Mikayla is made up of many varying components that operate on a different system to most, but make her the unique happy, loving awesome person she is ♡ This is her journey & story from when she suddenly collapsed in 2013 as a tween to the present.
For a brief overview of these & the impacts - https://www.facebook.com/mikisroadtorecovery/posts/704045556397886
⭐️ Drop episodes & NES
⭐️ Mixed receptive & expressive language disorder & severe language memory disorder
⭐️ Borderline cognitive impairment with severe working memory disorder & adaptive behaviour deficits.
⭐️ PTSD
⭐️ Chronic gastritis & gastroesophageal reflux disease
⭐️ Allergic rhinitis
These are just a few of her diagnoses, she also has many symptoms and issues that are undiagnosed and under investigation. Currently we are monitoring her kidneys due to hyperplasticity, and still have no verdict on sleep issues except it’s not narcolepsy.
Link showing some of Mikayla’s challenges and the issues they create ~ https://www.facebook.com/mikisroadtorecovery/posts/992261334242972
Update March 2018 (other updates & useful links found at bottom of page)
~ She started her Cert 2 in Animal Studies and chasing her dream to work with Devils or animals.
~ Second year on NDIS and it’s working heaps better.
~ Have been granted approval to FUNDRAISE (Letter in photos vaild for 2 years Aug 2017-Aug 2019) to help cover her medical, therapeutic, travel & associated costs.
~ Direct debits can be made to:
Bendigo BSB # 633000 Acc # 161041892
~ Link to approval letter - Link to letter - https://www.facebook.com/mikisroadtorecovery/photos/a.629447380524371.1073741866.344601625675616/1038145139654591/?type=3
BACKGROUND
My beautiful girl Mikayla loved life, the environment, animals, arts n crafts, science, gardening,crystals, dragons scooby doo and star wars. She was always outside exploring, playing with her dog or guinea pigs or fussing/making gardens. That all changed this year (2013).
Beginning grade 6 is a big step - workload is higher, bodies are changing, peer relationships are changing. With this new year came a number of big changes at school also due to the transisitioning of yr7 to highschool in Qld. This is a time most tweens struggle at the best of times without all these other goings on. By Easter cracks were appearing that all may not be rosy at school - why?
This journey will maybe finally provide answers.
Term 2 started rough as her science/media assignment had been destroyed (by outside events) and couldn't be handed in and this shattered her. This was the time our world started to unravel. She was reluctant to go to school and when she did I waited for the call to collect, as undoubtedly by lunch she'd be suspended for "not conforming". This rollercoaster continued as I reached out to school first then other depts and child mental health for help, support and guidance. By the middle of June Mikayla's body and mind could take no more :(
Monday June 10th will forever be seared in my heart. I was getting her ready for school when she collapsed grasping the side of her head, her face was droopy and her limbs non responsive. Being rushed to hospital being told they believe your 11 year old is having a stroke to this day still has me lost for words.
She was unable to walk or support herself. Extensive testing followed, good news was no damage, puzzling news no organic cause could be found. Her body could no longer take the stress of life so her brain converted that into a physical ailment. This is known as functional nurological disorder (fnd - now no longer a diagnosis). Dr said the trigger was school and for me to keep her away from stress :s
At this point one would think a health care /return to school program would be put in place - like what we do for other illnesses. But my expectation and reality were at polar opposites to each other. I felt like a ship that had been left unanchored at sea. We returned home with no support or guidance. As I watched her decline each day and have another 2 minor episodes I was contacting anyone and everyone asking what can I do?
Aug 22nd she had more tests done. And as by this stage I had lost my job as well I was also trying to get help to keep a roof over our heads. Finally after a week at my wits end I contacted someone at the hospital I knew and said I need help I have been trying to get help thru mental health, school etc and as much as they tried we were outta their league. They said they'd have a poke no guarantees.
