Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Wow, today's been really, really hard. So I'm actually really tired.
And the problem is that my autistic grandson is not
completely nocturnal, and I can't seem to break him out
of this cycle. We've tried everything. I've tried going forwards
with the sleeping, and I've tried going backwards, if that
(00:21):
makes sense. So I've tried waking him up earlier. Doesn't work.
He gets really tired, really crotche tea. And I've tried
keeping him awake longer, do you see what I mean?
So he gets really tired about five o'clock, and I
was hoping to change that sleep pattern till to six
(00:41):
o'clock and then seven and eight, and then he'd be
like everybody else, you know, around ten he sleeps for
eight hours solid. But of course he goes to sleep
at five and I'm still awake. And now if I
go to sleep at five, I'm not sure what my
life would look like. But I've kind of starting to
feel like that. But it's quite noisy and it's still daylight,
(01:03):
and I just don't think I can quite do that.
He actually sleeps more than I do. He sleeps a
full eight hours, and I'm really lucky. If I get seven,
that's on, you know, without having to look after him.
So it feels like I've got a newborn baby, but
he's ten. But he because his autism is quite marked,
(01:25):
so you know, he needs kind of full on attention,
which is fine. I mean, he goes in his room
and well my room because I'm sleeping in a very
uncomfortable bird as well at the moment, and most of
the day he's kind of there, but you have to
be on red alert. So for example, every about every
(01:46):
two hours, I have to make something for him to eat,
cook something or prepare something and take it in and
then he says done, and I go in and I
pick the truck because we haven't got a dying table.
He's just treed to it, really, but because this was
just sprung on me and I normally have him just
for a few days and we sort of muddle through
(02:07):
and it's fine. We usually do something exciting, but this
has been full on for this is the fourth week
coming up, and you know, you suddenly realize that actually
living in a tiny apartment with you know, he's five foot.
I measured him today, he's five foot. He's eleven stone,
(02:29):
so he's he's not on the abese level, but he's
on I think it's ninety nine percent something or other
they call it because of the p I can't remember
what it was. So he's not counted as clinically abeese
or medically obese, but he's you know, on that borderline
(02:49):
of overweight. So he's a big boy, you know, and
he eats a lot. So the practicalities of that, now
after three and a half weeks or whatever are sinking in.
If I had him full time, I would have to
have a bigger place. I'd have to because this is
just we're so cramped here. It's one bedroom flat. We're
(03:14):
so cramped, and you know the other things. I can't
really work. I can't really do much. When I've got him,
it's much much harder. I can do. I can get
a couple of hours in, like now, so he's gone
to sleep, so I can get a couple of hours in.
But you know, I certainly can't do this sort of
full eight hour days or twelve hour days that I'm
(03:34):
used to. I mean, I'm used to working like a trojan.
I can't really do that. So you know, you have
to completely think when you're looking after somebody's disabled, you
have to think, right, what do I do to make
this a possible, a bible thing that I'm going to
succeed at, Because that's the first thing. If you have
(03:54):
all these problems in the way, like financial problems and
space problems, you are not going to do enough for
this child to flourish successfully, to be contented and happy.
You know, you've got to have everything in place, and
especially if you're if it's so I mean he's related
(04:15):
to me with my grandson, but if it's somebody else's
child who the child has been removed from them by
Social services, which is what's happened, you know, he's a
protected child. So I'm going to have to say to
social Services at some point, look, I just don't I'm
not sure that I've got the facilities here, but I
don't want him going into foster care because he doesn't
(04:38):
want that. He's told me he doesn't want that. It's
just so sad at all of this is really really sad,
you know, and navigating it is difficult. So he's got
you know, so much adjusting and it's so sad. You know,
he just wants his mum and it's all just really
really bloody sad, and I you it's heartbreaking, actually, But
(05:02):
the thing is, when I'm tired, I feel a bit heartbroken.
So I've had a bit of a bad day. Tomorrow,
I'm hoping I'm to go to bed early, try and
chill axe a bit, you know, calm down. We did
spend some lovely time together and we did have a talk,
and you know, I really like it when we talk,
(05:22):
just not about anything in particular. And then I did,
you know, I want to encourage him to use a
pencil or a pen or an iPad. So I was
showing him how I can write his name and I
was coloring it, and he chose the colors for each letter.
