Marie Martin: From Telecommunications to Warrior Mom – Transforming Autism Advocacy and Challenging Systemic Barriers

Welcome to Why Not Me the World?
Podcast, hosted by Tony Mantor, Broadcasting from Music City, USA, Nashville, Tennessee.
Join us as our guests tell us their stories. Some
will make you laugh, some will make you cry. Real
life people who will inspire and show that you are
not alone in this world. Hopefully you gain more awareness, acceptance,
and a better understanding for autism around the world. Hi,
I'm Tony Mantor. Welcome to Why Not Me the World.
Today's guest is Marie Martin. She's a former telecommunications profession
an alterned send warrior mom. Marie has been navigating the
complex landscape of support and future planning for our artistic son, Zach.
She has such a great story and it's just great
that she could join us today. Thanks for coming on,
Thank you for asking. Oh it's my pleasure. I'm really
happy our pathsive crossed. One is because we're both an
advocate for autism awareness, acceptance, and of course understanding too is.
I'm hoping that the story that you have to tell
on my podcast will resonate with others it can help
them as well.
I think that's brilliant, because you know, we need more
people like you, and I like you. I didn't intentionally
step into the sand arena. I knew nothing about disability
prime to having my son, and then all of a sudden, heah,
I've got this bundle of joy that's quite a lot
different to all the babies and your children. And it
through me into turmoil. I got nobody to talk to.
I didn't know what was happening really, and it was
it was really scary and quite isolating. Sure, I didn't
start out to do any of this. It's just evolved
really through the deficits of the system letting my son down,
the fight for education, and thinking differently, doing things in
a different way in order for him to not only
thrive but survive at times. So yeah, I don't think
any of us set out to do this intentionally. Maybe
it's our quest.
Yeah.
Now you say your son is artistic. How old is
he now?
Okay, Well, he will be twenty one in July, and
he was diagnosed at three years old. Okay, And that's
not just autistic, is ADHD with a Actually, his autism's
got a demand avoidant profile, So lots of people refer
to it as PDA, which is pathological demand avoidant. So
a demand of voidant and type profile, which is a
very tricky to manage. Everybody refers to it as PDA,
but it's not in the medical books, so they have
to say with the demand avoidant ter profile and severe anxiety,
trauma and tics. So he's got quite a cocktail of
disability is going on.
When I first started my podcast, I was talking with
most people that were autistic. In the last several months,
it's evolved into what you just described. A lot of
people are finding out that they're ADHD and autistic and
they're getting that combination where they're having a struggle on
both sides. Now your son's got ADHD and autism along
with the other things. My question is a lot of
people have told me that the ADHD will pull them
one way, the artism will pull them the other way.
So how do they cope with that?
You're absolutely wrong. It does, and it also not only
pulls in opposite directions, And Myrceola explains it as if
it's almost got two sides to him. There's one side
that wants to comply, and there's the other side that said,
there's absolutely no way you're doing that. And actually there
are going to be penalties. If if you do that,
I guess he's probably in a better position to be
able to understand it because actually lives it. But yeah,
very conflicting. And what I also found was, I mean,
way back when and twenty years ago, when we were
looking into the early stages of what was going off,
there was very little known about everything, and looking back
from what I know now to what I knew them,
which was nothing, I was being led down the path
to teach him in ways that actually were inhibiting his growth.
And because if you deal with a PDA type profile
in the typical autistic manner, you get a completely different reaction.
We've learned a lot, and obviously now is at an
age whereas he can sort of give me feedback. But mon,
why did you say that? Because this is what reaction
it had on me. I kind of already woked it
out for myself by then. But I mean, I'm always
a big believer of parents are the experts on their
own children, and the best experts will actually turn around
and tell you that. And the best experts I've come across,
so the ones with lived experience, because they just get
it right.
Now, you're talking twenty years ago, when ADHD and autism
wasn't very prevalent within the community of people talking about it.
It was the big unknown. So with you going through
that at his age of three, was there.
A big unknown where people really couldn't diagnose anything. Did
you get some people that actually kind of understood what
he was going through that could help you?
Yeah, I would say to that, hardly anybody understood anything.
And I guess that's where the battle for Zach's right
to support and understanding started. I mean, the very first
time I went to the doctors to say, you know,
I'm a little bit concerned. I don't know mathe. My
child's just different. He's doing this, he's doing that, He's
not doing anything of the normal neurotypical. I don't like
the word normal, but you know, sometimes we have to
make bathrooms to it, right. Yeah, friends who've got neurotypical
children and seeing nothing worked. The average everyday parenting things
just didn't work. And I'd read up on an awful
lot by this stage, because I'm a person if I
don't now making my business to try and know, and
I just keep reading up until I do find the answers.
