The day James got his label was the day I changed. I became a fierce force. My voice got louder and more passionate.
Believe it or not things don't get handed to you in the realm of autism.
As a parent you have to fight for everything.
You fight for timelines and your place on waiting lists.
You switch and change all therapists until you find the right team.
You fight with family and friends about their understanding of your child.
You fight with piles of paperwork.
You fight for inclusion, support and understanding.
You fight your own internal feelings.
And finally you fight with autism, you do the fight dance with that bad boy daily.
You see I am not going to sit back and watch the world not see the beauty of my son and all those that place on the rainbow.
My 'fight' is driven by the pure ignorance of mainstream minds and getting these kids the much needed interventions they require.
Last time I checked autism was 1 in 66.... so people need to start smashing down those box walls because with those stats they will be effected too somewhere along their journey.
Be brave. Fight the good fight.
WHATEVER it takes! ✌🏻👌🏻🙏🏻👊🏻💙
#asd #autism #autismadvocate #autismawareness #autismmum #asdmum #specialneeds #specialneedsparenting
Monday morning 10.30am, Sydney, Australia.
I am enjoying a nice warm coffee while I watch my amazing little soul build a magnificent train track on the loungeroom floor.
I have been watching him a while now.
Watching how he studies each piece in order to make an outstanding masterpiece. Every turn is calculated for the length of train he intends to build.
I watch his mind tick over, problem solving the turns and hills that won't work and fixing accordingly.
He is peaceful, without frustration.
Calm and soothed by his passion.
James has been very calm this morning.
He was also very calm yesterday.
His beautiful calm nature is back.
That just cements a few things for me that was contributing to his unregulated controlling behaviour.
Scarlett's birthday was excitement plus.
Scarlett then had a party where James had to share his space with many people who he had to process.
Then Ninnie and Poppy stayed in his space where he lost control of his routines.
Poppy hasn't been at this house now for two days due to being the renovation man up at the new house.
James has his space back.
He can quietly and calming work through his overload to soothe his system.
His behaviour reminds me of the importance of giving James the opportunity to regulate his system.
James is a sensory autistic.
He hears better than anyone. My bionic hearing babe can tell you a train is coming well before you have even heard it.
He sees the finer details of everything.
He smells 1000 times better than us.
His skin is sensitive to all that touches.
So his system becomes uncontrollably overloaded very fast.
If he isn't allowed the moments to regulate all of that down to a baseline then it builds and builds and builds.
He then becomes controlling and upset in order to try and control his sensory system.
People see it as being naughty.
But it is not.
It's his life.
It's our life.
And it's different from yours we know that.
We do the best we can to ensure he has the time he needs but sometimes life runs away with us. So this stint has again reminded me that James comes first.
In order for us all to live happy and healthy lives we need to put his needs first.
Think before you make judgement.
They say that 'you can teach anyone anything'......
Another thing that I live by. I truly believe it and James is proof of that.
Being on the autism spectrum James has things that don't come naturally to him. Things have to be taught.
When James was first diagnosed our OT at the time gave me a great talk about the linear brain and visual learning.
Her talk was so interesting I immediately started looking into visual learning. I soon realised that James was a visual learning.
You could tell James something till you are black and blue in the face and he still wouldn't get it. Flash him a image and he is all over it like donkey Kong.
One of the people I look up to and seek a lot of guidance from through her books and amazing understanding of autism is autistic Dr Temple Grandin. If you get a chance punch her name into google with the word 'quotes' and see how much knowledge you get just by reading 4 or 5 quotes. She does a brilliant job of telling you exactly how it is and exactly how it should be.
Here is a few of her quotes related to the teaching of autistics:
"It's never too late to expand the mind of someone on the autism spectrum"
"I'm a visual thinker, not a language based thinker. My brain is like google images"
"The world needs different kinds of minds to work together"
Dr Temple Grandin
So if we sit back and observe our children then we should quickly see how they work. .... right?