And that was really nice because getting him to engage
is incredibly difficult because he's completely he completely rejects any
(05:49):
type of learning or anything vaguely academic. And he's sussed
out really quickly, right bless him, he's sussed out when
I'm trying to teach him things. And we did something
in the lift. I can't remember what it was, but
I said something and I said, you know, oh, I
was asking about odd and even numbers, and he looked
at me with this look in his eye, and I said,
(06:10):
you know what I'm up to, you don't you? And
he said yes, and I'm not doing maths. He sussed
me out. He sussed me out. But you know, the
social services at the meeting of the day, you know,
they're kind of saying, why is it? Why is this
young boy become hasn't been to school for a couple
(06:31):
of months. Nobody's legally he's he has rights, but nobody
has been providing him with his rights. The police have
removed him twice and brought him to me. Why is
that allowed to happen? The first incident was in February
(06:53):
and it's been going In fact, it was before that
his it was like November, but then things started to
happen again, and it's now nearly July, you know, and
it's just like, hang on a minute. All these months
have gone by and there's still no caring place for him.
(07:15):
It's just bloody awful. It really is awful. So you know,
I said to my mum today when I'm not you know,
we're waiting for the mother's decision on Friday whether she's
going to hand him over to me, and I don't
want him to be handed over and never to see
his mom and stuff like that. That's not what's going
(07:38):
to benefit him, you know. But she can't cope at
the moment. She's got MS and she's she's been drinking
a lot. So there's a lot of things that are
going wrong in his life. And really, you know, it
needs to be it needs to be sorted. But I
did feel today I thought, well, you know, what, what
(08:00):
changes can I put in place so that I can
do this? And I guess being sixty two, you you know,
you're not thirty anymore, or you know, twenties. You're not
in your twenties with a ten year old. You're sixty
two with a ten year old who's got you know,
(08:21):
learning difficulties. And you know, I would say not severe autism,
but it's marked autism. You know, it's noticeable and its
impact should I say that it is having a big
impact on his growth in his development. So I am
(08:43):
bloody exhausted. Guys really just bushed, absolutely brushed. My mum said, oh,
you look so tired, and I am. I just feel like,
oh god. So I think maybe, you know, I'm going
to have to look at ways that I can well,
maybe perhaps going to bed earlier. He wakes up at
one and he wakes me up. Usually I hear him
(09:03):
padding about or because I'm worried about him, so I
sort of wake up, you know. And that's the biggest problem.
But we shall see, we shall see how we go
with it. But I do think as well, you know,
if it's going to stay with me, we'll have money
sorted out, because at the moment there's no money for
(09:24):
him that has been refused, which is, they gave me
a fifty pounds voucher today for food. They gave me
seventy five pounds last week. They give me fifty pounds
this week. I mean we went out, we bought a toothbrush,
toothpaste and food for today, and it's nearly all gone,
you know, And you just think, wow, that's an awful
(09:45):
lot of money. But of course he's a big boy,
and he does eat sort of two adults worth. I've
had him on this diet without him knowing. He hasn't
had a single fright these. He said he'd prefer his
hash brands if they were crispy, and I thought, yes,
I bet you would fried in oil. Well, of course
(10:07):
they go in the microwave. And then they're covered in beans.
And then I've got the eggs, which I do in
a griddle thing, and like a foreman, a George foreman,
I said, well, do you want me to put them
in the grill thing and get them a bit crispy?
And he said, no, no, it's all right. But and
I just use this spray. It's like a it's not
an aerosol. It's like a sort of water spray, but
(10:28):
it's got oil in it. You just do like two
squirts of it and you can do your eggs. It's
very little oil. I actually think he's lost weight. I do.
I think that, But he loves his porridge, just loves
his porridge. And then he loves noodles, you know, everything
(10:50):
that he eats, and he eats the same thing every day.
We've got it down to a fine art, very much
repetitive menu. Because he's autistic. He likes the same thing
every day. Everything's pretty much the same color as well,
so you know, he has these foibles. And because he's
very reticent to leave the house. I was so pleased
(11:11):
today because we did leave the house. We actually left
the house twice. So he's becoming quite clingy to me,
which is to be expected a little bit clingy. So
he doesn't want me to go anywhere without him. And
you know, but he waits in the car. He doesn't
want to come into the supermarket. He waits in the car.
