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”
Tag Archives: coffinsiriswarrior
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?”
Is it Autism or another cause or just another symptom, diagnosis, opinion…?
We have had a really rough few weeks, things feel like they are spinning a bit out of control and the life we live is just moment to moment and solely based on how we manage our little boy. We live to make him happy, keep him happy, not upset him, keep him healthy, alive,Continue reading “Is it Autism or another cause or just another symptom, diagnosis, opinion…?”
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 ?”
When your ASD level 3 doen’t fit the model of the “ASD” world
We drove 2 hours each way in the car on our sunday to find a special new place, designed for kids like our son (ASD LEVEL 3) to play with other kids with Autism or special needs. He was screaming, kicking, moaning, crying, throwing his bottle, the mobile phone, hitting etc for most of theContinue reading “When your ASD level 3 doen’t fit the model of the “ASD” world”
First steps
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”
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””
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”
A Journey to Joy 