Hello mate. Hello, Luke.
How are you? Yeah, not.
Bad. Right, so I heard you on LBC,
didn't I? Yes, you did.
And I, I then started talking about this chap I'd listened to
on LBC and then you emailed and said I was the chap you were
talking about. Mate.
Go straight into it. Tell everybody who you are.
Tell about your family and the unique situation you're in.
Yeah. So I have four children.
Yeah. Sorry.
I mean, yeah, Yeah, Four
children. So three of them are autistic,
all boys. I mean, you know, And then I got
my daughter as well. So my eldest is 19 now.
It's quite funny, actually, because when we first got the
diagnosis for him, we thought, oh, that's going to, like,
answer all our prayers. And you know, no, it was it,
apologies. But in terms of the
professionals, it was a label that was it.
Then we find out, obviously go through the EHCP process, then
you know, and and yeah, it it, we were so naive to the fact of
that actually that diagnosis, although it acknowledges, but
that's all it does. That's, that's that's it's like,
oh, you're autistic. That's it there.
There's no following. That's it, yeah.
Pretty much. So then with my middle son, we
started picking up some sort of traits in the school where
raising sort of issues and everything.
So we were a bit more prepared then.
So we sort of pushed. He was in primary school and we
asked them to do an EH to start an EHCP application.
He'd had hang on, I got me dates and everything mixed up, but
base effectively we were asking his SENCO to start producing the
paperwork for an EHCP application and he would say
it's all right, let's see how things go first, right, OK, so
then we moved house and then subsequently we moved school.
The school he went into were fantastic, mainstream school,
but they got it straight away. And so they spoke to his
previous school and said can we have all of his evidence?
It was just before COVID and they said no, we've sent it.
No, no. The only thing you've sent us is
the initial sheet, which has his date of birth, contact details,
and that's it. Yeah, that's it.
There was literally nothing, no. Other evidence.
No ever evidence, no, no paperwork, nothing.
It was just this is him and yeah, there you go.
On you go sort of thing. And he is currently still a
Senko at another school, which I find quite worrying.
So anyway, so then we, we got the EHCP for that.
Oh no, that's right. So because we had no evidence,
the school said, look, we're happy to put an application
through, but we know that it's not really going to be accepted
because we haven't got the evidence.
So he thought, well, it's worth a try, put it through.
Lo and behold, it got rejected. So he said, right, you can
either appeal it or why don't we go away for sort of a year, 18
months. We've got time on our side to
build up the evidence. Of course, then COVID happened,
so that added another year on to it.
So we eventually got the HCP for him just before he went to
secondary school. So we, we wanted, we wanted this
all sorted way before like, because we thought, well, he's
in a school that is making adaptations for him and I, I
can't speak highly enough of them.
They, they gave him a one to one, they gave him a separate
room that he could go to when things become overwhelmed.
They were really, really good. And that was all that was, was
just one or two teachers that got it.
And they knew when they, you know, so we had a really
negative experience from his previous school to a really good
one. And it was just night and day.
So he got his EHCP literally June before he was due to go
into secondary school. So when everybody was got their
named schools, he didn't have anywhere to go.
We had no, so we had to fight it.
We took it through legal tribunals and we eventually won.
So he's now happy and settled, right.
So then with my youngest, he is non verbal has Pika and you talk
about the coincidences. I've got plenty of stories of
them. I think the funniest one, but
not really funny. But the the one that really
stands out was he shares a room with my other son and he woke up
by 4:00 in the morning, 1 morning.
And so I went up, I'm half asleep, just bring him out of
bed. And I felt all these like sort
of bumps on him. And I was like, what's what's,
what's going on? So I go out into the hallway,
turn along because I don't really want to wake my other son
up. So he's all pitch black in the
bedroom. And I said I was like, oh, no.
And so with the pika, he will eat anything insight and and one
of his best things is sand. He loves the stuff.
Yeah, so it was. And it was all over him, the
sheets, everything right. So yeah, it was.
Yeah, can't wipe that stuff off. When it's it was like right in
the shower, four, 4:00 in the morning, showering him like just
just get it off, bring him downstairs, bag up the the bed
in and Chuck it in the wash and deal with that reasonable hour.
So, yeah, so then his needs become really, really hard to
manage. I was working as HGV driver.
I'd have phone calls from my wife to say I need you to come
home. We we live in Bristol.
So I'd say, well, that's fine, but I'm in Hereford.
It's going to take me a good 2 1/2 three hours.
Just get back to the yard, then travel on.
