What does brave look like?

 

What does brave look like? This.

Two little superheroes who are putting one foot in front of the other and getting back to their usual routines.

These two little superheroes have had a couple of huge weeks where they have experienced every emotion from extreme sadness to extreme happiness and every emotion in between.

The first week that Daddy Superhero was in hospital having his life saving (literally) heart surgery, being in ICU, then being transferred onto the cardiac ward was like a very bad dream and none of us really knew what we were feeling. It was a very surreal feeling.

Last week was as difficult as the first week, the reality of just how severe and life threatening the diagnosis was, hit home in a huge way. As did knowing that if Daddy Superhero didn't have surgery, our lives could be very different.

Last week was a "school can't" week. Neither little superheroes or myself wanted to face the world. We didn't want to people, other than going to visit our superhero in hospital. They physically couldn't go to school last week, their anxiety was too high to function outside of our home.

This week is a "school try" week. Both little superheroes are still coming to terms with what has happened over the past two weeks. They're both still talking through their emotions and thoughts. And they're both trying to go back to school - both schools have been just amazing in providing support to them and us.

It may be some time before we get back to our new normal, but we won't give up.

#autismheroes #littlesuperheroes #cardiacsurvivor

Why we need space!

Quite often after both little superheroes have had big days, either at school or if we have gone on a family outing, they will need space and time to decompress. The sensory, emotional and social overload can, and often does, take a huge amount of physical, emotional and mental effort. And the combined overload takes a toll mentally, physically and emotionally and can leave an individual feeling completely exhausted.

Having Henry to assist L is an immense help but both little superheroes still need to decompress in their own time and in their own spaces.

Every individual has their own coping mechanisms, and the little superheroes are no different.

Since having Henry placed with us, L will almost always go straight to Henry and give Henry the commands for laps and overs (deep pressure therapy,) or just lay on the floor getting Henry cuddles.

We give them time to chill out - L has a huge cardboard box that he and Henry squeeze into, either to play on a device or just to lay and have cuddles. O will usually lay in her room listening to music. Depending on the overload for the day, really depends on how much time they need to chill and just be.

Once the little superheroes have self regulated, they will often come and seek us out for cuddles. Going to them too soon, can make their exhaustion worse.

Often parents, and/or carers, will ask their children or loved ones, well meaning and well intentional questions about their day. Questions such as "how was your day?" or "what did you do today?" or "did you have a good day?" These questions may make individuals who are already feeling overwhelmed, feel even more bombarded and/or bewildered as questions such as these are very broad.

How was your day? It is still day, so I don't know yet.

What did you do today? You know what I did today, I went to school/work/whatever activity was planned.

Did you have a good day? Can you define good? I didn't get into trouble at school if that is what you mean so that is good, but I felt overwhelmed by my anxiety so that wasn't good.

Unless the little superheroes begin talking with us about what has happened to cause them to feel overwhelmed, we leave the questions until dinner time, This way, part of their daily routine is to talk about the good things that happened.

Obviously if either of the little superheroes want to talk before dinner, we talk. Letting them take the lead, when they are feeling less overwhelmed, usually means that they will both be open about what is causing them distress.

At dinner, we focus on the good things. Talking about the day in a positive manner makes the world of a difference. We will usually get everyone, including us, to say one good thing that happened at school/work that day. And when we do ask questions about the little superheroes day, we ask focused questions based on what we know that they have been doing for the day.

And most importantly, if either of the little superheroes become overwhelmed, we provide them with support. If an individual becomes overwhelmed from sensory or emotional or social, and so on, inputs, they just need and want to be supported.

Decompression

 

This is what decompression after school looks like ....

This is a child who has no more energy that he burst into tears as soon as the car door closed.

A child who through his tears, sobbed "I need Henry cuddle. School hard 'day."

A child who, is now ordinarily verbal, reverts to using single word replies and shortened sentences.

A child who has pushed his anxiety so far down all day so that no one could tell, and can no longer keep it hidden.

A child who now feels safe, because he is surrounded by unconditional love and support, to show how he is truly feeling.

Autism masking is very real and so very damaging and draining - mentally, physically and emotionally.

