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.
The plan to make NO plans...
Can I do it?
Well, I am going to try!
Today is the first day of the term 2 school holidays here in Australia.
James has no preschool, no therapies and no activities ( except one trial class, I will touch on this another day).
Living in the autism world is all about routine, structure, repetition.
We plan everything, absolutely everything.
And you know what... I am tired, tired of living by the monthly schedule on my fridge. The schedule that has 5 million things scribbled all over it, from schooling, therapies, specialist appointments and everything in between.
Normally when we get to the school holidays I have scheduled in activities, extra therapy sessions, I fill us up. I have always filled us up in fear of the holt to our normal weekly routine and how that will effect James and ultimately our sanity.
This school holidays I decided to take a break.
I need a break too. A break from the constant on point, organised special needs parenting.
I want to go with the 'flow'...
The 'flow' so far has back fired a little but I am determined to make this work.
Saturday morning just gone I made a spontaneous decision to book a hotel in the city for the evening with my little fam bam.
As soon as daddy got home at 12 pm we headed to Darling Harbour for a little escape.
I had plans to walk around Darling Harbour, enjoy good food, grab a coffee and sit and drink it along the water. Perhaps take the kids to the aquarium or reptile park.
BUT it was not to be. James was uncomfortable the whole time we were away from home. It made me realise that our 'normal' is a different 'normal'.
We couldn't sit and eat like a normal family, we couldn't walk around and enjoy the scenery, we didn't even make it to the kids activities due to the little mans issue with self regulation.
So with that said I realised that our life is beautiful... it's a beautiful chaos, we may not be able to be super spontaneous and enjoy the non structured moments in peace BUT we sure do have love.
We also have fun, daily. But our fun is just a little different.
What is normal these days anyway?
Is anything classed as normal?
Comparison to others is always dangerous and always turns out negative.
We do the best us and our us is our normal.
So this school holidays I am going to embrace our normal and try and go with the flow....
So at the start of 2017 I had put into place some goals that I would like to work towards with James for the year.
It's now June and I decided to sit down and reflect on the goals I had put into place for James baby.
Now, I had also constructed what I thought was a pretty GOOD early intervention schedule for James. I had included school, sporting activities, early intervention program for school readiness and his main therapies which are Speech and OT.
So his schedule going into the school year was to look a little like this:
Monday & Tuesday - Early Intervention Unit ( school readiness program)
Wednesday - Preschool
Thursday- OT, speech and soccer training
Weekends- regulation, family time and home based therapies and social interactions.
I know RIGHT.... the above schedule looks pretty damn SWEET. I had everything ticked off!
Well... the time came to implement this schedule. Day 1 of EIU. Mum was pumped, on paper this was the best thing for James!
WRONG.... I pulled him out quicker than you could say CHEESE!
I won't go into what I saw on that day BUT note I made a very firm complaint to the department of education! I was NOT going to leave my developing child in that environment.
So there went my plan. Down the toilet. As soon as I walked away that day, I got in the car and called his OT, she suggested James do 3 days of preschool instead of the 2 days that were planned. Quick phone call to the preschool director and he was IN. So the schedule now included 3 days of preschool and no EIU program.
Everything happens for a reason they say!
So for the first term we decided not to include the soccer training that James had done all year last year. Our reasons why were we didn't want to overload him to much too quickly.
Our schedule worked so perfectly for term 1 of 2017 that come term 2 we decided it was time to add back in soccer. James was PUMPED, he had been waiting. He asked about soccer constantly!!!
Day 1 of soccer and James had NEW coaches.
James officially did 1 lesson of the term. He was fabulous, he did the entire 1 hour session with amazing listening skills. BUT his new coach was not ASD aware... that's all I will say about that. Excellent program, amazing supportive teachers previously BUT regardless of what was previous and regardless of the program if the teacher is not right then nothing will work. This teachers actions gave James such severe anxiety that he would not walk back into soccer.
So, Mum was devastated! Soccer is james' thing!
I watched my little boy refuse something he LOVES because of the actions of someone who is suppose to be a mentor!
