a change in our steps

A Change In Our StepsStories of Diagnosis

DIAGNOSIS

DREAMS

CHALLENGESBEHAVIOURS

PARENTING

HEALTH

GENES

GOALS

PLANS

DOCTORS

Written by the Victor Harbor My Time Group – A support group for parents of children with

disabilities on the Fleurieu Peninsula

My Time

My Time is a Support Group for people caring for children with a disability, developmental delay or chronic medical condition. It is supported by the Parent Research Centre and Fleurieu Families. My Time is a supportive place for parents to unwind, share experiences, learn about local services and enjoy a much needed break.

The Victor Harbor My Time group share lunch or morning tea, chat, create amazing art and craft and enjoy guest speakers. Over the years they have developed an informal support network that extends far beyond the group that meet every two weeks.

The writing of these stories of diagnosis, of heartache and joy, struggles and strength have taken place over a number of cups of coffee and been a therapeutic process. The aim of sharing these stories in the wider community is to build understanding, tolerance and compassion for families who are caring for and fighting for the very best for their children every day.

The posters used to illustrate this book were also created by the members of the My Time group during a ‘Strong and Powerful Women’ workshop ran by local artist Emiko Artemis.

The project that led to the creation of this book has been supported by the following groups:

Victor Harbor My Time Group members and their families

Fleurieu Families

Fleurieu Families is a service that supports families across coastal districts of the Fleurieu Peninsula. They offer a home visiting program, parent/carer support groups, parenting courses and connect people to services, information and community resources.

This project was auspiced by Riding for the Disabled Victor Harbor

Providing opportunities for people with disabilities to enjoy a safe, therapeutic and recreational sport, using horses.

The graphic design and printing of this book was funded through a grant from the Fleurieu Philanthropy Foundation

Thank you!

Glenys’ Story

My name is Glenys and this is my story of my family’s autism journey.

In June 2006 our beautiful son Mason arrived into the world. He had trouble feeding and low blood sugar levels made him too sleepy to suckle. As he grew we noticed that his milestones for talking, smiling and eye contact were behind but his milestones for physical activities were on par. My mum noticed these too and as he got older she noticed that he would line up his Thomas trains on the window ledge and scream if anyone moved them. He would also have meltdowns if he had to go somewhere and didn’t want to.

I didn’t really think his behaviour was abnormal as I had accepted him for the little person he already was.

At his three year old check-up, our doctor saw Mason having a meltdown about leaving the waiting room toys to go to the doctor’s room. He also noticed Mason’s curiosity about everything in the doctor’s room and his need to touch it all. That’s where the ball started rolling for an autism assessment. By the time Mason was four he had been diagnosed with autism and global developmental delay.

I hear a lot about how other parents of autistic children are sad or disappointed to find out that their child has autism, but I was very relieved to find out Mason’s diagnosis, as it meant I could find out ways to help him be the best he can be. My aim and dreams for each of my children, regardless of their different needs, is to help them be the best they can be.

During those first few years of Mason’s growth and development Mason’s little brother James, arrived in November 2008.

James was very different to Mason. His talking, smiling and eye contact milestones happened early. He is still a chatterbox! His physical milestones were late. He was heavier and less physically confident than Mason.

In James’ kindy year his teachers noticed some odd learning and language quirks. We weren’t sure if they were his own quirks or ones he had copied from Mason. And so another autism assessment ball began to roll. James’ autism assessment was complete in April 2014, his reception year.

We’ve found that early intervention has helped both our boys. They have assistance with school work from their assigned SSOs (School Services Officers). The early intervention also helped at home, with us implementing things like reward charts to encourage good behaviour.

I also help them both at home with extra educational activities that are fun so they don’t feel like they’re learning all the time.

Currently, Mason is in Year 3 and James is in Year 1, both are in mainstream classes. Mason began school in the Special Education Unit at our local school, but began mainstream school the same year James began reception.

They are both doing well and improving in reading and writing, thanks to an application I got on my mobile phone, iPad and PC called Scribblenauts. Using this application at home has helped them both improve in reading, spelling and writing. They still need help with maths but they are getting there.

