Thursday 20 September 2018

One Photo ...... And It Means So Much.

Have you ever come across a photo and it brings back memories? A photograph that tells a story?

This is one such photograph of L and it has such a memorable story behind it.

I came across this photograph quite by accident as I was logging onto an online early childhood learning program for work. I had completely forgotten that at one of the early learning centres that L attended a few years ago that they used this program to document a child's learning journey. So imagine my surprise when I logged on and found all of L's stories and a few photographs.

This photograph may just look like a little boy riding on a tricycle and yet it means so much more to us.

This was taken in the first half of 2015 and L had only recently started to talk - he'd use single words to communicate his needs. When he tried to speak more than one word, the words would be strung together as a group of nonsensical sounds. L's vocabulary consisted of roughly 20 words. L had just turned three.

L was obsessed with superheroes (and still is!) Up to this point L struggled to make and keep friends - he was unsure of how to step into social interactions. During play L was unaware of how rough he could become so other children were wary of him. Other parents were wary of L and as such didn't want their children playing with L. Parents saw L as the naughty child. Up to this point L had yet to receive an invitation to a birthday party from one of his peers.

Roughly a month after this photo was taken L made his first real friend, H. H was the first real friend who accepted L for who he was, he just got L. And for that I am so very thankful. Once he'd made a good friend in H, more followed.

At time of this photograph being taken we hadn't discovered melatonin and as such L slept even less than he does now. L used to lash out at everyone and everything. He was a runner and would take off onto roads. We had to keep the house locked when we were at home otherwise he'd take off out of the front door. L hated wearing shoes. Clothing was optional.

At the time we struggled to understand L's behaviour - he seemed to be in a constant state of meltdown due to sensory overload or frustration with us being unable to understand his communication. His sensory issues were so very obvious and yet we struggled to get our GP to take us seriously. 4 months after this photo we received a provisional diagnosis of Autism and suddenly L's world made a lot of sense to us.

The pieces of the puzzle fell into place and life became slightly crazier but much easier.

This might just be a photo of L riding a bike but it represents the beginning of big changes for us all.

I look back on this photo and I can see the huge progress that my little man has made in a little over three years. I am so very proud of L and of everything that he has achieved.

I'm not telling you all for sympathy or pity. This is simply a turning point in our life. This was the start of our families amazing autism journey.

Sunday 16 September 2018

Holy Saturday Superheroes!

Holy Saturday Superheroes! 

Dark Knight Fans can rejoice!

It's Batman Day!

Yes Dark Knight Fans, it is a real day. But up until last week I did not know that there was a day dedicated to all things Batman! I stumbled across it quite by accident through the Oz Comic-Con site - yep, it's less than one week until Oz Comic-Con time!! Obviously I am not a REAL Dark Knight fan! But in saying that, the Dark Knight fans in superhero headquarters also did not know about Batman day!

It turns out that 2018 marks the 5th time that Batman Day has been celebrated and back in July of this year, DC announced that September the 15th 2018 would be Batman Day. The day when all things to do with the Dark Knight could be celebrated and his first appearance in the Detective Comics #27 back in 1939 would be honoured. 

79 years of Batman! Holy Superheroes! That's a long time to be keeping watch over Gotham City!

From the very beginning, Batman has always been one of L's most favourite superheroes. 

So how did L discover Batman? Well, Daddy superhero is a huge fan of all things to do with superheroes. And when L didn't need to sleep, he and Daddy would sit up and watch superhero cartoons. From the start, L was drawn to any television shows or movies or cartoons that had Batman in it! And the older the Batman show, the better!

When L first discovered Batman, he's wanted to dress like Batman. He's wanted to be Batman! Clothing, shoes, bags, movies, drink bottles, you name it, all had to have Batman on it.

Batman (and other superheroes) was the one topic that could get L talking. 

L has more Batman clothing than you can poke a stick at and I am fairly certain that he has a Batman costume from every era of Batman!

So here is the evolution of Batman - according to L! With a little help from O!

And what did we do on Batman Day 2018? We watched a Batman movie of course!! And an Adam West one at that!

Happy Batman Day to you all!

What does an Occupational Therapist do?

As I sit here in the reception area of L's therapy provider, I've been pondering - what does an Occupational therapist actually do?

I will be the first to admit that prior to gaining L and O's diagnosis of Autism, I had no idea what an Occupational Therapist actually did! I know now first hand just how incredibly important and beneficial an Occupational Therapist can be. L's Occupational Therapists over the last three and a half years, have been instrumental in the dramatic improvements that L has made. And the same can be said for O's Occupational Therapists.

So how does an Occupational Therapist actually help?

If you have ever sat in on an Occupational Therapy session, you may have noticed that a lot of play and a lot of talking occurs during the session. To the outsider it may appear that there is no benefit of this to the child but there certainly is.

Let's go back to basics ...