Absolutely. We are all different. Not one of us think or see the world the same so we are not going to learn the same.
Example: A teacher has a class of 4 students and they have been asked to tell her about the rock placed on top of a pillar in the centre of the room.
Student one: it's a rock sitting on top of a pillar in the centre of the classroom
Student two: goes into great verbal detail describing colour, shape and size.
Student three: walks over closely studying the rock. Picking on up to feel the texture. And describes what the rock feels like.
Student 4: says it's grey.
Now are any of the above answers wrong?
NO, absolutely not!
All the above answers are correct. It's the students perception and they have been asked to tell her about what they see.
BUT I can bet my last dollar that the child wishing to touch the rock would be penalised.
Why? Because the mainstream neurotypical world can't see a 'different' way.
A different way to learn.
A different perspective.
Something that concerns me as we look into schooling for our precious different mind, AKA James.
James likes to touch.
He likes to look at things from different angels.
He likes to learn.
And he will.
No one will squash his enthusiasm because his was is different.
Because my friends he will change the world and it will be his difference that makes that happen.
Tantrum vs Meltdown
All of you lovely people that follow us over @jameshealthjourney know we have been struggling with what I have been calling 'control' issues with James.
For a couple of weeks strong now James' behaviour has been less than desirable.
James also hasn't displayed this behaviour it a while so it's come out of left field and truly smacked us in the face.
This is however not 'uncommon', James' ASD ( autism spectrum disorder) often has us taking 5 steps forward and then 7 back.
We also see changes in behaviour when he is about to sprout forward in an area of development. We also have to remember he is a 4 year old boy and children whether they have labels are not like to push 'buttons'.
So, after much thinking and watching, I decided we needed to change our approach in some areas with James.
James is a smart kid, it appears he knows that by chucking a 'tantrum' he gets whatever he desires in that moment.
I am guilty of 'throwing in the towel' early and allowing his 'immediate wants' so I can create peace and calm within our family unit.... BUT by doing so I have created a tantrum chucking monster that can switch on a grunt, kick and a scream in a HOT minute.
ASD is draining.
Everyday life raising children, let alone with additional needs is extremely taxing on the family unit.
Some things you can control but a lot you can not as a special needs parent.
It's easy to get spun into a web of giving them what they want rather than need to give your soul a rest. It's tiresome. And it's not a win/win situation.
So I will use my tantrum example from yesterday...
We had travelled to the supermarket to collect some groceries.
As we entered the shops James eye balled the ride on car.
He said, 'ride on car'
I said, 'maybe after the shopping'.
We were then back at the boot of the car loading the groceries when James said, 'the car'!
I said, 'sorry babe I forgot, have to go home now'
James then did his usual grunt and moan and started jumping up and down in the trolley.
I stood my ground because I knew this was a tantrum and NOT a meltdown.
I put him in the car and he was over it quicker than you can say tantrum.
Now the normal Sharna would have loaded the groceries and then taken James back in side to ride the car. But it's important that we teach James that we don't always get what we want in life. Gentle pushes need to be active in order to change behaviour and this is a behaviour I need to change.
While the above is a clear example of a tantrum, unfortunately there is a little something called a MELTDOWN.
Meltdowns are VERY different and in these cases the child NEEDS whatever they NEED.
The older James gets the less meltdowns have become which is fantastic.
In James' case he has some pretty intense sensory meltdowns from being unregulated.
When James goes into meltdown he needs the immediate environment around him to change. It's NOT negotiable. It might mean completely removing him from a situation that is too overwhelming for his senses to process ( too many people, too loud, too bright) , giving him his iPad to zone into so he can shut down the other senses to recharge, giving him sensory input for calm like tight squeezes ( proprioceptive input) or taking him for a car ride ( vestibular input).
I know when James is about to go into the red zone.
The first sign is he clenches his fists, he then starts to withdraw looking around ( likely for an escape), he then becomes so overwhelmed he loses the ability to verbally communicate and then he just screams.
