Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Folks. So I was thinking about changing the name of
the podcast to the Autism Caravan, but I won't because
it means all of my previous links will be defunct,
and I don't want to do that because I've worked
very hard this year on the brand. So I had
a bit of a rough day actually, to be honest,
a bit of a rough day. My autistic grandson is
(00:26):
living with me at the moment, and I love him
to bits, I absolutely love him to bits, but he's
completely nocturnal at the moment. I mean, he was nocturnal
when he arrived, but now he's even more nocturnal. He
was kind of getting up at about two in the afternoon,
and now he's kind of giving up at four. So
it's got worse. So he's up when I get up
in the morning, and you know, trying, I've tried different
(00:51):
ways to kind of get him to readjust and it
isn't happening. It's not happening easily. No, he's only been
here ten days, I think something like that, And of
course you can't turn around ten years and ten days.
I realized that, and I wouldn't want to, you know,
stress him out or anything, but he got really stressed
this morning because I asked. It was about seven six
(01:13):
six something and the TV was so loud, and I
just said, can you turn it down? And he got
really really angry with me, and I was really horrible actually,
so I just left it. You know, there were expletives,
and for the first time ever, he actually said, I
(01:34):
want to go I just want to go home. So
that told me that probably he's really really upset that
his mum's so ill that she can't look after him
at the moment. So that's the main reason I don't
want to push anything, because if he can't go back,
then you know, we're going to have so many adjustments.
(01:57):
That's the big adjustment, so there's no point in trying
to make small adjustments at the moment. And I know
being nocturnal does sound like a big adjustment, but actually
in the great scheme of things, it's not. The biggest
adjustment adjustment is his mum is extremely sick with MS.
So yeah, really really difficult morning. But anyway, he told
(02:19):
me to have often various other things and he just
wanted to go home, and I left and he turned
it out, so you know, it wasn't a total disaster.
He did actually turn it down a bit, but he's
very tired. When I wake up in the morning, you know,
at that time, he's very tired, and he's sort of
waiting for me to wake up so I can make
(02:41):
a bowl of porridge for him. I made him too
this morning in a row and then he crashed out,
so I need a scooter because he's refusing to come out.
It's refusing to come out of his bedroom. Actually, but
he's refusing to come out. You know. Today, in a bit,
I'm off to see Mum and my brother in the library,
and you know, she buys him a KitKat and a
(03:01):
hot chocolate. But he said he didn't want to come
because he'd fall asleep and it was uncomfortable to fall
asleep at the table, which made perfect sense, perfect sense.
He said, could you bring back the kit kat? And
I said, yeah, of course, and I understand it. The library,
isn't It suddenly occurred to me that actually the library
(03:21):
is a horrible place for somebody with autism. It's very
bustly the cafe rather not the book area. I mean,
he hates books. He's not interested in books. There's a
lot of stimulus in the library. There's a lot of computers,
pinging tills, coffee staff, coffee mach you know, all of
these things that it's actually very noisy. Suddenly occurred to
(03:43):
me today. Yeah, actually that must be really horrible. And
then you've got this sort of hard table with no
soft area you like soft as we know, because they
won't let me change the bed. It's got all these Christians.
So I'd really like to just go out and buy
a bloody scooter. But I mean, I've got money for it,
but I haven't got a local place, a local shop.
(04:07):
So the Argost doesn't seem to have them here, and
the Halfords doesn't seem to have any in stock, which
is just infuriating. So I'm sort of thinking, well, maybe
tomorrow I could jump in the car and go and
see if I can find one somewhere. I don't want
to buy online. I'm really nervous about buying stuff like
that online. I don't know, maybe I'll just go to Amazon.
And I was looking for ones with five stars and
(04:29):
they're all over four hundred quid. That seems to be
you know, the price at which you start paying for
quality anything under is actually cheap Chinese rubbish and The
reason I want him to have the scooter again is
because he's not getting outside at all. He's not getting
any exercise, and I figure, although it's motorized, it will
(04:52):
probably run out from time to time, or he might
want to do a bit of stepping from time to time,
do you know what I mean? But just to get
some vitamin D out in the sun, you know, would
be would be great. So and we can. I want
him to have fun and I want him not to
be scared of going out doing all these strange, alien
(05:14):
things that he really doesn't want to mix with my family.