And I read something that was regarding autism and obviously,
but then the internet was in real infancy, so knowledge
was scarce. When I went to the doctors, he just
turned round and left me speechless. Actually, he just turned
around to me and said, well, you know, if he
was autistic, it's not like I can give you a
pill for it. So I don't know why you're here.
And I was like wow, And I can remember just
feeling completely and utterly flawed. Literally took my breath away.
I can just remember saying to him, of course me
being me because obviously my bid I had a career
before I had sech so I'm not really backward at
coming forward with sort of comments. I just just turned
around and I just looked at him and I said,
had a pill. I wasn't expecting a pill. Probably a
point in the right direction, a bit of guidance, some understanding,
and a bit of support was probably what I'm looking for.
I wasn't expecting a pill. But I can see I'm
in the wrong place, asking the wrong person. But just
do me a favor. Don't talk down to me like
I'm an absolute idiot, because unfortunately for you, I'm not right.
And I remember just going home feeling a complete loss.
I didn't know which way to turn, so I started
researching again. Somewhere I found this information that just it
was almost like a tick box, and my son ticked
every one of these features. And I remember ringing the
health visitor, sobbing down the phone because I'd already reached
out to the health visitor to say something's different. I'm
not sure what, but it was, well, you know, we'll
get to see you in the next couple of months
when you come and have your assessment. And I rang
sobbing down the phone. And I just have this horrendous
experience with the doctor. I'm absolutely reeling from it. Do
some more research, and I know now he is autistic.
I found this information and he just fulfills the criteria.
He ticks every box. And I need you to come
and see me quickly because I'm completely and utterly, well
just devastated. I just felt alone, confused, scared.
Well that's understandable.
Because nobody who I could speak to could give me
any answers or any reassurance really that things were going
to be okay.
Sure, I can see where that would be really scary.
So now as he grew, did he have any issues
with the school system at all. This seems to be
one of the biggest issues I hear from all parents,
no matter where they are around the world. I hear
where a lot of schools just are not prepared for
artistic people at all. Yeah, so how did that affect him?
And of course how did it affect you?
All I can say, Tony is it affected absolutely everything? Sure,
right from the very early stages. I think in pre
school we had a really good infant school who appeared
to understand and get it, and it just got harder
and harder.
Okay, we had an.
Awful court case thrown into the situation where they didn't
understand either. The solicitor didn't understand, so they were making
decisions that were harming my child right and actually pointing
the finger at me if I spoke up because I
knew it was going to harm him more. It wasn't
going to work. Sure, the more or less alienated me
from my own child, and I guess that's looking back,
that's where the trauma started, right from education. And the
more I've kind of dealt with it, the more I've
looked into it, and now I've become send warrior on
making a difference on Twitter in the last couple of years,
the more I've realized that teachers aren't trained, they're not equipped. Right,
have fantastic laws over here in the UK, the Children
and Families Act twenty fourteen, but things haven't moved on
and there is no accountability to the law, so everything's twofold. Really,
there's no accountability to the laws. And also people aren't trained,
so professionals who are doing in the jobs are going
to understand autism or how to deal with it right.
Just recently, you know, it's gone even a stage further
because the government are now put in. Our government are
now putting into and planned something called safety involved because
the local authorities aren't coping with the amount of money
they're spending on send. And we have something called an Education,
Health and Care Plan over in the UK which goes
from when the child zero to twenty five years old,
which should cover everything that they need. Is basically a
passport do their support, whether it's education, health, social care, physical,
it's all documented. It could be fantastic and when they
released this we thought it would be fantastic, right, but
there's no accountability to fulfill in the document or very
few people know how to do a good health and
education plan right, and if they do, the local authorities
don't want to go health and education plan because it's
a legally binding document and it's going to cost them money.
So the education thing is an absolute huge thing for me.
Well, that part is very important, especially in the child's life.
It's quite terrifying because just going back to the safety valve,
the government have now offered local authorities that are in deficit
to sign up to a safety Evolve contract. Okay, what
they're not telling everybody openly is that the local authorities
have to sign a contract to say they will reduce
so many EHCs, they will reduce so many and so
much of the content within EHCs et cetera, et cetera,
or they lose the ability to be able to access
this Safety of All fund, you know. So that just
tells me that send provisions just it's already cut to
the core and it's just going to get worse. So
I've been running sessions on Twitter or of sharing the
loaders on unpaid care with those who get it. Okay,
the live sessions, people, come on. We have guest speakers
just literally trying to fly the flag, sure, because I
know how isolating this journey is, and I do intend
to make a difference. It's a hard slot, right. You know,
a lot of people will help, they'll stand alongside you,
but it really needs somebody to join forces. I'm in
the process of setting up community interest company and to
look at independent companies to help me push this forward,
to run more sessions, to empower parents right, just to
help them, because I'm one of them, and I've been
in one of them for the last twenty years, and
it's pushed me and mysel to places where neither of
us want to be right, and the education system doesn't help.
