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

Discoveries....

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" ;)

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!!  

Original posting...

EXHAUSTION CREEPS IN…

OCTOBER 17, 2016 LEAVE A COMMENT EDIT

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!

Original posting...

IF WISHES CAME TRUE…

OCTOBER 8, 2016 LEAVE A COMMENT EDIT

…autism would be a word I had no idea of.  It would be something that happened to other people, not my family.  But wishes do not always come true.  Life is rarely what we dream it to be and autism is something that we live in this family on a daily basis.

Yesterday was another red letter day for us in relation to autism and the children.  Despite beating myself up and blaming all my youngest daughters reactions, behaviours and quirkiness on something I had done during her early childhood, the psychologist did not agree.  No amount of mummy guilt was able to save my little girl from being my fourth child formally diagnosed with autism.

This diagnosis is not going to change our lives, as we already have interventions in place for my other children with ASD.  It’s not going to come with any sudden cure for the screaming fits and violent outbursts she has when trying to get her dressed every morning.  It’s not going to make her shoes feel comfortable on her little feet, or allow us to brush her hair (don’t even think about meeting brushing her teeth!!)  but it will mean that we can get support to help her through these challenges and deal with the big confusing world out there.

Miss A has been recommended therapies in speech, occupational therapy and psychology. This will be fitted in around her already full schedules that deal with her medical care.  She already has regular contact with neurology, paediatrician, genetics, gastroenterology, dieticians, immunology and endocrinology.  What is a few more to add to this list?  Oh, I will need to add ophthalmology to that list soon as well.  So no, this diagnosis is not going to change much, but it will lead to support for the medical enigma which is Aerynn.

But… if wishes came true,
I know what I would do…
Wish this all away.
Dream of a better day.

No pain, no confusion, no frustration, no tears, no meltdowns, no migraine, no seizures… only joy, happiness, smiles, a long and prosperous future where all dreams could come true….

We do the best we can.  We hope, we pray, we dream…  we work towards making sure she is safe, comfortable and as happy as possible.  but still… if wishes came true…  I wouldn’t be here typing this… I would be tucked up in my bed instead of snuggling my little girl on the couch, enjoying the warmth of her body and scent of her newly washed hair.  I wouldn’t be pushing myself further and forcing me to be a better version of myself.  If wishes came true life would not be the huge adventure it is at the moment.  We wouldn’t have reasons to get out and live for today, because we would assume that there is nothing to take away our tomorrow… instead, we live knowing all too well that tomorrow is never promised.

So tell me, do I really want these wishes to come true?  Is this life, despite it’s hardships, really the best life one could possibly have?  I know we are lucky, things could be so much worse, we are blessed.  Should I wish this existence away or embrace all it is teaching me and allowing me to experience?

If wishes came true….  What kind of person would that make me be?

Hope, Dreams and Butterflies

This quote sums it all up…

“For our people, butterflies are a symbol of hope. It’s said that if you capture one in your hands and whisper your dreams to it, it will carry them up to the heavens so that the wish can be granted.”

― Sherrilyn Kenyon, Retribution

I want to be able to capture all the butterflies possible, whisper my dreams to them and send them off to weave their magic and grant my wishes.

but…

I know that can’t be done.

Instead I write, I plan, I worry and I cry.  I wonder how I am going to get through these next few years.  I wonder what my life, and family, will look like in a decade.  I pray that what has been predicted for us will not happen.

If only I could whisper my dreams to a butterfly and they could carry my wish upon their wings to heaven…  If only my wishes and dreams could all come true…

If only…

Hopes, Dreams and Butterflies.