Welcome to the Tribe...and our motivation
Why do we do this?
Is this picture to the above familiar?
Is this where you are now? Overwhelmed? Confused? Frustrated? Drowning in information that isn't making sense? Ready to forget the NDIS and just try to struggle on alone?
That feeling helped to inspire us to help others in the same position.
Leon - Our motivation...
This kid above? - that's our Leon. Leon is the reason that the Tiki Tribe all started. Leon has Autism level 3 and Intellectual Disability. He is a funny, sunny, happy individual who can get a little 'hangry' if we don't keep feeding him!
Leon's superpower? He's a word man. He can spell almost any word - university level - photographic memory - can write down movie credits from go to woah without looking. He can work out anagrams and frequently beats me at our Word game app competitions. Leon started spelling words with fridge magnets at 2 years old. "Huggies", "Jatz", "Dreamworks".....(can you see a theme here?). Leon can't actually comprehend most of these words, but loves his letters.
He wasn't always this happy though - it has definitely been a journey for him and for our family.
Leon has struggled with communication, emotional regulation, sleeping, aggression, behavioural issues, stimming, anxiety, sensory issues, dietary issues, social interaction, learning difficulties and more.
When the NDIS first kicked off, I remember feeling completely lost, daunted and frankly, angry. Why wasn't this easier? More clear cut? It took me two years before I finally received his NDIS Plan.
Okay...cool... I have a Plan! Ummmm.....now what do I do?
I still remember that feeling. It struck me how many parents and Caregivers were out there feeling the same thing. Navigating the NDIS is NOT easy. So many rules and regulations, so many Providers promising the world and rarely delivering, overworked LAC's (Local Area Coordinators) trying to meet their Participant needs under tough KPI's. And then, just when you think you have a glimmer of understanding, it all changes!
So why do we do this?
For this reason...