Today we got to share watching our baby girl , 16 months old on 23 Feb 2021 take about 6 or 7 unassisted first walking steps today. It was a special moment at home on a Sunday, we’ve all been watching and waiting for. She has been cruising furniture and taking steps between coffee tableContinue reading “First steps”
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No time for me, the old me.
So I have realised lately, that I struggle to remember what it feels like to be in my old self (mind and heart) anymore. I think the 24 hour care cycle of my son through the night and the day; every day for five years has slowly led me to this point. I struggle toContinue reading “No time for me, the old me.”
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?”
Sunday. That was a very very long day
Sometimes we have a day which is lovely and we can cope we have good moments. Then we have days which are a daylight to bedtime fight and all anxiety with no calm or oxygen in between. Sunday was this kind of day. It was 4 trips to the park, pool and outside places, nothingContinue reading “Sunday. That was a very very long day”
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”
A Journey to Joy 