There's so much parent blame and I've experienced that myself.
Well you just said, I've heard hundred times that they
blame the parents rather than what's going on. How did
you find a way Because your son is getting older,
he's going through changes, he's hit in his teens, pubity,
formonal changes, just life in general that would affect the
average neurotypical person, but now you're having those things go
through your son who's autistic and ADHD. How did you
find a way to cope with that so that you
could really educate some of these people that the parents
aren't the ones to the blame. It's a situation of
where the parent and the child have to grow together
and have to have help and support in order to
blend into society so that they can take and contribute.
Because it's well known that just because your autistic doesn't
mean that you can't contribute and can't do things. But
people have this misconception. So how do you approach that
so that you could take and let people know that
this is what's going on, this is what needs to happen.
And some of this is happening, but we need more.
Yeah, I guess my solutions and my path came from
when we hit a crisis situation. So we tried mainstream,
we tried special units, we tried government funded independent schoes.
No one could meet his needs and it got to
a stage where he wasn't able to access school, he
was being physically sick if he was there, it's spent
years after school. It was horrific. And then I always
have to say to deep breath when I talk about
this bit because six years ago he and there's a
trigger warning come in here for people. Six years ago,
on the way home from school, I mean, I knew
it had got bad, but I didn't realize it got
this bad. And he said, there's something I've got to
tell you more. While I'm driving along. I said, I, yeah,
that's fine. You know you can talk to me about anything.
And he said, well, Marie, sorry, And he said, Mom,
I know it's law that children have to go to school,
but I just can't take it anymore. And I've been
looking at ways secretly to end my life.
Wow, that's a really tough thing to hear.
And it's just the worst, worst thing.
Yes, it sure is hard to hear six years later.
Sometimes I can talk and I can say it. Other times,
like today, I'm struggling a bit with it. Sure, we're
just pulled into alvines and I said, you never go
You're never going back there again. Don't worry. We'll think
of something. Well, well we'll have to do something differently,
we'll think of something different. And I just thought would
come to the end of the road. To be honest, Tony,
no which way to turn?
Sure?
So anyway back to more research, more bedtime reading. At
three o'clock in the morning, when you're that stressed, you
can't sleep, and I came across something called a personal
educational budget, which was basically something that I could apply
for to the local authority which would allow they'll only
do it as an absolute last result and everything else
has failed. But everything else had saled for us at
this stage, and I wanted him to live, absolutely, and
they had personal educational budget was a way for me
to be able to apply for an amount of money
to meet everything that was in this education, health and
care plan, so is therapy, schooling and everything. So I
spoke to them about that. Obviously, the backing from a
psychiatrist Anna, who was absolutely fantastic. Don't know what we
would have done without Annah. It was amazing. But again
the drop off the face of the earth when the
child turns eighteen here and suddenly nothing right. So and
I remembered, I thought, I've got to do something nice.
I've got to stabilize his mental health somehow. And I
remembered when that was eight years old, we'd attended a
career's day. Okay, he'd asked a question a question to
this company called Costaine and this man called Richard Paddy,
and they weren't able to answer this technical question, and
it was just about a bridge on a motorway and
footing's being different. And they wrote to us a couple
of weeks later, you know, we don't know the answer.
We will get back to you, and they did. And
I remembered then giving as an open ended visit, which
I had offered to the various different placements since then,
and nobody had taken them up on the office. So
I thought, come on, Marie, be brave, pick up the
phone ring Costain head office and see if he still
works there. And he did, and they popped me through
to one of the guys mobile, Chris Hyde, who contacted Richard.
Richard contacted me, did the most fantastic VIP day, which
absolutely turned our lives around. I can't tell you how
much it turned our lives around.
That's great. I tell people to always keep moving forward.
You never know what's around the corner that can help you.
That one visit turned into so many more because they
realized what fantastic brains I could got. His special interest
is photographic memory, how it can hyper focus and all
of those things. And then we started to regularly. That
one visit turned into lots of different visits, nice loads
of visits for the next five years based on back
special interests, and then we wanted to get into the
electricity transmission because that's sex of a special interests. Loved
electricity pilon since he was three years old and had
only two words at that stage. Okay, and before Christmas
and we did lots of visits. The construction people ended
up getting us into the electricity transmission and I did
it via networking on LinkedIn, strangely enough, and I showcased
the visits and put videos on and photographs and write
ups thank you to the company in the hope that
people would reach out, and they started.
