A visit to the beach

Each year Sculpture by the Sea, Cottlesloe is held on the gorgeous Cottlesloe Beach. We all love the beach and Daddy superhero and I love art, so it combines all our interests. Every year we make plans to go but never actually end up getting there, we're always way laid with other plans or prior commitments.

After baking bread this morning, we decided that we would brave the nasty looking storm clouds and do a spur of the moment drive to Cottlesloe. All the way to Cottlesloe we heard the obligatory "are we there yet?" and "how much longer?" When we arrived I am glad that we did make the drive.

When we got out of the car, both O and L saw the beach and were off. And then they saw the tee pees, I could see their brains ticking over as we walked down the pathway as to what to do first. Ocean or tee pees!

O and L jumped straight into what looked like a bean bag before realising that they weren't that comfortable after all. They were then off to the water's edge to collect shells and play in the water.

We slowly started meandering down the beach, Daddy superhero and I tag teaming to look at the sculptures while the little superheros played on the beach. The sculptures didn't disappoint, they were amazing, some even caught the attention of my little superheroes.

L was very excited when he heard and saw some Black Hawk Helicopters "Just like cousin Mikeys!" Obviously not part of the exhibition but still very impressive.

But in the end the beach, water and shells won out. The little superheroes had a ball. They dug holes and channels, they built sandcastles, they chased the waves and collected shells. They had sand in places where sand probably shouldn't go, but they had fun.

L was convinced that there were BIG sharks in the water and collected a handful of sand that he carted down the beach as he desperately wanted to feed the said sharks!

We were even able to have a family photo taken while we sat on one of the sculptures, although convincing O that we were allowed to did take a while!

And thankfully the rain held off until we got back into the car to drive home.

If you ask L what the highlight of the impromptu drive was? Hearing the shark siren as we walked from the car to find some lunch but he was very disappointed that he couldn't see the sharks! Next time buddy, next time!

Welcome to Superhero Cooking School!

Both of my little superheroes have aversions to particular foods but we are very fortunate that they both are reasonably good eaters.

Whether we are cooking in the kitchen or outside on the barbeque, one or both of the little superheroes can be found hovering around wanting to help mix or offering to be a taste tester.

From a young age O has always been interested in helping in the kitchen and she's always expressed her desire to learn how to cook. She received a kids cook book for her birthday a few years ago and she is constantly picking recipes out of it to cook with us.

L has always been intrigued by cooking shows and he just loves food in general! Other than superhero shows and movies, he will sit and watch a cooking show!

Just recently we've been watching a children's cooking show that is based in the US. After watching an episode L said to us "when I get big, I go on a cooking show." He has big ambitions which is wonderful. O then chimed in and asked when could they help to cook dinner.

So on Friday afternoon on the way home from school, Daddy superhero took both little superheroes to the shops and together they picked out the ingredients to make several meals over the weekend.

On Saturday I was lucky enough to have a night off from kitchen duties as Daddy superhero, L and O took over and made hamburgers.

There were some interesting conversations happening around the dining room table as they made the hamburgers:

"How is mince chopped?" and "Why can't I eat the egg shell?" and "Ooh that feels disgusting!" We need to refine L's technique for cracking an egg, there were lots of little bits of egg shell that needed to be retrieved from the mince!

Both of my little superheroes had a go at using the vegetable peeler and the grater and no one lost any fingers!

Mixing all the ingredients together with their hands got lots of "ooh disgusting" remarks from L!

The end result were very delicious hamburgers which O picked at and L refused to eat! If we had mushed the hamburgers up and called it mince, they would have eaten it for sure!  Food aversions, oh well!

This morning Daddy superhero was woken to a little voice saying "It's bread making time!" O couldn't wait to make her bread, she got stuck straight into it so I missed taking photos, was my turn for a sleep in!

Nothing better than a fresh loaf of bread for breakfast!

When Daddy superhero asked L if he wanted to make his bread he replied with "no, wait for Mummy!" and I was promptly woken up.

As L was pouring the flour into his bowl, he dropped the bag and a huge flour cloud rose up. L's response was "Cool, I like a scientist!"