I mean they're his family too, but you know, and interesting,
I was talking to his mum and she said he
didn't want to mix with anybody that side either, And
I think that's because of her ms. I think that's
made things, made everything worse. I think the illness has
(05:37):
taken over the whole household there. And she's very low,
she's very sick, she's very immobile, and that's going to
do things just to a ten year old, let alone
a ten year old. You're a diverse person, you know,
So yeah, I need to get this scooter. So I
(05:58):
don't know, I'll have a think about that. Maybe get
delivered from Amazon. They usually come in a couple of days,
so that might be doable. We could just stay in
a couple of days. What else, well, I mean, my
life is just navigation. It's navigation around when he's asleep. Now,
(06:21):
so I got all my websites done. I've set up
a new website by the way, for the Autism Caravan.
I really like it. I really like all my websites.
I've got four now that I'm working on, and they're blogs.
They're not websites, they're blogs. I'm very good at blogging.
A blog's much easier to maintain, it's much more fun,
it's much nicer. So I've got four. So the Autism Caravan,
(06:43):
I thought, well, this will be more of a journal
type blog, you know, talking about how you know, everything
that impacts the household and everyone around it. So my
mum's getting upset. She can't see me. But I'm going
off for an hour today and you know, leaving peanut
(07:03):
butter sandwiches, so you know, it's I can't go out
for very long obviously you can't, you know, and you
have to get things organized, you know, do you You
have to teach I mean, the thing is he's not stupid.
He's actually very independent as well. He just wants to
be left alone and and that's a sort of independence.
(07:25):
I mean, it's very very much a different way that
normal I say normal inverted commerce. Obviously, you know that
an ordinary non neurodiverse child is usually quite different. They
want to be doing stuff there, you know, eager to
get our eager to play. And my grandson is not
(07:48):
interested in playing with anybody else. He doesn't like playing.
I noticed when I had him, when he was a
bit younger, we went to the park and people tried
to play with him and he didn't respond at all.
So he's really closed off, very very closed off to that,
just not interested. And when I said about school, because
(08:09):
his school have messaged a center letter and I read
that to him. It's really sweet, and they said they
were all missing him and looking forward to when he
goes back. And I've said, you know, about going to
school here, and he said he doesn't want to go
to school. And I said about you know, making friends.
He said, no, I don't. I've got friends, you know,
(08:31):
meaning the friends he's got at the hub he's at.
And he said, I can just add them, and he
means add them to his sort of PlayStation stuff, but
he doesn't add them. And when there are these lists
of comments coming up on the side of the screen,
it's on the left hand side of the screen on
the on the TV when he's playing, they're all sort
(08:54):
of writing sentences and what have you comments, But he
doesn't read those, and he doesn't engage with them, not
interested in those at all. What he is interested in
is working out how to get the character that he's
playing to, you know, win or get better or pick
(09:16):
things up or get points. I mean, I don't know,
I don't really understand them, to be honest, but that's
you know, that's what he's really I mean, he's so
motivated when it comes to that, so motivated. And I
was wondering about that motivation, you know, and that you know,
it's ADHD. I think that you fixate on something that's
a little bit tricky and once it's done your board.
(09:40):
I think that's an ADHD thing, because that was one
of the questions in my my initial test for my
ADHD did ask that, and I thought, oh, dear, that's me.
I'm so like that, you know, I like building the blogs.
I like building the shop. I like doing all this thing,
that thing, you know, but then I hate doing anything else.
Then I just abandon everything or just let it sit there.
(10:04):
I mean, I don't actually abandon things, but you know
I don't. I can't be asked with them after that,
after the lovely, beautiful creative bits done at the beginning,
I'm not I'm really not interested. I'm looking forward to
doing a bit of music now that those are all done.
So the blogs are, guys, the Autismcravan dot blogspot dot com,
(10:26):
I Saveland dot com dot com and Politica dot Politica,
dash Uk dot blogspot dot com, which I really like.
I really like doing that today. I've set it up
quite a long time ago, but I wasn't sure of
the format if it was working, and I wasn't sure
if I could really get into it as a creative person.
But now that I'm collecting for the Autism Caravan, it's
(10:49):
actually very much more intrinsically important to you know, the
whole project that I do that so and fundraining is
quite difficult. It has its own sort of level of
trickery or trickyness, and not trickery trickyness because you know
you've got to be on the ball with that all
the time. And you've got to be promoting, promoting, and
(11:10):
you've got to be writing letters and sending things to people.
And you know, I'm still waiting for a good friend
to come back with the next bit of advice. I've
done the blogs and I've done the websites so that
when I apply for funding for the caravan, you know,
people can see that I'm a genuine person. And what
experience I have with autism, you know, I mean, I've
(11:33):
brought up at least two children who were autistic. One
was diagnosed at twelve, the other was diagnosed at thirty four.