An Occupational Therapist can help children, and adults, with a variety of issues from cognitive skills to physical and sensory skills to motor skills and much much more. Occupational Therapy deals with fine motor skills, visual-perception skills, cognitive skills and sensory processing difficulties among others!

But when you hear the word "Occupational," you tend to think of adults. Adults after all have an occupation, or paid work, and yet children do not.

However while children may not have an official occupation, their goal in life is to play - yes play is an occupation - and to learn. Children need to practise skills and learn new skills to assist them later in life and the best way to do this is through play.

When it is simplified, Occupational Therapy is all about making sure that people can do the "occupations" that are important to them. For children - their occupation is to play and learn! If play is fun, children tend to learn and take in more.

Occupational Therapy can benefit individuals who have been diagnosed with Autism, those with sensory processing difficulties, individuals who have sustained traumatic injuries, individuals with developmental delays, individuals who have learning difficulties, Rheumatoid Arthritis, Dyspraxia, Cerebral Palsy and many more difficulties. Occupational Therapy can basically assist an individual who has difficulties with functional skills.

For a child, the first few sessions with an Occupational Therapist is all about assessment. The Occupational Therapist will assess and evaluate (through play) the child's current skill level and may compare their current level to the developmentally appropriate level for their age. While it sounds odd that child's skills are assessed, it is vital that this assessment occurs. Based on their current skill level, a plan can be put in place as to where the child needs to be. 

Both O and L's Occupational Therapy plans are based on where they both currently are and where we want them to be in twelve months time - we want them both to be able to self regulate their emotions. We want them both to be able to recognise their own and others emotions.

Throughout both O and L's Occupational Therapy sessions, assessments are made on a continual basis against their goals. This is to ensure that the goals are being met but also so that the goals can be updated when needed. Every twelve months we sit down with the therapists and reassess the goals.

The great thing about the Occupational Therapy sessions is that neither O nor L realise that they are learning new skills. They both think that they are just having fun! L makes me giggle quietly on a regular basis when he decides that he needs to go to Occupational Therapy instead of school because school is too hard when in actual fact he is working harder in his Occupational Therapy than he is at school!

During L's Occupational Therapy sessions he is working on …..

  • Developing his fine motor skills which assist him with his hand-eye coordination and his pencil grip for school. Fine motor skills also assists with developing L's play skills (hitting a ball with a bat,) buttoning up clothes, being able to do up a zipper. Up until a few weeks ago L struggled with zippers and would not even attempt to do one up. He now has the confidence to try to do up a zipper without losing his cool!
  • L is beginning to recognise the internal (interoception) feelings of his emotions.
  • L is working on his turn taking and sharing skills.
  • L has learnt and is continuing to learn how to interact socially with his peers.
  • L is learning how to regulate his own emotions. Learning how to stay calm and brave when things get a little hard.
  • L is strengthening his proximal stability.
  • Everyday life skills and much, much more!

I have a lot of respect for all of L and O's therapists. Occupational Therapy has given L and O so much hope and has increased their confidence that they are able to overcome challenges that they both come across in life.

Tuesday 11 September 2018

Autism 101 - What NOT to say!

Over the last three and a half years since L was diagnosed as being on the Autism spectrum, people have made numerous comments about L, and now O, being on the spectrum. Some of these comments have been made by people who are genuinely curious about what autism is and by those who would like to know more. However many of these comments have been made by people who really should know better.

Some of the comments may seem innocent enough, but depending on how they are asked or said, they can hit a very raw nerve. These comments can turn a conversation that is flowing very easily into a very awkward and silent encounter. I've been thinking about this post for a while now - it is one that I have been itching to write as these comments are being made far too frequently.

So without any further ado, here is my Autism 101 - my top ten of what NOT to say to a parent whose child has been diagnosed with autism.

10. "Are you sure the doctors got it right?"

Ummm, yep, am fairly certain that the Pediatrician, Speech Pathologist and Child Psychologist got the diagnosis right. And considering how much money and time we spent during the assessment period - yes that's right, it took six months from start to finish and several thousand dollars for each child - I am 100% certain that the diagnosis is correct. Also, when you take into account the opinions of the Occupational Therapists, Speech Therapists and Child Psychologist's, who also whole heartedly agree with the diagnosis, the diagnosis is definitely correct.

And on the same line, no, we're not going to go and get a second opinion. We've already got three separate opinions. And they all agree with each other.

9. "I know all about autism, my cousin's sister's neighbour's son has autism."

Okay, pray do tell, what do you know about autism? 

There is a saying - if you've met one person with autism, you've met one person with autism. 

Every individual is different. Every person on the spectrum presents differently. You may notice similarities between individuals who are on the spectrum, but how they experience the world around them, differs from the next. I have two children and both present differently to the other. I certainly don't profess to knowing everything about autism - I learn new things every day.

