Here are all the updates from James’ intensive therapy week:
Today is DAY 1 of James’ intensive at OT.
Every school holidays James does a week of intensives.
That is OT for 1 hour everyday for 5 days.
Each time we do an intensive we have specific goals we wish to work on.
Last time we worked on handwriting intensely and this time around it’s going to be introducing a new lunch box and formula bottle.
Most of you that follow us know that James doesn’t eat food.
He relies on a prescription formula.
He takes the formula out of a baby bottle at present but we are determined to get it into a more acceptable bottle or cup before the end of the year.
We have also started to call James’ formula a ‘protein shake’, let’s face it he is going to be on this long term so going to school with a ‘protein shake’ will be a more acceptable thing.
The foods here are foods that James used to eat and because of his FPIES we know these are ‘safe foods’ so this is what’s on offer for now.
In the little container is apple purée.
We look forward to giving you updates this week on our OT intensives.
Day 1: UPDATE...
The many emotions of OT this morning.
James was so happy to show his OT his new lunch box full of food.
That turned into a little anger and control when he realised we were doing some therapy around food.
Then it turned into upset....
But the upset made him sit on his own and eat an entire nuttelex sandwich, so that’s a TOTAL WIN!!!
For those wondering James has therapeutic listening music coming through the ear phones.
He did approximately 30 minutes of food related therapy and then he moved onto his vestibular system via swinging on a trapeze.
Day 1 was a success!
Day 2 OT therapy:
Today was day 2 of James’ intensive Holiday OT therapy.
After James’ hyperactive afternoon yesterday and how anxious James was around the feeding aspect of yesterday’s session his OT decided we would have a different approach to today.
Today I also needed to bring Scarlett along because I had no one to watch her while James did therapy.
First up James decided he would eat a sandwich in the car before therapy... WIN!!!!
The first game they played today was a shopping trolley board game and James’ OT purposely won the game. James has a problem with winning/ losing so this is something we are working on across the team.
James gets very upset when losing and too over excited when winning.
Next up was Sensory work.
The OT set up this rescue mission and the kids had to do a awesome Sensory course around the OT gym.
Lots of climbing, swinging and deep pressure.
Fingers crossed he has a more settled afternoon today!
Hello beautiful people,
So here is our first weekly blog for your all.
Our new routine for our wonderful tribe of followers is to update Facebook a couple of times a day but a more thorough chat over here weekly.
What an incredibly positive week we have had!
All of us!
Mum especially, I got to have a few moments away from the children this week. That NEVER happens!
It never happens because literally it’s my husband and myself for the children only.
But after the energetically and emotionally draining time I have had this last chapter I booked myself into a pamper afternoon, it was bliss.
It was exactly what I needed and it made me realise that it’s not selfish to take moments for ourselves, that it infact it is necessary to be able to function to full capacity in all areas of life.
The kids have had a very shifted energy ( positive) this week also..... we have visited new babies, visited the Nan Tien Temple, been to birthday parties and really just ‘been’.
Its school holidays here in NSW so it’s nice to have no structured, rigid schedule to abide by.
James has shown us a new skill this week... addition of numbers.
James just randomly started saying, ‘ Mum did you know 6 +6=12) and then more like that 6 + 5 = 11! We were a little blown away because it seemed to come out of nowhere but like when James shows interest in any other area we embrac the new passion and we have been discussing additions all week long!
James has suffered from pretty bad growing pains this week though, I am fortunate though that it has landed in the school holidays because the growing pains seem to set off his whole sensory system and he can be quite emotional and rigid when suffering these episodes. So best he is with Mum & Dad during these times.
Next week James has therapy intensives and we will be busy running to and from therapy. I find these intensives important as James is still in the early intervention phase of autism life and let’s face it early invention is key.
So at the end of next week my blog will be all about his therapy intensive.
Thank you for all the beautiful messages I received this week. Your words truly touched my heart.
They say everything happens for a reason....
I have always stood by this and today more so.
This morning at 7am I released to our Instagram community that we will no longer be sharing on the platform.
Although my decision came with great sadness it has also come with a huge relief.
For the last two years I have been the target of online bullying on this platform.
This is not just others opinions this is targeted attacks on my family wishing all horrible things upon us, including death.
My children have been called retards continuously and I many many things.
I could no longer keep up with blocking, reporting and deleting because like my troll said to me yesterday, ‘ block me all you want’.....
I believe this chapter has closed so that I can go back to writing, I love to write.
I will now be sharing my thoughts here on my blog and over on my Facebook page ( James’ Health Journey).
All of the important people will follow us over, I don’t doubt that.
I want to say a huge thank you to everyone that has followed us over on our Instagram account, especially those that have been following from the very beginning.
You have been there when James got his diagnosis of autism, watched us bring a new baby Scarlett home and more importantly you have watched the children grow and celebrated all the small steps of achievement with us!
We have some big positive things happening in our lives and I look forward to sharing those with you.
Thank you for your continued support.
Thank you to another gentleman ( you know who you are) for messaging me weekly asking if I had started my book yet.
You are right, my story needs to be shared and thank you for this push.
Love & light always,
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:
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