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?”
Tag Archives: specialneedsparent
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 meeting part 1
Even with a volunteer support person online, a tired grandmother at the house to mind the sick baby, my son at preschool and 2 months of preparation.. it was still a 4 hour meeting. We are not done, reconvening next week to go through another two more goals, social and cognitive. Also need to doContinue reading “NDIS meeting part 1”
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”
Refusing to walk & throwing house keys
My son has all these self harm frustration behaviours, first it was hitting us, then himself, walls, throwing, slamming, pulling my hair out by the roots (thats a fun one), now his own hair, hitting the dog and as of this week.. kneeling on floor and banging his forehead on the ground or the nearestContinue reading “Refusing to walk & throwing house keys”
today was supposed to be a good day
Today was going to be a really good day, or at least a good day. I have hope every morning that today will be a bit brighter or less challenging, that there will be more moments of smiles than anxiety or hurt. I was waiting for this day for a while as it had beenContinue reading “today was supposed to be a good day”
Friday nights
Friday nights is my favourite time of the week. I think everyone who works M-F loves Friday night. I’m no longer working M-F anymore due to the extended leave I have taken form my job that has been required to care for my son and my baby, so I am home most days in betweenContinue reading “Friday nights”
Tissues for your baby sister
Today, our son upon our request, willingly attempted to wipe his baby sister’s nose. She is sick, he’s never done this before. This is a happy little moment, a win. He took the tissue and smiled as he leant down and tried to dab her little wet nose, she was looking up at him wideContinue reading “Tissues for your baby sister”
No time for self care, but I started a blog
This will hopefully be the beginning of something cathartic, healing or just a really unusual way to start a personal journal. I don’t really know if I want to be writing this yet or what I want to write or if I will ever find the time. literally. But I know I have to doContinue reading “No time for self care, but I started a blog”
A Journey to Joy 