Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
I quite like this idea of getting up at six
every morning, so my grandson comes and wakes me up,
and it's really paying off. I'm being incredibly productive. Isn't
it funny how something as little as a regular alarm
system because he's begun my alarm clock and we can
have that effect on your output. I mean, I normally
(00:21):
just let myself wake up, and sometimes I mean it's
sort of anywhere between five thirty and eight thirty, and
I guess therein liesa problem. It's too random. So I'm
really intrigued about that. Today I might decide when, when
and if he goes somewhere else, which I really don't
want him to do. I may decide that I'll set
(00:42):
an alarm. I think that's a really good idea. So
he's really good. He's been a little gem. We had
a lovely weekend. I think he's getting used to being here.
It's very difficult for autistic people and autistic children, particularly
to become comfortable without a very set routine, and I
(01:03):
think we're really starting to adapt now. So he woke
at four point thirty am, which is way better because
when he first arrived here, he was sort of waking
up about one in the morning, perhaps even earlier I
can't remember. Now, Yeah, he was up when I would
go to bed, he was already awake, and he'd be
(01:25):
still awake when I got up in the morning. Really bad,
not good at all. And he really didn't like that.
He didn't like the fact that he was alone all night.
He doesn't want to be alone. This is a quandary,
I think for a lot of autistic personalities, because you
do feel loneliness and isolation, but you don't really like
(01:47):
people very much. And I really fit into that category,
so you know, you don't want the overload of you.
We'd be sort of happy if a friend was just
sitting in the corner and being quiet. Oh and you
know people don't want to behave like that, do they.
That's not normal anyway. I'm writing a journal for him,
(02:10):
which I send off to the social worker each day,
or well I let them off the weekend. They've got
a big long one today from over the weekend. And
it just really helps me actually writing. It helps me
validate the you know, the systems that I'm putting in place.
It helps me understand what's getting better and what's not
(02:33):
getting better. Because the thing is, when you're busy and
in the thick of it, it's quite hard to see
the wood for the trees. You're kind of you know,
you forget the little milestones, and there are so many
of them, and you tend to over emphasize the sort
of negatives. I think, and what I'm finding is that
my grandson is really really responding to constant positivity, and
(02:59):
you know, all of the things that I've put in
place are really really paying off, and this home is
a place of contentment, you know. I mean, I did
have to give up lots of ideals, ideals of you know,
how a child should be in terms of cleaning their
teeth and washing and going to school and all of
(03:20):
these things. These I had to let go of these
things very early on, because they can become you know,
a sort of a prison, if you like, a prison
of ideals, which you know, somebody like my grandson can't
function in because he's just not at that point yet
(03:42):
that these ideals are something to think about to move
towards for the future, and that's what they are. That
they're not there's something to be attained. They're not goals
that are due for immediate success. You know, tomorrow or
the next day. We're talking about months here, Yeah, maybe longer,
I don't know. So yeah, I'm really finding that interesting.
(04:05):
So I think I would recommend actually if you're Because
I did join some Facebook groups and they kept messaging
me saying they'd like me to join the discussion. I
just thought, no, now, I don't want to be discussing
things with people. I'm quite happy on my own tap kid,
so I sort of declined all of that. But you
do see a lot of people in desperation really for
(04:28):
some sanity, because they're looking after children who are you know,
whose autism is much more noticeable or severe if you
like that word, I don't know, than my grandsons. So
people are beside themselves. You know, it's a really difficult job.
And actually there's quite a few parents I noticed saying
(04:50):
that they're lonely. And if you go to register as
well and have a look there. But these communities they
may or may not help you. I like to just
observe from afar. I don't want to get involved, and
I haven't got time to start chatting to people, you know,
because you know, there's there's all sorts of other things.
So I have set up the autism the new autism site,
(05:10):
autism caravan site, and I'm in the process of trying
to persuade someone to be a trustee, but I don't
think he's going to buy it. And it's actually quite
hard to find trustees, especially unpaid trustees. I mean, I
guess if you're going to pay them. In the big
world of business and charity, you know, I don't want
(05:33):
to say proper charity, but you know, big organized charities
trustees get paid when you're starting from where I'm starting,
it's totally voluntary. And that's where one of the problems lie.
