My truth: I find it incredible that in 2018 we don't 'know' the cause of autism.
The number of children diagnosed on the autism spectrum is on the rise.
I recently saw figures of 1 in 36 boys reside on the autism spectrum that's very different to the 1 in 10,000 that my GP was discussing with me just recently ( yes she said that). That's the figure that she remembers when she was a teenager! Please don't ask me to show you statistic proof. You know where the internet is and this is 2018, all research is at your fingertips.
With that aside It is autism awareness month!
It astounds me that at this time every year I get crap from people left right and centre.
Like I cop the autism police all year round but it just gets all hardcore at this time of year.
I get the autism parents that think we shouldn't celebrate autism at all because their children weren't born this way.
I get the parents who boycott April because it should be celebrated every month, they aren't into the April hype.
I get the autism parents that don't think I am doing enough, sharing enough or wearing enough blue.
I get the parents that think I put too much of a positive spin on autism and should be showing the world my sons worst moments.
I get parents that HATE and spit all over our biomedical journey because they think I am trying to change and normalise James.
The truth is I do things MY WAY.
I have my beliefs on autism and how my son got this way. I choose to do 'whatever it takes' for James to be a success in this world. We take a whole holistic approach.
I choose not to sit here and play a blame game. I want to live life!
A positive, happy life.
I can't make everyone happy.
I advocate autism because it is part of my son and I love his whole entire being! I want to show the world his abilities! I believe in acceptance, understanding and inclusion for all.
If you don't like how I advocate my son then move along.
It's autism awareness month and I will continue to blast your screens with my positivity and CAN DO approach.
I celebrate my son every single day. 💙
Sharna xx @jameshealthjourney
Autism awareness day 1.
The number one thing I think everybody needs is a supportive and understanding tribe.
Be it family, friends or strangers.
You need people around you that can support you when you are down.
Meet James' pappou.
James' favourite person in the world.
James was a horrendous baby. Always sick, always in hospital.
Whenever I needed to go to a specialist, a hospital or needed a 5 minute breather, this man right here was there.
At 12.30am rocking a screaming James in my arms at the hospital, Pappou was there. I also blame Pappou for James' train obsession ( in a good way).
When I was at my lowest as a mother, so sleep deprived, so exhausted. I would ring Pappou and ask if he could have James for half an hour.
He would say, 'sure, bring the pram'... James and pappou would head to the train station and watch the trains.
When you are in the thick of a diagnosis and your in the thick of your exhaustion and stress you will think that no one is there, no one is doing enough. But you soon learn all the important people were there, you were just so caught up in your own emotions that you couldn't see. 💙
Autism awareness DAY 2.
Today I want to take a moment to talk about balance.
We lead a pretty chaotic life, those that have been following us for a while understand the chaos I speak.
We are in the thick of what is called 'early intervention' at the moment.
Early intervention is basically throwing everything at autism whilst the child is between the ages of 3 and 7.
When we started early intervention 2.5 years ago we became burnt out very, very quickly. [That's what made us make the decision to go away on family holiday's twice a year].
We needed to pull ourselves away from the daily grind and the added grind of 'early intervention' pressures.
While we are on holidays we 'just be'. We turn our phones off, yep that's right no social media is included in that.
We always comeback from holidays with clear minds and recharged to take on the next chunk of early intervention.
This is not the only balance we have.
You know sometimes we can't wait for a holiday and there are days our mental health is suffering.
When that happens I cancel appointments where I need for my/our mental clarity.
I pull James from his schedule as soon as I see a blip in his focus.
I can't stress enough the importance of balance.
We are human.
We are not machine.
Sometimes we need to stop, earth and recalibrate.
You and your child are allowed to do that.
I hate that saying 'you can't drink from an empty cup'... but you know what that's probably the best way to describe it.
Balance doesn't need to be a family holiday every 6 months.
Balance can be cancelling an appointment and heading to the beach instead.
Saying no to a family function to take a long hot bath.
Balance is important for the sanity of all involved.
At the start of our journey I thought I was a machine. I quickly learnt that I am not.
Breathe. Earth and balance my friends.
Always here, whenever you need xx
Autism awareness Day 3
Feeling the feels
I knew James was going to end up with the autism label well before the stamp was placed on the paperwork.
James was developing normally ( except for FPIES) all the way up to 12 months of age. At about 16 months of age it's like someone turned off the light switch.
He lost eye contact, he lost any speech he had, he regressed into a world of his own.
He would scream constantly.
Stand on his head.
He no longer turned when his name was called.
The light was gone.
I fought with medical professionals all the way up to James being 2.5 years. Everyone told me it was 'normal'.
I wasn't happy with that so I switched paediatricians.
Our new paed confirmed what my mummy heart told me all along.
He penciled down a diagnosis of autism spectrum disorder and referred us to a paediatric psychologist for a formal diagnosis.
Fast forward a few months to February 2016, I heard the words Autism Spectrum Disorder exit the mouth of James' psychologist.
I thought I was ready for what I was about to hear.
I was not.
I gulped my fear and listened to her wise advice.
I told her I was ready to do 'whatever it takes' for James.
I would be lying if I told you I held it together.
I didn't hold myself together.
I cried and I cried.
I didn't eat.
I hardly slept.
And then at 3 am one morning in a exhausted haze I decided that I was no longer going to live like this. I had given myself 3 weeks to feel the feels and now it was time to pull myself together.
I fell asleep and the next day I was determined to give this my all.
James was only different and our lives were just to be a different normal.
Look at us now!
2.5 years down the track and al I can say is WOW. Hard work pays off!!
And it is hard work, I won't lie to you about that. There's been lots of sacrifices.
What I wanted to tell you today is, allow yourself to grieve, feel and be. But don't stay there. You are the only one that can spear head change. Push through the fear, dig down into your powerful depths and give everything you got to early intervention.
Again ... I am here if you need xxx
Sharna xx @jameshealthjourney
Autism Awareness Day 4:
The advice I received when James was diagnosed.....
This one is a short one but I think it will be better that way.
Following are the things I heard from James' team after the diagnosis: