1 00:00:00,880 --> 00:00:02,240 Hello mate. Hello, Luke. 2 00:00:02,240 --> 00:00:02,720 How are you? Yeah, not. 3 00:00:02,960 --> 00:00:06,480 Bad. Right, so I heard you on LBC, 4 00:00:06,480 --> 00:00:07,640 didn't I? Yes, you did. 5 00:00:07,640 --> 00:00:10,600 And I, I then started talking about this chap I'd listened to 6 00:00:10,600 --> 00:00:14,280 on LBC and then you emailed and said I was the chap you were 7 00:00:14,280 --> 00:00:16,640 talking about. Mate. 8 00:00:16,640 --> 00:00:18,480 Go straight into it. Tell everybody who you are. 9 00:00:18,480 --> 00:00:21,400 Tell about your family and the unique situation you're in. 10 00:00:21,400 --> 00:00:25,240 Yeah. So I have four children. 11 00:00:26,720 --> 00:00:27,320 Yeah. Sorry. 12 00:00:27,920 --> 00:00:30,160 Sorry. I mean, yeah, Yeah, Four 13 00:00:30,160 --> 00:00:34,920 children. So three of them are autistic, 14 00:00:35,080 --> 00:00:38,480 all boys. I mean, you know, And then I got 15 00:00:38,480 --> 00:00:42,960 my daughter as well. So my eldest is 19 now. 16 00:00:44,880 --> 00:00:46,960 It's quite funny, actually, because when we first got the 17 00:00:46,960 --> 00:00:50,400 diagnosis for him, we thought, oh, that's going to, like, 18 00:00:51,000 --> 00:00:54,120 answer all our prayers. And you know, no, it was it, 19 00:00:55,160 --> 00:00:57,400 apologies. But in terms of the 20 00:00:57,840 --> 00:01:00,240 professionals, it was a label that was it. 21 00:01:01,600 --> 00:01:04,879 Then we find out, obviously go through the EHCP process, then 22 00:01:04,920 --> 00:01:10,960 you know, and and yeah, it it, we were so naive to the fact of 23 00:01:10,960 --> 00:01:15,320 that actually that diagnosis, although it acknowledges, but 24 00:01:15,320 --> 00:01:18,320 that's all it does. That's, that's that's it's like, 25 00:01:18,720 --> 00:01:20,280 oh, you're autistic. That's it there. 26 00:01:20,320 --> 00:01:23,040 There's no following. That's it, yeah. 27 00:01:23,080 --> 00:01:30,760 Pretty much. So then with my middle son, we 28 00:01:30,760 --> 00:01:34,600 started picking up some sort of traits in the school where 29 00:01:35,240 --> 00:01:37,200 raising sort of issues and everything. 30 00:01:37,760 --> 00:01:39,680 So we were a bit more prepared then. 31 00:01:39,680 --> 00:01:45,880 So we sort of pushed. He was in primary school and we 32 00:01:45,880 --> 00:01:50,640 asked them to do an EH to start an EHCP application. 33 00:01:52,320 --> 00:01:56,600 He'd had hang on, I got me dates and everything mixed up, but 34 00:01:56,600 --> 00:02:02,800 base effectively we were asking his SENCO to start producing the 35 00:02:02,800 --> 00:02:07,640 paperwork for an EHCP application and he would say 36 00:02:08,919 --> 00:02:13,040 it's all right, let's see how things go first, right, OK, so 37 00:02:13,040 --> 00:02:16,320 then we moved house and then subsequently we moved school. 38 00:02:17,040 --> 00:02:20,320 The school he went into were fantastic, mainstream school, 39 00:02:20,600 --> 00:02:26,080 but they got it straight away. And so they spoke to his 40 00:02:26,080 --> 00:02:28,640 previous school and said can we have all of his evidence? 41 00:02:28,640 --> 00:02:33,080 It was just before COVID and they said no, we've sent it. 42 00:02:33,400 --> 00:02:36,000 No, no. The only thing you've sent us is 43 00:02:36,080 --> 00:02:39,800 the initial sheet, which has his date of birth, contact details, 44 00:02:39,800 --> 00:02:41,000 and that's it. Yeah, that's it. 45 00:02:41,360 --> 00:02:44,440 There was literally nothing, no. Other evidence. 