I can't I can't say, you know, to somebody, can
(05:53):
I you know, I'll pay you five thousand pounds a
year just to be the trustee or some of these
big places that get hundreds of thousands, you know. But
I can't say that. I'm having to say with your
you know, you need to be a responsible party. You
do have a casting vote, and you're not going to
get paid. And you know I was saying yesterday it
is a responsibility. Actually it is a position that mustn't
(06:18):
be abused. How can you abuse a trustee position with
if you're not getting paid well. For example, you could
bring my charity, well, I don't suppose it's mine, is
it would be ours our charity into disrespect. That wouldn't
be good. I'd be so you know, I'd be horrified
(06:40):
if if that occurred. What would happen if I had
somebody on the board of trustees who was, you know,
doing horrible things you know, in their private lives, do
you see what I mean? Or if they went to
prison stuff like this? You know, I'm thinking about this today.
(07:01):
It's not something I've ever had to think about before.
It's like, oh right, yeah, okay, what if they're bonkers
and always getting into some trouble or other? You know.
And if you think about famous people, who would you
want on your board of trustees? Would you want Katie Price? No,
(07:24):
she's got a cocaine habit and she's addicted to flip
fillers and boob fillers. No, you wouldn't want that. It's
going to look bad on your charity. It's bad enough
that I've got a neck tattoo. I keep thinking that.
I keep thinking, shall I wear a high necked jumper
when I do charity related stuff? Well, I can't do that.
That's not going to happen, and lots of autistic people
(07:47):
have tattoos, so I'm not going to worry about whether
my presentation is suitable for my charity. I mean, I can't.
Once you've got tattoos, you can't. You could, but I
wouldn't watch it. I love my stuties. But do you
see what I mean? These things are Suddenly today I'm
being all, you know, this sort of person that I
(08:10):
never thought i'd be, kind of vaguely judgmental, judging people
is suitable or not suitable. That's something that I haven't
really in my life had the focus upon because I've
always been very much an underground, free living bohemian artist musician,
(08:33):
So none of those things have mattered, you know. And
also to a degree, working in fashion, you don't have
to really worry about stuff like that because there's an
expectation if you work in any of the arts, you
will be a very creative individual in your look and
your personality. But there's creative and there's destructive, isn't there
(08:54):
there's creative and this rude, there's creative, even the stupid,
you know. I mean, suddenly I'm thinking, well, I don't
mind having someone creative but as long as they're not stupid, rude,
batshit crazy or you know, criminal. And actually, when you
(09:16):
start thinking of these things, you start looking at your friends,
and I mean I don't have friends. I did ask
my friend who's helping me set it up with her advice,
and she said no because she's already on a lot
of she's trustees of too many other things, and it
would be a conflict of interest because she also applies
(09:36):
for regular funding. I think I don't know if that's true.
You know, it's the other thing about setting up a
working group to fundraise for the autism Caravan. You know,
I haven't proved myself yet. I only set this up
(09:57):
last week. So will I be able to you know,
this is what people will be thinking. Well, she doesn't
have a track record, she doesn't have a history of
working with charity. I have a little bit because I
was fundraising at the start of the year for the
music charities. But it's kind of a bit different. It
(10:17):
wasn't you know. I mean basically it was an eBay
shop and I donated. It was all, you know, quite
above board, etc. But yeah, a track record for creating
something that has legs, has longevity is not going to
fail at the first hurdle, has an online presence, all
(10:39):
of these things. I don't have those yet. Yes, I've
just created the app and the website and stuff, but
you know, I'm literally two weeks in, so it may
be guys that I can't find a trustee. And if
that's the case, I will have to think about other
ways of achieving my goals privately through business actually setting up,
(11:07):
you know, a better business model, so that I can
privately by myself, not with lottery money a van, and
I mean that's much more doable, isn't it. Anyway, I've
sort of tooked myself out of the van because the
biggest problem is I'm only allowed one parking space here
(11:28):
and I wouldn't be allowed to park a van unless
I got rid of the car, and then I wouldn't
be able to you know, very mum around. That's why
we got the car. The cars needed. We have to
do all her shopping and stuff. So I thought, well,
it's also expensive, so there'll be this huge van sort
of parked somewhere, accumulating dust, not doing very much all year.
