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!!  

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