Just crazy, very recently. I mean, that's crazy, isn't it.
That's absolutely crazy. So I but it's funny. Does your
experience of bringing up somebody with autism who you didn't
(11:55):
know had autism mean that you're an expert in autism?
Don't do canic because you didn't you know, you didn't know,
so you you acted according to your instincts, but you
didn't act according to a sort of paradigm of knowledge,
which is how do you bring up an autistic child.
I think people are a bit wiser today, so I
(12:15):
wouldn't say I'm an expert from that from being a mother,
but I'm definitely an expert now from being a grandmother. Well, no,
I'm not an expert. I'm experienced, you know, much more
experience because this is a crash course. Look, you know,
picking up the slack when somebody's had to you know,
leave their home and their mum's very very very sick
(12:40):
and you know, emotionally and physically. I mean, I'm really
worried about her. You know, you learn very quickly on
when you're doing things at that speed. You kind of
have to. It's like whoa, okay, right, what are we
going to do about this? So there's some other things
I want to do. I want to you know, make
make the room. It's my room with my lovely four
(13:02):
poster bed i've lost access to. Slightly depressing, I must
say I might at some future juncture. Junk can't even
speak today, I might put my bed a bit lower
because it's so high. It's ridiculously high, and it you know,
I can't sit up or lounge about in it. It's
(13:23):
not it's lacking that you know, extra sort of five inches.
I only need an extra five inches and it'll be perfect.
So or I could maybe ask, yeah, I could maybe
chop five inches five inches off the legs. Why should
I do that? That's a great idea. I'm going to
do that. That's perfect. Yep, that's my next plan then
(13:47):
and then it'll just make it a bit more luxurious
for me and I can put some swags up and things,
because there's all all sorts of adaptations going on in
my life at the moment. Anyway, That's that's the update
for today. So this is my personal blog, my personal
podcast for the blog, and you know it's going to
(14:07):
be just really about how difficult this is and how
I'm how I'm circumnavigating all the problems, and how I'm
making the best life, you know, for for my little
man and and for me and Mum obviously because I
look after her too. So there we go. I need
a rest. I think I've got a coffee on Thattle.
(14:29):
Dis a trick
Folks. So I was thinking about changing the name of
the podcast to the Autism Caravan, but I won't because
it means all of my previous links will be defunct,
and I don't want to do that because I've worked
very hard this year on the brand. So I had
a bit of a rough day actually, to be honest,
a bit of a rough day. My autistic grandson is
(00:26):
living with me at the moment, and I love him
to bits, I absolutely love him to bits, but he's
completely nocturnal at the moment. I mean, he was nocturnal
when he arrived, but now he's even more nocturnal. He
was kind of getting up at about two in the afternoon,
and now he's kind of giving up at four. So
it's got worse. So he's up when I get up
in the morning, and you know, trying, I've tried different
(00:51):
ways to kind of get him to readjust and it
isn't happening. It's not happening easily. No, he's only been
here ten days, I think something like that, And of
course you can't turn around ten years and ten days.
I realized that, and I wouldn't want to, you know,
stress him out or anything, but he got really stressed
this morning because I asked. It was about seven six
(01:13):
six something and the TV was so loud, and I
just said, can you turn it down? And he got
really really angry with me, and I was really horrible actually,
so I just left it. You know, there were expletives,
and for the first time ever, he actually said, I
(01:34):
want to go I just want to go home. So
that told me that probably he's really really upset that
his mum's so ill that she can't look after him
at the moment. So that's the main reason I don't
want to push anything, because if he can't go back,
then you know, we're going to have so many adjustments.
(01:57):
That's the big adjustment, so there's no point in trying
to make small adjustments at the moment. And I know
being nocturnal does sound like a big adjustment, but actually
in the great scheme of things, it's not. The biggest
adjustment adjustment is his mum is extremely sick with MS.
So yeah, really really difficult morning. But anyway, he told
(02:19):
me to have often various other things and he just
wanted to go home, and I left and he turned
it out, so you know, it wasn't a total disaster.
He did actually turn it down a bit, but he's
very tired. When I wake up in the morning, you know,
at that time, he's very tired, and he's sort of
waiting for me to wake up so I can make
(02:41):
a bowl of porridge for him. I made him too
this morning in a row and then he crashed out,
so I need a scooter because he's refusing to come out.