So I have contemplated many times over the last few weeks what we are going to sub the soccer training with. And as I love the program and the previous teachers I think we have a term off and possibly look at soccer again in term 4, of course NOT with that particular coach.
So that's the schedule for James baby for 2017. We are almost at the end of term 2 and hubby and I both agree everything is working quite well. BUT it remains flexible. Things change and we need to be able to bend and adapt to whatever James needs at any given time and as all my ASD peeps know that can quite often be in an instant!
So my goals for James for 2017 were:
3. Writing his name
4. Riding a bike
Obviously the above are quite BIG goals.
BUT in January of 2017 James learnt to ride a bike! And we haven't looked back. We went on a holiday to my parents property in Tasmania at the start of the year and my Dad had a bike there for James to ride. James fell, he cried but he kept trying and he DID IT! Great achievement and I am super proud we have this one down pat!
It's great for James' sensory regulation.
Toilet: so we aren't there yet.
But we have come pretty far. James now uses the bathroom every day before and after his bath. He will also use the bathroom for number 1's maybe 30% of the time at school when he is asked if he needs to go.
So although I would love nothing more to have my 4 year old out of nappies I have to think about how far he has come on that journey and I am happy with the progress.
FOOD: I am pleased to announce to you all that my once non eating child has been averaging a bowl of gluten free weetbix and purse apple a day and either an apple slinky or banana.
BUG BIG BIG news there...
James' eating is a tuff one. He has FPIES, a lot of anxiety around food based on his allergies.
James has a huge team of specialists which deal with this part here and the key is NO anxiety around food at all.
So James baby can spell his name, recognise his name...
He can't yet write him name and a lot of it come down to being able to hold a pen or pencil.
This goal right here is my number ONE goal for the school holidays that are fast approaching us.
Kmart sell these abc and 123 tracing letter books, so will get back to you on this goal.
So on reflection of 6 months work, I am HAPPY. How could I not be, seriously. This kid is moving forward. Sometimes it feels relentless and repetitive and I think that's why it's important to often sit and reflect on everything.
So today is Friday ...
I feel as though I am lost in some vortex and I can't get out.
I am not functioning to my optimal and I feel like I have a mountain and pressure built up on my body.
There is a few things happening on top of the normal stresses of every day life.
James is unwell. Now I have literally had James in the doctors office weekly for a few months now. He has had a raspy voice for months, he was unwell on and off during this time, no fevers though so no need to explore the need for antibiotics.
Anyway last weekend he had 4 days of fevers that only hit from 4 pm onwards. It was a long weekend so I got him to the doctor on Tuesday to have him checked out.
The doctor we saw took swabs of James nose and throat. James was also placed on antibiotics, woo HOO cue the god damn fucking hyperactive, crazy ass child... antibiotics and James are NOT friends.
So school was cancelled, therapy cancelled... EVERYTHING cancelled.
Now, I love my child, I truly do BUT when he is on antibiotics and has NO outlet for his energy, I become a less loving CRAZY lady.
I will happily tell you I am ONE stressed out mother farker who is tightly bound in stress that if you look sideways at me I am ready to unleash.
Just ask my husband, he will tell you.
No cool, calm and collected here!
Anyway so after a week of wonderful together time and sickness, I get a phone call from the GP.... she needs to see James.
So I pushed for the results over the phone because quite frankly I am NOT in the mood to go to get two hyperactive children ready, fight them to get in the car, fight to get into the doctor, ETC you get the vibe.
So she tells me that James' swab came back positive for:
Parainfluenza type 4 RNA.
So it's a rare strand of virus and people who have shattered immune systems need to be careful.
So with my new found knowledge of James Saab I have to contact immunologist, neurologist blah blah blah.
So neurologist said it's a common strand for this time of year.
Yes we have to worry about James and hope he recovers quickly, BUT Scarlett is the concern...
Scarlett has PANS/PANDAS, an autoimmune condition triggered by virus, infection, environmental, toxins, well pretty much everything.
So when her immune system is triggered, rather than the antibodies fighting the infection or virus it attacks her instead. It attacks the basal ganglia.