Putting on a mask so that you blend in with the crowd, so that your differences aren't noticed by others. Putting on a mask so that you're not labelled as a naughty child. Putting on a mask day after day, makes you question your every being, makes you question your Autistic self.

Today was a hard day ❤️

Henry is working his magic ❤️

#teamhenry #smartpups #smartpuphenry #littlesuperheroes #autismheroes #assistancedogsaustralia #autismassistancedogs

Autism Awareness and Acceptance 2022

It's April, which means it is Autism Awareness Month.

But you know what, we don't need more awareness. Acceptance is what all Autistic individuals want. We want to be accepted for who we are.

April the 2nd is World Autism Day.

Please be accepting of those individuals who are different, regardless of whether you know that they are Autistic or not.

We have been on this journey for almost 10 years, as we knew that L was different from the moment he arrived Earth side. Officially, our families Autism journey began in 2016.

Your view of the world changes when let yourself view the world through another's perspective. Both O and L view the world in their own ways. And we wouldn't have our family any other way!

Throughout the month of April, I am going to share ways in which you can show a little more Autism Acceptance. But acceptance shouldn't just be in April, it should be year round.

[Raising Autism Awareness 101

Autism has no look. Every individual is unique.]

So how can you show more Autism Acceptance?

If an individual tells you that they are Autistic, don't question their diagnosis.

Autism has no look. Too many times, and far too frequently we hear "they just don't look Autistic."

By stating this, or something similar, you are not helping. You are in fact questioning their every being.

It can take families time to actually get an Autism diagnosis, and when you question the validity of the diagnosis, it can be a huge kick in the guts to them.

Don't question, just accept and open your eyes as to how they view the world.

 

[Raising Autism Awareness 101

Autism is for life. Autism does not magically disappear 

when an individual turns 18.]

Autism is for life. Autism doesn't disappear at the age of 18, but unfortunately therapy services for Autistic adults can be more difficult to find and access. An Autistic individual won't get better, life at times doesn't become easier for the individual.

Henry goes to .... Sea World

We had a HUGE day in the last week of 2021, an outing to the theme parks on the Gold Coast.

Both little superheroes were given annual passes to the Roadshow Theme Parks for Christmas. They both love Movie World so we hit Sea World in the morning and Movie World after lunch. Neither of the little superheroes had been to Sea World so it has been high on their to-visit list since we moved back to Queensland.

And again, with Henry, we had an amazing day out. There is no way that we could ever have done two theme parks in one day prior to Henry being placed with us. He definitely helped both little superheroes to self regulate throughout the day.

In terms of Assistance Dogs. Sea World do not require any prior notice that a guest will be bringing their Assistance Dog with them. The only requirement that they have is that the dogs vaccination schedule is up to date, which Henry's is.

The Sea World staff were absolutely brilliant in accommodating Henry and us. Soon after arriving, a staff member paused where I was waiting with Henry (toilet stop for the other members of our family,) and said that the dolphin show was about to start. She went on to tell me where we could wait to gain early access to the show and that she'd let the staff know that we were coming. Wow! We thought that it was absolutely wonderful that the staff member took time out of her day to pass this information on us. 

L wanted to watch the dolphin show, so off he and I went. When we arrived at the gate to wait, two other staff members struck up a conversation with us, and when they found out that Henry was an Autism Assistance dog, they told us where the best area in Sea World was for a quiet break and that we could ask any if the food vendors for water for Henry. 

One of the staff members told me that she also was Autistic, she then struck up a conversation with L about his favourite anime characters (he was wearing an anime shirt,) and L responded. On our way out of the Dolphin show, she used key word signing to say goodbye and thank you.

The initial staff member who let me know about the Dolphin show, met us in the dolphin cove area and ensured that we had shaded seating for ourselves and Henry. During the show, this staff member was brilliant in not only keeping us informed, but also moving other families with very young children from sunny seating to shaded seating. It's all the little things that make a day out just that little much better.

While we take a water bottle for Henry any time we go out, we did end up asking for water from one of the food vendors for Henry, which they gave us without any hesitation.

