Long time no blog chat.
I am currently writing this from the sky.
We have just spent 7 days back in my hometown of Tasmania.
This was a spontaneous trip.
I just thought randomly one night, maybe I should take the kids away before the chaos of 2018 really starts for our family.
James isn't due to start therapies and school until the end of January.
So here I am, on a plane and not much else to do but write.
We have had an amazing time down in Tassie.
My mum has cooked all meals.
My dad has done all our washing.
I have really just enjoyed 'being'.
It's been nice.
I left this place a long time ago. I was 16 in fact.
I was awarded a dance scholarship to train full time over in Adelaide. I took the scholarship and ran.
Although Tasmania is the place I grew up and holds a special place in my heart I have never felt like I belonged here.
Tasmania is beautiful but I have always felt this zest for more.
I read this travel section in a magazine when I was young and it was all about Coffee shops in Darling Harbour, Sydney.
I knew then that I wanted to live in or around Sydney.
So now I live in NSW and it's home.
It feels like home.
Completely like home.
I do enjoy coming back for some down time.
So now that my batteries are full, we are now ready to smash out another year of early intervention for James.
James' schedule for 2018 looks a little like this:
Preschool 3 days a week.
Weekly speech therapy.
Weekly rugby training.
Fortnightly feeding therapy.
And I am trying to T up a personal trainer for some ball skills and sprints.
By the end of last year I was wanting to take some load off of our 2018 schedule. I was exhausted and beat.
But in true Sharna spirit and the last year before James goes to primary school I decided to add in more.
We really only have one more year of full on early intervention before we will be juggling all therapies after school hours.
I am ready.
I am going to get tired there is no doubt about that. But I am ready to give it my all.
In order to protect my energy and make sure I am not expelling in the wrong places I have come into 2018 with a different mindset.
A no farks given to the small stuff.
If it's not in the 'now' I am not going to stress.
It's human nature to preempt things, stress, dwell. Churn the past etc etc.
You get it.
So I will live and deal with what's happening within my moment. The calendar can keep the rest until the time is aligned.
It's funny because I just experienced a pretty bad moment whilst trying to check in for my Jetstar flight with the kids. It made me upset, humiliated and angry.
I called my husband to express my hurt.
He said, 'zero farks'....
And that's exactly it.
Zero farks for the energy sucking moments.
Thanks for sticking around to have a read of my ramble. I love you guys and thank you for your support always.
We are almost reaching the two year anniversary of the offical autism journey.
Almost two years that we have plugged away at early intervention.
It's been quite the ride.
Stressful, draining, magical and encouraging all wrapped up in a BIG rigid schedule.
Back when James was diagnosed I felt like we were catapulted into a unknown world.
We didn't know where to start.
Who to turn to.
What to do first.
It took a LOT of research ( often between the hours of 1 and 3 am).... I know ya feeling me with that!
I searched and searched for other autism parents that were sharing their journey. I needed support and most importantly guidance.
I learnt pretty early on that autism parenting is not unlike normal everyday neurotypical parenting.
EVERYONE has an opinion and EVERYONE is happy to share it with you.
Now the one thing that I was told when we received formal diagnosis was, 'heal the gut and you can heal the brain'.
This gave me hope.
I wanted to know more.
I started asking those few around me that had a few years experience with ASD parenting.
Their response was shocking, well shocking to the hopeful newbie autism parent on the block.
They shut me down like lightning with every question I asked.
I asked about healing protocols, different specialists and different ways to approach this new label we had acquired.
Rather than going away defeated, I just felt sad for them and sad for their children.
They didn't want to try, they weren't doing anything other than the bare minimum for their children. And all they said was, 'it doesn't get better, it only gets worse'.
This was their mindset.... it was not and is not mine.
I have really approached James and his label from every single angle and I am damn proud of our progress ( success).
We are still going.
It doesn't stop here.
As he grows and develops so will our team, protocols and everything else that comes with supporting James.
What I want to say to all the newbie autism parents on the block is.... don't allow anyone to dull your spirit, enthusiasm or plans.
Autism is not a one size fits all.
You know your child better than anyone.
You will never know if something will or won't work unless you try.
Those that follow us over at @jameshealthjourney know that we are living proof that it gets BETTER. Not without hard work but it does get BETTER.
We have hard days.
We take steps backwards but you will NEVER see us give up!
Breathe and I promise you if you do 'whatever it takes' there will be no room for failure.
Remember if plan A doesn't work, there are 25 other letters.
We are always here to help and guide but listen to your mummy gut, it knows best, always!
Well it's almost the final month of the year 2017.
It's the time of the year that I start reflecting on our year and what my goals will be for 2018.
This year has been one hell of a year....
James has had a full on weekly schedule of schooling and therapies.