Amelia’s Story

My name is Amelia. I have a 21 year old daughter, and an 18 year old son, Elijah. When Elijah was formally diagnosed with Asperger’s syndrome at around six, it was a relief! The years before the diagnosis were chaotic, confusing, and emotionally damaging. Elijah’s behaviour was extreme at school. He was treated like the naughtiest boy in the world. I was seen as a horrible mother, a parent that wasn’t disciplining her child. My heart was breaking, and I didn’t know what to do for Elijah.

The school system has been our hardest battle. Everything Elijah does is judged as wilful, bad behaviour. As I’ve travelled this journey, I’ve come to understand that most ‘behaviour’ can be traced back to sensory issues. Elijah is actually a lovely young man at 18. He is unique, he is intelligent. There is no-one like Elijah. He has a fantastic sense of humour, but he still has Asperger’s syndrome, and with that many challenges.

I don’t know what his future holds. If he’ll get married? Or be in paid work? I get frustrated when people limit Elijah, or say to me “It must be so hard, does he have a future?” It makes me sad that people always gravitate to the negative, or don’t think how their comments discourage us.

Our family have suffered greatly over the years. At one stage Elijah ran away every night and every day was a crisis. Elijah has been through several schools, in the end they gave up on him. My daughter was told every day at school how naughty her brother was, and often couldn’t have friends over, as they couldn’t cope. Our adult friends pulled away too. It was very isolating. I am grateful I still have a family together.

My husband didn’t cope well, however he never left us. It feels like we’ve survived the worst of it, but I’m realistic there will be new challenges into adulthood. I am glad I have an ‘Elijah’ he has taught me so much about life. How to love at a deeper level! How to endure! Never give up! Things eventually get better, even if it’s just your outlook on the situation.

Helen’s Story

I have two children who have been diagnosed with autism. My daughter, Mia is 11 years old. After being referred by CAFHS to a GP, to a paediatrician at three and a half years old, she was diagnosed with level 1 autism. She was then referred to a clinical psychologist at Headstart and was diagnosed with Asperger’s syndrome. Mia had delayed speech and social/emotional issues. She was reassessed as level 3 autism about 18 months ago. She has regressed, her behaviour has become worse.

My son Oliver is 10 years old. He was also first diagnosed with moderate autism at three and a half years of age through a GP and Headstart clinical psychological paediatrician. Oliver was diagnosed with ADHD three years ago, level 3 autism about two and a half years ago and PDA (Pathological Demand Avoidance) two years ago. Last year he was also diagnosed with dyslexia and dysgraphia by a psychologist.

Mia is now in the process of a diagnosis of PDA through the Health Education Interface (HEI) team from the Women’s and Children’s Hospital. She is in year 6 at a mainstream primary school. She has had attendance difficulties in the past but since Covid-19 lockdown was lifted, she is back attending school again and that was her decision. She has motivated herself and has a great teacher this year, which helps a lot.

Initially I was relieved at each of my children’s autism diagnoses as I hoped they would be able to receive the support they needed. This was the case in the early years with good outcomes from working with occupational therapists who supported my daughter’s social and emotional, toileting and school needs. They also supported Oliver’s social/emotional, kindy and school needs and helped with some other behaviours (running off/absconding) and anger issues.

Oliver, required more support than Mia with attending kindy and now struggles to attend school at all. I have a lot of worries about my son and school. School has been a complete disaster for him this year. His opportunity for social interaction with other kids is now very limited. I find joy in seeing him interact with friends outside of school, doing normal kid stuff and showing empathy toward his friend. Oliver does not do that with other kids.

At 11 years old, school and friendships rule Mia’s life. She does not go out on weekends. She has suffered from a lot of bullying at school and now on social media too, which is difficult to manage.

I am proud of both my two children. My son and I have been going to “My Time” which is a support group for parents with children with a disability. This group is a good social support and most of my friends are from that group. I have another friend who now lives in the city, she has a kid with autism too.

My motto is “Keep on Swimming” from the movie Finding Nemo, because that’s all you can do.

