Every day is so different for proud father Gareth Rogerson as his autistic daughter Paige makes him laugh, cry and shake his head in disbelief and frustration. He loves her to bits and is learning how to parent differently.
EACH MORNING, when Paige wakes up, it is like a box of chocolates – you never know how much Autism Spectrum Disorder fog you are going to encounter.
Imagine a pizza that has eight slices. Each of those slices represent who she is, i.e. one piece is fixed mindset, one-piece communication, one-piece anxiety, another concentration etc.
When she wakes you are hoping for the best, that all eight are functioning but some days, only one or two pieces are connected and not fogged in. These days are hard, both for her and the rest of the family.
Paige, 6, is our youngest daughter and an IVF miracle like her older sister Phoebe, 8.
When Paige was born here in Tauranga there were no signs of anything untoward and she developed as a neurotypical child was expected to.
She did get numerous ear infections and suffered with croup from a very young age and at two had grommets inserted and adenoids removed.
This helped for a while, but we were constantly at the doctors. Paige started to make noises as expected and began to try and say words at the same developmental stage as her older sister. She was different though.
When she spoke, she knew what she was saying but no one else did, she struggled to get her tongue in the right place.
At the age of three we took her to private speech lessons. Phoebe could understand her and would interpret her words, we could understand some words but none of our friends and family could.
Paige relied on Phoebe to speak for her. Speech progress was very slow and at times extremely frustrating and her engagement was limited.
My wife Jolene became concerned with her interactions with other children. Paige was cared for in our home by a nanny as we both worked full time. She attended play groups each day but would isolate herself. She would play on her own. If all the children were painting, Paige would be in the sandpit. If all the children were in the sandpit, Paige would be painting. She was happy to do things on her own and sometimes did not know how to play with the other children.
At four, we enrolled her into a childcare centre to try and encourage socialisation skills. She did make a friend and they were stuck together like glue. At this point we noticed that she tended to follow what the other children were doing, if they sat on the mat she would follow, if they washed their hands for lunch, she would do the same. Little traits started to happen that we had not seen in our older daughter. If we went somewhere new, she would cling to us and hide her head, she would rely on Phoebe for security. She began to get fixated on things, if she had an idea in her head of how something had to be then she could not cope if it didn’t turn out that way, if she started something then she had to finish it before she could move to the next task. If things did not go to plan or as expected, then she would have huge meltdowns. The older she got the more violent these became.
We tried every technique you could imagine, timeout – she screamed louder, taking her favourite toy off her – she would tell us she never really liked it anyway, going to bed early – she would just keep getting up till her sister went to bed. Reward chart after reward chart but everything was short lived with Paige.
Jolene and I were really struggling and would play tag team, tag you’re in so that the other person could get a break hiding in the bathroom for 10 minutes. Every night was a fight with her, just getting her to shower would turn into a screaming match and it would take up to 2 ½ hours some nights to get her to sleep.
Paige slept with my wife on many occasions as we had to give in when the time was nearing midnight. It was having a huge toll on the both of us, we were so sleep deprived that our patience would be constantly running thin, a vicious circle.
It really was affecting Phoebe.
Because so much time was being spent trying to cope with Paige, she was being forgotten. Phoebe would try and act up on occasions just so she got our attention even though it was negative attention. The hardest thing was seeing how mean Paige could be towards Phoebe.
One minute they would be happily playing a game, it would be going great, everyone was happy – next minute – Phoebe would be crying as Paige had physically hurt her. This violence continued to get worse but was only ever directed at Phoebe or my wife, Paige did not understand what her actions felt like.
Jolene didn’t know what else to do and took her to our doctor. He gave her melatonin to help get her to sleep at night. It did work a little which meant we all got a little more sleep but if she was having a meltdown then there was no way you could get her to sleep. Paige’s meltdowns averaged 2 ½ hours of constant screaming, throwing anything she could, stomping and kicking walls.
Not knowing what else to do Jolene turned to the internet and asked Dr Google. After hours of research came up with the idea of Oppositional Defiance Disorder (ODD). We were convinced this was her as everything seemed to fit. We found a psychologist that specialised in children and took Paige there each week to try and find strategies to help.
We took Paige for about six months and each week we did discover more and more unique habits and traits; but the psychologist still could not pinpoint anything specific. She had the feeling that Paige had Attention Deficit Hyperactivity Disorder (ADHD) as she couldn’t sit still for any length of time or focus on what needed to be done, which was contributing to the other problems we were facing.
All this time my wife was begging for help through the public system, but she just kept being brushed off as we didn’t qualify or fit the mould.
We are now on the wait list to see the paediatric team.
After a very emotional chat with the psychologist, she referred me to a psychiatrist that specialises in children and one that would be able to meet Paige and diagnose her. We met him privately in our home and he spent some time with Paige.
He was clear that Paige had ADHD.
It was not what I was expecting, we then talked through the options and what that meant for Paige and our family. We decided to put her on a trial course of medication to see if this would help.
Paige got worse, if that was possible. Her meltdowns were more frequent, she became more aggressive hitting and pinching my wife, kicking out at us and more fixated. After a week we again met with the psychiatrist and we explained that he got the diagnosis wrong, she was worse. He just smiled and said “I thought this would happen” I didn’t quite know what he meant and didn’t feel very confident. He then went on to say that by medicating her ADHD it has now highlighted her other symptoms and he could then confirm a diagnosis of autism.
I was not prepared for this at all. Autism, what is autism and what am I meant to do with that? Jolene and I had a long chat with him, he explained how it was very common to be diagnosed with both Oppositional Defiant Disorder and autism at the same time.
Talking over the options we decided due to the severity of her meltdowns, fixed mindset and aggression we would try medication. Paige has been on medication for about five months and it has taken a while to get it right and to really see the affect it has on her. We still get the meltdowns, but they are over quickly, she can still lash out but can now recognise the impact and apologise after and she is beginning to learn calming and coping strategies.
Getting the diagnosis was a relief. We were assured that it wasn’t us, we weren’t failing as parents and it also wasn’t her. We just had to learn and understand who she was and how she saw the world.
We have now attended several courses and have spoken to other people in a similar situation. I have learnt that it is me that must change and not Paige.
Paige is Paige, she sees the world differently to me and it is my job as her father to learn how to support and parent her the way she needs it.
I was told that you cannot parent an autistic child in the same way as you parent a neurotypical child and every autistic child is different.
I had to and continue to try and understand her.
My wife and I now approach parenting differently.
We learned that we needed to slow down, look and listen. When we did that why she did things and reacted the way she did made sense. There had always been a reason behind them, it was just different to ours and what was neurotypically expected.
We keep a strict routine during the week with clear expectations. Paige knows exactly what to expect and what is expected of her. We haven’t mastered it yet and there still is lots to learn.
I wouldn’t change Paige for the world, her loving nature, willingness to help and her extremely quirky personality makes all the hard work worth it.
We still have a long road ahead and we will meet lots of obstacles along the way but each day we learn more ways to help Paige embrace who she is. As she gets older and her understanding matures, I am hoping she will be able to self-manage and recognise triggers.
All going to plan, I would have taught her the skills she needs to overcome these and be the amazing person she can be.
- Gareth Rogerson is a Tauranga-based electrical fitter.
- This article first appeared in the Altogether Autism Journal Issue 2, 2019