Every school holiday break has been taken up with therapy intensives.
Many specialist appointments in amongst all that too.
Scarlett had the sudden onset and diagnosis of the autoimmune syndrome pans/ pandas, boy has that been a ride.
We also made the decision to move house, renovate the new house as well.....
We have been busy, manic if you like, real manic.
We've put a lot into the health and wellness of our children this year. We have seen some huge success in recovering our children.
We are thankful for that.
There are goals that haven't yet been achieved also, like James' toilet training hasn't happened and he still isn't eating food like a child should.
He does some number 1's in the toilet and has started eating some bananas and watermelon so I guess I will take that as a win.
We are approaching the biggest time of the year.
Our calendar is so full on that I find it difficult to slot things in.
I am juggling all my balls in the air and I feel like at any moment it's all going to come crashing down.
That brings me to my goal for 2018....
Being selective of all the 'extra' stuff!
That's it. That's my goal.
I am a 'yes' man, I say yes to a lot.
When it comes to my children, their health and their life then it will always be a yes but all the added extra little things that I take on will now be heavily selected.
I can't do it all.
I am physically, emotionally and mentally drained.
My life is ruled by the daily square on the calendar and let me tell you, it ain't got no more room!
A few days ago we were lucky enough to receive tickets to a local disability organisations Christmas event. I got chatting to another local ASD mother. She said, 'you are a lot more positive than I was when I started my autism motherhood journey'. She expressed that it took her time to understand how important her emotional wellness was.
And that's just it.
I'm a strong woman.
I can whether a lot of storms but should I have to whether all the storms?
My children's requirements aren't going anywhere in a hurry, with that said all the other bits will have to wait and or not happen.
So folks there you go.
I would love to hear from you.
Have you started thinking about your goals for 2018?
Is your emotional wellness part of the goals?
Are you protecting your sanity..... do it, whatever that maybe for you!
We are the glitter in the rainbow, don't let it dull.
Well I haven't been over here for a while....
So we are pretty manic at the moment, like every other family in the lead up to Christmas.
We have had some big things happen this past week.
Last week I had my first meeting with the NDIS.
This literally strained my soul.
I did so much prep work, collating and pre planning for this meeting.
I was anxious and scared of the process.
I was anxious and scared because I had heard so much negativity regarding the transition to the NDIS through parents first hand experiences.
I am happy to say that my experience was pleasant.
I had a planner who listened to my concerns and took all my notes ( pages of notes), reports and summaries with him to continue building the plan for my child.
I got so many messages from people saying, 'why are you stressing' and almost telling me I was stupid for making such a big deal out of the NDIS.
The comments kinda pissed me off ya know.... why?
Because I am a mother who goes above and beyond for her child.
His development, integration and success is in my hands.
I am his voice and I want him to be heard.
I want him to be supported in every aspect of his life and I am prepared to fight for it.
So now we wait the next step in the NDIS process.
Note: those that do not live in Australia, we are currently going through a disability funding shift.
Boy did I feel a sense of relief when that meeting was over!
Now let's reflect on the next big thing that has happened this week.
Yesterday I had the privilege of attending a conference.
Pans/Pandas conference with three amazing speakers.
Dr S Swedo, founding Research paediatrician of the syndrome pans/ Pandas ( from America).
Professor R Dale, researching neurologist in tic disorders and pans/Pandas and my children's neurologist.
And some other lady who is a teacher in special education, sorry I may have zoned out here EEKKK.... she was speaking a lot about what I already know. Every one has a little nap in conferences right? This was my nap time.
The day was AMAZING.
I was in a room full of parents of pans kids and medical professionals with interest in the syndrome.
I learnt a lot.
But not as much as I will learn on Thursday when I take my children to a very special appointment..... stay tuned!!!!
So the next few weeks are very intense in the Mahanidis house hold.
We have a lot of specialist appointments on top of regular school and therapies and the add ins of Christmas festivities
Big appointment this week for James and Scarlett.
Next week both kiddies have their paediatrician catch up appointment, this appointment is always so draining because I have to give insight into how we have gone in the last 6 months with all of the therapists and specialists.
We discuss treatments from all specialists and he gives guidance on whether we are going A ok or need to explore another avenue for the kids.
The following week James baby has his first feeding therapy appointment.
I am going to be optimistic about this one.
James did not eat food.
He has severe food refusal from fear of food.
Thanks FPIES for that one.
James has seen feeding therapists in the past who won't even touch his issues.
We have even seen the feeding team at Westmead Children's Hospital who told me I am doing everything right at home and that no one else could offer me any more support.
But now it's time.
We have finally been slotted in with the guru in NSW and have had a whole year of speech therapy and OT to help aid the other issues associated with eating food.