Emma’s Story

At 32 weeks pregnant I found out my baby had a cardiac condition. We saw a cardiologist and had amniocentesis to find out – the test came back positive that our baby had Down Syndrome. My partner got the phone call, he came home and told me. We were in shock. You start thinking about 20 years’ time, about not having a normal life (no children, no family etc.) Sadness. My partner got angry and took it out on the cardiologist. The diagnosis impacted the whole family.

At 36 weeks I went into labour but they managed to stop it. Five days after Christmas I had a caesarean, it was very stressful.

My son is very loving, he has educated me a lot about life! He has taught me what is important, helped me put life into perspective. His infectious smile lights up the room.

We didn’t want to put a label on him so didn’t tell our older son. So when he was older he started asking questions. My older son has a lot of compassion for his brother.

My family and friends have kept me sane. Therapists have been fantastic to talk to about problems they can understand. Support networks on Facebook have been worse.

The journey so far has had ups and downs, highs and lows. It has brought our family closer. It has taught us to be much more resilient.

His behaviour is more challenging as he is a very determined young man. That determination will get him through life. He has a lot of friendships at childcare, kids are really accepting, supportive and helpful. We have had an immense amount of support from childcare.

Karen’s Story

I have two sons Riley, eight, and Maddox, five, that have been diagnosed with 1Q21 microdeletion syndrome, which is a rare chromosome disorder that I now know I carry too.

My mum’s instinct told me something was wrong when Riley was three as he was severely developmentally delayed for unknown reasons. I took him for a hearing check and vision check and other checks but couldn’t find the reason for it. By the time he was four I was so worried, as it was like his learning and development had stopped. Then the kindy wrote my doctor a letter asking to do some testing as they had concerns for Riley too. So finally my doctor gave in and ordered a micro array test to be done which found the genetic fault.

Then my family testing was done to discover that Maddox has it too and Maddox is more severely affected than Riley. I knew at birth that there may be something wrong with Maddox as he was born with a sixth toe and in the first year of his life he had possible seizures. Seizures are part of the syndrome, but no doctor took my concerns seriously. Maddox also had severe feeding issues and suffered from the same learning and developmental delays as Riley. The child and youth worker that Maddox was seeing was concerned, but didn’t give any referrals. Both boys also suffer from the social and emotional issues of the syndrome that mimic autistic traits.

The trouble I have in Australia is that they don’t understand the diagnosis, I have to get help from the UK, the only country in the world that knows about it. I am now registered with a place in the UK called ‘Unique’ which supports people diagnosed with rare chromosome disorders. There are not many families in Australia with 1Q21 syndrome. They still don’t know much about this rare syndrome and there are studies currently happening to try and find out the mystery. The syndrome has major health issues that go with it, and it’s just a chance as to what health issues are present. We are one of the lucky families that have escaped major health problems. I have always had learning issues from early childhood and was born with my toes crossed over. I had no idea my issues were related to a rare genetic condition. It’s been a long hard journey to get this diagnosis.

Jenny

Water

Water. That was the pivotal moment when things changed. For weeks my father-in-law said that my son’s language was delayed. I was in denial; after all, apparently my husband had started talking in sentences at 14 months old and my father-in-law’s expectations were seriously too high. My son at 18 months old had about 80 words and was pointing to things he wanted. Everything was normal. He was meeting all his developmental milestones. Since he had been born my mother-in-law had been saying he was six weeks ahead of the rest; so alert, watching everything.

I had picked up my son from day-care this particular week and he started acting differently: ignoring me, staring into space, like my grandpa did when he was on his pain relief at the end of his cancer battle. Maybe my baby was punishing me with the silent treatment for abandoning him at day care? They were long days, as I had just returned to work full time.

This day my son wanted a drink. He could say please and thank you. He could say water. Hell, his first word was ‘Jenny’, not ‘Dadada’, which we all laughed about. (Clearly my husband was calling out for me far too often.) As all good parents do, I was making my son use his words when he wanted something. I went to hand him his drink and he went to take it. I said, “What do you say?” Silence. “Water please,” I suggested.