These episodes are called Flares.
Every child flares differently.
Scarlett's flares include 4 motor tics, vocal tic, severe separation anxiety, food refusal, inability to know when urinating.
So my neurotypical little girl who is perfectly normal on every single level until she is in flare. The flares scare me... her first onset a few weeks ago still lingers and haunts my soul.
My child literally woke up a different person.
Ticcing and the rest of the horrendous symptoms.
Scarlett is on immune modulating antibiotics at the moment but even still I can see the onset of a flare about to spring upon us.
So this is really the core of my tightly wound stress.
It's really difficult to juggle autism and all it's demands. Therapy, schooling the 5 million sheets of paper work that come with it AND now that the NDIS is coming in that's ANOTHER HUGE stress.
Add Scarlett and that's where my 'go get em' energy is shattered.
This is why things that are not so important get shoved to the side. Like cupboards and drawers etc. this is what upsets me too when I see these people having lattes daily, able to maintain a perfect house, time for hair and nails etc.
And this is where I insert the number one quote I must remember and live by:
"Comparison is the thief of all joy"
Today is just ' one of those days' where I sadly reflect on the 'perfect family' image that I thought would be. I always have these days. They don't last long, because I remember how incredibly special my children are and how much I love them and think they are perfect the way they are.
It's also ok to have these days, filled with anxiety, stress, sadness and imperfection. Because these moments make us stronger.
Tomorrow I will be stronger. Today I am allowing myself to be a sad miserable sod,
I wanted to thank you all for always supporting our journey. I love all the private messages and emails we get, not only supportive ones but also asking some advice, either from parents of newly diagnosed children or parents that simply feel as though there is something 'not quite right'.
This brings me to say that I am not a specialist in the field of autism, I am simply a mother who has given her all to research, therapies and really ' whatever it takes' for my child to succeed. I do not do this alone. I have the most wonderful supportive husband, we have a great team of therapists and specialists all in place.
I am also here to help however just recently I have been completely and utterly misunderstood and feel I need to talk about it, after all I am a Virgo and we are communicators.
So, I had made a friend here in cyber space, someone I was valuing as a really really good friend ( despite not meeting). We have very similar beliefs when it comes to food, gut health and healing.
We would talk about a lot, daily life and anything related to our children.
She had some heavy concerns about her child. She would ask me many questions. So many questions, and daily, but I didn't mind because I wanted to help ( again I am a Virgo and I want to help everyone).
It got to the point where she was very stressed and anxious about her child, she had spent a number of days asking many questions.
So I felt it right to offer a 'suggestion' of what it might be.
She automatically got defensive and asked ' what gives you that impression', so I backed up my 'suggestion' with the reasons why I thought she might want to look into the condition ( and NO I did not suggest autism).
I sensed she was a 'little down', so I apologised if I had offended her in anyway.
She then cut me OFF.
I apologised AGAIN. She then said I, ' labelled her daughter and called her specialist useless'..... clearly we were having seperate conversations because that's not how I perceived it at all.
So I stated again, ' I am sorry you felt that way I am truly sorry'.
So I have actually just mourned a friendship, even though we have never met!
Isn't that crazy?!
This is how Chinese whispers start and people are made to look like they are something they are not.
I am not a coward, I am not malicious, I am not a know it all but I have been perceived that way.
I merely offered a 'suggestion' which was surrounded in love and respect.
I became the bullseye for all of her stress.
Bang. Friendship over and out.
Why can't people talk these days?
Why must people hide behind their screens?
Are we really living in a society where people can be so quick to cut off others?
What about the 'other' person ( I am fine by the way), I am just saying again, we are all different, everyone has a different personality, a different outlook on life etc but we must always remember to respect others. And simply just cutting people off is not respect in my view it's weak and arrogant.
James Mahanidis ( AKA track master)
Christmas 2015 we purchased James a wooden train track. James has always had a passion for trains and his favourite are wooden trains... believe me he has MANY.
I wanted to share his building passion.
Following are all the track creations James has achieved over the last week xx