The Burke Family Story - Autism Awareness Day 2019

Wendy here, doing my part in spreading awareness for autism; something that’s very close to my heart.

I have 2 boys; Ethan who is 12 and Ryan who is 9.  When Ryan was 3, he was diagnosed with autism spectrum disorder.  This is our story, shared in the hopes that it may help to promote awareness and acceptance around the day-to-day challenges in families with special needs children, and what it’s like from the inside looking out.

The start of the story is much the same as the start of many family’s stories.  My hubby, Dan, and I decided that we wanted to have kids. 

Not much more thought went into it than that and certainly we thought that everything would be just the same as nearly every other family we have known. 

It’s fair to say that autism was on my radar though as my nephew had been diagnosed with Asperger’s Syndrome (which is under the Autism Spectrum Disorder banner). He was about 9 when Dan and I started our family and he lived interstate so we didn’t see much of him and certainly we had no insight to his day to day life.

From the time that Ethan (my oldest) was born I was secretly worried that he would have autism.  When he was 3 and I was pregnant with Ryan it had seemed that my fears had come true.  

There was some behaviour and social issues that day care had picked up that they were concerned about and thought we should investigate. Turned out there was some speech and language problems but no apparent autism. 

I was 6 months pregnant at the time and spent the next couple of months at paediatrician appointments and then shuttling Ethan to speech therapy.

I enjoyed being in hospital when Ryan was born.  I had really struggled with Ethan. I had an emergency C section, a staph infection, post-natal depression and stopped breast feeding because I just couldn’t cope.  Hospital seemed good this time, calmer.  

I still had Ryan via a C section but it was planned so it was not traumatic like the first.

Breast feeding seemed to be working. 

But, when we got home it was a whole different story. 

I really struggled with breastfeeding and my mood and I was diagnosed again with post-natal depression.

In my subsequent years I have done some research around women like me and it seems there is a small percentage of women who are unable to balance their hormones out when breast feeding. 

I stopped breast feeding when Ryan was 3 weeks old and I can tell you that I felt better the very next day. 

Why is this relevant? 

Well, there is a huge amount of evidence that suggests that kids with autism also have disrupted gut bacteria (called dysbiosis). 

Did Ryan’s Caesar birth instead of a vaginal birth contribute to his dysbiosis because he didn’t get enough of my bacteria when he was born? 

Did he miss out on more of my good bacteria because I didn’t breast feed him for long? 

Should I have pushed through or asked for more help?

These are nagging questions that sometimes seep into my head and breed emotions of guilt. 

I have spoken to many mothers of autistic kids over the years and I know that most have at least once wondered if there was something that they did or didn’t do that could have contributed to their child’s condition.  

The truth is we don’t know and the reality is that it doesn’t matter now.  

I could drown in feelings of responsibility but that will not help my family or myself.

The concept of autism in our family had not reoccurred to me since the paediatrician had repeatably advised that he did not think Ethan had it. 

I didn’t worry about it anymore and the possibility that Ryan might have it did not even enter my head.

Funny, in a naive kind of way, really.

Our first clue that things were different was Ryan’s language.  Or lack of it actually. 

That was around 12 – 16 months. 

There was lots of noise but no actual words. 

We started the process of what we liked to call “eliminating the variables”

Hearing tests found a glue ear, and then ear, nose and throat specialists turned up adenoids that were taken out. 

Weekly speech therapy and occupational therapy were started as progress was not as expected. 

A number of times I had to convince my doctor for referrals to specialists as I knew that we had not gotten to the bottom of it. 

I remember the horrific experience of weaning Ryan off his dummy. 

I have since learnt that loads of autistic kids are really oral which means chewing and sucking calms them enormously. 

No wonder it was so incredibly traumatic for him and this is where some of his behaviours escalated as well – makes sense if the dummy is what was soothing him!  Oh, the benefits of hindsight.

I remember before he had been diagnosed and he had a full meltdown at Chermside shopping centre.  He was on the ground, arms and legs flailing. All I could do was stay near him to make sure he didn’t hit something or someone else. 

The disapproving looks I got from some other shoppers is etched into my mind. 

I tried holding the line and being disciplined with him.

I have carried him over my shoulder screaming with arms and legs kicking me because he wanted to stare at the toys and I had already done the 5 to 1 countdown that we were leaving the shop but he still refused. 

I have sat at the dinner table for 2 hours trying to wait him out because he refused to eat his dinner as it wasn’t what he wanted. 

In short, I did all the things that are more likely to escalate a kid with autism. 

I started to try to toilet train him and it was a complete disaster. 

I remember being glad that I worked out at the gym to release frustration but looking back I also think that it was not always a healthy relationship.  I worked out to feel pain, I guess a bit like self-harm.

After all of this with Ryan, at 3 years 8 months and not remotely toilet trained, we found ourselves at a behavioural paediatrician’s office. 

A lengthy consult ensued and this is where we got the news.

Ryan is on the autism spectrum. 

Honestly, it was like being hit by a tonne of bricks and it still brings me to tears when I think about that day and how I felt my heart break.

