Kia ora tatou, my name is Marg Slater and I have a son Jack who is 18.
I'm Mandy and I'm mother to six year old Maia.
I'm Kat and I'm mum to four year old Ella.
Hey I'm Sonia and I am mum to eight year old twin girls Thandie and Inez.
He was put into special care after about two or three hours after
a very, very quick birth early.
All tests before were normal, quote unquote,
and he was sick, we were in hospital for a month.
Poked, prodded, intervention
told many different things, lots of maybes not really many facts.
Yeah it was very challenging to deal with the whole medical invasion.
It was about two years ago that I realised that something wasn't quite right with Nezzie,
that she was struggling just to be in the world and I honestly I felt like
I was losing my kid and I said that to a few people and obviously I said that to my GP
and it was kind of brushed, it was brushed off it was 'she'll be right it's just a phase'.
But as a parent you know. We finally went private and got a diagnosis
of Asperger's or high-functioning autism but then was sent away with no road map,
no 'where do you go next'.
She didn't hit normal milestones so she didn't crawl, it took her a long time to
get up onto her feet, she didn't take her first steps until she was nearly two.
We did a genetics test and she came back with this gene triplication and then I
think that's when I actually got quite worried about her future. We hadn't got
other children to compare her to, there's nobody like her.
Ella was premature, she was born at 25 weeks.
They'd said she's had this bleed, it's excessive
but she's basically lost half of her brain.
I took me a few hours to just feel this immense
grief when I left the room I collapsed in the corridor in the NICU and just...
I think I had my head on the floor, and when I went back to her bed space
and just saw her lying there,
I didn't matter if she had a disability or if there were challenges in her life,
we just moved on actually.
It was a full-time job for me
advocating for my kid and trying to find the right help.
A seven-year-old trying to jump out of a moving car on a motorway
you know and me grabbing her.
She wasn't just a naughty kid,
it felt like she was going to drop off the edge of the world.
She just stopped functioning really.
When Jack was that month in hospital I was told quite a lot of different things
and one in particular and then the
paediatrician a year later suggested he might be another syndrome, he went to school
a teacher thought he might be a chromosome 22 syndrome.
I'm not big on labels.
The issue that happened with Jack and I was they were so busy trying to label him.
All his conditions and his issues went unnoticed.
Being labeled was negative
and I wasn't going to have a continued negative experience.
My child has a disability that you can't see and I just knew early on we weren't
going to survive this without help and I couldn't find the right help through the
health sector I needed to form a squad, I needed people around me that could
support me and at one point I just sent a text out to my friends and I said we're
in crisis and I don't know how you can help but I just need you to know that I
might be calling you - sorry, and I'm just needing you in some way.
I don't know how are we going to do this.
For me wanting our child and loving our child
that was actually the easy part and that's what I could do and the
hard parts that were going to come it didn't matter because I loved her and I
wanted her and she wanted to be here too.
Don't beat yourself up, don't blame yourself,
it's no one's fault, this is just part of life. You think the worst-case scenario
and it's a shock but in my situation anyway I can say that I feel like Maia is
in a much better place at six than I thought she would be, much better place.
It's hard and you need to learn a lot and then sometimes you need to step back,
you just have to step back and go this is where I'm at, you love your child unconditionally.
You're on a journey that's unexpected
but there's beauty in the unexpected and you will find that.
You have to back yourself with how you feel about things and know that you do know.
But I have been deep in crisis and the benefit of knowing you're not going crazy
and you're not the only family going through this is immense.
Support and communities, that's what's going to get you through.
There's a fear of the unknown
and that is constant actually because there's new milestones that
might be missed or new experiences you can't really prepare for but it doesn't
matter if you're not prepared because you just take it as it comes and what
actually happens is you meet this amazing little person and they change
and evolve and that's so different from other children.
Ella has gone through this thing
and experiences the world in a completely different way and I can see
I can see that in her, and that makes me so privileged to be her mum and be
able to walk alongside her as she grows up because she just looks at the world
and experiences the world in a different way and it's a little bit magical really.