Imagine how absolutely terrifying it would be to lose the ability to control your system let alone not being able to control and change the environment around you.
It's intense. But like I said above, meltdowns are becoming less the older James gets. We work very hard in limiting his anxieties and giving him the tools to cope.
I don't really want to ever relive the days of the ten meltdowns a day. My soul is still burnt from those out of control moments. These were days when their was now label, a mummy and daddy so exhausted and not as well educated on all things ASD.
It was really important for me to get this down on paper because so many people,( a lot in our immediate circle) will roll their eyes at me when I use the word meltdown or say ' all kids have meltdowns' or ' James is just being naughty'.
NO all kids do not have meltdowns. They have tantrums. Meltdowns are a whole new ball game. James also isn't 'naughty' when in meltdown, he is fearful not naughty, he can't control what's happening. So watch out if you tell me he is naughty while he is in meltdown because I am a pretty fiercely protective ASD mumma.
It's super important to educate so that we can support the children and the parents who deal with this everyday. It's not easy on anyone.
Less judgement, more support and understanding are needed in 2017.
Unfortunately autism rates are on the rise so whether you are familiar with autism or not, educating yourself for our future is a must.
Happy Friday EVERYONE!
Well it's Friday here in OZ anyway... I know a lot of my followers are not on our soil, so happy Thursday to you all!
Today I wanted to talk about HAPPINESS.
My reason is pretty simple.. WE ALL DESERVE HAPPINESS.
Now we all have very different lives.
We all have different stresses and we all have dreams in our different realities.
But shouldn't we all be HAPPY?
We all deserve happiness.
When James got his autism label in early 2016 I did a lot of mourning. I mourned many things that I thought were part of the vision of HAPPY in life.
It wasn't until I had completely accepted the label that I started to wake up and realise that ones happiness lies within.
No body can tell you what will make you happy and no one is in control of your happiness.
I started not worrying about the others around us and their neurotypical children achieving things that James may struggle to achieve and we may never see happen.
And I started celebrating the happiness I have that radiates in my immediate circle.
I have a brilliant, kind and gentle soul who chose me as Mum.
He has brought so much joy and happiness to our lives since the day he was born.
He shows me daily possibilities.
He has shown me that life isn't about school, work, marriage, kids, grandkids.....
Life is so much more than that.
Life is a celebration and whatever makes you happy must be done.
All I wish for my children is that they stay in a bubble of happy. That they are happy for everyone else's successes and that they stay happy and true to themselves.
I say this quote often and I will say it again:
"Comparison is the thief of joy' ... Theodore Roosevelt
Its 7am here in the land of OZ and I felt compelled to head on over here for a little chatty catch up with you all.
Those of you that follow my feed over on Instagram will understand that Theo and myself have been having a difficult time with James.
James has been in a incredibly controlling space.
Controlling where we sit on the couch to whether you can have a shower or not.
James hasn't been like this for a long long time.
I would say his control is at an extreme level right about now and we are hitting the two week mark in this bubble.
I fully understand what causes James to have control issues. Change. Anxiety. Regulation. Yep I get it. BUT there is one other thing that sets us all off as beings and my mummy gut thinks that there is drama in his gut bacteria at present.
Most of you behind that screen just rolled your eyes.
Most of you don't believe in the gut/brain axis and that's fine, maybe you are scared of the unknown?!
Its something we heavily believe along with our team of specialists.
we are currently waiting for James FMA to return from bioscreen to check out bad bacteria, any parasites and any possible intestinal infections.
The day we started our journey to healing and sealing James gut was the day we started recovering our son.
so we won't be stopping anytime soon.
you she we as human beings are mainly bacteria... yep, wrap your head around that one!
Anyhoo we are an extremely busy family at the moment which isn't helping our cause with James.
School holidays are happening.
specialist appointments are thick and fast and the excitement of just having Scarlett's 3rd birthday.
we have some exciting news to tell you all soon and we can't wait to show you our next adventure... stay tuned!