46 00:02:44,440 --> 00:02:47,840 No ever evidence, no, no paperwork, nothing. 47 00:02:47,840 --> 00:02:50,720 It was just this is him and yeah, there you go. 48 00:02:50,800 --> 00:02:53,680 On you go sort of thing. And he is currently still a 49 00:02:53,680 --> 00:02:56,880 Senko at another school, which I find quite worrying. 50 00:02:57,800 --> 00:03:00,480 So anyway, so then we, we got the EHCP for that. 51 00:03:01,240 --> 00:03:03,960 Oh no, that's right. So because we had no evidence, 52 00:03:03,960 --> 00:03:06,280 the school said, look, we're happy to put an application 53 00:03:06,280 --> 00:03:10,560 through, but we know that it's not really going to be accepted 54 00:03:10,560 --> 00:03:12,040 because we haven't got the evidence. 55 00:03:12,560 --> 00:03:15,000 So he thought, well, it's worth a try, put it through. 56 00:03:15,720 --> 00:03:18,160 Lo and behold, it got rejected. So he said, right, you can 57 00:03:18,160 --> 00:03:23,720 either appeal it or why don't we go away for sort of a year, 18 58 00:03:23,720 --> 00:03:26,080 months. We've got time on our side to 59 00:03:26,080 --> 00:03:28,200 build up the evidence. Of course, then COVID happened, 60 00:03:28,360 --> 00:03:31,400 so that added another year on to it. 61 00:03:32,080 --> 00:03:35,520 So we eventually got the HCP for him just before he went to 62 00:03:35,520 --> 00:03:38,840 secondary school. So we, we wanted, we wanted this 63 00:03:38,840 --> 00:03:42,280 all sorted way before like, because we thought, well, he's 64 00:03:42,280 --> 00:03:45,560 in a school that is making adaptations for him and I, I 65 00:03:45,560 --> 00:03:46,960 can't speak highly enough of them. 66 00:03:46,960 --> 00:03:49,960 They, they gave him a one to one, they gave him a separate 67 00:03:49,960 --> 00:03:52,320 room that he could go to when things become overwhelmed. 68 00:03:52,320 --> 00:03:55,560 They were really, really good. And that was all that was, was 69 00:03:55,560 --> 00:03:57,800 just one or two teachers that got it. 70 00:03:57,920 --> 00:04:00,760 And they knew when they, you know, so we had a really 71 00:04:00,760 --> 00:04:03,520 negative experience from his previous school to a really good 72 00:04:03,520 --> 00:04:06,000 one. And it was just night and day. 73 00:04:07,120 --> 00:04:16,240 So he got his EHCP literally June before he was due to go 74 00:04:16,240 --> 00:04:20,959 into secondary school. So when everybody was got their 75 00:04:21,279 --> 00:04:23,800 named schools, he didn't have anywhere to go. 76 00:04:24,280 --> 00:04:25,760 We had no, so we had to fight it. 77 00:04:25,760 --> 00:04:29,000 We took it through legal tribunals and we eventually won. 78 00:04:29,000 --> 00:04:31,680 So he's now happy and settled, right. 79 00:04:32,040 --> 00:04:41,520 So then with my youngest, he is non verbal has Pika and you talk 80 00:04:41,520 --> 00:04:44,520 about the coincidences. I've got plenty of stories of 81 00:04:44,520 --> 00:04:47,080 them. I think the funniest one, but 82 00:04:47,080 --> 00:04:48,880 not really funny. But the the one that really 83 00:04:48,880 --> 00:04:55,880 stands out was he shares a room with my other son and he woke up 84 00:04:55,880 --> 00:04:57,720 by 4:00 in the morning, 1 morning. 