So it got to a point where we were like, I'm going to have to
give up work. So I gave up work.
I've always worked and I've, I absolutely hated it of having to
claim benefits and, and stuff like that.
I've, I, it's, it was horrible because it, it just takes away
the person you are and you like, you know, whilst you're working.
If you have children with, with autism, you have that other side
to you. You have that.
That's me. That's what I get up to.
That's what I do. And then at home, I'm, I'm the
dad and I, you know, help out where I can.
Like you say, us, us dads, we ain't the greatest.
We do our best. But you know what?
See, what happens with me is so my wife, she'd done all the
paperwork. I was the one that was pointed
in a direction to shout at people and make things happen.
Yeah. And that's what I do.
I'm like, right, who do you need me to e-mail?
Who do you mean to me to rant and rave that and we get it
sorted. So together we're quite a good
team because I, I can't sit and write paperwork for hours and
hours. I'm ATV driver.
I'm not academic in any way, shape or form, but she would be
able to sit down, go through all the forms that I'm looking at.
I'm like, what? I couldn't even sit down and go
through an EHCP application with someone because I, I'll be
honest, I don't have a clue. But when time scales haven't
been made, I'm quite happy to go up to the council with four
council meetings and say, look, you're failing our kids.
I went to a council meeting before and they were talking
about how many children are on the waiting list for EHCP
applications. I could not believe what I was
hearing. They turned around and they said
yeah, last year we were 80%. We didn't meet the the 20 week
criteria. This year we've done really
well. We're at 70%.
We, we, no, we've, we've brought it down by 10%.
So I literally stood up in that meeting and I said, excuse me,
you're saying that that's an achievement.
So what you're telling me is 70% of those kids are sat there
waiting for an EHCP application. You are failing and you are
rewarding yourself for that. Like you need to take a, a good
look and, and you know, I appreciate things are tight and
everything like that, but it's not good enough.
Simple as that. And, and you're sat there and
you're saying we're doing well, You're not doing well.
You're failing. 30% of the kids in Bristol are getting met on
time. What about the other 70%?
There's like 6-7 hundred kids that you are failing in that one
month, every single month. So yeah, they, they don't really
like me too much, but never mind about that.
I, I'm don't really want to be friends with them anyway.
No, we're not there to be friends, are we?
Exactly. So, and then so with, with my
youngest, we, we got to a point where obviously I was off work.
We were given 2 to one care. We just couldn't do it anymore.
We, we had. So in 2023, my dad unexpectedly
passed away. And so he worked, he's worked in
nursing all his life. He's had he, he worked in a
place called Stoke Park, which some people may know of that it
was back in the day it was a residential setting for disabled
children. So he had a wealth of experience
and my mum and they used to be our support network.
My mum works at a special needs school or up until last this
year where she's retired. And after my dad died, she said
to me, I can't do it on my own. I Oscar's needs are, are so
much, I cannot do it on my own. I said, no, I, I understand
that. I get that.
So we lost our only support network two years ago.
And we spoke to the local authority and they put, they put
support workers in every Saturday and Sunday.
And some of them were good at what they did.
And I, I don't want to tarnish everyone, but there were others
that just should not be in that job at all.
You know, we talk about routines and time scales and stuff like
that. There were times where they turn
up 45 minutes late. And then I remember once my wife
was away, so it was just me and I had a stinking cold.
I was like, I was ready to just go asleep.
So I thought, right, get him ready so that 10:00 he's out and
I can just sleep and they turn up at 10:45.
By that point he had stripped naked again because he's like,
well, I was dressed, I was ready to go.
We, we used to get him dressed 5 minutes before he was due to go
because otherwise he'd just strip.
It's. Quite common that, yeah, yeah.
So they turned up and by this point he was so dysregulated.
They went two minutes around the corner and I had a phone call
from him saying it's not safe because he's like dysregulated
in the car so we're going to have to bring him back.
Like the only reason you're bringing him back is because you
were late. Oh, I'm sorry, I can understand
5 minutes, but 45 minutes? Wait, considering you're coming
every single week, You know the routines, you know you know the
set up. And you know how important
routines are with. All you know, and so This is why
he is dysregulated, because he was ready to go out and you've
not turned up, so you know. So, yeah, so then that put me
back as well. And that was a hard day, I'm not
going to lie. And then, so then we had an
incident with the soft player in Bristol where we were told by
the support workers that there was an incident that happened.