He looked at me in fear. I’ll never forget that look. He was clearly thirsty, and he knew that he used to know the word for what he wanted. Only a week or two before he had been putting two to three words together as sentences. “Me stuck,” still rings in my memory. He looked longingly at the water desperately searching for the lost word, tears welling. In those seconds of fear, I realised there was something wrong. He knew it too. I didn’t know what it was at the time. I had heard of auditory processing disorder, but I had no idea. I booked into a speech pathologist to try to work out what was going on, and to get onto it as quick as I could; to get this hurdle fixed.

I made an uneducated off the cuff comment, “I just thought I’d bring him in, just in case it’s a form of autism or whatever”.

She took me on my word. Started talking about autism and assessments. Internally I started screaming.

“THAT’S NOT WHAT I MEANT!! I didn’t mean to give you the idea he was autistic.”

My child was NOT Rain Man.

I was about to begin a massive lesson.

And Google seemed to have only one answer to Speech Regression….

…AUTISM.

Jenny

Protected Species

A lonely five year old boy swings on his swing; silent in his loneliness. Unable to speak or communicate in the ways we all take for granted. He is his only friend.

Despair wracks the mother watching the scene play out. She knows it well. She knows if it were the documentary of a kitten, the public would protest. If it were a stranded whale on a beach, multitudes would gather to help. But this scene will replay and replay perpetually.

The boy is locked in his own world, inside a bubble: an invisible bubble that surrounds him, keeping the sound and senses at bay. Reality is overwhelming for him and it’s safe in there.

The boy, so often locked away from the world, finds an escape at one of the very few social outings he goes on. He finds one other person who just might understand. Who might just be a friend, this time…

How might it be, only having one soul on the Earth, other than your parents, with whom to communicate? You’ve lived your life with little to no human interaction with your peers. This soul is family and you adore them. You can’t say it, but you show it in every way you can... You absolutely love them.

How does the nonverbal child reach out to that soul? How do you say, “Play with me. I like doing this, do it with me.”

The child manages to reach that soul: connects. The other child understands what he wants, for the moment.

Let’s play, he says in actions.

“I don’t want to” she says in words.

But if you just follow me I can show you it’s fun, he tugs her hand.

“I don’t want to,” speaks the girl, “I’m too busy.”

But it’s fun if you just come, he pulls her by the hand again.

“I don’t want to.”

You’re not listening to me, he thinks.

“You’re not listening to me,” she thinks.

The frustration appears on his face, contorted begging for co-operation. This may be his only chance to play. She begins to wail, sulking, crying – this behaviour usually works out in her favour. She verbalises in obnoxious wailing. He remains silent.

I’m just holding her hand. Trying to take her to the trampoline. Trying to take her to the slippery dip. Trying to roll down a grassed hill. Trying to give her a hug.

“But I don’t like it,” she wails.

You’re the only person I know and trust, you’re everything to me, thinks the boy.

They are duly separated. She shouldn’t have to play with someone she doesn’t want to, and he needs to learn his social manners.

She runs off with the other children to play. He goes to the sandpit to feel the texture of the sand on his tongue.

The girl plays with everybody else for what feels like an eternity to the boy, and she gets on to the trampoline. His favourite thing! All the kids are on the trampoline: all jumping, all having fun. That’s something I can do, thinks the boy. He skips to the trampoline, knowing this’ll be the time he can connect to the other children. You don’t need to speak to jump.

(Continued over)

He climbs aboard, and they all jump. Usually when we jump we hold hands, thinks the boy. He tries to grab the girl’s hand. She resists. But we’re jumping, all of us, and having fun. Together. For the first time today. For the first time in months. For some of these kids it’s for the first time ever. To be playing with me!

Mum and Dad are watching, so proud their little boy has made the effort to break his bubble. So grateful that the other children are letting him join in for once.

The girl has had enough, and gets off the trampoline. She doesn’t want to hold his hand. Fair enough. The boy keeps jumping with the others and lets her go. Finally there is unity and a moment of connection has occurred.

BUT

The girl’s father strides across the grass determined to sort things out. Makes sure his little princess is fine. It didn’t matter that the girl’s little brother had previously been left unsupervised throwing items at the jumping children, including her, while safely at a distance from the odd child. It doesn’t matter she has chosen to leave the group of laughing playing children on the trampoline for her own purposes.