(11:32):
And I mean, it's a big boy. No one's going
to pick him up and take him away. They won't
be able to drag him, even he's really big. But yeah,
and also they've got cameras there and everything. So he's
actually despite his learning difficulties, which are more academic I
would say, some memory problems, I think, and consequences doesn't
(11:56):
recognize consequences in a mathematical ordered way. But he is
quite independent. So he's very well behaved. It's actually incredibly
well behaved. And we've got into this wonderful kind of
cohabiting situation where he's so quiet at night, and actually
(12:18):
he started to turn everything down, and I really think
the calmness has enveloped him because when he first got here,
he was just everything was really loud. All the tech
was on, the telly, was screaming with his laptop, was
screaming with tablet. You know, it was all really really loud.
And now it's just such a peaceful house, peaceful flat,
(12:42):
and I'm really grateful for that. So it's just the
tiredness really, So I'm thinking, Shaul, I take an extra
sleeping people. I can't really with the not proper sleeping pills,
you know, they're more like calmly down pills. So yeah,
my thoughts today are really with all the mums of
artistic children out there, you know, who have such a
(13:03):
difficult time, and grandparents too, if you've got you know,
if you're you're doing any sort of babysitting or anything
that's really hard. My brother babysat for two for his
he's got autistic twin grandchildren. Any babysat for them for
It's only there for about six hours. He said, it
(13:25):
was horrendous. They've just run rings around him. Can you
imagine two of them? Oh my god, Oh my god, No, no,
I couldn't. I couldn't imagine that they were younger. They
were kind of six seven something like that, maybe eight,
And yeah, apparently they were. They were really naughty. So anyway,
(13:48):
the sort of autism caravan project is becoming smaller and smaller.
It was a driving vehicle and it was a tent
and now it's probably just an app I mean, I
just can't see that I could do anything like that
while I am looking after him. It's nigh on impossible.
(14:09):
And I'm thinking, right, if this is a thing that's
going to be continued, I need to sort out babysitters
so that my neighbors are being very noisy. I've got
all the doors open, yeah, babysitters, and you have to
get all that in place, all of it school. I mean,
the chair of the meeting the other day was really
annoyed that nobody had sorted out school for this child.
(14:34):
You know. Anyway, I run out of time. So that's
it for today. Back tomorrow with the Autism Caravan, the
story of
Wow, today's been really, really hard. So I'm actually really tired.
And the problem is that my autistic grandson is not
completely nocturnal, and I can't seem to break him out
of this cycle. We've tried everything. I've tried going forwards
with the sleeping, and I've tried going backwards, if that
(00:21):
makes sense. So I've tried waking him up earlier. Doesn't work.
He gets really tired, really crotche tea. And I've tried
keeping him awake longer, do you see what I mean?
So he gets really tired about five o'clock, and I
was hoping to change that sleep pattern till to six
(00:41):
o'clock and then seven and eight, and then he'd be
like everybody else, you know, around ten he sleeps for
eight hours solid. But of course he goes to sleep
at five and I'm still awake. And now if I
go to sleep at five, I'm not sure what my
life would look like. But I've kind of starting to
feel like that. But it's quite noisy and it's still daylight,
(01:03):
and I just don't think I can quite do that.
He actually sleeps more than I do. He sleeps a
full eight hours, and I'm really lucky. If I get seven,
that's on, you know, without having to look after him.
So it feels like I've got a newborn baby, but
he's ten. But he because his autism is quite marked,
(01:25):
so you know, he needs kind of full on attention,
which is fine. I mean, he goes in his room
and well my room because I'm sleeping in a very
uncomfortable bird as well at the moment, and most of
the day he's kind of there, but you have to
be on red alert. So for example, every about every
(01:46):
two hours, I have to make something for him to eat,
cook something or prepare something and take it in and
then he says done, and I go in and I
pick the truck because we haven't got a dying table.
He's just treed to it, really, but because this was
just sprung on me and I normally have him just
for a few days and we sort of muddle through
(02:07):
and it's fine. We usually do something exciting, but this
has been full on for this is the fourth week
coming up, and you know, you suddenly realize that actually
living in a tiny apartment with you know, he's five foot.
I measured him today, he's five foot. He's eleven stone,
(02:29):
so he's he's not on the abese level, but he's
on I think it's ninety nine percent something or other
they call it because of the p I can't remember
what it was. So he's not counted as clinically abeese
or medically obese, but he's you know, on that borderline
(02:49):
of overweight. So he's a big boy, you know, and
he eats a lot. So the practicalities of that, now
after three and a half weeks or whatever are sinking in.
