‘Caitlyn’s’ stories

Nicholas’s story 

I began my motherhood journey at a young age. I had not long finished high school, and was just 18 when I had my first son. I was no longer with my son’s father and was parenting alone.  Since it was my first child, I really had no idea what to expect. He was a very fussy baby who struggled with learning to feed and would scream for hours. In the early days I remember thinking I might die from sleep deprivation. By 5 weeks he started to smile and things started to seem a little brighter.  

Around 12 weeks I noticed he would copy sounds – pitch perfect. He would match the hum of the vacuum cleaner, the sound of the blender and of course music. I thought it was incredible and because I am musical too, so I was thrilled.  

By about 6 months  I had already noticed how clever he was, he would cough to get my attention and I would come running  straight over to him and he would smile away, I thought that was unusual and cheeky but didn’t think anything more of it.  

By 2-3 years old, people started to comment on how clever he was, he spoke really well for his age and would memorise books and could recite them word for word. And while there were so many ways in which he seemed to be developing at the expected rate or  even above average, I also started to notice more of the times where he was struggling.  

He would have big emotions and meltdown over reasonably minor things. I remember he would bang his head on the tiles, glass door or walls. It wasn’t a little tap, it was with all of his strength and really hard.  I was really concerned and asked a GP about it, he assured me he would be fine and would grow out of it, it was just normal toddler behaviour. When he had a visit to Kindy they said “at first we thought he broke his arm or something from the way he was screaming but it turned out someone just took the toy he was playing with”. They talked about how he had quite big reactions and feelings but didn’t really elaborate. 

Because I had a nephew on the autism spectrum, I was aware of some of the signs and I started to question whether all the these things that were happening were more than just tantrums and big feelings. I started to ask whether any of his kindy teachers thought there was anything I should be worried about with him. They all said, “every child develops at their own pace and that they didn’t think there was anything to worry about”.  The same thing happened through his first year of school as well and it wasn’t until year 1 where I asked his teacher if it be worth seeing a paediatrician and he said he thought it would be a good idea. I was relieved to hear someone else was seeing the things that I was concerned about. I got him on the waitlist for a paediatrician but due to living in a small country town the waitlist was at least 12 months long.  

During that time, Nicholas was struggling at school especially socially. He would have big meltdowns, cry every day and would sometimes refuse to do the tasks set by the teacher. He hit a child with his hat once and I had a phone call from the principal. Things were getting more challenging and overwhelming for Nicholas. The older het got the more demands there were. We were noticing more and more areas where he was just not able to cope. By the time he was diagnosed he was 8 years old. 

My first and second child got diagnosed with ASD within a few months of each other. The presentation was totally different for my second son compared to my first.  

Isaac’s story 

Isaac was born and I remember feeling terrified of how I would cope since my first son was a difficult sleeper initially, but he was the opposite, he was quiet and reasonably easy to settle if swaddled up nice and tight. I felt so relieved because I was able to cope so much better this time around and assumed this was because he was my second child and I knew what to expect so I was calmer the second time around.  

Isaac seemed to be developing typically initially and at 8 months I remember him saying “mum mum” and “dada” however by 12 months he had regressed and no longer said those words. He would stare up at lights and ceiling fans and just watch them, when you would call his name, he wouldn’t respond at all he was so engrossed in watching them. I noticed he seemed to be  a bit behind the babies in his baby group he was the last to walk and they seemed to be talking more than he was. At his 12 month check up, the nurse noticed that he was a little behind in meeting some of his milestones and was referred to a program at the hospital with a speech therapist, occupation therapist and physiotherapist. They attend this until the age of 2 so they can keep an eye on how he was developing. The first assessment they noted that he was mild - moderately delayed, when they assessed him again by age 2 he was moderately to severely delayed.   

Isaac start displaying more of the common traits seen in autism and presented more like his cousin who had a diagnosis of autism already. He struggled with sensory issues, it was hard to get him to eat, he only liked beige coloured foods crackers, biscuits, apples (peeled) and of course chips and nuggets. Despite not putting food in his mouth, he would put just about anything else in there. He constantly mouthed toys. He would randomly hit us or pull hair. He would line up objects, he had to go around and close doors, he liked pressure so would lean on things, hold heavy toys on him and I often wonder if this is why he relaxed when he was tightly swaddled as a baby.  

We did weekly speech and OT until he was 3 and I asked for him to be assessed for autism. In that year he didn’t seem to make much progress at all. When he had his assessment he was diagnosed with Autism Spectrum Disorder, Global Developmental Delay and a severe language disorder.  

We had an assessment with a psychologist who specialises in autism and she said she didn’t believe he had global developmental delay and the severe language disorder and that it was just the autism. She was correct and these diagnoses have been discredited. 

We ended up moving interstate to Perth due to a number of circumstances. When we got over to Perth I was unable to access the same company for the therapy because they had a huge waitlist. We were able to work with a different company and in that 18 months we saw incredible progress.  

Isaac went from being pretty much non verbal to having many words, he was more engaged with family and peers, and we were able to reduce many of the aggressive behaviours he had initially had.  18 months later we moved back to the town we had left and people couldn’t believe how much he had improved.  

Therapy session were 3 hours long and 3 days a week, but really it just became our way of life because we out these things into practice throughout each day. It was play-based and worked with rewards systems.  While it was exhausting and required so much of my energy and mental capacity, I am so glad we did it and it’s incredible to see just how far along he has come. 

While he still has speech issues and  some difficulty with comprehension, he has come such a long way from where he began. 

The journey of motherhood so far, has been the most challenging but most rewarding thing I’ve ever done. It has pushed me to my limits but given me the opportunity to grow and learn so much. Without the hard experiences, I would not have gained the level of compassion and understanding that I have now.