I've since found out from Sea World that all guests who have a disability are welcome to attend the Guest Services counter upon arrival to get a wrist band that signals to all ride operators within the park that the guest may require additional support. The wrist band also allows early access onto the various rides, and if the guest isn't able to access a particular ride at the time they would like to, they'll be asked to return a specific time to be given early access.

If we hadn't already told the little superheroes that we were going to visit Movie World after Sea World, we would have stayed a lot longer!

So thank you Sea World, we had an awesome day out and will definitely be back soon.

Adios 2021

As 2021 is drawing to an end, finally, I'm looking back on everything that both little superheroes have achieved this year. 

O started year 7 and nailed the first year at high school. O's anxiety has tried to get the better of O, but each time O has put one foot in front of the other and kept moving forward. 

L took huge leaps and bounds forward at school. Both little superheroes ended the school year with awards and amazing academic results. 

Henry was placed with us in May and what a positive impact he has had, not only for L but also for us as a family. Our family outings are much easier for both little superheroes with Henry. School drop off's for L have become much easier and less stressful. 

Both little superheroes began equine therapy and PT sessions with Holt Bolt. Both have benefited from these therapies.

So 2022, we're ready. We can't wait to see what both little superheroes achieve over the next twelve months.

Big Things Adventure!

Who loves family adventures??? We certainly do, and they are the best way to have quality family time away from electronic devices! We've started a new weekend tradition by going on adventures as a family and rather than choosing a destination, we're packing a picnic (or pic-a-nic basket as L has taken to saying,) choosing a direction and heading off until we find somewhere interesting. 

This began a few weekends ago when on a spur of the moment, we headed off for a family day out. It was such a great day, that when we arrived home that afternoon, we sat down and wrote out a bucket list of places that we haven't yet been too, places that we'd like to go back to and adventures that we'd like to try. We've been back in Queensland for four years and there are so many places in our area that we haven't yet been to.

While researching potential adventures in our local area, I realised that there is an entire list of big things - think over sized man made structures that are local attractions for tourists. So on our last adventure, the little superheroes kept their eyes peeled for these structures and to their delight, we found two.

The Big Dinosaurs.

The first that we found were two oversized, very old looking dinosaurs. The dinosaurs have clearly seen better days and need a new coat of paint, but they both fitted the brief according to both little superheroes.

The dinosaurs were located at the Sunshine Castle in Bli Bli. The Castle is a family owned tourist attraction and while visitors aren't able to go into all areas of the Castle, it was worth the visit. The dinosaurs are located on the front lawn and are free to look at but there is an entrance fee into the Castle.

Within the Castle grounds there is an assortment of castle and medieval type bits and pieces. There is also a HUGE doll collection and a toy shop located conveniently at the exit of the Castle!

After having a good wander around the castle, we climbed back into the car and drove towards Noosa where we stumbled (following the directions from Google!) onto another big thing.

The Big Pelican!

Now The Big Pelican definitely fits the brief of big things. It is roughly 5 metres high and sits on an old boat trailer. It was originally constructed in the Noosa council workshops in circa 1977 for Rotoract as a float for the Festival of the Waters parade. The Pelican was, at that time, the embelm for the council. It was originally constructed of paper mache over a chicken wire frame but has since been renovated several times of fibreglass so that it will withstand the weather conditions.

The Big Pelican is affectionately known as Pelican Pete or Pericival, and is now owned by Pelican Boat Hire and is located along the foreshore in Noosaville out the front of their shop.

There are some lovely parks in the surrounding area, it's definitely a place that we will go back to to do some more exploring.

These were the only two big things that we found on this outing but stay tuned because there are quite a few still on our to visit list.

The Beach. A fancy poem by L.

Recently at school, L's class were writing poems about the natural environment and what they could see, hear and feel (literally and metaphorically) when they went on excursions to two different natural environments near their school.

Unfortunately for L, he was unwell on the days of both excursions, so one afternoon L and I went to one of our favourite beaches and L told me some of his observations of the beach. The deal was that if L told me his observations, I would write them down so that he could then take them to school to compose his poem.

In the last twelve months, his descriptive vocabulary has increased two fold, so I wasn't overly surprised at the descriptive language that he used.