If I had him full time, I would have to
have a bigger place. I'd have to because this is
just we're so cramped here. It's one bedroom flat. We're
(03:14):
so cramped, and you know the other things. I can't
really work. I can't really do much. When I've got him,
it's much much harder. I can do. I can get
a couple of hours in, like now, so he's gone
to sleep, so I can get a couple of hours in.
But you know, I certainly can't do this sort of
full eight hour days or twelve hour days that I'm
(03:34):
used to. I mean, I'm used to working like a trojan.
I can't really do that. So you know, you have
to completely think when you're looking after somebody's disabled, you
have to think, right, what do I do to make
this a possible, a bible thing that I'm going to
succeed at, Because that's the first thing. If you have
(03:54):
all these problems in the way, like financial problems and
space problems, you are not going to do enough for
this child to flourish successfully, to be contented and happy.
You know, you've got to have everything in place, and
especially if you're if it's so I mean he's related
(04:15):
to me with my grandson, but if it's somebody else's
child who the child has been removed from them by
Social services, which is what's happened, you know, he's a
protected child. So I'm going to have to say to
social Services at some point, look, I just don't I'm
not sure that I've got the facilities here, but I
don't want him going into foster care because he doesn't
(04:38):
want that. He's told me he doesn't want that. It's
just so sad at all of this is really really sad,
you know, and navigating it is difficult. So he's got
you know, so much adjusting and it's so sad. You know,
he just wants his mum and it's all just really
really bloody sad, and I you it's heartbreaking, actually, But
(05:02):
the thing is, when I'm tired, I feel a bit heartbroken.
So I've had a bit of a bad day. Tomorrow,
I'm hoping I'm to go to bed early, try and
chill axe a bit, you know, calm down. We did
spend some lovely time together and we did have a talk,
and you know, I really like it when we talk,
(05:22):
just not about anything in particular. And then I did,
you know, I want to encourage him to use a
pencil or a pen or an iPad. So I was
showing him how I can write his name and I
was coloring it, and he chose the colors for each letter.
And that was really nice because getting him to engage
is incredibly difficult because he's completely he completely rejects any
(05:49):
type of learning or anything vaguely academic. And he's sussed
out really quickly, right bless him, he's sussed out when
I'm trying to teach him things. And we did something
in the lift. I can't remember what it was, but
I said something and I said, you know, oh, I
was asking about odd and even numbers, and he looked
at me with this look in his eye, and I said,
(06:10):
you know what I'm up to, you don't you? And
he said yes, and I'm not doing maths. He sussed
me out. He sussed me out. But you know, the
social services at the meeting of the day, you know,
they're kind of saying, why is it? Why is this
young boy become hasn't been to school for a couple
(06:31):
of months. Nobody's legally he's he has rights, but nobody
has been providing him with his rights. The police have
removed him twice and brought him to me. Why is
that allowed to happen? The first incident was in February
(06:53):
and it's been going In fact, it was before that
his it was like November, but then things started to
happen again, and it's now nearly July, you know, and
it's just like, hang on a minute. All these months
have gone by and there's still no caring place for him.
(07:15):
It's just bloody awful. It really is awful. So you know,
I said to my mum today when I'm not you know,
we're waiting for the mother's decision on Friday whether she's
going to hand him over to me, and I don't
want him to be handed over and never to see
his mom and stuff like that. That's not what's going
(07:38):
to benefit him, you know. But she can't cope at
the moment. She's got MS and she's she's been drinking
a lot. So there's a lot of things that are
going wrong in his life. And really, you know, it
needs to be it needs to be sorted. But I
did feel today I thought, well, you know, what, what
(08:00):
changes can I put in place so that I can
do this? And I guess being sixty two, you you know,
you're not thirty anymore, or you know, twenties. You're not
in your twenties with a ten year old. You're sixty
two with a ten year old who's got you know,
(08:21):
learning difficulties. And you know, I would say not severe autism,
but it's marked autism. You know, it's noticeable and its
impact should I say that it is having a big
impact on his growth in his development. So I am
(08:43):
bloody exhausted. Guys really just bushed, absolutely brushed. My mum said, oh,
you look so tired, and I am. I just feel like,
oh god. So I think maybe, you know, I'm going
to have to look at ways that I can well,
maybe perhaps going to bed earlier. He wakes up at
one and he wakes me up. Usually I hear him
(09:03):
padding about or because I'm worried about him, so I
sort of wake up, you know. And that's the biggest problem.
