Kia ora tātou my name is Marg Slater and I have a son Jack who is 18.
I'm Mandy and I am 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.
It's a full-time job actually dealing with the services around looking after
and making sure your child is getting what is actually out there,
nothing even more than that, just what is available to your child.
The funding aspect is really difficult because no matter what you have,
you always need more for them
and it's not a want or desire, you need more for them.
There's not enough funding to go around and then even the applications to get that funding
you have to put your child in this really negative light and
I'm down on it for weeks, I feel really depressed and I hope that she never sees
these applications that I've written her, about her in that way
and that's what's wrong with it.
He had an audio-graph, you know a scientific document,
saying yes he reached the criteria,
we still had an 11-week process, 28 people touching his application,
one of them met him, it's a phenomenally inefficient system around the process.
We had two years in from the first appointment I made with the GP
who listened to me and said,
'Hmm not sure what to do about that, but let me text you.'
Didn't get a text (laughs).
So many psychologists, OTs, psychiatrists, paediatricians, OTs,
everyone, they all admit that the system is just so fragmented.
You're in a really difficult situation and you're scared and you can't even
look into the future because it's just too hard sometimes, I'm still like that,
you got to live day by day but as your child gets older you have to
look into the future,
you've got to think, well what if I got run over by a bus?
What's gonna happen to my son? I've got to put those safety nets in place.
You do need to be your child's advocate, absolutely and talking to other mums
who've got children with disabilities often something will just come up in conversation,
oh did you know about that? No, I don't know about that, did you know about this?
And it's frustrating because you expect to be told all these things by your paediatrician, by your doctor.
Asking questions, just ask, ask, ask,
if you've got a problem with something, whether it's a behavioural issue, seek out help.
My advice to parents is, and this is hard because I know that a lot of very tired parents
will be hearing this that have just been fighting so hard, but
you've got to keep fighting and find people that can be advocates for you.
Bringing someone else in that's an authority, that is on your team makes a
world of difference, if you can avoid it try not to fight alone,
it's not sustainable.
Honestly the best places I've found help is on Facebook,
is groups and talking to other parents.
Look for a community of parents who have been or
are going through what you're going through because they will have tried
various things, they have so much knowledge, we spend our nights Googling
and you know cross-referencing different procedures and you will save so much
time and energy because we've made a lot of the mistakes for you.
Also to say you are not alone,
look 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.