8. "Are they immunized? Because I've heard that immunizations cause autism."

Yes they are immunized, thanks for asking. 

No, immunizations don't cause autism.

And here's where you can read where those research papers were discredited. Good bye.

This is not a conversation that I will have with anyone as friendships can be lost and conversations can turn nasty when the word "immunizations" is muttered. We are all entitled to our own opinion - mine is that immunizations does very definitely NOT cause autism. L was a different baby from birth. O's autism was also present from birth, her traits just didn't stand out to us until she started struggling socially and emotionally. End of story.

7. "Autism is only fairly recent, isn't it?"

This is a comment that I can excuse being asked as while autism has been known about for a long time, it hasn't really been in the public eye as such. Back in the good old days, an individual who was on the spectrum may have been institutionalized or marginalized or seen as odd as there really wasn't a lot known about autism. Albert Einstein, Sir Isaac Newton, Michelangelo, Charles Darwin, Sir Anthony Hopkins, Susan Boyle, Temple Grandin - some where diagnosed early in life, some a lot later and some, if a diagnosis could be made retrospectively, would most likely be on the spectrum.

So yes, in the public eye, autism is fairly recent. But medically, autism has always been present just not well known! 

6. "My children eat what they're given. All children will eat the food when they're hungry, you should try it!"

That's fantastic for you. Your children must not have food aversions! My two children, on the other hand, will not eat when they are hungry. They would prefer to eat nothing at all than eat something that induces a feeling of fear, discomfort and anxety due to the smell, taste or texture of the food that is in front of them.

Believe me, we have tried to make both O and L eat certain foods but some battles just aren't worth fighting. If they are happy to eat baked beans or spaghetti for dinner, at least they are eating something.

5. "So have you tried [insert a diet/medical treatment/parenting class/any other odd solution] to fix them?"

Nope, because my children don't need to be fixed. They are perfect that way that they are. Autism is a part of my children, if it was taken away, they would no longer be them. I love my children exactly the way that they are.
By the way we have had to go on a lactose free, super high iron content, FODMAP diet but not to "fix" autism. This was to try to alleviate some of L's health issues when he was younger. And no, the lactose free, super high iron content, FODMAP diet made no difference whatsoever to how he was neurologically! It did help with some of his health issues.

4. "But they look so normal!"

Oh I'm sorry, that's my fault. I didn't put them in their autistic clothes today! And they have their spare heads on, so you'd never tell.

To be perfectly honest, I really don't know what autism looks like and what normal looks like.

My little superheroes have mastered the art of putting on a mask so that they blend in at school. You should see them when they get home. To their safe place. And explode. Every. Single. Day.

Then you might say "ohhhh…"

3. "My son/daughter/children have meltdowns too - yesterday they had a meltdown over not getting a toy/lolly at the shops!"

This comment is a pet hate of mine.

No, your child didn't have a meltdown, they had a tantrum. There is a huge difference. 

Don't get me wrong, a tantrum can escalate quite quickly into a meltdown. But if your child is talking to you, making demands, can stop and start yelling and screaming at will, that is NOT a meltdown. That is a tantrum.

O and L can both throw tremendous tantrums like every other child their age. They also enter into meltdown mode on a semi-regular basis due to sensory overload, a build up of anxiety, our lorikeet being too noisy, a small change at school, not understanding social interactions ….

Would you like to experience a meltdown? You're more than welcome to visit our house at around 3.05pm every afternoon of the week. I can guarantee that one or both of my little superheroes will be in meltdown mode on any given day.

2. "Oh, but we're all a little autistic, aren't we?"

Nope, just no, and a big fat no at that! I often respond in my head with "and stupidity is a choice, some people seem to abuse the privilege!"

This is like saying "oh, you are a little bit pregnant!" You either are or you aren't! 

Please, please do not tell me that "we're all a little bit autistic." This comment will often get a response of "mmmm" and then a very quick change of subject! We do all have little quirks, we're not all "a little bit autistic."

And last but not least ….

1. "Oh, I'm sorry...."

Why are you sorry? There is nothing to be sorry for.

When you bump into someone in a shopping centre, you say sorry. When you spill coffee over important work documents, you say sorry. When you make a mistake, you say sorry.

When I'm told "oh, I'm sorry," it makes me feel like I should be sad that my children have been diagnosed with autism. It makes me feel as though there is something wrong with my children.

My children are not a mistake. There is nothing wrong with them. They are just a different way of being.

Autism has made me view the world in a different way.

Don't be sorry for me. Be sorry that you don't see the world from my children's point of view!

So what could you say instead?

"What is involved in gaining a diagnosis of autism?"

"I don't know much about autism, can you tell me a little more?"

"I'd love to know how autism affects your children!"

"What's the difference between a meltdown and a tantrum?"

"Is there anything that I can do to help?"

And please be supportive!