Category Archives: Uncategorized

Every choice seems like the wrong one

Maybe this is a normal thing for every parent or every mum, but why does it feel like every single day, every reasonably significant choice to do with your children’s health or education or happiness or safety, feels like its guaranteed to be the wrong one. Is this a sign of anxiety and PTSD? OrContinue reading “Every choice seems like the wrong one”

Then all of a sudden, it seemed to happen

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”

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?”

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…?”

Surely things have to improve soon? Medication changes and hysteria

Today was the second day in a row when I questioned whether I can keep doing this . Can we keep this up? One of us or both of us are going to break down. This is not sustainable. I feel so broken for my son. Why does he have to suffer like this andContinue reading “Surely things have to improve soon? Medication changes and hysteria”

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”