Today I will leave you with a quote by Dr Brian Hooker:
'understand the beast you are dealing with'....
Do you ever just sit for a moment and think, 'who the hell am I'?
I just did.
As I sit here with my second cup of coffee by 11am on a Spring Saturday morning.
I wonder where that carefree, spontaneous spirit formally known to myself, has gone?
Today I am a 33 year old old with what feels like the weight of the world on my shoulders daily.
I am a wife.
I am a mother.
I am a additional needs mother
Today for example I am not allowed to stand, sit, toilet, shower, leave the room or even speak.
The control of my 4 year old autistic son is in full force today.
And with that comes sadness.
I am so far into the grind of additional needs parenting and just life in general that I don't know who I am.
I am like a mothering robot.
They say jump. I say how high.
I am a waitress to their demands.
My days are manic crazy.
Yesterday I joked that I was like a 'manic ping pong ball'.
I ponder whether I will find myself again.
I know the version of myself has evolved but will I matter again?
I am in a funk.
A funk that I know many mothers experience at different times.
This is my day.
Perhaps I should head out for some much need 'me' time.
Where I can dictate where I walk, how I walk and what pace I walk.
Don't get me wrong, additional needs parenting is magical.
But it's hard.
Since James' diagnosis in January 2016 I have gone through many stages and phases personally.
In my entire life I don't think I have ever gone through so many emotions or change.
I have certainly evolved.
I have experienced:
I have asked why?
I have had to let go of ideals and the family image I once dreamt.
You name it and I have felt it, lived it and it's all burnt deep into my soul.
One thing is for sure my love for my son has never ever altered, ever.
Recently I have gone through a massive shift...
I can't explain it.
Am I at a place of acceptance?
Finally, after 1.5 years... am I there?
I no longer feel the need to tell people my son has autism.
He is just James.
Does this mean for the last 1.5 years during my advocacy I have been lying to the world that I have accepted our fate???
Maybe... because NOW I feel so at ease.
It is what it is.
He is who he is.
Labels removed, he is James.
I no longer need to know why we are here... it's our destiny and we will live in peace, love and we will continue change the world! That I am sure.
We will fight for inclusion, support and understanding.
We will do it with positivity, grace and style.
We are all different and not less than and we are going to blow your minds with what brilliant minds CAN DO.
Today was day ONE back at therapy for term 3....
Every Thursday James has occupational therapy and speech therapy.
We have just finished a two week break from therapy.
Normally during the school holidays he still has some therapy but aside from home based therapy we decided to have a break this time around.
Now having no therapy could go either way.
Either we are unsettled from no structure or we are calm, cool and collected and enjoying some rest.
This time around we have all enjoyed a REST.
It's been nice. It's been nice not having to race around like crazy people and we have gone with the flow.
This school holidays the weather has been beautiful.
We have enjoyed lots of outside play at all the local parks.
Filling the vitamin D tanks, making the most of fresh air not to mention all the sensory input for James.
Someone recently said to me on one of my posts ( a post about how nice our break has been) how important balance is. Therapy yes but rest and play are also really important.
NOW if you had of said that to me a year ago I would say 'NO, autism doesn't sleep so why should we'.
I had in my mind that the more I did the better he would become.
When James was diagnosed and even before I implemented everything I could.
I was going to build the best team ever.
We threw ourselves into social interactions, external therapy, home therapies, limiting anxiety, supplements... EVERYTHING.
I used the internet to guide the things I did because I didn't yet have a diagnosis or anyone to guide me with what we should be doing.
We started therapy and back then I had to drive an hour each way to OT and and hour each way to speech.
I would constantly be encouraging him to play with new things.
Working on his speech through play.
Tactile exercises. Always playing with play doh, water or sand, back then James had issues with touching textures.
I threw us into everything because our awesome psychologist told us we could change the course so I researched and we dove straight into autism life.