So and he was told it's probably best for him just to go to the
send sessions. And I thought, well, hang on a
minute, he's been going there every Saturday and Sunday for
six months. You're happy to take the money
off of them. Why now suddenly one incident
and it was I think basically he'd he'd hit a child, but it
was hard to understand the context of what had happened.
So I said, well, look, I said I'm not condoning that
behaviour. But obviously he's non verbal.
He's autistic. He has peaker there.
There's a lot of things going on that could explain why he's
reacted the way he did. I'm not blaming you the the
other child, but he's just understanding.
I said why are you now saying he can't come hang on a minute.
No, this, this, it wasn't just this one isolated incident.
We've had to tell the support workers, bear in mind there's
two of them each time, numerous times to actually do their job.
So what do you mean? Well, there's one time in a
public soft play where he'd stripped and another parent and
the staff at the soft play centre had to tell the support
workers, look, he's naked, you're going to have to swim
out. I'm like, what?
So we've changed agencies. But again, it was like for us
really it was just having that break.
But we never felt completely settled and like that he was
fine. So then we started exploring,
you know, because like we couldn't, we couldn't continue
how we were. So we explored about residential
school and it's, it's the hardest thing really to have to
admit that you can't meet your child's needs.
It does anger me a little bit because I think if there was
more help and support earlier on, then maybe we wouldn't be at
this place. Maybe we would be able to manage
it. But it, it is what it is.
I can't change the past. All I can do is change the
future. And like I so he is now in a
residential setting and they are doing a fantastic job with him.
But it's so hard of handing your son over.
Like we still maintain all parental responsibilities.
It's not anything like where they've they've removed him.
It's been a joint decision with us and the local authority, but
it's still, I don't think it will ever sit right for me.
But like the way I look at it is that they've got specialists
there, they've got speech and language, They've got all the
support you could possibly think of.
And like I've said, if he comes out with there with some form of
communication, however that looks, I don't care how it
looks. I don't, I don't you know, if
it's a like AAC board or so just so long as there is some form of
communication because I feel that a lot of his frustrations
is purely because of the lack of being unable to communicate what
his needs are. So if he comes out of there,
he's 8 years old now. So he will be there right up
until he's 19. So they've got a good window to
put in that intensive support. And it's my hope that whatever
happens, he's got communication and we don't know, he may bear
to come back home at some point and and live permanently.
But it's because of the lack of support we've had to make this
decision. And it, you know, and, and it
does. And like I've said in on that
LPC call in, it angers me sometimes when I hear like, oh,
autism is my superpower. I, I get that.
And, and I don't want to dismiss that.
I totally understand that there are some people that they're
able to thrive. And I, I applaud anyone for
that. And I think that's brilliant.
But what I would say is that you don't speak for the whole
community. There are masses of struggle
that are unseen. And, and, you know, even some as
simple as like Christmas, we don't go to any family events
ever. We don't, we don't do it because
there's no one to look after the children anyway.
The thought of having a few drinks and coming home, the
thought of waking up in the morning with a fuzzy head whilst
having to look after all our children just don't, don't
excite me. I, I'm thinking, Nah, you're all
right. I like and like a lot of the
families houses, they're not really accessible for for Oscar.
So we we miss out on that and also our other children miss out
on that as well. So the hope is now that our
others will be able to benefit from those sort of interactions
as well. But yeah, it's just from my own
experience. I hate autism.
I, I, I know that sounds a bit, you know, because and, and I, I
get it again, I, I really want to stress, I'm not saying it.
I'm not speaking here for everyone.
And I know everybody is different.
So I don't want to be, you know, but from my experience of having
to, you know, do the appointments and visits and,
and, you know, you don't know what's going to happen from one
day to the next. I hate it.
And I think that, yeah, it's just, it's hard work.
I think the thing with autism, autism is we always talk about
it, we always hop on about it. It's a very huge spectrum and it
isn't just on a linear line, it's infinitely wide as well.
So the autism you hate? Is there?
Yes, Yeah, yeah, yeah. Yeah, the autism that I deal
with is here. And then you have some really
high functioning autistics that are completely when you say you
hate autism, you're not talking about the same autism that
everyone else is. Experiencing.
Your autism that you're dealing with.
So as long as everyone understands that, we can all
appreciate it. Parents can that can relate to
that. I've got days where.
I love Thomas's autism. I love it.
If it ever went away, and I've said this before, the kid that
walks in the room would be a different child, right?
And, and I'd feel like I've lost the kid as much as it was
grieving a child that never existed when I first found out
about autism. If if he then lost it, I'd be
grieving the kid that I've been living with for six years.