85 00:04:57,920 --> 00:05:02,760 And so I went up, I'm half asleep, just bring him out of 86 00:05:02,760 --> 00:05:07,640 bed. And I felt all these like sort 87 00:05:07,640 --> 00:05:09,920 of bumps on him. And I was like, what's what's, 88 00:05:10,240 --> 00:05:13,440 what's going on? So I go out into the hallway, 89 00:05:13,440 --> 00:05:15,360 turn along because I don't really want to wake my other son 90 00:05:15,360 --> 00:05:16,640 up. So he's all pitch black in the 91 00:05:16,640 --> 00:05:19,640 bedroom. And I said I was like, oh, no. 92 00:05:20,160 --> 00:05:26,120 And so with the pika, he will eat anything insight and and one 93 00:05:26,120 --> 00:05:29,880 of his best things is sand. He loves the stuff. 94 00:05:32,000 --> 00:05:34,800 Yeah, so it was. And it was all over him, the 95 00:05:34,800 --> 00:05:37,360 sheets, everything right. So yeah, it was. 96 00:05:38,360 --> 00:05:41,200 Yeah, can't wipe that stuff off. When it's it was like right in 97 00:05:41,200 --> 00:05:45,440 the shower, four, 4:00 in the morning, showering him like just 98 00:05:45,440 --> 00:05:49,840 just get it off, bring him downstairs, bag up the the bed 99 00:05:49,840 --> 00:05:53,800 in and Chuck it in the wash and deal with that reasonable hour. 100 00:05:54,320 --> 00:06:00,520 So, yeah, so then his needs become really, really hard to 101 00:06:00,520 --> 00:06:03,720 manage. I was working as HGV driver. 102 00:06:05,200 --> 00:06:09,600 I'd have phone calls from my wife to say I need you to come 103 00:06:09,600 --> 00:06:11,760 home. We we live in Bristol. 104 00:06:12,600 --> 00:06:15,760 So I'd say, well, that's fine, but I'm in Hereford. 105 00:06:15,880 --> 00:06:18,840 It's going to take me a good 2 1/2 three hours. 106 00:06:18,840 --> 00:06:21,520 Just get back to the yard, then travel on. 107 00:06:22,760 --> 00:06:25,040 So it got to a point where we were like, I'm going to have to 108 00:06:25,040 --> 00:06:27,480 give up work. So I gave up work. 109 00:06:27,880 --> 00:06:31,760 I've always worked and I've, I absolutely hated it of having to 110 00:06:32,400 --> 00:06:34,440 claim benefits and, and stuff like that. 111 00:06:34,440 --> 00:06:38,040 I've, I, it's, it was horrible because it, it just takes away 112 00:06:38,880 --> 00:06:43,800 the person you are and you like, you know, whilst you're working. 113 00:06:44,160 --> 00:06:48,600 If you have children with, with autism, you have that other side 114 00:06:48,600 --> 00:06:50,000 to you. You have that. 115 00:06:50,480 --> 00:06:52,120 That's me. That's what I get up to. 116 00:06:52,120 --> 00:06:55,000 That's what I do. And then at home, I'm, I'm the 117 00:06:55,000 --> 00:06:58,160 dad and I, you know, help out where I can. 118 00:06:58,160 --> 00:07:00,520 Like you say, us, us dads, we ain't the greatest. 119 00:07:00,520 --> 00:07:03,320 We do our best. But you know what? 120 00:07:06,120 --> 00:07:09,800 See, what happens with me is so my wife, she'd done all the 121 00:07:09,800 --> 00:07:12,760 paperwork. I was the one that was pointed 122 00:07:12,760 --> 00:07:15,960 in a direction to shout at people and make things happen. 123 00:07:16,680 --> 00:07:18,320 Yeah. And that's what I do. 124 00:07:18,440 --> 00:07:20,240 I'm like, right, who do you need me to e-mail? 125 00:07:20,240 --> 00:07:22,360 Who do you mean to me to rant and rave that and we get it 126 00:07:22,360 --> 00:07:24,280 sorted. So together we're quite a good 127 00:07:24,280 --> 00:07:27,320 team because I, I can't sit and write paperwork for hours and 128 00:07:27,320 --> 00:07:28,480 hours. I'm ATV driver. 