“Are you okay precious?”

“Yes.”

“Right you guys off the trampoline so the lad can jump. I don’t want you getting hurt.”

All the children vacate the trampoline. All, except the boy. Left alone. To jump. Alone. Again. The attempt to interact with the children that had taken so much time to eventuate, to fall into place, to be right, is taken in a moment.

I like jumping, thinks the boy. As the kids all run off, leaving him back in his little bubble of self content.

“He must be dangerous,” they all think as they skip away.

As long as she is safe, as long as that strange little unspoken boy doesn’t squeeze her fingers too hard. He’s dangerous: especially to little princesses who can cry loudly.

So, to avoid crying in front of people who don’t understand, to avoid the confrontation about ostracizing a lonely little disabled boy, the parents cringe. Withdraw. They take the boy home. Not to keep the other children safe, they always were, but to avoid an emotional meltdown of their own. The scene will be replayed again, but not today.

And still... still the parents hear from everybody including the girl’s father, in pitiable tones.... “I couldn’t do what you do... No... I couldn’t be so brave...I don’t know how you cope.”

It’s not brave going home to cry: to watch your lonely little boy jumping on his own trampoline, alone, again. It’s not brave... and anyone could do it.

They just shouldn’t have to.

Sally - Diagnosis

I am a grown woman. I am loud and sometimes quite animated, yet I am invisible. How, you ask, did I come by these amazing powers of invisibility? Well, I am the mother of a special needs child. We are unheard and unseen.

I grew up in a house where we fostered special needs kids of all shapes and sizes. Sometimes they had disabilities on their disabilities. Downs Syndrome with autism. Blind with mental disabilities. You name it, we had it. This gave me an advantage in noticing signs that others perhaps do not. Therefore, when I began to notice things with my own daughter at six months, I knew right away she was autistic. It just took everyone else almost 13 years to agree with me.

When I reached out to professionals for help, I was told that because she walked and talked and (for some reason: more importantly) she slept through the night, Tegan was fine. Even though at kindy they insisted on a hearing test because they thought she was deaf. Tegan would ignore and stare at you if she didn’t like what you were saying. “That’s what two year olds do.” “That’s what three year olds do.” “That’s what four year olds do”…. All the way up to nine years old. Finally a teacher noticed Tegan’s differences. I asked her to write a letter. I showed it to our GP and he said, “Oh, perhaps there is something wrong.” REALLY? You don’t say!??!

We finally had an assessment done and Tegan was found to have ‘autistic traits,’ but not autism. I was confused by this. They also did an IQ test and found she had a mild intellectual impairment. By now, Tegan had been in two schools and after this negative result we encountered more road blocks and no support. I moved her to a private school.

I am relentless. I am strong. I am, more than anything, a pain in the backside. I would not give up! Finally, at almost 13 years of age, Tegan was diagnosed with autism spectrum disorder (ASD) level 2, a mild intellectual impairment and kleptomania.

That was the hard one: kleptomania. I can handle meltdowns, tantrums, black and white thinking. All of it. But klepto: uncontrollable stealing. COME ON! But like everything else we deal with it. Our other daughter, Cara (12 years old) has a lock on her door. We have a safe for money, a bike chain on the fridge and lock boxes for food. All of this is normal in our house.

Things have changed for the better since the diagnosis. We have access to the NDIS, more support at school. It is amazing the change in attitude, family included, when you say “well, actually she has autism.”

Our home life did not change that much after the diagnosis. We have lived with it always, and like I said before, I always knew. I just wish the ‘professionals’ would listen to parents.

Sally - Support

Support networks are incredibly important to all people, but especially those with special needs. Support comes from family, friends, school and professionals. Being bipolar myself and having chronic anxiety and post-traumatic stress disorder, I have needed support over the years. Add onto that a daughter with autism spectrum disorder (ASD) level 2, mild intellectual impairment, kleptomania and dyslexia, I need support. I also have a husband and another 12 year old daughter, a property and a business to run.