(11:53):
It's not very cost effective, is it. So I thought, well,
I'm a driver. I can drive vehicles. I can drive
a luten We I say I can, I mean I don't. Theoretically,
I've got a license to Honestly, guys, I can't wait
to drive a loot and I'm absolutely excited about that time.
(12:14):
But the bell tent can fold up into a very
small It's about a meter long, and it's quite heavy,
but not I mean you wouldn't want to carry it,
but great for a van. And all the sleeping bags
and all of these things. They can all go in
the back of the van, and I can hire it
for the weekend or the week that I'm going on festival.
(12:35):
I could even hire it to go abroad. All of
these things really really cool and much more practical, much
more doable, and of course much more affordable. And I
could see that within a year I'd be able to
afford that. You know, I can get my bell tent
very soon. I haven't sold anything in the shop. These
(12:55):
things do take a long time. I've started to get
rawalties in from my Amazon books, and true enough, it's
taken about two years, and I had heard it would
take two years. Look, they're very small amounts of money,
but they are small amounts of money at least, which
(13:16):
is better than no amount of money. So I'm really
pleased about that, really pleased about it. So perhaps, you know,
if I can't set up this charitable group, it's a
working charitable group with trustees. I'm going to think about,
you know, how do I benefit my autistic grandchildren and
(13:38):
my with testing me. I don't know if I'm autity it,
how do I benefit If I can't get donations, Well,
I have to benefit through a viable business. And you know,
if writing books is a viable business, so be it.
So be it, my friends. Anyway, I'm going to do
some music for the new Autism Caravan website, which is
(14:04):
I've streamed it right down and really simplified it. So
that's Autismcravan dot blogspot dot com. Not coming up on
Google yet. I think that will take a good few weeks.
Gotta go, guys,
I quite like this idea of getting up at six
every morning, so my grandson comes and wakes me up,
and it's really paying off. I'm being incredibly productive. Isn't
it funny how something as little as a regular alarm
system because he's begun my alarm clock and we can
have that effect on your output. I mean, I normally
(00:21):
just let myself wake up, and sometimes I mean it's
sort of anywhere between five thirty and eight thirty, and
I guess therein liesa problem. It's too random. So I'm
really intrigued about that. Today I might decide when, when
and if he goes somewhere else, which I really don't
want him to do. I may decide that I'll set
(00:42):
an alarm. I think that's a really good idea. So
he's really good. He's been a little gem. We had
a lovely weekend. I think he's getting used to being here.
It's very difficult for autistic people and autistic children, particularly
to become comfortable without a very set routine, and I
(01:03):
think we're really starting to adapt now. So he woke
at four point thirty am, which is way better because
when he first arrived here, he was sort of waking
up about one in the morning, perhaps even earlier I
can't remember. Now, Yeah, he was up when I would
go to bed, he was already awake, and he'd be
(01:25):
still awake when I got up in the morning. Really bad,
not good at all. And he really didn't like that.
He didn't like the fact that he was alone all night.
He doesn't want to be alone. This is a quandary,
I think for a lot of autistic personalities, because you
do feel loneliness and isolation, but you don't really like
(01:47):
people very much. And I really fit into that category,
so you know, you don't want the overload of you.
We'd be sort of happy if a friend was just
sitting in the corner and being quiet. Oh and you
know people don't want to behave like that, do they.
That's not normal anyway. I'm writing a journal for him,
(02:10):
which I send off to the social worker each day,
or well I let them off the weekend. They've got
a big long one today from over the weekend. And
it just really helps me actually writing. It helps me
validate the you know, the systems that I'm putting in place.
