Losing my confidence socially

You’d think as I grew more confident with raising an autistic son, I’d find more strength and feel more comfortable being able to talk about life and being around friends socially. I thought it would be that way. I’ve started to feel like I’ve got nothing valid to say or offer the world in anyContinue reading “Losing my confidence socially”

Protecting my son or over sensitive ?

Today I had probably my first major parental concern moments for my disabled son. I have had moments that are minor and more medical, this one was a red flag moment about his safety in someone else’s care. I’m still really upset about it. I think I’ve talked and cried and replayed it over inContinue reading “Protecting my son or over sensitive ?”

TWO sounds – “An-Chor”

This week we are finally hearing a few more unprompted and impromptu two sound words/communication moments… this has been a goal and we’ve been working on this for atleast two years, we’ve been working on more eat forever!! You can hear more and eat separately, but never said together. Single word, two sounds…”Anchor” is beingContinue reading “TWO sounds – “An-Chor””

Lodging complaints & who has the energy anymore?

So it appears everyone I have spoken to says our experience with the LAC (Local Area Coordinator) for the NDIS was wrong or should not have asked for the things or said the things she had, to me. Im told I should call the NDIA Quality and Safeguard Commission to lodge a complaint. That thisContinue reading “Lodging complaints & who has the energy anymore?”

Grief on top of grief

In addition to the daily surges of grief about our son’s life both now & the future watching him struggle to eat, breathe, sleep, communicate and play, the future for him and the huge impact on our own health & wellbeing, on top of that, I had one of those days which comes about onceContinue reading “Grief on top of grief”

Can’t sleep

Most nights I get woken up to five or six times a night. Tonight it’s quiet and I can’t sleep. I’ve gotten up twice to check both kids are breathing, not too hot and monitors are working. Today I saw my two children hug in the stairwell when I wasn’t there prompting it or tellingContinue reading “Can’t sleep”

NDIS plan review week

Anyone who has ever been involved in a NDIS (National Disability Insurance Scheme) plan review process knows that this is the most stressful and emotionally exhausting stage in the NDIS funding program. This is the week for us. I’ve spent nearly 6 weeks preparing reports, letters, invoices, quotes, referrals, general advice, feedback, medical and cognitiveContinue reading “NDIS plan review week”