I only have one sister who lives in Queensland and my partner’s family help where they can, but it’s complicated. Throughout this journey I am down to about three friends: one who lives across the state, one who is a teacher (we speak when we can), and probably my best friend who used to live two doors down and we would speak every day, until I moved 6km away. It’s amazing the change a small distance makes.

Tegan has been to three schools. The first two were completely unsupportive due to the fact that she was undiagnosed and the principals were not helpful. The third school was totally on board right from the start. They did everything I asked, and when Tegan finally was diagnosed, they just stepped it up even more.

I am happy with the level of support Tegan receives. We have NDIS funding and she sees a speech pathologist and occupational therapist. She has social groups (although far away), does art therapy and has a mentor. People are always looking for ways to help Tegan, and although that is awesome: what about the rest of us?... What about her 12 year old sister who has to have a lock on her door to feel safe and stop Tegan from taking her stuff?... And who is abused verbally and physically every day.

Where is my support? Where is my support when Tegan empties the contents of the freezer onto the floor and then refuses to pick it up? Where is my support when I have to take Tegan to town with me because I have no one to leave her with and she screams for three hours as we are driving through traffic? And how do I explain to my 12 year old daughter that her big sister hates her?

I know that if I were in a relationship where my partner treated me like Tegan does, I would be encouraged to leave and I would be supported financially while I got on my feet. But I am not. I am a mum and it’s my job to look after her.

I also know that if I did to Tegan what she does to her sister and I, that both my kids would be taken away from me and I would be labelled an unfit mother.

There is no win. There is no solution.

I can talk to professionals. I have a great psychiatrist. I can go to support groups. But really it does not change anything knowing that there are other families out there dealing with the same things. Actually it does not make me feel better, it makes me sad that they are alone too.

I do not cry myself to sleep anymore. I avoid people because they might ask, “How was your weekend?” and I just don’t have an answer. I soak in the quiet while the kids are at school, but flinch every time the phones rings, in case it’s school. I’m tired. I feel isolated and lonely, but I love my family. I will always fight for their wellbeing, I will just do it alone.

Olivia’s Story

I was nearly 40. I wouldn’t let them do an amnio. “I’ll deal with it.” I refused the testing.

I knew when he was born. He was grey. They whisked him away, but they told me within hours of the diagnosis – Down Syndrome.

Before I left the hospital they talked to me about possible heart defects and lung problems, then I was sent home with Shane not knowing what to expect, with an appointment with a heart specialist in three weeks. So for three weeks I was left floundering. Three weeks! He was then diagnosed with a minor heart defect that fixed itself. It took me eight years to find out he had bronchomalacia, which means his wind pipe has weakened cartilage and collapses easily, a condition that complicates and prolongs any chest infections.

He didn’t crawl until he was two. He didn’t walk until he was three. He didn’t talk until he went to school – the frustration of not being able to communicate. All the stages took longer.

All those aspirations dissipate. All the dreams you have for your children of having a ‘normal life’ are taken away – shattered. They don’t just smash gently, they shatter.

Teach your kids to communicate.

Joanne

My name is Joanne and I live on the Fleurieu Peninsula with my partner and three children aged five, three and 15. This is part of my story about how autism is now part of our lives and some of our journey so far.

Our five year old son was not an easy baby but having a big gap between our first two children, and being a boy compared to a girl, we did not really ‘compare’ him, and took each day as it was.

Sleep was not our friend even into the toddler years. When Levi was in childcare the staff noticed some differences in his behaviour to all the other children. He was not interacting well with others and what was more concerning was that he was self-harming by picking holes in his face. I look back at his two and a half year old photos and his little face has sores.

As he grew, his sensory issues became obvious, he struggled to eat certain foods, anything with lumps or even remotely solid he would vomit everywhere. He was recommended to see a speech pathologist to learn how to eat. We also started occupational therapy to try to help manage his feelings; he would do big movements as a way to help with his frustrations and motor skills. Toileting has always been difficult; he would vomit because of the smell of his faeces. Now approaching nearly six he still frequently wets some days and most nights.

Psychology started around the age of three and a half. Childcare had also reported he was hurting other children, showing no remorse or emotion and he was struggling to read the emotions of others. He continues to see his psychologist on a fortnightly basis as we keep working on his behavioural issues.