What you don't, what you don't enjoy though, is a war that
doesn't understand it. No, and relentless.
Yep. Dealing with specialists or
dealing with services that aren't fit for purpose as you've
described. Absolutely.
But the autism that I'm dealing with, generally speaking, works.
Yeah. Is that fair to say, babe?
Yeah, he's understood. And the system, the school's
great. At the moment, when he's 18, I'm
unclue what's going to happen. But at the moment, fine.
But you're autism and white and a different autism.
Yeah, they're all called the same thing.
You've had to. We've talked about this before.
You've had to make a decision that's best for your child as
opposed to what's best for you, and a lot of us in the early
days, until we get our heads around that, it's extremely,
extremely difficult and it doesn't make it any easier.
Now that's your your call on LBC mate.
That's why I was like it stuck. And like I said earlier, it was
took some balls. I did mate to call up and say
that I I had to the the had to hang my kid in for a
residential. So the backlash didn't exist.
I was thinking, yeah, there's going.
To be some Dick. Heads in the night, I was ready.
Didn't happen. I had so with with trying to
fight with the local authority to get his place was also
insulting. So they said to us that they
need to explore all possible options.
Yeah, right. So right.
OK. So at this point, he had a
special school ready in place to start September, just gone in
Bristol. So what they were exploring was
the possibility of him going into foster care to remain in
Bristol. Remember Me saying that?
And so I said to him, I said, hang on a minute.
I said, So what you're saying like, what support systems is
going to be put in place if this goes ahead?
I said, like, for a start, it's not going to happen because I
will not agree to it. I said, but hypothetically, what
support systems are in are in place to give the couple who are
going to foster him the respite that they need.
And he said nothing. What, so like not even getting
support workers at the weekends? Like, nothing.
Just school. Yeah, just school.
So he's a vulnerable child. He's unable to communicate.
He will eat literally anything. We are regularly treating him
for worms because he will eat his own faeces.
He will smear, he will destroy things.
Do you not think that a foster placement is probably very high
risk of failure? Said.
And then if that happens, where does he go?
Are we going to get a phone call to say actually you're going to
have to take him back? Does he go into a standard
mainstream residential placement?
Because if he does that, that's going to absolutely destroy him
and he's going to destroy me and his his mum and my wife.
He said. It's just not going to work.
So he said, well, we need to explore.
So basically what you're telling me is you want to save a bit of
money because you've got this school place ready for him.
So it's going to cost you a lot less to put him into foster care
than it is going to put to residential care.
I said, what is what is your end goal?
What is your main focus? Surely it's got to be as social
services. Your focus has to be on the
child. So are you not looking at this
thinking actually alarm bells, foster care is not going to
work? I said, And it's an insult to me
and his mum because we've done this for eight years and we've
got to a point now because our only support network, which was
my mum and dad, is no longer there.
Why do you think complete strangers are going to be able
to do a better job? Because that's an insult.
The fact we are saying we can't do it is hard enough to have to
sit there and say we cannot look after our child anymore, we
cannot meet his needs, and then you're saying, oh, we'll find
two other. Parents and and you did it for
as long as you did, because your biological parents are actually
that that biological. Tried.
To help your kid if a foster
parent. Doesn't they will have a they
have they got to make one phone call and that's it.
Can't do this, yeah. Yeah.
So they're not, they're not going to stick with it like you,
like you did are. You mad like it's going to cost
you more money in the long run because you're going to have to
find placement after placement. Do you think it was about the
money of. Course it was because they come
back to us afterwards and said yeah, we, we've enquired, we've
even gone to external companies and nobody can meet his needs.
So what would have happened if there was someone that said they
could meet his needs? You'd have been pushing down
that road and it, and it's all money and it, and it angers the
hell out of me because you know, if and, and I feel like with,
with governments, they talk the talk.
I've spoke to my local MP about this and they, they talk the
talk. They like to say, yeah, we're
going to, you know, Labour at the moment, we're going to do
the SEND reforms. I have 0 confidence that that is
going to make any difference at all.
Because if you really want to sort out the SEND system, you,
you need to make mainstream inclusive for everybody, which
is going to cost money because you're going to have to make
like my middle son in primary school, they had, they called it
a rainbow room. So when things become too much,
he was able to just go there. And, and he, so he's ADHD, so a
lot of his frustration will come out in violence, right?
So he got to a point where he had a trusted member of staff
who was able to speak to him and and they, they could see before
he'd snapped, They, they were on it.
They knew. Right.
Jack, do you think you need to go?
Yeah. OK.
Right. And he would go.