But we shall see, we shall see how we go
with it. But I do think as well, you know,
if it's going to stay with me, we'll have money
sorted out, because at the moment there's no money for
(09:24):
him that has been refused, which is, they gave me
a fifty pounds voucher today for food. They gave me
seventy five pounds last week. They give me fifty pounds
this week. I mean we went out, we bought a toothbrush,
toothpaste and food for today, and it's nearly all gone,
you know, And you just think, wow, that's an awful
(09:45):
lot of money. But of course he's a big boy,
and he does eat sort of two adults worth. I've
had him on this diet without him knowing. He hasn't
had a single fright these. He said he'd prefer his
hash brands if they were crispy, and I thought, yes,
I bet you would fried in oil. Well, of course
(10:07):
they go in the microwave. And then they're covered in beans.
And then I've got the eggs, which I do in
a griddle thing, and like a foreman, a George foreman,
I said, well, do you want me to put them
in the grill thing and get them a bit crispy?
And he said, no, no, it's all right. But and
I just use this spray. It's like a it's not
an aerosol. It's like a sort of water spray, but
(10:28):
it's got oil in it. You just do like two
squirts of it and you can do your eggs. It's
very little oil. I actually think he's lost weight. I do.
I think that, But he loves his porridge, just loves
his porridge. And then he loves noodles, you know, everything
(10:50):
that he eats, and he eats the same thing every day.
We've got it down to a fine art, very much
repetitive menu. Because he's autistic. He likes the same thing
every day. Everything's pretty much the same color as well,
so you know, he has these foibles. And because he's
very reticent to leave the house. I was so pleased
(11:11):
today because we did leave the house. We actually left
the house twice. So he's becoming quite clingy to me,
which is to be expected a little bit clingy. So
he doesn't want me to go anywhere without him. And
you know, but he waits in the car. He doesn't
want to come into the supermarket. He waits in the car.
(11:32):
And I mean, it's a big boy. No one's going
to pick him up and take him away. They won't
be able to drag him, even he's really big. But yeah,
and also they've got cameras there and everything. So he's
actually despite his learning difficulties, which are more academic I
would say, some memory problems, I think, and consequences doesn't
(11:56):
recognize consequences in a mathematical ordered way. But he is
quite independent. So he's very well behaved. It's actually incredibly
well behaved. And we've got into this wonderful kind of
cohabiting situation where he's so quiet at night, and actually
(12:18):
he started to turn everything down, and I really think
the calmness has enveloped him because when he first got here,
he was just everything was really loud. All the tech
was on, the telly, was screaming with his laptop, was
screaming with tablet. You know, it was all really really loud.
And now it's just such a peaceful house, peaceful flat,
(12:42):
and I'm really grateful for that. So it's just the
tiredness really, So I'm thinking, Shaul, I take an extra
sleeping people. I can't really with the not proper sleeping pills,
you know, they're more like calmly down pills. So yeah,
my thoughts today are really with all the mums of
artistic children out there, you know, who have such a
(13:03):
difficult time, and grandparents too, if you've got you know,
if you're you're doing any sort of babysitting or anything
that's really hard. My brother babysat for two for his
he's got autistic twin grandchildren. Any babysat for them for
It's only there for about six hours. He said, it
(13:25):
was horrendous. They've just run rings around him. Can you
imagine two of them? Oh my god, Oh my god, No, no,
I couldn't. I couldn't imagine that they were younger. They
were kind of six seven something like that, maybe eight,
And yeah, apparently they were. They were really naughty. So anyway,
(13:48):
the sort of autism caravan project is becoming smaller and smaller.
It was a driving vehicle and it was a tent
and now it's probably just an app I mean, I
just can't see that I could do anything like that
while I am looking after him. It's nigh on impossible.
(14:09):
And I'm thinking, right, if this is a thing that's
going to be continued, I need to sort out babysitters
so that my neighbors are being very noisy. I've got
all the doors open, yeah, babysitters, and you have to
get all that in place, all of it school. I mean,
the chair of the meeting the other day was really
annoyed that nobody had sorted out school for this child.
(14:34):
You know. Anyway, I run out of time. So that's
it for today. Back tomorrow with the Autism Caravan, the
story of
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