Both of the little superheroes were fascinated by the rising dough! They wanted to know all the ins and out of how yeast helps the dough to rise.

L's bread looked great as well but no photos were allowed. Both the little superheroes did a wonderful job with helping with the hamburgers and the bread making. Apparently the next recipe that O wants to have a go at is a chocolate sponge cake.

And throughout the whole process, Daddy superhero didn't lose his cool once!!

Why do peple with disabilities make others nervous?

Individuals with disabilities seem to make some people nervous and the nervousness doesn't discriminate. You name a disability and someone in this wide world has probably felt nervous when interacting with an individual with that disability.

It is something that I've always been acutely aware of. Even as a teenager, I was always aware that when a person with a disability was present, some people just seemed to become a nervous wreck.

More recently I have noticed it when we have disabled volunteers attend my workplace. Several of the children become nervous and revert to being non-verbal toddlers. They lose their ability to talk and just stare. Even other adults visiting the centre start to look and act awkward.

Autism is an invisible disability. O and L look like every other kid, they just have odd mannerisms at times. When L is stimming we do get the occasional odd look and people become nervous and lost for words. You can see the awkwardness written all over their faces and I can tell what is running through their brains - what do I say, where do I look, do I stay, do I go .........

I'm not sure of the exact reason why people become nervous. I have thought about it long and hard and have come up with the following possibilities. It could be that they find it hard to empathize with the person, they may not be aware of what the disability actually is or how the disability effects the individual. The nervousness could stem from the fear of saying the wrong thing to the person or they may feel sorry for the individual and may genuinely not know how to interact appropriately with them.

So how do we educate children, teenagers, parents and other adults on how to NOT become nervous?

How do we educate people to be accepting of differences instead?

I'm not sure that I can answer of behalf of the entire disability sector, I can however answer on behalf of my little superheroes!

O and L may not always respond to people when they are spoken to, but they still like to be talked to. They are social little beings, they like to be included in conversation even when they don't feel like talking. They may just take a little longer to respond. They shouldn't be dismissed just because in that moment they don't feel like talking.

Talk to the person with the disability, rather than talking to the wheelchair or guide dog or prosthetic limb or the disability. Be respectful of the person and try to see beyond the disability. They have feelings, they have interests, they are just like everyone else.

If you are curious about how a person acts, speaks or looks then please ask respectful questions. The more questions you ask, the more informed you will be. Asking questions has the roll on effect of increasing awareness and acceptance.

I always tell people who are curious that L's brain is wired differently to that of others. He processes what you do and say very differently. It doesn't make him any less, he just has a different ability.

Please don't make assumptions about people and their disabilities. Too many people have wrong assumptions of autism and other disabilities. Please don't assume that because you have read an article on autism, you know everything about the disorder. The chances are that you don't know everything. Knowledge is always changing. At times, going to the source is the best way to gain knowledge.

Children learn so much from people who lead by example. If your child is staring at someone with a disability, go over and engage in friendly conversation with that person. The child is going to begin to learn that it is okay to ask questions, it is okay to be friendly with people who look and act differently from them.

I've heard many people make very cruel remarks about others, both people with disabilities and also towards others who may not have a disability. What sort of an example is that leading by? We try to teach our children that bullying is not okay and yet some adults think it is perfectly okay to mock others.

It is a normal trait to feel nervous, we've all felt this emotion at some stage. But perhaps we should all make a concerted effort to not to show our nervousness as children are exceptionally good at picking up on non-verbal cues.

Awkwardness and nervousness usually stems from ignorance and/or fear of the unknown.

As parents we are constantly learning on this journey called life and our ultimate goal is to impart the knowledge onto our children. It can be hard to determine which lessons would have the bigger impact on our children and which lessons have a greater importance.

The one thing that I constantly remind myself is to teach my little superheroes how to be accepting of others. As long as they are morally sound, then I don't have anything to worry about.

Autism Spectrum Disorder, what is it?

I have written a blog previously titled “What does autism look like” and I feel it is the right time to write one about what Autism is.