I literally wouldn't rest.
Up until this last holidays James has always done therapy through the holidays.
BUT I was burnt out.
I needed a chance to not be ruled by a schedule.
James has a rigid schedule during the term and multiple specialist appointments slotted all over the place too, add that to everyday life and Scars needs and I was BEAT.
So today, day ONE of therapy AND he smashed it!!!!
James OT was blown away with his interaction and expression.
His speech therapist was happy with his work TOO.
We have had an amazing therapy day.
It's taken me a year and 6 months of diagnosis to realise REST and PLAY are just as important.
So thank you to the person who said that to me, I really appreciate it, you planted that seed and it grew in my mind.
Just now James is sitting in front of me building a train track and he screams out, ' I am so proud of you, this track looks amazing'....
And there you have it.... my positive parenting is paying off!
So Term 3 is about balance... work, rest and play all encased in a big bussed of LOVE, positivity and RESPECT.
How can we not win!
So recently I have gone through a period of low energy.
An exhausted autism parent and an exhausted autism advocate.
Exhausted because every time I mentioned supplements or the therapies we do for James or my positivity surrounding my son and his autism I was met with hate. So much hate.
Rewind back to when James was diagnosed in February 2016.
I searched google.
I searched Facebook.
I searched Instagram.
I searched my local area.
I searched the local autism community.
I needed help, support and guidance.
Majority of the time I was met with negativity.
Rigidity from parents, carers, therapists, and other supports and aids.
I was horrified.
People would tell me things like, 'it doesn't get better it gets worse'.
I would ask and reference my newly found findings on gut health. I wanted to know about other therapies available ... I wish I had of taken photos of their faces! I can't even remember the doubtful words that would spring from their mouths but the looks upon their faces have never left my mind.
This was the start of my journey as an autism parent.
I was astonished at the lack of respect for the child at hand.
Majority of the people I encountered were happy with the 'label'. The label had been smacked on that child's forehead and they were just going to except what the textbook says. For them nothing was going to get better. Nothing in their minds was going to work for their child, yet they weren't prepared to try.
I spent a few weeks mourning, sad and felt unsupported.
Then I decided I was going to prove to the world how worthy my son is. I wanted to show the world what autistics can do with the right love, support, therapies and guidance.
I was going to do 'whatever it takes' for James and all the other beautiful minds that need a chance.
So I started writing. Documenting everything we were doing.
When I started documenting our journey I was met with more hate and disapproval. I was the new kid on the block.
I was abused through my social media networks by autism mums.
The more James changed and developed the more hate I got. The more positivity I showed the more I got things like, 'he's not autistic', 'your doing all this for attention', 'your a fraud' blah blah blah blah. I even had a autism parent going around the loops having people block me because they thought I wasn't genuine.
It hurt. But I was determined to rise above.
So my non- verbal son became verbal.
My son who had no expressive or receptive communication started communicating.
The child that hid away from other children started interacting.
The child that threw toys because he had no idea how to play with them started functional play.
This didn't just happen on its own.
My husband and I have dedicated our time, money and most importantly our love to flourishing our child.
We do therapy.
We encourage social interaction.
We limit anxiety.
We use supplements.
We have sensory diets in place.
We do it all.
We don't stop.
So I have been advocating for a while now.
I've seen a lot of negativity now, but nothing like the last few weeks.
I have seen exclusion at its finest and seen other autism mums dismiss and disrespect other autism parents by shaming the things they are doing for their children.
This time It got me down but it also reminded me of why I do this.....
I do this to show the world the beauty of autism.
I want to give hope, spread love and offer support.
We must remember not every child is the same.
All autistics are different just like in the neurotypical world.
Every single person is different.
What works for one, won't work for the other.
Just because Jo blow down the road does ABA and nothing else doesn't mean that's right for your child.
Find what fits your child. Don't stop till you find the right therapy, the right therapist the right diet .... the right everything.
You know your child best.
You can never fail by trying.