It helps me understand what's getting better and what's not
(02:33):
getting better. Because the thing is, when you're busy and
in the thick of it, it's quite hard to see
the wood for the trees. You're kind of you know,
you forget the little milestones, and there are so many
of them, and you tend to over emphasize the sort
of negatives. I think, and what I'm finding is that
my grandson is really really responding to constant positivity, and
(02:59):
you know, all of the things that I've put in
place are really really paying off, and this home is
a place of contentment, you know. I mean, I did
have to give up lots of ideals, ideals of you know,
how a child should be in terms of cleaning their
teeth and washing and going to school and all of
(03:20):
these things. These I had to let go of these
things very early on, because they can become you know,
a sort of a prison, if you like, a prison
of ideals, which you know, somebody like my grandson can't
function in because he's just not at that point yet
(03:42):
that these ideals are something to think about to move
towards for the future, and that's what they are. That
they're not there's something to be attained. They're not goals
that are due for immediate success. You know, tomorrow or
the next day. We're talking about months here, Yeah, maybe longer,
I don't know. So yeah, I'm really finding that interesting.
(04:05):
So I think I would recommend actually if you're Because
I did join some Facebook groups and they kept messaging
me saying they'd like me to join the discussion. I
just thought, no, now, I don't want to be discussing
things with people. I'm quite happy on my own tap kid,
so I sort of declined all of that. But you
do see a lot of people in desperation really for
(04:28):
some sanity, because they're looking after children who are you know,
whose autism is much more noticeable or severe if you
like that word, I don't know, than my grandsons. So
people are beside themselves. You know, it's a really difficult job.
And actually there's quite a few parents I noticed saying
(04:50):
that they're lonely. And if you go to register as
well and have a look there. But these communities they
may or may not help you. I like to just
observe from afar. I don't want to get involved, and
I haven't got time to start chatting to people, you know,
because you know, there's there's all sorts of other things.
So I have set up the autism the new autism site,
(05:10):
autism caravan site, and I'm in the process of trying
to persuade someone to be a trustee, but I don't
think he's going to buy it. And it's actually quite
hard to find trustees, especially unpaid trustees. I mean, I
guess if you're going to pay them. In the big
world of business and charity, you know, I don't want
(05:33):
to say proper charity, but you know, big organized charities
trustees get paid when you're starting from where I'm starting,
it's totally voluntary. And that's where one of the problems lie.
I can't I can't say, you know, to somebody, can
(05:53):
I you know, I'll pay you five thousand pounds a
year just to be the trustee or some of these
big places that get hundreds of thousands, you know. But
I can't say that. I'm having to say with your
you know, you need to be a responsible party. You
do have a casting vote, and you're not going to
get paid. And you know I was saying yesterday it
is a responsibility. Actually it is a position that mustn't
(06:18):
be abused. How can you abuse a trustee position with
if you're not getting paid well. For example, you could
bring my charity, well, I don't suppose it's mine, is
it would be ours our charity into disrespect. That wouldn't
be good. I'd be so you know, I'd be horrified
(06:40):
if if that occurred. What would happen if I had
somebody on the board of trustees who was, you know,
doing horrible things you know, in their private lives, do
you see what I mean? Or if they went to
prison stuff like this? You know, I'm thinking about this today.
(07:01):
It's not something I've ever had to think about before.
It's like, oh right, yeah, okay, what if they're bonkers
and always getting into some trouble or other? You know.
And if you think about famous people, who would you
want on your board of trustees? Would you want Katie Price? No,
(07:24):
she's got a cocaine habit and she's addicted to flip
fillers and boob fillers. No, you wouldn't want that. It's
going to look bad on your charity. It's bad enough
that I've got a neck tattoo. I keep thinking that.
I keep thinking, shall I wear a high necked jumper
when I do charity related stuff? Well, I can't do that.
That's not going to happen, and lots of autistic people
(07:47):
have tattoos, so I'm not going to worry about whether
my presentation is suitable for my charity. I mean, I can't.