There are so many stereotypes about what Autism is. If you ask a lay person who has very little to do with the Autism world what they think Autism is, you’ll probably hear an answer somewhere along the lines of “someone sitting in a corner of a room, rocking and banging their head against the wall.”

I have heard this description of Autism, and scarily only just recently.

Autism can be this but Autism can also look like many other things.

As the saying goes: if you’ve met one person with Autism, you’ve met one person with Autism. No two people on the Autism Spectrum are like. Autism presents in many many different ways.

I honestly don't believe that many people can honestly and truthfully say that they have truly understood autism until they were directly effected by it. Be it parents, teachers, carers, educators, therapists - what they know at the start of an autism journey dramatically increases along the journey.

I'm not professing to being an expert on autism, however I am an expert on my children, both have autism and as a consequence I have had to learn a lot in a very short period of time. What I can do is pass on the knowledge that I have gained so far on our journey.

What is Autism Spectrum Disorder?

If you look up the definition of Autism you will find this -

Autism – a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

Autism Spectrum Disorder is a lifelong neurological developmental condition and is characterized by difficulties in communication, social interaction and restricted or repetitive behaviours and interests. Autism can affect the way an individual relates to their environment and also how they interact with other people.

The symptoms of Autism quite often presents in early childhood, however they can also present later in life. As I have said previously girls generally present differently to boys and as such girls can be diagnosed at a much older age.

As the term “spectrum” suggests, individuals with autism vary in how their traits present as well as the degree in which they are affected. Some individuals may be able to live relatively “normal” lives while for other individuals autism can be a very disabling condition and they may require ongoing specialist support.

For children who are diagnosed, early intervention can have tremendous results in improving their quality of life and assists them to live life to their full potential. L has made the most amazing progress since February last year and much of his progress is due to the early intervention service that he attends once a week

How is Autism Diagnosed?

To receive a diagnosis of Autism, an individual must go through a series of assessments based on a checklist in the Diagnostic and Statistical Manual of Mental Disorders, or the DSM. In Western Australia, a child needs three separate diagnosis from three separate medical professionals - a Pediatrician, a speech therapist and a psychologist - and all three must agree with each other. If one disagrees, a diagnosis of Autism will not be provided. This assessment process can be and quite often is a very long, tiring emotional journey just to get the diagnosis.

Autism is diagnosed using a behavioural criterion. At present there is no medical testing available but it is hoped that with the advances in the world wide autism research that one day in the future, this will be available.

The first two versions of the DSM indicated that children who presented with Autism traits should be classified as having ‘childhood schizophrenia.’ I can imagine that quite a number of individuals would have been institutionalized after receiving this diagnosis. Oh how time has changed.

The DSM-3 changed the criteria and an individual presenting with autism traits would be have been categorized into one of three disorders – Autistic Disorder, Asperger’s Syndrome or Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS.)

In 2013, the most recent edition of the manual was published, the DSM-5, and the criteria was once again changed. All three of the previous categories were combined into one and it is now called Autism Spectrum Disorder or ASD. An individual is given a diagnosis based on three levels - Level 1 being equivalent to High Functioning Autism and Level 3 on the lower end of the scale. An individual can be diagnosed with purely one level or a combination of levels depending on the severity of their traits.

How many people have Autism?

From the 2012 ABS Autism in Australia, the report states that 0.5 percent of the population, or 115,400 people, have been diagnosed with Autism. The report also states that boys are more than four times likely to be diagnosed than girls.

It was once thought that Autism was a male condition but as more and more research is being done on Autism, professionals are beginning to realise that girls quite often present differently to boys and as such many girls have been misdiagnosed or missed all together. In terms of the medical world, this is quite a new development and not all professionals agree or are aware of this and as such there are still girls being misdiagnosed.

Girls are better are masking their traits as they are able to copy or mimic the actions of their peers. Boys, generally, are not able to do this. As a result many girls are not diagnosed until they reach the age of 6 or 7 or even until their reach their teenage years when social interactions come into play.

What is Autism caused by?

While there is a lot of research being done, and research that has been done, around the world into Autism, there is still no known single cause of Autism. Many scientists, medical professionals and individuals with Autism are doing research on Autism to try and understand the disorder. There are many different angles being taken with the research as well to find out as much about the disorder as we can.

