For years and years, months , weeks, days on and off, then a break, then days, then weeks we would try and encourage our amazing son to feed himself. He’s never wanted to touch food, hold food, look at food, be near food, never self feed. For whatever reason, I had to capture this nightContinue reading “Then all of a sudden, it seemed to happen”
Tag Archives: NDIS
The privilege of never knowing the ache of disability
When I see photos of people with different disabilities, invisible disabilities, para olympians, role models of people who have made it with a complex health or neurological condition, accidental disabilities or impairments, etc etc the list could go on… but those images of people who inspire me now, make me cry with a long lostContinue reading “The privilege of never knowing the ache of disability”
survival of one day at a time
when no one else around you or outside of your four walls, knows or has any idea, that each single day is facing a constant survival of one minute to the next. egg shells, recovery, meltdowns, breakages, spills, injury, tears, laughter, breathing, anxiety, fatigue, brief moments of still, then chaos and then eggshells and theContinue reading “survival of one day at a time”
Feels like a heartbreak.. is this trauma or anxiety?
my heart feels broken. i feel like a failure at everything and every day. is this trauma? is this anxiety? is this both? its not intentional, its just my “rested” feeling now. I get into bed, i have things to do all the time. i never ever stop. there is always a to do listContinue reading “Feels like a heartbreak.. is this trauma or anxiety?”
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”
A Journey to Joy 