Saturday, 20 May 2017

Becoming Jane Doe

So much has happened this year since my last post.  Most importantly, if not scarily, in early March the children's father walked out on us.  He withdrew all support and removed himself from the responsibility of being a husband and father outside of me attempting to encourage contact and him paying minimal child support.  

I have been left heartbroken.  

My world has fallen apart.  

The children are in shock.  

All our plans for the future have been piled up and lit on fire.  

I have not been able to articulate the events very well, nor our emotions.  

We (the children and I) are still pushing forward with homeschooling, training our wonder dog and moving to Adelaide to be closer to the children's therapists.  

Our eldest son has moved out of home, mostly due to some of the threats received from his dad regarding cutting off utilities he required for his university studies. He has severed all ties to his dad, which I hope and pray can be reversed one day.  I completely understand his choices.  he is an adult and has his own mind.  He has seen a lot over his almost 19 years on this earth and is finding it hard to forgive what he has seen.  I am blessed that he is standing by my side and becoming a wonderful young man with morals, ethics and capable to make his own decisions rationally and considering the affects on others around him.  It is going to be very hard to move away from him when the time comes for us to relocate to the big city.  

As for me and the other children, we exist.  I do my best to try and smooth over the rough edges and pain in our daily life.  It's not easy.  My counsellor and GP have had me contact further organisations to help support us through this time.  Actions made towards us have been determined to fall under the  heading of domestic violence.  DV is more than just bruises, cuts and physical assault.  Emotional, verbal and financial abuse can be difficult to prove.  However, I have proof.  It hurts to hear that I, and the children are being abused.  It hurts, but we will move on.  We can recover and I pray I can protect these young souls so they don't feel this pain as acutely as I do.  

What is going to happen in the future, I have no idea.  I need to retreat from life in general.  I need to heal.  I have deactivated my Facebook account and am withdrawing to try and find myself.  Work our way forward.  Become the real me.  I am more than a wife, more than a mother.  I am a human being who is intelligent, strong and deserves respect.  Until I discover just who I am I will be Jane Doe.  A blank canvas as such...  working to find out who I am and where the future will take me outside of being a busy mum to my beautiful family.  

So here I am, Jane Doe, signing off for now.  I don't know when I will be able to check in again.  I don't know what tomorrow is going to bring, let alone the next few weeks, months or next year.. but I do hope that I am able to find myself again.  In the meantime, I am becoming Jane Doe in order to be able to find the real me.  

Wednesday, 18 January 2017

Baby Steps...

Today (well what's left of it) resulted in some productive learning for the children.

Domenik, as expected, shied away from anything that had to do with pen, paper, scissors or glue; Aerynn however loved it!  She did some work on the colour purple.  Deliberately, neatly and carefully tracing the letters of the word "purple" and starting to develop an understanding on which letter was what.  She then studied some magazines and cut out some purple items to stick into her scrapbook "purple page".   She did so well!!!  There was a little confusion about which hand she wished to write in.  Coming from a family where there are several dominant left handed individuals I am open to her experimenting and seeing which is easier for her to work with.  Aerynn has also been finessing her pencil grip and arm positioning when drawing and writing.  She presented me with 3 pictures , one done before correction and two after.  She identified that using a correct grip and position made her able to draw smoother and harder on the paper.  Previously she was simply brushing lightly on the paper, with her wrist and forearm being held off the desk by her shoulder and elbow position.  Aerynn also had attempted to write some letters,  Notably an A, o, r, P, b, i, n.  I suspect she was attempting to write her name.  I am excited by her keenest to learn, despite her upset this morning from being thrust in a busy social situation she was quite obviously not ready for.