There is an avalanche of thoughts and questions that hit all at once when you get this sort of news.

What happens now?

What does this mean for us?

What does this mean for him?

Will he go to a normal school?

How will he develop from here?

Will he ever have a normal life?

Will he ever be able to speak properly?

Will he ever be able to tell me he loves me?

Will he have friends?

Will he ever fall in love?

Will he ever get a job?

Will he ever be able to be self-sufficient?

Will he need me for the rest of his life?

Holy shit, what happens when I die?….. 

I might add that in the 6 years since the diagnosis, these questions still run through my mind on a semi regular basis. 

All except the one about being able to tell me that he loves me.  He does that a fair bit now 😊

Telling people bad news is a very interesting and sometimes frustrating thing. 

We have had a number of comments along the lines of “at least it’s not a terminal illness” and “you only get what you can handle” and stuff like that. 

It’s shit. 

Shit that this should happen and there is no need to try and dress it up into anything that is more than that.

Along with “he doesn’t look autistic” and my personal favourite, “doesn’t that mean he will be some kind of genius?”.

Rainman is just a movie people, it’s not real life… and exactly what does an autistic kid look like anyway?

I spoke to a lady recently who had several miscarriages in a row and we compared notes about the things people say… like “it’s gods plan”, “it’s for the best” etc, etc.  and we agree there are some well-meaning people who just don’t have a clue.

I remember reading a book “The Happiness Trap” by psychologist, Russ Harris, and he talks about acknowledging the enormity of someone’s bad news when they tell you and not trying to down play it by giving them tired statements to try to make them feel better. 

It’s not your job at the time and you devalue their pain by trying to do it. 

Your job is to listen and I couldn’t agree with him more. 

Now when people share this kind of devastating news with me, I usually respond, “I’m really sorry that’s happened – what can I do?”.  If it’s a close friend I straight out say “That’s shit news, mate”.

Anyway, amongst many explanations that we had to provide to other people about autism, we shared the news to our family and friends.

We had our meeting with Autism Queensland where all of the possibilities and programs were explained to us. 

Then comes the where to from here part. 

Ryan’s 7th birthday.

Ryan’s 7th birthday.

After a few months we were lucky enough to secure a place for Ryan in a pre school program for kids with autism, AEIOU, and this completely changed our lives. 

This is a place that interviews parents as well – everyone has to be on board to be part of the program.

It was here that I learnt more about how to relate to Ryan in a way he understands. 

They toilet trained him and they also trained Dan and I in what to expect as parents of an autistic child. 

Honestly, I don’t know where we would be without them. 

They are primarily a Queensland only group and I had heard stories of families moving interstate to be able to send their kids to that school because nothing like it existed anywhere else in Australia. We were so lucky.

After a year at AEIOU in an environment that understood and supported autism, we faced the very frightening prospect of mainstream school. 

Special schools require a certain intellectual impairment level for admission and it looked like Ryan did not have that.  This made us very nervous.

I appreciate how weird this sounds to someone not in this world – that we were disappointed that our son was not intellectually impaired enough to meet admission to a special school - but we knew that he would be safe in a special school and mainstream schools can be a huge gamble for special needs kids. 

We ended up interviewing at a number of different schools, one of which went through every cognitive deficit and told us they would not be able to support it… another that told us that they had their quota of kids with autism, thank you.

Local state schools are actually required to admit all students in their catchment but we were not big fans of the local state school. 

We finally found a school that were happy to have him and that we felt would provide him the support he needed.  This is one of the things that AEIOU had reiterated; don’t feel grateful for the school to have enrolled your child. He has a right to a good education and to be treated in a way that sets him up for success. 

It’s interesting because I have heard of a number of parents really struggling with schools and 100% believe that it’s about the school’s attitude. 

Some schools just don’t think they have to modify anything that they do, when obviously a child with autism and a child without it have different requirements.

Ryan and Ethan ended up going to different schools because there was no way Ethan’s school could have provided Ryan with what he needed to succeed, and this will probably continue into high schools as well.

As great as the student services area is at Ryan’s school, we have still had issues with the school.  At the end of the day Ryan is a special needs kid in a mainstream school.  A square peg in a round hole. 

He was recently suspended for a day as he deliberately ran into a teacher and hurt her wrist.

I do not excuse this behaviour but when you look at the lead up to the event you can see that they did almost everything that would unsettle a kid with autism. 

It reminded me of the things I did pre-diagnosis.

There is a massive gap in the education system for kids like him… and not just autistic kids but loads of kids with special needs. 

There just isn’t anywhere for them to go with a system that works for them.

Sometimes I fantasise about building my own school for kids like him (usually egged on by our occupational therapist) but I don’t know if I have the intestinal fortitude to do that.  Then I feel guilty that about that.  It’s a never-ending cycle.

Although the kids at school play with him, Ryan doesn’t really have many friends. 

He didn’t get invited to one birthday party last year despite us holding one at the start of the year and inviting the whole class. 