One thought is that Autism could be caused by genetic factors but which genes are responsible are unknown. Another thought is that environmental factors could possibly play a role in an individual developing Autism. It is also believed that Autism occurs as a result of changes to the development and growth of the brain.

It is generally agreed by the researchers that Autism is more likely to have multiple causes that all work together and it is combinations of these various causes that produce the different ways in which Autism presents itself. This makes a lot of sense!

Some medical professionals believe that there is an increased chance of having another child on the spectrum if there is already a child in the family who has a diagnosis.

You cannot catch Autism. Period. Not going to say any more on this.

I DO NOT believe that Autism is caused by vaccinations. L was a different baby from birth. Even though we only started noticing O’s traits in the last 12 months, it has become apparent that O was also presenting traits from birth, her traits just didn’t stand out.

I’ve had the vaccination chat with our pediatrician and the way that he explained it was that quite often autism doesn’t start being overly obvious until around the 18 month old stage which just happens to coincide with the 18 month year old needles. So some parents then make a connection between vaccinations and Autism.

This is my opinion. If your opinion differs to mine, not a problem. Freedom of speech, it’s a great thing!

What does Autism look like?

As there is no physical marker for Autism, individuals generally look no different to others. Autism doesn’t look like one thing! When people say “oh are you sure, he doesn’t look autistic” I generally ask them what does autism look like? And then they um and ah before saying “I’m not sure actually!"

It is called Autism Spectrum Disorder for a reason and it as wide as it is long. Every individual with autism is unique, the same as all of us. This as you can imagine creates a slight problem when it comes to trying to explain autism.

So what can autism can look like?

• An individual may have challenges with verbal and non-verbal communication as well as interactions with others. This is turn affects how they experience and participate in the world around them. Some individuals may have no interest what so ever in their peers or even their immediate family. Individuals may have speech and language difficulties. Individuals may have difficulty in understanding and following simple instructions. Some may engage in echolalia which means that they mimic or echo words or phrases that they hear.
• Some individuals may be completely non-verbal and use sounds to communicate.
• Individuals may have unusual sensory interests, they may sniff, feel or taste unusual objects. They may have sensory sensitivities to sounds, textures, smells and so on which results in unusual reactions to what they see, hear, smell, taste and/or touch. They may only want to eat foods of a particular texture. Some may be sensory seekers, some may be sensory avoiders.
• Individuals may have an intellectual impairment or a learning difficult. Some individuals may have a below average intelligence, while others may be on par with their peers or above average even.
• Individuals may develop repetitive behaviours such as rocking, flapping, bouncing or moving their bodies in different ways and they do this over and over again. This is known as stimming and it assists the individual to cope with the world around them. Stimming can assist them to regulate their sensory input. Individuals may have different stims for their different emotions. When L is happy he will bounce on the spot, when he is anxious he starts to hit himself in the head.
• Individuals may have a preference to specific routines and will have an intense dislike to changes in those routines. Even the slightest change can cause a huge amount of distress.
• Individuals may have a strong interest or obsession on one topic or subject. L's obsession is superheroes - everything he does is based on superheroes. His clothes, his games, his toys, the shows that he will watch. Superheroes are the one topic that he will always talk about the anyone.

• Individuals, especially children, will line objects up or group objects. This may not make a lot of sense to outsiders, but they make complete sense to them. L likes to line objects, O groups objects. This in itself can make life very interesting!
• Individuals may have sleep issues and not just a slight case of insomnia. We're talking they sleep when they need to not when others need them to sleep. We've found that since taking Melatonin, both L and O's sleep patterns have improved however if L is not tired the melatonin will not keep him asleep. And fortunately for L, he can manage quite well on only 5 hours sleep a night! I can't say the same for myself!
• Individuals may have anxiety issues. O suffers from severe anxiety and it can affect her any time of the day or night. O is gradually learning the skills that she needs to self manage her anxiety.
• Individuals may have difficulties with their fine and/or gross motor skills. L has brilliant gross motor skills however his fine motor skills weren't the best. O is the opposite, her fine motor skills are fantastic and always have been.
• Children quite often will walk on their tippy toes, it is called toe walking!
• Individuals may have trouble making and keeping eye contact with others.
• Individuals may have difficulties in expressing emotion, reading others emotions and showing empathy towards others. Individuals may have regular outbursts as they are unable to regulate their own emotions.
• Individuals can be very, very literal thinkers.