Once you've got tattoos, you can't. You could, but I
wouldn't watch it. I love my stuties. But do you
see what I mean? These things are Suddenly today I'm
being all, you know, this sort of person that I
(08:10):
never thought i'd be, kind of vaguely judgmental, judging people
is suitable or not suitable. That's something that I haven't
really in my life had the focus upon because I've
always been very much an underground, free living bohemian artist musician,
(08:33):
So none of those things have mattered, you know. And
also to a degree, working in fashion, you don't have
to really worry about stuff like that because there's an
expectation if you work in any of the arts, you
will be a very creative individual in your look and
your personality. But there's creative and there's destructive, isn't there
(08:54):
there's creative and this rude, there's creative, even the stupid,
you know. I mean, suddenly I'm thinking, well, I don't
mind having someone creative but as long as they're not stupid, rude,
batshit crazy or you know, criminal. And actually, when you
(09:16):
start thinking of these things, you start looking at your friends,
and I mean I don't have friends. I did ask
my friend who's helping me set it up with her advice,
and she said no because she's already on a lot
of she's trustees of too many other things, and it
would be a conflict of interest because she also applies
(09:36):
for regular funding. I think I don't know if that's true.
You know, it's the other thing about setting up a
working group to fundraise for the autism Caravan. You know,
I haven't proved myself yet. I only set this up
(09:57):
last week. So will I be able to you know,
this is what people will be thinking. Well, she doesn't
have a track record, she doesn't have a history of
working with charity. I have a little bit because I
was fundraising at the start of the year for the
music charities. But it's kind of a bit different. It
(10:17):
wasn't you know. I mean basically it was an eBay
shop and I donated. It was all, you know, quite
above board, etc. But yeah, a track record for creating
something that has legs, has longevity is not going to
fail at the first hurdle, has an online presence, all
(10:39):
of these things. I don't have those yet. Yes, I've
just created the app and the website and stuff, but
you know, I'm literally two weeks in, so it may
be guys that I can't find a trustee. And if
that's the case, I will have to think about other
ways of achieving my goals privately through business actually setting up,
(11:07):
you know, a better business model, so that I can
privately by myself, not with lottery money a van, and
I mean that's much more doable, isn't it. Anyway, I've
sort of tooked myself out of the van because the
biggest problem is I'm only allowed one parking space here
(11:28):
and I wouldn't be allowed to park a van unless
I got rid of the car, and then I wouldn't
be able to you know, very mum around. That's why
we got the car. The cars needed. We have to
do all her shopping and stuff. So I thought, well,
it's also expensive, so there'll be this huge van sort
of parked somewhere, accumulating dust, not doing very much all year.
(11:53):
It's not very cost effective, is it. So I thought, well,
I'm a driver. I can drive vehicles. I can drive
a luten We I say I can, I mean I don't. Theoretically,
I've got a license to Honestly, guys, I can't wait
to drive a loot and I'm absolutely excited about that time.
(12:14):
But the bell tent can fold up into a very
small It's about a meter long, and it's quite heavy,
but not I mean you wouldn't want to carry it,
but great for a van. And all the sleeping bags
and all of these things. They can all go in
the back of the van, and I can hire it
for the weekend or the week that I'm going on festival.
(12:35):
I could even hire it to go abroad. All of
these things really really cool and much more practical, much
more doable, and of course much more affordable. And I
could see that within a year I'd be able to
afford that. You know, I can get my bell tent
very soon. I haven't sold anything in the shop. These
(12:55):
things do take a long time. I've started to get
rawalties in from my Amazon books, and true enough, it's
taken about two years, and I had heard it would
take two years. Look, they're very small amounts of money,
but they are small amounts of money at least, which
(13:16):
is better than no amount of money. So I'm really
pleased about that, really pleased about it. So perhaps, you know,
if I can't set up this charitable group, it's a
working charitable group with trustees. I'm going to think about,
you know, how do I benefit my autistic grandchildren and
(13:38):
my with testing me. I don't know if I'm autity it,
how do I benefit If I can't get donations, Well,
I have to benefit through a viable business. And you know,
if writing books is a viable business, so be it.
So be it, my friends. Anyway, I'm going to do
some music for the new Autism Caravan website, which is
(14:04):
I've streamed it right down and really simplified it. So
that's Autismcravan dot blogspot dot com. Not coming up on
Google yet. I think that will take a good few weeks.
Gotta go, guys,
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