To that's nice.
And then someone reached out and took us into the
electricity transmission industry. And Zach's like a celebrity now within
the highways and the electricity transmission.
That's just so good.
I mean, it's just in a placement before Christmas with
National Grid and he had the most amazing testimonials because
that can only take in information which is pertinent to him,
which is of interest to him. He said, my brain
just does not take in. But it's very self taught
and with the personal educational budget, he got everything. He got,
the therapy, got the independence, he started get the academic studies.
But unfortunately again after all that, the local authorities withdrew it.
It was just formal complaints after formal complaint which turned
me in to send worry them all because I thought
I'm not having this, you know, I went to press.
So that's when the campaigning all started, and you know,
to tell people that you might think you've come to
the end of the road, but find your try reach
out to people are going to help you, because if
you can just find those people. I mean, don't get
me wrong, it hasn't been easy and I had to
advocate very hard that sure, and even the people from
these companies are saying you shouldn't have had to work
so hard. And I'm still having to work hard. Right,
how can it be that you've got this young person
twenty years old that knows probably more than anybody within
national grid that we've come across, even people who've been
there for thirty years, right, and still it's difficult to
try and get them on a proper lengthy placement to
move into employment. I mean, I did want to mention
Morrison's Energy. They were fantastic last summer. They reached out
and they've wanted Zach since last summer they said, we're
not ticking boxes. We see the value. They're an amazing company.
They were lots smaller than National Grid, but there's still
a good sized company. They wanted Zach to go and
work within the computer assistant design department.
Okay, but Zach's.
Zach's Thatch's Zach, and Zach loves the concept and the
overheadlines transmission, and to be honest, it's really really gifted.
You know, it's just perfect for somebody to go trailblazing
to do something differently because he hasn't got the entry
level studies. But hey, these companies need to stop ticking
boxes and they need to and change their entry level
and make accommodations and do some bespoke things for feld
people like Zach because they're amazing and there our future.
But they are never going to go down the traditional
channels and the traditional route to employment. We just need change.
And you know, the people who've helped us, Richard and
Jimmy and people like that, have not only given Zach
a way to get his dream, they've also given me
a voice to be able to help thousands of other
people who into the sessions and reach out to me
because I'm able to empower them, bring them together, and
let them know weekly that they're not on their own.
And our story has just given so many people hope,
Tony where the thought there is none a bit like
me when I was sat there thinking this is the
end of the line. Now, I don't know what to do,
and I just consider myself lucky the fact that I
was able to talk to him in turn to me
because I hear so many horror stories and I've got
personal friends who weren't so lucky. Their children didn't tell
them and I can't begin to imagine how that feels.
So I'm going to keep going no matter what, and
that will succeed no matter what. If I have to
sell people down the river, then I will do because
I feel very, very passionate and we need change.
Absolutely.
I've done a couple of episodes that's focused on Unfortunately suicide,
A lot of people do not realize that it is
the second leading cause of death among artistic people worldwide.
Yeah, so you're right, it definitely needs to change.
Yeah.
With that said, from what you've been talking about, even
though your son was going through a very tough time,
this is truly a success story. You started out with
a lot of issues, you struggled, but bottom line is
you found a way to get through them. Now a
lot of people are finding that he has a lot
of talent and he can figure out a lot of
ways to get things done. Because of that, you became
an advocate, which is a great thing. So now how
do people contact you so you might be able to
help some of them get through some of the things
you've been through?
Okay? Well, and the main platforms that I use. My
main platform is Twitter, Okay, follow me on Twitter, send
Warriam and making a difference at Martina Marie and I
try to help wherever I can. I've now got just
short fourteen thousand followers literally in a couple of years,
so I can't ret onto everybody individually, sure, but one
I hope you do is to grow a platform, right,
to grow a company where we can make that difference together.
But I have worked out, Tony is that there's lots
of people out there like me or similar to me,
who've had careers, who've got skills, and they're all being
wasted because the system doesn't look after their children. They're
unable to work because the children don't go to school,
so they have to stay home and look after them,
and it just changes everybody's life, right. You know. The
sessions are another way. They're all online, sharing the unpaid
care with those who get it. We have guest speakers
on so you know, we have education solicitors, we have
people talk about disability, we talk about current topics on
Twitter that there is an army of it. We've created
a nice community there, so for anybody who's feeling lonely,
they just dial into the sessions and you know, the
comments come back. Wow, I've found tribe. I feel at home.
