the end of the school year. Ethan’s end of year report again showed that his development was at the level expected, except for physical education where the teacher had questioned his throwing and catching skills. This was a huge surprise to us because Jay had Ethan throwing and catching a ball from the time he was able to hold one and we had always marvelled at his apparent great coordination. Ethan’s class teacher reported that he had begun to develop more settled working habits. He is a polite and caring child and has made many new friends with his peers this year. For all intents and purposes, he seemed like your average six year old boy.

In 2009, Ethan moved up to Grade 1 and was fortunate enough to be in the same class as his favourite friend for the fourth year in a row. They seemed to share many of the same interests and always played really well together. Ethan’s mid–year report again indicated that his development had reached the expected level, except for physical education with the teacher still expressing concerns about his gross motor control and large movements. Ethan’s class teacher was happy with his progress in reading and although his handwriting was a bit messy, she was happy with the way it was developing and he was making an effort to improve. By the time the end of year report came home, Ethan’s development was only just at the expected level, except for his writing, and his effort in class had slipped from very good to acceptable. Although Ethan’s reading ability was within the expected range for his age, it was on the lower end of what was expected and doing his ‘home reader’ had become a source of frustration after school. Some nights it seemed that Ethan could read really well, he was fluent and could recognise familiar words and sound out unfamiliar words, however the next night, it was like reading with a completely different child; he could not read or sound out familiar words and could not tell us what was happening in the story when we asked questions about what he had just read. It was frustrating and it appeared that sometimes he just didn’t even want to try. Ethan’s concentration was beginning to wane in the classroom, he was easily distracted and was again not finishing his work in the allotted time. As the communication lines were open between school and home, we already knew these things before his report came home, and we were implementing suggested strategies with homework and trying to build on Ethan’s organisational and time management skills. We had also begun giving him fish oil tablets again (he has been taking them ever since). I wasn’t sure what all of this meant or was indicating but I figured that Ethan was just tired after a long year at school and after the summer holidays he’d be fine.

However, over the summer holidays I had to admit to myself that there were some aspects of Ethan’s development that just did not sit right or add up. At home and at school he was having trouble staying focused, especially on tasks that he was not that interested in.  He also had some trouble following instructions; he was very easily distracted, especially by things that were more interesting to do than the task he was assigned.  He couldn’t even get fully dressed without being distracted in the process.  Ethan would often have trouble finishing his work at school in the given time