And we thought that his original draft was good enough to post here! So for your reading pleasure, here is The Beach by L. And L asked me to tell you all that his writing is a fancy poem as it doesn't rhyme.

The Beach.

I see boats bobbing up and down from the waves.

I see the water moving.

I can see the mountains in the distance looking like tall towers.

I see birds swooping to catch their food.

I see fish jumping out of the ocean to get away from the birds.

I can hear the waves crashing on the rocks like thunder.

I can hear birds singing their welcome songs.

I can hear people talking and noisy cars driving by.

I can hear the wind blowing the leaves on the trees.

I can feel the soft sand like little foam beads between my toes.

I can feel the cold ocean water on my feet.

I feel the cool breeze tickling on my skin.

I feel calm and excited by the waves crashing on the beach.

I feel happy and calm at the beach.

Teach your children to be kind

 

Teach your children to be kind.

Teach them that differences are what make our world, our communities, society a better place.

Teach them that if they don't have anything nice to say, don't say anything.

Teach them that words hurt. Words stick like cement and they are incredibly hard to remove.

Teach them that just because they are NOT lucky enough to be Autistic, or ADHD, this doesn't make them better, smarter, faster or more intelligent than those who are Autistic or ADHD.

Educate them that without these amazing ADHD and Autistic minds, those Pokemon that they love, may never have been thought up. Those Dogman books that they love reading, may never have been written. That rap artist they listen to, may never have penned those songs. That gymnast who they idolise - ADHD. The list is endless of amazing, talented neurodiverse minds. All of which have made a positive impact on our world.

Why?

Because tonight, this little superhero is asking why him? Why am I Autistic? Why can't I be the same as everyone else? Why do I struggle with things that other kids don't struggle with?

Because if you were the same as everyone else, you wouldn't be you. Because the world needs minds like yours that think way outside of the box on the precipice. Because you were born to be you.

This journey is hard. We take 5 steps forward and then about fifty back. Tomorrow we'll start the journey forward again because we don't give up without a fight.

Little Stars

This photo of L came up in my memories last month. It is of O waiting patiently at the gate at his Tara School, aka Little Stars. Little Stars is one of the early intervention therapy centres run by the Western Australian Autism Association. After we received L's Autism diagnosis, we applied for L to attend the centre.

Going to Little Stars really was one of the best decisions that we made for L. He was accepted for who he was, he made so many friends, he loved all of his therapists and therapy assistants, especially his Tara. L further developed his strengths and learnt new skills.

L attended the centre once a week for three hours and he participated in his speech and  occupational therapy while at the centre. And L loved going to his Tara's School. His very first therapy assistant was a lovely lady by the name of Thara, but all of the children and staff called her Tara. From the very first session with Tara, the centre became known by L as Tara's School. L and Tara had a mutual love of Batman!!

Most importantly we learnt how to view the world from L's eyes and how to support him in the way that he needed. We learnt how to help him navigate the world around him.

Little Stars was one of the first, and big, steps in L's Autism journey that L needed.

Funnily enough it was also at Tara's School that we accidentally met one of L's former educators from his previous child care centre. This educator was so very surprised to spot L at the centre, they were there to observe another child who had recently been diagnosed with Autism. This educator dismissed our concerns about L, by saying "oh he's just a naughty boy."

Mmm, actually no he wasn't. He is Autistic! This educator looked very taken back when I informed her why L was at the centre.

It is photos like the above, that remind me just how far both of my little superheroes have come and all that they have achieved so far on their Autism journey.

Welcome to Jumamji, version 2.8

So here we go again.

We've been reasonably fortunate since our initial lockdown in 2020, we've had a few three day lockdowns but that's been it.

Until six days ago.

4pm Saturday the 31st of July, the Delta strain hit Queensland and we were thrown into an initial three day lockdown which was then extended to a week. As I write this, we are six days into the lockdown and hoping that it will end this coming Sunday.

Then online schooling began. At least this time we were prepared for it - teachers began sending information out on how to access online schooling on Sunday afternoon - they were prepared for it this time. O's usual schooling learning is all online so for O, not much changed other then having a few zoom class session during the week. For L, however, everything went online.

