01/07/2026
I don't usually like to cross-share pages but I have just started this page.
It was originally about my journey being diagnosed with ADHD (like many other women my age)
We slipped under the radar as we didn't present as the typical hyper boy who couldn't sit still.
We were the anxious, eager to please, high-achieving, perfectionist, girls, who fell apart when menopause hit!
It has segued into a post about our life and how hard we have been fighting for help with our amazing daughter, and getting nowhere.
Please read. And share.
People need to know how bad the system is - and how the ones who need the most help can't get it.
We are shouting for help!
Thanks! šš©·
They say to ask for help when you need it.
Don't just soldier on and do it all yourself.
No one likes a martyr!
Well, I have been screaming for help.
For years.
No one is listening.
No one that CAN help!
This is why I am quiet. Why I am sick. Why I don't work some days. Why I don't reach out to see how you are. Why I fall in a heap.
Our story began years ago. If you know our family, then you know that we have two children (well, adults now, 22 and 24) who were diagnosed way back then with Aspergers and ADHD and anxiety and ODD and the rest.
We have been through the rigmarole of medication and psychology and OT and speech therapy and paediatric appointments... and in the case of my daughter, she was diagnosed at the age of three with Juvenile Rheumatoid Arthritis. So we added on ophthalmologist appointments and rheumatoid doctor appointments, and blood tests and hospital stays etc...
My son got the added bonus of nearly dying of Nephrotic Syndrome at the age of 6, so we got more hospital stays and more doctor appointments.
Fast forward to high school and we are trying to get our daughter through the higher years - she is seeing a paediatrician obviously, and the NDIS is being rolled out.
I remember specifically asking the paediatrician about the NDIS and what it was, and if we could get on it.
'Oh no', she says. 'It's only for those using lots of supports, you don't need it'.
As I had no understanding of what it was, I left it up to the expert and left it at that.
Many, many exhausting years later, I realised that my husband and I WERE THE SUPPORTS.
We had been doing it all and still were doing it all.
We were exhausted.
Our daughter needed so much help. She needed prompting for everything. For getting up. For breakfast. For showering. For going to bed. For turning off the light.
A timeline to get out the door. A count up or down for everything. And then there were the negotiations to do anything. We are constantly walking on eggshells.
Imagine being handed a live gr***de every day but not knowing when it will go off. So you tiptoe around all day ā you donāt dare set it off! It takes one instruction too many. One slightly raised voice, or the hint of stress or impatience in your voice for the gr***de to go off.
We are also our daughter's transportation everywhere. To appointments and activities. Or to get to the train station. We want her to get out and make connections and friends, so we do this. But there are still so so many appointments. It's hard to work around these.
And on it goes...
So three years ago we finally applied to the NDIS.
We were rejected.
Not enough reports.
Not enough proof that there was an issue.
Not enough proof that we were drowning.
It took another three years for me to regroup and get more reports. I had my own big health issues and I didn't have anything left to find the experts.
We got a Functional Assessment done by an Occupational Therapist - it was awful! I cried reading it.
We got our daughterās original Psychologist to rewrite reports to change the wording from Aspergers to Autism Level 2.
Yes, the NDIS acknowledged that Aspergers Syndrome and Autism are the same thing, but they can't accept her Aspergers diagnosis. She DID have an Autism diagnosis from another Psychologist as well, but that Psychologist wasn't the correct type of Psychologist.
The mind boggles... So in the end she has a report from a Clinical Psychologist. A General Psychologist and her old Paediatrition, all say ASD level 2.
Oh the pedants...
We submitted 20 reports and doctorās letters with the application. There was no room for the NDIS to move.
This was in March of this year.
We got the call a week or so later ā the application had been approved!!!
I nearly fell off my chair in surprise and happiness!! I actually felt hope for the first time in many years.
We saw the plan and level of support 6 weeks later.
Apparently, we have done such a great job of caring and supporting our daughter over the past 24 years, that we can continue to do so. The funding is so little that we might as well have none.
We asked for help ā and got shafted.
I am drowning.
I have nothing left.
So donāt say that we donāt ask for help.
We are screaming for it!
Our daughter deserves the chance to start her life! š©·
(And our beautiful doggo Shiloh just because!)