129 00:07:28,480 --> 00:07:33,240 I'm not academic in any way, shape or form, but she would be 130 00:07:33,240 --> 00:07:35,560 able to sit down, go through all the forms that I'm looking at. 131 00:07:35,560 --> 00:07:40,080 I'm like, what? I couldn't even sit down and go 132 00:07:40,080 --> 00:07:42,880 through an EHCP application with someone because I, I'll be 133 00:07:42,880 --> 00:07:46,560 honest, I don't have a clue. But when time scales haven't 134 00:07:46,560 --> 00:07:49,840 been made, I'm quite happy to go up to the council with four 135 00:07:49,840 --> 00:07:52,680 council meetings and say, look, you're failing our kids. 136 00:07:53,320 --> 00:07:56,520 I went to a council meeting before and they were talking 137 00:07:56,520 --> 00:08:01,040 about how many children are on the waiting list for EHCP 138 00:08:01,040 --> 00:08:03,760 applications. I could not believe what I was 139 00:08:03,760 --> 00:08:05,320 hearing. They turned around and they said 140 00:08:05,880 --> 00:08:13,160 yeah, last year we were 80%. We didn't meet the the 20 week 141 00:08:13,200 --> 00:08:15,960 criteria. This year we've done really 142 00:08:15,960 --> 00:08:17,280 well. We're at 70%. 143 00:08:18,120 --> 00:08:20,880 We, we, no, we've, we've brought it down by 10%. 144 00:08:21,280 --> 00:08:24,040 So I literally stood up in that meeting and I said, excuse me, 145 00:08:24,360 --> 00:08:26,520 you're saying that that's an achievement. 146 00:08:26,760 --> 00:08:29,800 So what you're telling me is 70% of those kids are sat there 147 00:08:29,800 --> 00:08:33,520 waiting for an EHCP application. You are failing and you are 148 00:08:33,520 --> 00:08:37,400 rewarding yourself for that. Like you need to take a, a good 149 00:08:37,400 --> 00:08:40,679 look and, and you know, I appreciate things are tight and 150 00:08:40,679 --> 00:08:43,720 everything like that, but it's not good enough. 151 00:08:44,720 --> 00:08:47,040 Simple as that. And, and you're sat there and 152 00:08:47,040 --> 00:08:48,800 you're saying we're doing well, You're not doing well. 153 00:08:48,800 --> 00:08:53,440 You're failing. 30% of the kids in Bristol are getting met on 154 00:08:53,440 --> 00:08:55,640 time. What about the other 70%? 155 00:08:55,720 --> 00:08:59,720 There's like 6-7 hundred kids that you are failing in that one 156 00:08:59,720 --> 00:09:03,680 month, every single month. So yeah, they, they don't really 157 00:09:03,680 --> 00:09:05,600 like me too much, but never mind about that. 158 00:09:06,000 --> 00:09:08,320 I, I'm don't really want to be friends with them anyway. 159 00:09:08,320 --> 00:09:09,680 No, we're not there to be friends, are we? 160 00:09:09,680 --> 00:09:13,200 Exactly. So, and then so with, with my 161 00:09:13,200 --> 00:09:18,040 youngest, we, we got to a point where obviously I was off work. 162 00:09:18,560 --> 00:09:25,000 We were given 2 to one care. We just couldn't do it anymore. 163 00:09:25,000 --> 00:09:29,680 We, we had. So in 2023, my dad unexpectedly 164 00:09:29,680 --> 00:09:34,320 passed away. And so he worked, he's worked in 165 00:09:34,320 --> 00:09:38,280 nursing all his life. He's had he, he worked in a 166 00:09:38,280 --> 00:09:41,520 place called Stoke Park, which some people may know of that it 167 00:09:41,520 --> 00:09:46,080 was back in the day it was a residential setting for disabled 168 00:09:46,080 --> 00:09:49,080 children. So he had a wealth of experience 169 00:09:49,080 --> 00:09:53,120 and my mum and they used to be our support network. 170 00:09:54,000 --> 00:09:58,040 My mum works at a special needs school or up until last this 171 00:09:58,080 --> 00:10:03,320 year where she's retired. And after my dad died, she said 172 00:10:03,320 --> 00:10:07,680 to me, I can't do it on my own. I Oscar's needs are, are so 173 00:10:07,680 --> 00:10:10,520 much, I cannot do it on my own. I said, no, I, I understand 174 00:10:10,520 --> 00:10:11,200 that. I get that. 175 00:10:11,200 --> 00:10:14,640 So we lost our only support network two years ago. 176 00:10:15,160 --> 00:10:21,800 And we spoke to the local authority and they put, they put 177 00:10:21,800 --> 00:10:24,280 support workers in every Saturday and Sunday. 