Everyone's online/home learning during a pandemic is going to look different. For some families, parents or carers may be considered essential workers and as such they are not able to be at home. Other families may not have reliable access to the internet or an electronic device to access the online resources. Some parents or carers may not feel confident in assisting their children with online learning.

We like to think of of home learning as unschooling. We've been doing the school work online, when I've downloaded the correct work that is! But we've also been doing other learning that isn't necessarily school work but it does have elements of what both little superheroes are learning at school. L likes to call our home learning as unschooling because he's learning at home and not at school, so therefore learning at home is the opposite of schooling, hence unschooling!!

Cooking is a great activity for children to do at any time, not just during a pandemic! L's current maths unit at school is all about measurements - so he was able to put into practice what he had been learning prior to the lockdown. Cooking also incorporates a little bit of science - what is the heat source for the cooking method and what powers the heat source. This cooking session for both little superheroes, ticked off two of L's learning outcomes for the day and it acted as another reading experience for L. And they created a yummy treat for the day.

Exercise is important at any time. During lockdown, it is even more so. We are fortunate in that one of the reasons that we can leave the house is for exercise, as long as it is within a ten kilometre radius of our usual place of residence. During our extended lockdown last year, we started every day with a daily walk. We did attempt on a few occasions to start school work before we went for a walk and the school work didn't end well. A short break from the house was great to clear the mind, get a little fresh air and acted as a movement break for both little superheroes. So this lockdown we've been doing this routine again. A walk around our block also means that Henry is getting some exercise.

Exercise doesn't necessarily need to be a walk. Just due to both little superheroes sensory needs, we have yoga choice and exercise choice balls that we found in our local Kmart - these are also great for movement or exercise breaks. As long as you have an area within your house or your backyard, these can be done anywhere. There are also plenty of free online resources, type in "free online yoga poses for children" into your preferred online search engine, and see what pops up! 

Last year, both little superheroes had our trampoline to use for movement breaks but unfortunately, a few months ago it finally gave way after constant daily (and some night time) use from the little superheroes for the last few years. L's replacement sensory equipment arrived in a timely manner a few days before this current lockdown began. And it has been used on a very regular basis over the last few days. Although we have had to remind L that we are in lockdown at the moment, so we'd appreciate not having any hospital trips. L is our little dare devil after all.

One of the walks that we do goes over a small creek. Both little superheroes love sitting by this creek, looking for aquatic life, testing the depth and just chilling out there. In one of O's subjects at school, they are focusing on aquatic ecosystems and the impact that humans can have on these ecosystems. One on of the walks, we spent some time talking about how healthy the creeks ecosystem was based on what we could see. O spotted some rubbish in the water and asked if we could come back with a rubbish bag to clean the creek, so we did.

During our extended lockdown last year, I downloaded lots, and I mean lots, of free STEM activities - again type "free STEM activities for children" into your preferred online search engine! Both little superheroes love science and the majority of the STEM activities that I found use items that you would have laying around your house. On the first day of this lockdown, there wasn't a lot of work for L to do online so part of his unschooling for the day was a STEM stick raft - he had to design, make and test a stick raft. L decided that the raft needed to be tested in our local creek and that Batman was going to ride on the raft. To L's delight, his raft floated (we did have a long length of twine tied to both the raft and Batman in the unfortunate scenario that the raft didn't float! Batman ending up at the bottom of the creek would not have gone well!) and he's currently planning how he can improve his raft design. While L was planning and building his raft, we incorporated some of his current maths lessons on measurements into the activity.

It's important during any lockdown, no matter how short or long the lockdown is for, that we all look after our mental health. Sometimes we just need to take a break from school work, or own work, and have some chill time. Chill time could look like going for a walk, having a nap, sitting on the couch and watching television. If we look after our own mental health, we'll be in a better place to support our loved ones.

We were extremely fortunate in that this lockdown only lasted a week and a half, but I am certain that at some stage in the future, we will be put back into lockdown. If you are currents in lockdown, please look after yourselves.

Who is the family behind Raising My Little Superheroes?

It's been a while since we've done this and we've just hit 5000 likers on one of our social media sites! So who is the family behind Raising My Little Superheroes?