It's refusing to come out of his bedroom. Actually, but
he's refusing to come out. You know. Today, in a bit,
I'm off to see Mum and my brother in the library,
and you know, she buys him a KitKat and a
(03:01):
hot chocolate. But he said he didn't want to come
because he'd fall asleep and it was uncomfortable to fall
asleep at the table, which made perfect sense, perfect sense.
He said, could you bring back the kit kat? And
I said, yeah, of course, and I understand it. The library,
isn't It suddenly occurred to me that actually the library
(03:21):
is a horrible place for somebody with autism. It's very
bustly the cafe rather not the book area. I mean,
he hates books. He's not interested in books. There's a
lot of stimulus in the library. There's a lot of computers,
pinging tills, coffee staff, coffee mach you know, all of
these things that it's actually very noisy. Suddenly occurred to
(03:43):
me today. Yeah, actually that must be really horrible. And
then you've got this sort of hard table with no
soft area you like soft as we know, because they
won't let me change the bed. It's got all these Christians.
So I'd really like to just go out and buy
a bloody scooter. But I mean, I've got money for it,
but I haven't got a local place, a local shop.
(04:07):
So the Argost doesn't seem to have them here, and
the Halfords doesn't seem to have any in stock, which
is just infuriating. So I'm sort of thinking, well, maybe
tomorrow I could jump in the car and go and
see if I can find one somewhere. I don't want
to buy online. I'm really nervous about buying stuff like
that online. I don't know, maybe I'll just go to Amazon.
And I was looking for ones with five stars and
(04:29):
they're all over four hundred quid. That seems to be
you know, the price at which you start paying for
quality anything under is actually cheap Chinese rubbish and The
reason I want him to have the scooter again is
because he's not getting outside at all. He's not getting
any exercise, and I figure, although it's motorized, it will
(04:52):
probably run out from time to time, or he might
want to do a bit of stepping from time to time,
do you know what I mean? But just to get
some vitamin D out in the sun, you know, would
be would be great. So and we can. I want
him to have fun and I want him not to
be scared of going out doing all these strange, alien
(05:14):
things that he really doesn't want to mix with my family.
I mean they're his family too, but you know, and interesting,
I was talking to his mum and she said he
didn't want to mix with anybody that side either, And
I think that's because of her ms. I think that's
made things, made everything worse. I think the illness has
(05:37):
taken over the whole household there. And she's very low,
she's very sick, she's very immobile, and that's going to
do things just to a ten year old, let alone
a ten year old. You're a diverse person, you know,
So yeah, I need to get this scooter. So I
(05:58):
don't know, I'll have a think about that. Maybe get
delivered from Amazon. They usually come in a couple of days,
so that might be doable. We could just stay in
a couple of days. What else, well, I mean, my
life is just navigation. It's navigation around when he's asleep. Now,
(06:21):
so I got all my websites done. I've set up
a new website by the way, for the Autism Caravan.
I really like it. I really like all my websites.
I've got four now that I'm working on, and they're blogs.
They're not websites, they're blogs. I'm very good at blogging.
A blog's much easier to maintain, it's much more fun,
it's much nicer. So I've got four. So the Autism Caravan,
(06:43):
I thought, well, this will be more of a journal
type blog, you know, talking about how you know, everything
that impacts the household and everyone around it. So my
mum's getting upset. She can't see me. But I'm going
off for an hour today and you know, leaving peanut
(07:03):
butter sandwiches, so you know, it's I can't go out
for very long obviously you can't, you know, and you
have to get things organized, you know, do you You
have to teach I mean, the thing is he's not stupid.
He's actually very independent as well. He just wants to
be left alone and and that's a sort of independence.
(07:25):
I mean, it's very very much a different way that
normal I say normal inverted commerce. Obviously, you know that
an ordinary non neurodiverse child is usually quite different. They
want to be doing stuff there, you know, eager to
get our eager to play. And my grandson is not
(07:48):
interested in playing with anybody else. He doesn't like playing.
I noticed when I had him, when he was a
bit younger, we went to the park and people tried
to play with him and he didn't respond at all.
So he's really closed off, very very closed off to that,
just not interested. And when I said about school, because
(08:09):
his school have messaged a center letter and I read
that to him. It's really sweet, and they said they
were all missing him and looking forward to when he
goes back. And I've said, you know, about going to
school here, and he said he doesn't want to go
to school. And I said about you know, making friends.
He said, no, I don't. I've got friends, you know,
(08:31):
meaning the friends he's got at the hub he's at.