Well things really started to shake an rattle after that. Within another week they had organised a joint meeting at hospital with her pead and mental health. That was the worst day ever that meeting - once again as I felt let down. They acknowledge she was very unwell, her tests showed her brain slowing (another protective mechanism), that she needs treatment asap but they unable to offer the supports she needs so will contact child safety to see what they can do, that without treatment she will become functionally disabled in the near future, and I should seriously think about relinquishing my care (yes they involved DOCs under the guise of helping) as she will become an even greater burden :(
Really aren't we in Australia? Back home I start searching for solutions, asking everywhere for help and sadly nothing was available, unless I won lotto and even then it would be limited. By this stage I was also looking down the barrel of homelessness. I was beginning to wonder what on earth am I going to do, how can I help her it wasn't a great place to be.
Then a miracle happened. After having a debate on AG's page about schooling systems and mentioning Mikayla's story I got a call on Fri 20sept from Mr C. asking for the full story, our current situation and then he says how would you feel about coming to Tassie as I confident we can maybe help her. By Sunday 22nd he had it sorted we were heading to Tas on the 29th!!
So we are at the end of 2013, wow what a year! I have decided for Mikayla's best interest to stay here in Tassie and work on plan B so we will be looking for a place to call our home and am heading into a New Year full of hope :) She will have an admission to hospital first of the bat and from there we can hopefully chart a course for her. (Still no plan July 2014)
And so here we now are on the journey to hope and recovery for the foreseeable future here in Tassie. This will be a long road but with love she will make it so thank you for coming on this journey with her and I :) As it is pretty full on I will update every few days so don't stress if no update just send love
Useful Links ~
⭐️ Giant Steps Tasmania
www.giantsteps.tas.edu.au
https://www.facebook.com/GiantStepsTasmania
Awesome program of education and therapy for those on the spectrum.
⭐️ R.A.W. - Rural Alive & Well
https://www.facebook.com/raw.tas/
They have been a great support to both of us since the floods and are a mate to rural folk when times are tough.
⭐️ Wonderland Retreat
https://www.facebook.com/wonderlandretreat/
A unique rural disability supported accomodation and therapy retreat that I highly recommended and Mikayla loves going to.
⭐️ Hawthorne Hill Farm
https://www.facebook.com/hawthornehillfarmtasmania/
Great supporter of Mikayla and yummy products of pastes, bikkies and jamls inc Mikaylaberry as well as scented candles to die for 😉
⭐️ My Relaxtion Place Deloraine
For both ndis an non ndis recipients ~ where Mikayla goes for healing and de-sensitising x
⭐️ FNDhope - rescources, guides, support groups
www.fndhope.org
⭐️ Page for Tasmanian e-School
http://education.tas.edu.au/tasmanianeschool/Pages/Home.aspx
⭐️ Page for intake for all community support http://www.baptcare.org.au/disability/tasmanian-services/Pages/Assessment---Baptcare-Gateway.aspx
** UPDATES **
** SEPT 2014
~ Results show unique chromosome disorder ~ duplication long arm chromosome 4q28.1q28.2 an deletion in long arm chromosome 6q14.1, so along with this her diagnosis are also general anxiety disorder, ? co-morbid ASD and a range of other issues.
** JAN 2015
~ they believe she is suffering from angioedema which affects her throat * awaiting to see a specialist
~ finance and funding are still issues but I am determined this will be a year of growth and opportunity for her and have a couple of things on board and in the pipeline to achieve this
** DEC 2016
* TADS assessment result is ASD (Autism) level 3 both domains
* We on move to Kentish Region ~ P.O. Box no longer in use
* Been a tough year with bushfires, floods and hospitalisations
* Ended year with a total of 11 diagnosis :o
* Crashed car just before xmas.
* Recieved notification she accepted to be a participant of NDIS
* Here's to a new year of supports and therapy she's desperately needed and new adventures and opportunites :D Thank you to those who have supported us through a very trying difficult year
** 2017 Overview
*We started our NDIS journey. Was a year of great stress, many debacles and not much else :( This part of the journey could be a book in itself :/
*I was flown to our capital for a back injury in March which left me incapacitated for a number of weeks.
*Mikayla had a number of hospital stays and visits, inc surgery, further tests, broken hand as well as usual appointments.
*She joined the Navy Cadets and is thriving and loving it.
*In October she turned 16 and we welcomed Teddy a ginger kitty to our family.
* For correspondence address is -
Please PM page for address