178 00:10:26,080 --> 00:10:29,680 And some of them were good at what they did. 179 00:10:29,680 --> 00:10:33,560 And I, I don't want to tarnish everyone, but there were others 180 00:10:33,560 --> 00:10:37,600 that just should not be in that job at all. 181 00:10:38,240 --> 00:10:41,440 You know, we talk about routines and time scales and stuff like 182 00:10:41,440 --> 00:10:43,520 that. There were times where they turn 183 00:10:43,520 --> 00:10:47,200 up 45 minutes late. And then I remember once my wife 184 00:10:47,200 --> 00:10:50,640 was away, so it was just me and I had a stinking cold. 185 00:10:50,720 --> 00:10:53,600 I was like, I was ready to just go asleep. 186 00:10:53,640 --> 00:10:57,320 So I thought, right, get him ready so that 10:00 he's out and 187 00:10:57,320 --> 00:11:01,400 I can just sleep and they turn up at 10:45. 188 00:11:01,840 --> 00:11:04,880 By that point he had stripped naked again because he's like, 189 00:11:04,880 --> 00:11:06,200 well, I was dressed, I was ready to go. 190 00:11:06,920 --> 00:11:09,760 We, we used to get him dressed 5 minutes before he was due to go 191 00:11:09,760 --> 00:11:10,880 because otherwise he'd just strip. 192 00:11:11,040 --> 00:11:12,640 It's. Quite common that, yeah, yeah. 193 00:11:13,160 --> 00:11:19,560 So they turned up and by this point he was so dysregulated. 194 00:11:19,880 --> 00:11:22,480 They went two minutes around the corner and I had a phone call 195 00:11:22,480 --> 00:11:25,400 from him saying it's not safe because he's like dysregulated 196 00:11:25,400 --> 00:11:27,160 in the car so we're going to have to bring him back. 197 00:11:27,720 --> 00:11:30,200 Like the only reason you're bringing him back is because you 198 00:11:30,200 --> 00:11:32,840 were late. Oh, I'm sorry, I can understand 199 00:11:32,840 --> 00:11:36,840 5 minutes, but 45 minutes? Wait, considering you're coming 200 00:11:36,840 --> 00:11:40,280 every single week, You know the routines, you know you know the 201 00:11:40,280 --> 00:11:42,080 set up. And you know how important 202 00:11:42,080 --> 00:11:45,240 routines are with. All you know, and so This is why 203 00:11:45,280 --> 00:11:49,240 he is dysregulated, because he was ready to go out and you've 204 00:11:49,240 --> 00:11:53,680 not turned up, so you know. So, yeah, so then that put me 205 00:11:53,760 --> 00:11:55,520 back as well. And that was a hard day, I'm not 206 00:11:55,520 --> 00:12:00,880 going to lie. And then, so then we had an 207 00:12:00,880 --> 00:12:04,520 incident with the soft player in Bristol where we were told by 208 00:12:04,520 --> 00:12:06,960 the support workers that there was an incident that happened. 209 00:12:07,560 --> 00:12:12,120 So and he was told it's probably best for him just to go to the 210 00:12:12,120 --> 00:12:14,200 send sessions. And I thought, well, hang on a 211 00:12:14,200 --> 00:12:16,520 minute, he's been going there every Saturday and Sunday for 212 00:12:16,520 --> 00:12:19,560 six months. You're happy to take the money 213 00:12:19,560 --> 00:12:23,520 off of them. Why now suddenly one incident 214 00:12:23,520 --> 00:12:27,840 and it was I think basically he'd he'd hit a child, but it 215 00:12:27,840 --> 00:12:30,720 was hard to understand the context of what had happened. 