Domenik did some social work this morning at the library, joining a group for some hands on paper making.  He learned how paper can be beaten back down to it's fibres, then recycled and made into all kinds of artistic media for use further down the track.  He was able to select some coloured paper pulp slurry for his own paper construction and with very little assistance screened, pressed and presented his paper ready for drying.  Whilst some was wet he decorated it with additional threads, beads and sequins.  At the moment they are drying, soon we will be able to bring them in, iron and he can use them for whatever purpose he wishes.  I believe this will be a project we can do together at home whilst investigating further his curiosity into recycling.  Aerynn was meant to join in this class, however it was very crowded and she got lost in amongst the taller and more boisterous children.  Being able to replicate this project at home is something I firmly believe she will enjoy, especially once she sees the finished product from Domenik's brave adventures today :)

Dom also initiated a cheerful conversation around what groupings of animals are called whilst in the car travelling out to Moorak in the afternoon.  He correctly identified that a group of cows are called a herd, and a kangaroos are a mob.  We discussed how different families have different names, such as a flock of birds, school of fish and even a parliament of owls.  this will be something we can touch on further as he starts some investigation into animals and life cycles later in the year, unless, of course, he wishes to delve into it sooner rather than later.

Tobias also had a productive day working with colours.  He identified blue and yellow as his favourite colours today, and chose a tub of play dough of each colour.  He investigated both blue and yellow and identified items in magazines of similar colours.  He attempted to cut some out, however his fine motor skills are not quite mature enough to complete this task and he became frustrated with it.  We quickly moved on to investigate what happens when the colours mix.  Toby was quite impressed to discover his two playdohs made a beautiful shade of green when combined, however was rather disappointed that he could not then seperate it back into the original primary colours.  Later this evening Toby has been playing with magnets.  Using the force of a magnet to move items around the floor.  He has discovered that not everything is attracted to the magnet, but metal works really well.  He was impressed with how strong some magnets were and was experimenting with sizes and how firm the rods (drill bits in this case) such to the magnet itself.  He was also intrigued that although metal is fantastic to use in this experiment, that not all metal is attracted to the magnet, such as the aluminium of his toy cars.  This can be something we can further investigate as we do some experiments together with magnets later in the year.  In the meantime he is quite happy going around his toys (and my toolbox) to see what is magnetic and what isn't.  I am hoping tomorrow he will respond to working on some charts to formalise his natural play investigations of this evening into a small report that we can work with later in the year.

So not necessarily a planned learning day, but learning completed nonetheless.

Saturday, 31 December 2016

Goodbye 2016, Hello 2017!

I'm joining in on all the 2016 reflections that are popping up everywhere...  

So 2016 has not been an easy year, and I'm honestly glad to see the back of it. It's been a busy year of building trust with the children's therapists, and learning who is there for us rather than just for the fees. We've been able to establish new, albeit exhausting, routines of appointments in Adelaide and have seen some successes, particularly with Toby. It's been a year of pain and heartbreak with realisation that Aerynn's diagnosis are not what we had hoped. We've added her to the family's autism ranks, learned new words (retinitis pigmentosa) and accepted that we are inevitably staring down the barrel of a terminal diagnosis, so making memories is becoming very very important for us.

Moving forward into 2017 I hope to leave the mess that 2016 has become behind. I hope to build a more positive space where the children can learn to trust their education and learning environments again as we embrace unschooling/homeschooling. It really is the best option with our rigorous therapy and appointment schedule. I hope to continue to make as many visual memories as possible for Aerynn. Lots of things for her to remember as her vision progresses to whatever RP will take it to be. A year of growing supports as we now have a fantastic therapeutic and medical teams working together for the children's benefits, training our beautiful service dog, and we have our big adventure in August with the trip to Queensland and our first real holiday in over a decade.

That beings me to the word I am embracing for 2017. It is going to be a year of change. Lots of adjustments as we work our a positive way forward. Change, however, has many negative connotations so it doesn't feel right. Instead I'm going to be working on making all these changes that we have ahead into adventures. Lots of little adventures into the unknown as we make the best of what life has dealt us. So bring on 2017 and the ADVENTURE that it is to share with us :)

Happy new year everyone xxx

Friday, 30 December 2016


Domenik has been asking to do some school work! This is the child who only 4 weeks ago, at the mere mention of "school, would curl up into a ball in the corner of his bedroom repeatedly banging his head on the wall until he was bruised and the wall as dented, or would thrashing around so much he put his foot through the wall. This child who had a meltdown at the suggestion to pick up a pencil at his OT assessment was actually BEGGING to do some school work! He had been seeing all the beautiful new science and life skills bits and pieces I have been collecting and was anxious to get in and start using them.