Diagnosis happened at the age of four. I had no idea how intense the assessment was going to be, actually I had no idea about any of it. I went alone as my partner worked away (three weeks away and one week at home), a FIFO worker. I was most definitely under prepared for the assessment. Nothing written down. No expectations. In the end it probably was for the best, as I was not anxious. We walked out with a confirmed diagnosis of autism spectrum disorder with a full report to be sent out in the following weeks.

His diagnosis has changed how we work as a family unit. My teenage daughter cannot have people over, it is too disruptive and we cannot go out for a meal. It has changed how we live our day-to-day lives, which is hard.

Levi grounds me. I get joy out of fine details that he notices, for example he looks at things in nature in such fine detail and with such fascination. I see the world differently through his eyes. He has made me grateful for the little things.

Having a child with autism has made me more accepting and open to think outside the box, it has opened my eyes to accepting people as they are. I do not want to squeeze Levi into a box.

My support networks include My Time group, Goolwa Children’s Centre, Strathalbyn Spectrum Connection, parenting courses like Circle of Security, Headstart, psychology etc.

When Levi was a toddler, his behaviour was more accepted but as he gets older, we feel judged by his behaviour.

When you get a diagnosis of autism for your child, it throws everything you thought you knew about parenting out the window and you have to almost start again. Those “typical” ways do not work for Levi; we have had to find new ways.

One night I wrote down a few words, I was thinking about how I could describe my feelings: Self-loathing… limp… overwhelmed… defeated… cloudy… tired… exhausted… heavy… feeling every breath… stiff jaw… daily tasks feel way too much!

But I have found strength in this situation and in my own coping abilities.

Michaela

I try hard not to dwell on the past, or even rethink yesterday, but sometimes it is necessary to go back to the beginning.

As a child, I always felt….unwanted! Well, perhaps unwelcome is a better word. I always felt like I was living in someone else’s house, not my own home. At the age of 11, I experienced my first trauma of losing someone I loved more than life itself. My family were very unsupportive and I was told to “get over it!” At 13, I lost my maternal grandpa and at age 16 I lost two friends who died in a car accident 100m from my house. This is when things really started to fall apart. Teachers (not my parents) got me into counselling through CAHMS, my doctor put me on medication, which I paid for, and I also started seeing psychiatrists and psychologists (also at my own expense). It was a long gruelling process. I lived through many more losses, including my marriage. I got married at 23, but we were unable to have children, so my husband thought he would go live with another woman and her kids.

It certainly is not all bad though, I met my current partner, we run our own business, and have two beautiful girls. When I got pregnant with my first daughter, it was very exciting, especially since I was unsure if I could ever get pregnant. At 12 weeks we had a scare when a cyst burst on my ovaries and I thought I was losing her, all was well. Her birth really is a whole story in itself, but the short version is…we had a young puppy and 2 weeks before my due date my partner broke his ankle and on her due date, the Tour Down Under was going past our house, closing all roads. So obviously that is the day she decided to come. I had been in labour all day, but luckily did not head to hospital until after the race. My waters did not break until she was on her way out. That is when they realised she had pooped. My baby did not cry as she was struggling for breath. I did not have her placed lovingly on my chest; she was taken away and an oxygen box was placed over her head, while we waited for the special ambulance to take her to Flinders. We did not get to hold our baby for a week and while I sat alone in my hospital room with a milking machine and a Polaroid of my daughter, I felt alone and a failure.

Two and a half years later I was about to have my second child. I had already raised concerns about my first with the doctors but my concerns were dismissed. I was a first time mum, what would I know. The birth of my second daughter was no less traumatic than the first. During labour I expressed the thought that something was wrong with the way she was descending then going back in. I was told it was fine, finally her head came out, the cord was around her neck twice, which is why she kept getting pulled back in, they cut the cord, she was blue, doctors rushed to resuscitate her. Another baby who did not cry, that I did not get to hold for a week.

I just want to note that for both of my girl’s births, everyone involved knew of my history with depression and not one person came to speak with me about how I was feeling. Disappointing!

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