There are many, many more indicators of autism, far too many to list in fact. Some individuals present with all indicators, some may only present with a few.

It is important to remember that some of these indicators can be present in all children as they can be part of the different stages of child development. What is important to know is that when the behaviour is ongoing, it is probably a good idea to get the child seen by a medical professional. Generally all children will toe walk as babies when they are learning to walk, however it is when they continue to toe walk as toddlers and children that it can become an issue.

Is there a cure?

There is no cure for autism. There is no magic pill that can be taken. Autism does not go away. It is present 24/7 and as I have stated previously, autism is lifelong.

For some individuals autism can be debilitating, it can have huge impacts on all facets of their life. Parents have to consider making arrangements for the future to ensure that their children are well looked after. I can't imagine how this would feel.

For others, therapy can make a huge difference to the quality of their life and it means that they are able to live a "normal" life as an independent adult.

What we have found is that L's autism traits are becoming easier to manage with the therapy that he receives. People who have never met L before have commented that they would not have known that he had autism unless they were told.

What needs to be remembered is that autistic children grow into autistic adults.

The more awareness and acceptance that there is in society about autism, the easier it is going to be in the future for these children! There does need to be better knowledge and understanding overall.

More knowledge and understanding means that there would be a better awareness of autism and as such a higher acceptance and inclusion of individuals with autism.

Awareness, acceptance and inclusion - three little words that mean so much to those on the autism journey!

Useful links:

http://raisingchildren.net.au/articles/autistic_disorder_signs_and_symptoms.html

https://www.autismspectrum.org.au/content/what-autism

https://www.autism.org.au/what-is-autism/

The Autistic Brain - Temple Grandin

**** Please note that I do not receive any commissions of any sort for the book that is mentioned in this post. It is simply a book that I have found useful. ****

I've just finished reading "The Autistic Brain" which is written by Temple Grandin and Richard Panek.

Oh my, what an in-depth, fascinating and very informative read.

If you haven't heard of Temple Grandin, she is arguably one of the most accomplished adults with Autism in the world. She is a professor of animal science at the Colorado State University and the University openly calls her "the most accomplished and well known adult with autism in the world."

If you haven't watched one of her TED talks, you really should. Temple didn't speak until she was three and a half years old, she communicated her frustration by screaming, peeping and humming. After receiving the diagnosis of Autism, her parents were told that they should institutionalize her, but they didn't. Temple is also an outspoken Autism advocate.

In "The Autistic Brain," Temple reports on some of the groundbreaking research that is being done around the world on Autism. She writes about her own experiences and discusses the remarkable new discoveries that are being made about the autistic brain.

These new discoveries are being made through the use of neuroimaging and genetic research and are beginning to link brain science to behaviour. Temple shares images of her own brain scans, and there are multiple scans to view.

The results of the new research that she shares are absolutely fascinating. Some of the results are showing that where pathways in autistic brains are lacking, other pathways have compensated and have doubled or tripled in size.

Temple also highlights the importance of needing more research into the long-ignored sensory problems and how they affect individuals with Autism.

One of the points that Temple discusses throughout the book is that parents and educators who are raising and educating children who are on the autism spectrum, should be focusing on the child's overlooked strengths rather than on their weaknesses. If all of society did this, then wouldn't there be a huge shift in how Autism is viewed.

There were several passages in the book that stood out but one in particular leapt right off the page at me - "for me, autism is secondary."

Temple goes on to say that Autism is certainly a part of her but she will not allow her Autism to define her.

This is exactly what I have been explaining to people about my little superheroes - that their autism and anxiety is a part of who they are but it in no way defines them. It makes me incredibly happy that other individuals with autism have the same view.

If you have an interest in the neurological side of Autism and the current scientific research that is being conducted, this is the book for you!