Unschooling, it would appear, is all about being child lead and allowing them to learn in their own way. Domenik is a very smart little boy, however, up until now he has been forced to learn in a particular manner. It was not the right way for him to learn. Domenik fights conformity and being told what to do. Even being asked to make a decision is a tough thing for him, because it is not something he has chosen to do. That sounds odd when written down. Let me explain.

When needing to make a decision, who actually decided that a decision needed to be made? Was it Domenik or whoever was supervising him? Additionally, how was it put to him that he needed to make the decision and who stipulated what the choices are? I know offering a child a decision seems pretty straight forward, and as though we are providing them the option, however when you have a child who is resistant to this kind of conditioning it's wise to take a step back and looking at the situation. Was there ever really a decision in that scenario or was it a situation where the child was to simply comply with either or and need to put up with the resulting consequences? In which case it really wasn't a decision was it, it was being told what to do.

So, what should i do? tough one, but i think even though we are early on in our journey I am seeing that providing options to Domenik in a blunt and "normal" manner is not going to work. I need to still control the situation, however make it appear to Domenik that he is in control and he has complete power over what the decisions need to be. So if it's a case of what to do, instead of straightforward telling him he needs to do maths or science now, I put the tools out where he can come across them during the day and let him pick up whatever he wishes and let him come to me with the choice. So it would appear to him that he is simply discovering and naturally questioning, where as I am in around about ways still structuring his day and his education (knowing that he is interested, curious and a questioning character) and in complete control.

I know this is not entirely a concrete way to go about learning. It certainly does not suit a regular and mainstream classroom, however I have faith that with some forward planning and trusting in my knowledge of all things Domenik that using this method we can start building on his learnings and incorporate learning into his every day life. In time, I hope that as he "de-schools" he will trust that I am not going to force him into a situation which triggers his fight or flight instinct which results in his anxious reactions and meltdowns. One day he may even pick up a pencil again!!!

Oh and as for yesterdays learning... Domenik discovered a magnifying glass. Upon examining a light globe he noticed the letters V and A on there which lead to a discussion on volts and amps (science) and what electricity can do for us. He then moved on to examine the skin on his arms and hands. Ne noted how there were lots of lines and creases and the texture was different on the palms of his hands to his arms and then again on the soft inside of his arms. This lead to a discussion on what skin does, how it is made up of little bits called cells and that these little cells are what all living things are made of. These early steps in exploring his world will lead to future learnings and build a curriculum which is entirely child led. Not a bad days learning for a child who resists school and is currently on "school holidays" ;)

Tuesday, 27 December 2016

Winding up 2016

2016 has been a rollercoaster of a year.  Lots of ups and downs.  We have been to Adelaide 10 times, that means over 10,000 kms travelled in order to access therapy, medical appointments and hospitalisations alone!!!  

Aerynn has been subjected to many tests, however unlike in previous years where they have yielded no results, we have had some answers.  She finished the year off with a week in hospital for a 24hour 5 day EEG.  We don't believe she had an obvious seizure whilst there, however it appears there was some results garnered from the stay and we get the results early in the new year.  She has also had genetic testing showing a gene deletion resulting in a diagnosis of retinitis pigmentsosa.  She is expected to lose her vision with this diagnosis.  No hard and fast timeframe or prognosis.  There have been some guesses, which are not what we really wanted to hear, so for the moment we hang onto the positives, that is no serious damage at this stage, and move forward planning as many adventures and visual memory making opportunities as possible.  During the year she also received a diagnosis of being on the autism spectrum.  No surprises really, but something that I need to be very aware of as she enters schooling age.  How is she going to cope with all these changes she is experiencing, let along deal with the pressures of socialising and educational learning?  Lots of unknowns and concerns...

Domenik has had some assessments completed which point towards a possible learning disability.  At the very least he has some serious delays.  He is struggling socially and academically, but is a very bright young man.  These results are at such odds.  His OT assessments show that he has reflexes which should have been absorbed when he was 8-9 months of age.  Until these delays are addressed and worked on my little man will struggle to progress further with any physical, sensory and academic development and success.  Dom has recently had a change in medication to try and help combat the anxiety which is eating him up inside.  So far the results are not showing, I need to stop expecting instant results and learn some patience...  