216 00:12:31,400 --> 00:12:33,600 So I said, well, look, I said I'm not condoning that 217 00:12:33,600 --> 00:12:35,920 behaviour. But obviously he's non verbal. 218 00:12:35,960 --> 00:12:40,160 He's autistic. He has peaker there. 219 00:12:40,160 --> 00:12:45,080 There's a lot of things going on that could explain why he's 220 00:12:45,080 --> 00:12:47,680 reacted the way he did. I'm not blaming you the the 221 00:12:47,680 --> 00:12:49,800 other child, but he's just understanding. 222 00:12:50,480 --> 00:12:53,760 I said why are you now saying he can't come hang on a minute. 223 00:12:53,760 --> 00:12:56,640 No, this, this, it wasn't just this one isolated incident. 224 00:12:56,640 --> 00:12:59,080 We've had to tell the support workers, bear in mind there's 225 00:12:59,080 --> 00:13:03,920 two of them each time, numerous times to actually do their job. 226 00:13:03,920 --> 00:13:06,960 So what do you mean? Well, there's one time in a 227 00:13:06,960 --> 00:13:13,080 public soft play where he'd stripped and another parent and 228 00:13:13,080 --> 00:13:16,800 the staff at the soft play centre had to tell the support 229 00:13:16,800 --> 00:13:18,880 workers, look, he's naked, you're going to have to swim 230 00:13:18,880 --> 00:13:21,520 out. I'm like, what? 231 00:13:22,560 --> 00:13:28,000 So we've changed agencies. But again, it was like for us 232 00:13:28,000 --> 00:13:29,760 really it was just having that break. 233 00:13:29,760 --> 00:13:34,080 But we never felt completely settled and like that he was 234 00:13:34,200 --> 00:13:37,800 fine. So then we started exploring, 235 00:13:37,800 --> 00:13:40,280 you know, because like we couldn't, we couldn't continue 236 00:13:40,280 --> 00:13:44,120 how we were. So we explored about residential 237 00:13:44,120 --> 00:13:50,320 school and it's, it's the hardest thing really to have to 238 00:13:50,320 --> 00:13:52,880 admit that you can't meet your child's needs. 239 00:13:54,480 --> 00:13:57,400 It does anger me a little bit because I think if there was 240 00:13:57,400 --> 00:14:02,640 more help and support earlier on, then maybe we wouldn't be at 241 00:14:02,640 --> 00:14:05,240 this place. Maybe we would be able to manage 242 00:14:05,240 --> 00:14:08,120 it. But it, it is what it is. 243 00:14:08,120 --> 00:14:10,760 I can't change the past. All I can do is change the 244 00:14:10,760 --> 00:14:13,640 future. And like I so he is now in a 245 00:14:13,640 --> 00:14:18,000 residential setting and they are doing a fantastic job with him. 246 00:14:18,000 --> 00:14:23,040 But it's so hard of handing your son over. 247 00:14:23,400 --> 00:14:26,480 Like we still maintain all parental responsibilities. 248 00:14:26,480 --> 00:14:29,720 It's not anything like where they've they've removed him. 249 00:14:30,320 --> 00:14:35,440 It's been a joint decision with us and the local authority, but 250 00:14:36,320 --> 00:14:40,040 it's still, I don't think it will ever sit right for me. 251 00:14:42,080 --> 00:14:47,280 But like the way I look at it is that they've got specialists 252 00:14:47,280 --> 00:14:50,560 there, they've got speech and language, They've got all the 253 00:14:50,560 --> 00:14:52,240 support you could possibly think of. 254 00:14:52,240 --> 00:14:55,920 And like I've said, if he comes out with there with some form of 255 00:14:55,920 --> 00:14:58,720 communication, however that looks, I don't care how it 256 00:14:58,720 --> 00:15:01,400 looks. I don't, I don't you know, if 257 00:15:01,400 --> 00:15:06,640 it's a like AAC board or so just so long as there