And he said, I can just add them, and he
means add them to his sort of PlayStation stuff, but
he doesn't add them. And when there are these lists
of comments coming up on the side of the screen,
it's on the left hand side of the screen on
the on the TV when he's playing, they're all sort
(08:54):
of writing sentences and what have you comments, But he
doesn't read those, and he doesn't engage with them, not
interested in those at all. What he is interested in
is working out how to get the character that he's
playing to, you know, win or get better or pick
(09:16):
things up or get points. I mean, I don't know,
I don't really understand them, to be honest, but that's
you know, that's what he's really I mean, he's so
motivated when it comes to that, so motivated. And I
was wondering about that motivation, you know, and that you know,
it's ADHD. I think that you fixate on something that's
a little bit tricky and once it's done your board.
(09:40):
I think that's an ADHD thing, because that was one
of the questions in my my initial test for my
ADHD did ask that, and I thought, oh, dear, that's me.
I'm so like that, you know, I like building the blogs.
I like building the shop. I like doing all this thing,
that thing, you know, but then I hate doing anything else.
Then I just abandon everything or just let it sit there.
(10:04):
I mean, I don't actually abandon things, but you know
I don't. I can't be asked with them after that,
after the lovely, beautiful creative bits done at the beginning,
I'm not I'm really not interested. I'm looking forward to
doing a bit of music now that those are all done.
So the blogs are, guys, the Autismcravan dot blogspot dot com,
(10:26):
I Saveland dot com dot com and Politica dot Politica,
dash Uk dot blogspot dot com, which I really like.
I really like doing that today. I've set it up
quite a long time ago, but I wasn't sure of
the format if it was working, and I wasn't sure
if I could really get into it as a creative person.
But now that I'm collecting for the Autism Caravan, it's
(10:49):
actually very much more intrinsically important to you know, the
whole project that I do that so and fundraining is
quite difficult. It has its own sort of level of
trickery or trickyness, and not trickery trickyness because you know
you've got to be on the ball with that all
the time. And you've got to be promoting, promoting, and
(11:10):
you've got to be writing letters and sending things to people.
And you know, I'm still waiting for a good friend
to come back with the next bit of advice. I've
done the blogs and I've done the websites so that
when I apply for funding for the caravan, you know,
people can see that I'm a genuine person. And what
experience I have with autism, you know, I mean, I've
(11:33):
brought up at least two children who were autistic. One
was diagnosed at twelve, the other was diagnosed at thirty four.
Just crazy, very recently. I mean, that's crazy, isn't it.
That's absolutely crazy. So I but it's funny. Does your
experience of bringing up somebody with autism who you didn't
(11:55):
know had autism mean that you're an expert in autism?
Don't do canic because you didn't you know, you didn't know,
so you you acted according to your instincts, but you
didn't act according to a sort of paradigm of knowledge,
which is how do you bring up an autistic child.
I think people are a bit wiser today, so I
(12:15):
wouldn't say I'm an expert from that from being a mother,
but I'm definitely an expert now from being a grandmother. Well, no,
I'm not an expert. I'm experienced, you know, much more
experience because this is a crash course. Look, you know,
picking up the slack when somebody's had to you know,
leave their home and their mum's very very very sick
(12:40):
and you know, emotionally and physically. I mean, I'm really
worried about her. You know, you learn very quickly on
when you're doing things at that speed. You kind of
have to. It's like whoa, okay, right, what are we
going to do about this? So there's some other things
I want to do. I want to you know, make
make the room. It's my room with my lovely four
(13:02):
poster bed i've lost access to. Slightly depressing, I must
say I might at some future juncture. Junk can't even
speak today, I might put my bed a bit lower
because it's so high. It's ridiculously high, and it you know,
I can't sit up or lounge about in it. It's
(13:23):
not it's lacking that you know, extra sort of five inches.
I only need an extra five inches and it'll be perfect.
So or I could maybe ask, yeah, I could maybe
chop five inches five inches off the legs. Why should
I do that? That's a great idea. I'm going to
do that. That's perfect. Yep, that's my next plan then
(13:47):
and then it'll just make it a bit more luxurious
for me and I can put some swags up and things,
because there's all all sorts of adaptations going on in
my life at the moment. Anyway, That's that's the update
for today. So this is my personal blog, my personal
podcast for the blog, and you know it's going to
(14:07):
be just really about how difficult this is and how
I'm how I'm circumnavigating all the problems, and how I'm
making the best life, you know, for for my little
man and and for me and Mum obviously because I
look after her too. So there we go. I need
a rest. I think I've got a coffee on Thattle.
(14:29):
Dis a trick
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