Fingers crossed we can get a plan and make some gains because I have constant nightmares of having a 16 year old boy still prescription formula fed!!!
Then we will land ourselves into December which is Scar babies time to shine.
Scarlett's has her first ever dance concert.
So we have rehearsals and shows which mummy is a tad pumped for!
James and Scarlett also have the check in appointment with their integrative biomed doctor. This is the lady who heals the gut. We will be reporting on the latest additions she made which was acidity reducing meds and also E. coli supplements.
Sometimes I wonder how the hell I get through everything we have on our plate.
But I just take it day by day.
Everybody freaks out when they see my calendar on my fridge.
It's funny you know because I don't think I would want it any other way.
Everything I do is for my babies and I surely do whatever it takes.
I am sorry this post is so long but thank you for reading.
Thank you for our support always.
We definitely have a great online community that supports us.
I get asked a lot about what probiotics I give the children.
For those who don't know, I have one child with ASD & FPIES and another child with Pans/Pandas autoimmune condition. We are on a gut health journey and probiotics are a big part of that. REMEMBER we are literally all bacteria!
Before I start listing the probiotics I use and why, I would like to make note that everything I use has been suggested by one or more of the children's team of specialists who include immunologist, biomedical doctors and gastroenterologist amongst many others.
I never just implement something without someone in the team having full knowledge on what we are doing.
I would also like to add that I believe probiotics are a VERY individual thing and I would highly advise getting the gut microbiome tested for deficit bacterias before messing around with strands you give.
Please note that not all children can tolerate probiotics and or specific strands, I mention this below.
I would personally not touch anything that contains streptococcus either.
Google that bad boy yourself.
I don't touch any probiotics that contain fillers.
When considering probiotics please look at the individual strands, brand and the amount of bacterias, generally the higher the count the better.
Please also start SLOW. Don't ever go in with the recommended dose.
Also know that you will experience bacteria die off which will result in changes in behaviour. When bacteria dies it releases more spores.
But important to ride it out to get to the other side.
Eczema shield ( lactobacillus rhamnosus): There are many studies about this strand and autism ( head to google if you must) James has been on this since he was diagnosed. James' immunologist first put us onto this probiotic and I swear it was the reason we had huge growth in speech.
It is proven to reduce allergies in children.
Gastro relief ( lactobacillus rhamnosus & saccromyces bourlardi): Sac B! What a bloody legend this one is. It's a good yeast and was recommended to us by James gastroenterologist. I didn't implement it until 6 months after it was recommended. Why? Because I was scared poop less. I was told we were trying to rid yeast not give it. I have learnt that this is magic stuff. And there is a difference between good and bad yeast.
Sac B stimulates the lining of the gut and helps out the struggling good bacteria to be able to crows out the bad!
James also takes SB Floactiv ( not pictured) which is just Sac B with no probiotic.
PRO 8: now this was originally purchased for my Pans child Scarlett BUT she was ticcing when taken the product. Even if I reduced the dose right down it still had a negative effect on her. I have since learnt that pans/Pandas children can't always tolerate probiotics or certain strands and it's advisable not to do multistrand probiotics. They also require d lact probiotics. I now take this one for myself just to use it up.
Gut PRO 3: this is what Scarlett now takes in very very small does. It is made specifically for pans children. It has the strands they best tolerate and it's also d lact.
This has been introduced recently to both children by their biomedical doctor. It is E. coli. We need E. coli in the gut to help crowd out the bad guys like streptococcus. We found both children's recent stool analysis to be lacking in this bacteria strand. Both children's gut flora is very acidic and apparently thi bacteria will help with alkalising.
i have also read recently about the stand Lactobacillus Reuteri reversing autism in rats.... whilst I have not given this to my children, I know a number of people that use the strand with huge success.
Finally, I am NOT a doctor, I am a well researched and knowledgeable, proactive parent who is sharing our journey to help others.
We are recovering our children through health.
Please seek your own medical advice.
I have this burning desire, a burning desire to do more.
More for a community I officially joined in February of 2016 when my son James was diagnosed with autism spectrum disorder.
But I just don't know what it is yet.
I tell you what though I am incredibly passionate about awareness, inclusion and support.
I first hand know the magic of autism.
I watch every day one special little man achieve things his label suggests he can't.
He achieves these things because we include, encourage, inspire, support and do whatever it takes for his success.
We are all different.
Every single person on this planet is different.
More needs to be done to show the different ways of the world.
Magical ways that will enlighten the most rigid box ticking mainstream minds.
I need a bigger voice...... I need to find my roar.
#autism #asd #autismmum #asdmum #specialneeds #specialneedsmum #specialneedparenting #specialneedsblogger #blogger #autismadvocate #differnetnotless #lifeonthespectrum #indigochild #soul #soulswork #universe #mummyblogger
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.