My name is Jenni and I'm a mum of two gorgeous little superheroes. Well, we think they're gorgeous, but then again we are biased. O is now 10 and L is now 7. My husband is Scott. But at times I do wonder if I have two or three children!

O is thriving at school and loving life in general. Over the last three years, she has become more and more articulate in describing how she feels, thinks and views the world. O's intense interest is still anything and everything to do with space and she has added science to her interests as well. This year, she was accepted into the Australian Girls Choir and she absolutely loves it. O is very creative and loves to express herself through song, so the Australian Girls Choir is perfect for her.

L is also thriving at school, he's still not a fan of going to school but he is thriving. In 18 months L has worked his way from below average academically to on average with his peers. We've always said to both O and L, that their grades at school really do not worry us. As long as they both put as much effort as they can into school, that is all that matters. And boy, have both O and L put in a lot of effort at school. L is still into all things superheroes, and probably always will be. 

It has been over three years since we started on this Autism journey. But our journey really started when L was born. From the moment that L arrived on earth side, we knew that he was a different baby. He was completely different from O and also from other babies that we met at our local playgroup. Scott and I knew that he was different, but didn't exactly know what the difference was. We did question many professionals in the medical and education field as to whether he could be Autistic and was told that no, "he's just a naughty boy, he's being a typical boy, it was our parenting style, he's just slow because he has an older sister who does everything for him ...." and many other reasons. None of which made us as parents feel good about ourselves.

L was non verbal until the age of three. At three, he spoke a grand total of roughly 20 words. At three years of age, I took him back to our GP and was in tears because L was having a meltdown and I couldn't help him. L was having a meltdown over not being allowed to play on the busy road outside the surgery. Our GP agreed that L was different than other children his age and immediately referred us to our pediatrician. Much to our relief our pediatrician agreed that L was different and gave a provisional ASD diagnosis. We received his official diagnosis of a DSM V level 2 ASD in 2016, L was three and a half.

Thus began our Autism journey.

While going through L's ASD assessment, Scott recognized a lot of L's traits in himself so off he went to be assessed and low and behold, Scott was given an ADHD diagnosis in 2017.

O at this stage was 7. As a baby, O reached all her developmental milestones early. We knew that she was academically gifted but we didn't suspect that she was on the spectrum. She was, and still is, a very anxious child. After L's diagnosis, we began to see some ASD traits in O and each time we questioned as to whether O was also on the spectrum, we were told that she couldn't possibly be because she's very social and makes eye contact.

We were however referred to a child psychologist for her anxiety because we were struggling to help her manage her anxiety. During her second session, her psychologist said "you need to get O assessed, she's definitely on the spectrum."

So off we went on the assessment path again. Low and behold, six months later O was given a DSM V level 2 ASD diagnosis! We were expecting the diagnosis as all the way through her assessment, the speech therapist and psychologist told us that yes O is on the spectrum. Her DSM V level floored us as we'd missed all her traits. O was and still is a master at masking her ASD traits.

During O's ASD assessment I realized that I could have been answering the questions about myself. O is my mini-me. I broached the subject several times with the professionals who were doing her assessment and was told "I can spot an Aspie a mile away!"

As well as ASD, both O and L have sensory processing difficulties, anxiety (O was recently diagnosed with Generalised Anxiety Disorder,) and a myriad of other health conditions.

I haven't pursued a diagnosis for myself because other than getting a piece of paper that would explain my childhood and how I felt as an outsider up until quite recently, it really wouldn't benefit me. I'd prefer to put my efforts into assisting my little superheroes on their journey. Also three out of four in our family have a diagnosis!!

I started my blog on the 28th of August 2016 (yep, we're also celebrating our third blogiversary!) as a means of clearing my thoughts, writing for me is my therapy, but also to spread a little Autism awareness and acceptance. We struggled to find support when we first began on this journey and I wanted to let other families and individuals know that support is out there. 

I don't want to see children, or adults, being left behind because they're different or quirky or don't fit into the mould that they're expected to fit into.

If you've read this far, thank you for joining us on our journey. It can be crazy, fun filled, coffee injected ride, but it's our life and I wouldn't change anything for the world.