That makes me incredibly sad.

He doesn’t get invited to come over for play dates. He can’t really hold an age appropriate conversation with his peers and his interests are those that would normally be of a prep kid even though he is in grade 4. Things like Lightening McQueen and Peppa Pig.

We struggle to find out of school sports programs that will suit him as he does not have the attention span, the cognitive ability to process instructions, and the co-ordination of other kids his age. 

Work has to be arranged around school start and finish times as he has not done that well in after school programs.

When parents talk about difficult stuff that happens with their kids, most of the time I listen and nod my head although my inside voice often says stuff like “you have no idea….” but I never say anything because that’s not fair to the other parents.

He has a very limited food palate and, as a Naturopath, I find that really hard to cope with!

One of our goals this year is to engage the services of someone who specialises in fussy eating. 

For those who think you can teach kids to eat by telling them to eat what is on their plate or they get nothing, I would say they have never met an autistic kid. 

Autistic kids would starve themselves rather than eat something that for some reason they think is not good. 

Sometimes we attract attention when we are out as Ryan makes noises and flaps his hands when he is excited.  I don’t feel the need to explain his behaviour so I just ignore the looks we get.

I worry about Ryan’s future and what it holds, and the prospect of high school scares the living shit out of me. 

There is far too much data regarding the difficulty that autistic kids have at high school and as adults out in the real world for me to ignore.

I have calculated that if I live to 100, then I will have seen him safely to nearly 60 and I figure he might be ok after that as there are more aged care facilities available at that age.

We have investigated disability trust funds already. 

I think all parents worry about what might happen to our kids when we die… but there’s a barely concealed panic in a special needs parent around this concept. 

We have limited family near us, and it’s really hard for us to find a babysitter who we think will cope okay with caring for Ryan. So, in the last 9 years, there have been three occasions that we have been away from Ryan overnight, and it was my parents that flew up from interstate to look after the boys on those occasions.

I heard that parents of special needs kids have the stress patterns that are seen in ex-combat soldiers, and I totally get that. 

In the coming weeks, I’m going to share my experiences around these levels of stress.

And that stress can come from so many angles… including your support network.

We have had some issues with family and friends because they have made little effort to understand autism and to appreciate how differently Ryan’s brain works.

Even those closest to us expect Ryan to be just like any other nine year old… not changing their tone or behaviour or expectations of him to accommodate for the way his brain works.

There are people out there who think that the ever-climbing diagnosis rates are just parents looking for a label and that all the kids need is some good old-fashioned discipline. 

Many of them are happy to share these gems of apparent wisdom as well. 

I would challenge them to live our life for a week and see if they thought the same afterward. 

Discipline doesn’t change autism… in fact, it often escalates it.

The ignorance used to make me angry but now it sort of washes over me. 

Slowly I see the attitudes change as there are more kids that are experiencing learning and behavioural difficulties. 

Before the National Disability Insurance Scheme came this year, we would have spent a small mortgage payment every week in therapy costs and we have done that for the last seven years. 

Speech, occupational therapy, behavioural therapy. 

Most special needs parents I know are about the same. 

On good days, I would say that it was lucky that Ryan came to us because we can provide the services/therapies that he needs.  Not every day is a good day though.

But, I remember that all of these challenges are wrapped in the package of a great little kid. 

He has loads of love to give and he has a wicked sense of humour.

He loves his brother Ethan and thinks that his next-door neighbour Nicole is the best girl in the whole world (which is true). 

He has an amazing way of bringing out the best in some people who see him for who he is.

And, there is nothing quite like a Ryan hug that has been freely given.

I know it mightn’t sound like it, but we actually consider ourselves lucky in the fact that Ryan can express himself and do lots of things independently. 

I know some other kids that can’t and this can be extra tough on parents. 

Whilst the experience has shown us some of the ignorance of people, it has also shown us that there are some incredibly gifted and committed people who work in this space, and it’s definitely not for the financial reward. 

Our speechie and our occupational therapist (OT) have become part of our family. They are the most incredibly talented and kind professionals that I have had the pleasure of knowing. 

The head of student service at Ryan’s school is nothing short of an angel and he has two teachers’ aides that go far, far beyond their job requirements in their care.

We don’t know what the future holds or what it will bring. 

Dan and I do the best that we can with the knowledge that we have, and we try to educate people along the way.  I hope this article helps in that mission.

It’s not just that people with disabilities should be treated well because it’s basic human decency, it’s also because there is a great deal to learn off people with disabilities. 

I often say to mainstream parents that it’s good if there is a special needs kid in your child’s class. It will teach their child how to communicate on different levels, in different ways and how to think of solutions to problems that wouldn’t have occurred to them.  All very marketable and important qualities in later life. 

So that’s my family’s story of autism.  There are millions of other stories around the world about people living with autism and they are all different because people are different.

And, the story of how I cope as a mother will continue to unfold over the coming weeks Feel free to share our story if you think that it might help promote more understanding in the wider community.

Much love

The Burke family.

Autism Awareness Day 2019.

Emily Banks