is some form of 258 00:15:06,640 --> 00:15:10,480 communication because I feel that a lot of his frustrations 259 00:15:10,480 --> 00:15:14,280 is purely because of the lack of being unable to communicate what 260 00:15:14,320 --> 00:15:17,520 his needs are. So if he comes out of there, 261 00:15:17,520 --> 00:15:20,280 he's 8 years old now. So he will be there right up 262 00:15:20,280 --> 00:15:24,280 until he's 19. So they've got a good window to 263 00:15:24,280 --> 00:15:30,280 put in that intensive support. And it's my hope that whatever 264 00:15:30,280 --> 00:15:35,520 happens, he's got communication and we don't know, he may bear 265 00:15:35,520 --> 00:15:38,680 to come back home at some point and and live permanently. 266 00:15:39,040 --> 00:15:44,600 But it's because of the lack of support we've had to make this 267 00:15:44,600 --> 00:15:49,680 decision. And it, you know, and, and it 268 00:15:49,680 --> 00:15:52,000 does. And like I've said in on that 269 00:15:52,000 --> 00:15:58,720 LPC call in, it angers me sometimes when I hear like, oh, 270 00:15:58,920 --> 00:16:02,480 autism is my superpower. I, I get that. 271 00:16:02,480 --> 00:16:04,880 And, and I don't want to dismiss that. 272 00:16:05,120 --> 00:16:08,640 I totally understand that there are some people that they're 273 00:16:08,640 --> 00:16:11,200 able to thrive. And I, I applaud anyone for 274 00:16:11,200 --> 00:16:12,680 that. And I think that's brilliant. 275 00:16:13,400 --> 00:16:16,640 But what I would say is that you don't speak for the whole 276 00:16:16,640 --> 00:16:20,080 community. There are masses of struggle 277 00:16:20,080 --> 00:16:24,720 that are unseen. And, and, you know, even some as 278 00:16:24,720 --> 00:16:30,960 simple as like Christmas, we don't go to any family events 279 00:16:31,040 --> 00:16:33,760 ever. We don't, we don't do it because 280 00:16:34,520 --> 00:16:36,480 there's no one to look after the children anyway. 281 00:16:36,800 --> 00:16:40,880 The thought of having a few drinks and coming home, the 282 00:16:40,880 --> 00:16:43,280 thought of waking up in the morning with a fuzzy head whilst 283 00:16:43,280 --> 00:16:46,520 having to look after all our children just don't, don't 284 00:16:46,520 --> 00:16:49,280 excite me. I, I'm thinking, Nah, you're all 285 00:16:49,280 --> 00:16:56,000 right. I like and like a lot of the 286 00:16:56,000 --> 00:16:59,440 families houses, they're not really accessible for for Oscar. 287 00:16:59,600 --> 00:17:03,120 So we we miss out on that and also our other children miss out 288 00:17:03,200 --> 00:17:07,720 on that as well. So the hope is now that our 289 00:17:07,720 --> 00:17:11,520 others will be able to benefit from those sort of interactions 290 00:17:11,520 --> 00:17:17,079 as well. But yeah, it's just from my own 291 00:17:17,079 --> 00:17:19,400 experience. I hate autism. 292 00:17:19,720 --> 00:17:24,480 I, I, I know that sounds a bit, you know, because and, and I, I 293 00:17:24,480 --> 00:17:28,480 get it again, I, I really want to stress, I'm not saying it. 294 00:17:28,560 --> 00:17:30,760 I'm not speaking here for everyone. 295 00:17:30,760 --> 00:17:33,080 And I know everybody is different. 