And he'd done really, really well.
But that is going to have to be replicated for hundreds of
thousands of students. You'd have to roll it out.
It would every single school. And we already know some schools
are falling down and they've got kind of makeshift classrooms and
everything else like that. So we know that's never going to
happen. They don't have the space for
it. You need every single member of
staff trained to be able to identify and work with these
children. So it's again.
It's it's, it's never going to happen.
And I think it's down to us as parents to advocate for our kids
and be that pain in the ass to the local authorities until they
go, do you know what? Get him out of our air, give him
what he wants. And unfortunately, until every
parent does that, nothing is going to change.
And one of our last little thing to to note, you know, we, we
talk about is there a biological link?
Is there, You know, now, the one thing I always stick in my head
is if there is some sort of biological link, that must mean
that there must be some parents out there that have either
autism or ADHD themselves. How the hell are they going to
be able to advocate for their kids like I've done, like other
people have done when they basic written might might be a
struggle for them, like, you know, they may have dyslexia,
They may have exactly, you know, and I think it's not fair.
What I would like to see in an ideal world is that when you get
diagnosed, there is a caseworker assigned to each child and they
advocate for them and they are there for them, not for the
parents. They are there for them.
So whatever needs to be done for that child, they are their
representative within the local authority and they will fight
and fight and fight for them alongside the parents.
But I ain't going to work. But I ain't going to happen.
So yeah, we've. We've said it in the past, I
think we've said in the previous episode that unfortunately when
you're going through the diagnosis stage and you're
dealing with local authorities, you have to be a pain in the
ass. You have to be on them.
You have to be the person that shouts the loudest sometimes so
that you'll get seen. But equally said, there will be
parents exactly what you've just described there who aren't very
good at paperwork or don't know how to kind of work their way
through or don't have a network that will help them, that
unfortunately their children will fall through the gap.
And it's a horrible thing to say.
But then you think, oh, I've got my child.
The, the need, the, the care and the education it needs.
I mean, we got her into Sevendale.
I think they took on about six children this year.
And for every place, it was probably about 50-60 children
going up to that place. And I felt amazing that I got
her, that the education, the care that she needed.
At the same time I reflected on it going shit, there's so many
families now that screwed. So my my middle son, he goes to
a specialist secondary school and we took the local authority
to court for that and we won. And because of that all the
paperwork come through about the costs and everything like that.
His education per year is £120,000 right?
So that means they they have a maximum of 50 kids in that whole
school. So that means every single child
is the the local authority is paying £104,000 a year.
Now this is where I think that the local authority are missing
a trek. If they were to build their own
specialist provisions, it ain't going to cost £104,000 a year.
So that means by the end of his academic years in secondary
school, his education will be half, £1,000,000.
And I just find that mad that one child is going to cost them
half. That's more than Eton.
That's more than him going to Eton College, Right.
And I just, yeah, for me, I just it, it, it angers me because
everything is being passed to the private sector and we're,
we're we're paying taxpayer money.
And it, it's it's just a waste. It, it is because if they
brought it in house, yes, there would be the initial cost.
But once that initial cost is done, like you're laughing.
But yeah, that's pretty much so, yeah.
Thank you very much. I appreciate.
It. Oh yeah.
Thank you mate. No worries, that's an elephant
thing to share. Yeah, I know.
Toughen it. Yeah, can't imagine, Can't
imagine having to do what you've done.
You keep doing what you're doing, mate.
Yeah, man. I mean, we see him every sort of
fortnight as well. So and he's you know, and we
can, we can literally have him back home whenever we want as
well. So there's no, there's no like
you haven't handed your kiddo. No, no, no.
So we still maintain. Responsibility.
Responsibility and everything like that.
So we can just phone him up and say, oh, we want Oscar come back
this weekend and they will even help.
We're fan sport. They'll bring him halfway or all
the way back home if if we wanted to.
So I mean, like I said, as a professional driver, it's not
Bristol to Worcester. It's like nothing really.
So but yeah, so it's, it's, we still maintain that contact.
We have video calls of him. The video calls are really funny
because if, if, if he has one before he goes to bed, he might
as well just tell us to, to do one.
I'm ready to go bed. He's he's not interested midway
through the day. He's like, right, let's be
mischievous. Let's just, I'm going to run
about. And then the support workers
like running around with the phone trying to keep on the keep
him on the video. And it lasts for about 5
minutes. But it's just to have that
interaction. Yeah.
That's cool. Thank you very much.
Appreciate. It.
See you mate. Leave.
That one there.