Tobias has had his ASD diagnosis finally confirmed and been approved NDIS funding.  He has commences intensive speech therapy and is slowly moving forward with his speech and language attempts.  We don't know what the future holds.  He has plateaued and I have been warned that it is very probable that this may be the best he can achieve.  Basically, accept what we have, keep hoping for more improvement, but to not expect it.  We are blessed really that he has some form of language skills and is trying.  He will start off with a speech and language augmented program for his iPad early in the new year in order to assist his communication skills and reduce frustration for both himself and those he is attempting to communicate with.  Like Domenik, Toby also has reflexes still present which should have been absorbed as an infant.  Again, this raises concerns as he is due to enter pre-kindy next year.  How is he going to cope socially with this delay as well as his communication complications?  I honestly have no idea.  I know what will be will be, things always seem to work out... but at what cost?  

So... in light of the above, and that we have been recommended weekly occupational therapy (totally not possible!!!) which is resulting in the continuation of 3 weekly trips to Adelaide, a decision to homeschool the younger children has been made.  

I know it is the right choice.  

I feel calm, collected and strangely excited to be moving forward with this plan. 

At the same time I am scared and have concerns...  how can I be calm and scared at the same time!?!?!  I am weird ;)  

So, as of 2017 we will be homeschooling, UNSCHOOLING to be precise.  Completely child lead education.  

At this stage Domenik is too anxious to even sit at a desk and hold a pencil.  He needs to be able to relax and know that writing is a positive, reading is fun and that it won't be forced upon him.  Dommy has a few more assessments to complete to confirm his suspected diagnosis of dyslexia and very probably dysgraphia.  Until we know what we are dealing with I am moving forward with a completely hands free approach.  One can not force a child to learn.  But I also know that this little man DOES want to learn...  so "easy does it" as he moves forward into a new kind of learning :)  I can't do much worse than what has been attempted already!!!  Not dishing out on his previous teacher at all, he has done his best, it just appears that the formal education setting is not where Domenik is going to thrive.  He needs hands on and practical learning... I know we can do this!!!  

so...  lots of changes and adventures ahead.  2016 has been the final straw in so many things in our family, formal education for the little ones is the one which is going to have the biggest affect on myself and the children.  But we move forward to 2017 positively and excited for all it may have in store for us!!  

Exhaustion Creeps In...

Original posting...


It’s been creeping up for a while.  Those nights of interrupted sleep, countless hours of settling children during the dark of the night.  They’re not newborns anymore, but addressing their fears and need for comfort and security are just as important when dealing with children who have special needs.
Hour upon hour of missed sleep has added up.  Compounded with Mr T deciding that once a week (sometimes more) he doesn’t need any sleep at all.  Due to his high energy levels and inability to self regulate and make wise safety decisions we are unable to leave this little man to doze off in his own time.  He can not be left alone at all whilst he is awake.  So, mummy duty kicks in, and whilst he is awake, mummy is awake.
I have been able to push the exhaustion aside for quite some time.  It’s become my normal.  But for some reason lately it has hit me hard.
I can’t push through much longer.
It is a physical ache, not just feeling sleepy.
Every muscle aches.
I’m still trying to push through…
Miss A is currently threatening to pull an all-nighter this time.  I don’t think she will be successful.  She had a seizure not long ago, so I know she will crash soon… and crash hard.
Then, I will get some sleep… until I hear the cries of Toby around 2am.  Like clockwork.  Then I will be poked, prodded, kicked, pinched, scratched and thumped.  Again, behaviour I have learned to tolerate.  He knows no different.  Pushing back on this behaviour achieves nothing in the small hours of the morning.  He doesn’t mean to hurt me.  He doesn’t mean to stay awake.  His (and Miss A’s) brain simply functions differently to what we accept as “normal”.  One day it will improve.  In the meantime, it is exhausting, but I relish this time spent together.  I am doing something right to have my children want to spend time with me.  The constantly seek my support, guidance and protection.  These are their signs of love and affection.  It may not be what most people appreciate as a positive behaviour, but if they didn’t care, they wouldn’t call or seek me out.
A small mummy win.
Pushing through to find the positives in the exhaustion is tough, but we do it.  We appreciate everything we can.  You never know what the future holds, so relish the positives while you can.
Even when exhausted!