I don't feel alone anymore, and I think so much information.
It's impossible to deal with everybody individually. But if we
do power people and point them to the websites into
the links that they need, then that is serving a
high majority of people. Obviously, A help individually wherever I can,
but there's only one of me, and obviously, you know,
I've also got Zach to kind of look after and
advocate for and and do the visits. I'm just hoping
to grow it. We just need to get maybe a
couple of people on board who will back us and
work with us. Just to make that difference. So if
anybody's listening and anybody wants to help us, then that
would be amazing.
Okay, so you're standing on a platform, you're speaking to
one hundred people, a thousand people, whatever the number may be.
What is it that you would like to tell them?
Don't give up, Listen to your gut feeling. You're the
expert on your own child, and if necessary, things your way,
do things differently, revolve their education or their lives, connect
with them through their special interest. There will always be
one in there. It's just a case of finding it
like I did, and then building things around that, because
you'll get engagement if you do that. And just don't
lose hope. And even if you think you've come to
the end of the line, take a bit of time,
bit of self care, whether it's ten minutes to have
a coffee, a quiet coffee, a bath, whatever you need
to do. Tomorrow is another day. It's never the end.
Just don't lose hope. It'll be hard. It's a marathon,
it's certainly not a sprint. Won't be easy, but it
will be worth.
It, sure. And I asked that question a lot. So
one of the big things that you said is that
every parent knows their child better than anyone else. And
I think that's a huge, huge statement that needs to
be resonated among all parents because that is so true,
they know their kid better than anyone.
Yeah, it is, it is. That is the mission statement
and the word hope.
Absolutely.
So is there anything that you'd like to touch upon
that we may have missed. We've covered a lot of
great things in this conversation.
Yeah, No, I just just the fact that it's been
a constant battle, and you know, the pair of blame
has to stop. Yes, parents are now getting too frightened
to reach out and ask for help because what happens
is that sometimes social care will get involved and start
pointing the finger, and people are frightened of losing the children, right,
And it couldn't be that way. They need help, they
need supporting, right. We even get whistleblowers come on our sessions.
You know, one social worker in particular said it was
cheaper for a local authority to adopt the children out
and to put a good support package in place. Yeah,
that it just can't be right, And I think, yeah,
just keep doing things your way and also treat parents
as people. Right, we are individuals. We're not mum. We
might be Zach's mom or John's mom or whatever, but
we've also got an identity. We don't need blaming. We
already beat ourselves up wondering if we're enough, whether we're
doing enough, whether we know enough. We don't need any
help or well, we don't need any help with blaming
ourselves because we already ourselves all day, every day just
to keep going. Really right, I've really enjoyed I've really
enjoyed talking to you. It's been lovely just to do
it completely off the cuff and just chat naturally. It's
just been a battle for twenty years, and it's exhausting, Tony. Yeah,
I can help a handful of people or even one person.
You know. I thought that when I was doing the sessions,
if I can help a handful of people, then I
will have done my job. I will have helped somebody.
But do you know what, sometimes we get a thousand
playbacks on our sessions, so we're helping a lot more
people than what were originally set out to do. And
actually this is just the start of my journey.
Yeah, and it's a great journey. That's kind of what
I think with my podcast, if I can get one
person that hears something and it helps them, then that
is definitely a win. It's all about information from people
like yourself and others that have gone through things, and
then hopefully it just helps someone along the way.
Yeah, you have to do what works for you, don't you.
And you know when you've met one autistic person, you've
met one autistic person.
That's said to me on just about every episode.
Yeah, it is so true.
Right.
A lot of the training is quite generic, and sometimes
you know, I've bought pas into work with Zach and
they're just not got there right understanding to be able
to deal with him. So in the end, I've fetched
people in who I just thought that but actually understand that.
Yeah.
I had a comedian that came on my podcast and
he told me that he used his comedy to help
break those areas. He had this girl, she didn't like anything.
He sang her what he called a stupid little song.
She remembered it and it made that connection. So you
just never know when something like that can just happen. Yeah,
So that just shows you never know what the connection
will be, but when you do find it and it works,
you just continue so that it helps the people that
need it.
Just finding that key, finding that thing that works, finding
the key, because if you can find the key, you
can a lot. The child or the young bestent, but
we need more therapists to find big instead of trying
to fit them into the box. Children are never going
to fit into a box. I've never fitted into a box.
I'm never going to fit into a box. I don't
even want to fit into anybody's box. Needs to be honest.
Yeah, me too. Well, I really appreciate you coming on.
Thank you, take care, and thanks again.
It's been my pleasure.
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