296 00:17:33,080 --> 00:17:38,360 So I don't want to be, you know, but from my experience of having 297 00:17:38,360 --> 00:17:41,680 to, you know, do the appointments and visits and, 298 00:17:41,720 --> 00:17:44,040 and, you know, you don't know what's going to happen from one 299 00:17:44,040 --> 00:17:46,800 day to the next. I hate it. 300 00:17:46,880 --> 00:17:52,320 And I think that, yeah, it's just, it's hard work. 301 00:17:52,720 --> 00:17:55,600 I think the thing with autism, autism is we always talk about 302 00:17:55,600 --> 00:17:58,920 it, we always hop on about it. It's a very huge spectrum and it 303 00:17:58,920 --> 00:18:02,200 isn't just on a linear line, it's infinitely wide as well. 304 00:18:02,400 --> 00:18:05,240 So the autism you hate? Is there? 305 00:18:05,240 --> 00:18:08,120 Yes, Yeah, yeah, yeah. Yeah, the autism that I deal 306 00:18:08,120 --> 00:18:10,240 with is here. And then you have some really 307 00:18:10,240 --> 00:18:13,120 high functioning autistics that are completely when you say you 308 00:18:13,120 --> 00:18:15,720 hate autism, you're not talking about the same autism that 309 00:18:15,720 --> 00:18:16,720 everyone else is. Experiencing. 310 00:18:17,080 --> 00:18:18,400 Your autism that you're dealing with. 311 00:18:18,720 --> 00:18:21,080 So as long as everyone understands that, we can all 312 00:18:21,080 --> 00:18:24,200 appreciate it. Parents can that can relate to 313 00:18:24,200 --> 00:18:26,200 that. I've got days where. 314 00:18:26,320 --> 00:18:28,240 I love Thomas's autism. I love it. 315 00:18:28,240 --> 00:18:31,680 If it ever went away, and I've said this before, the kid that 316 00:18:31,680 --> 00:18:34,320 walks in the room would be a different child, right? 317 00:18:34,400 --> 00:18:37,640 And, and I'd feel like I've lost the kid as much as it was 318 00:18:37,680 --> 00:18:39,920 grieving a child that never existed when I first found out 319 00:18:39,920 --> 00:18:42,600 about autism. If if he then lost it, I'd be 320 00:18:42,600 --> 00:18:44,600 grieving the kid that I've been living with for six years. 321 00:18:45,040 --> 00:18:48,720 What you don't, what you don't enjoy though, is a war that 322 00:18:48,720 --> 00:18:51,680 doesn't understand it. No, and relentless. 323 00:18:51,800 --> 00:18:53,800 Yep. Dealing with specialists or 324 00:18:53,800 --> 00:18:56,640 dealing with services that aren't fit for purpose as you've 325 00:18:56,640 --> 00:18:57,480 described. Absolutely. 326 00:18:57,480 --> 00:19:02,000 But the autism that I'm dealing with, generally speaking, works. 327 00:19:02,200 --> 00:19:03,600 Yeah. Is that fair to say, babe? 328 00:19:03,920 --> 00:19:06,880 Yeah, he's understood. And the system, the school's 329 00:19:06,880 --> 00:19:08,160 great. At the moment, when he's 18, I'm 330 00:19:08,400 --> 00:19:11,000 unclue what's going to happen. But at the moment, fine. 331 00:19:11,160 --> 00:19:12,920 But you're autism and white and a different autism. 332 00:19:13,240 --> 00:19:14,440 Yeah, they're all called the same thing. 333 00:19:14,440 --> 00:19:16,200 You've had to. We've talked about this before. 334 00:19:17,080 --> 00:19:21,240 You've had to make a decision that's best for your child as 335 00:19:21,240 --> 00:19:24,840 opposed to what's best for you, and a lot of us in the early 336 00:19:24,840 --> 00:19:28,640 days, until we get our heads around that, it's extremely, 337 00:19:28,760 --> 00:19:32,920 extremely difficult and it doesn't make it any easier. 338 00:19:33,080 --> 00:19:34,840 Now that's your your call on LBC mate. 339 00:19:34,840 --> 00:19:38,400 That's why I was like it stuck. And like I said earlier, it was 340 00:19:39,240 --> 00:19:42,080 took some balls. I did mate to call up and say 341 00:19:42,080 --> 00:19:46,320 that I I had to the the had to hang my kid in for a 342 00:19:46,320 --> 00:19:48,840 residential. So the backlash didn't exist. 343 00:19:48,920 --> 00:19:50,040 I was thinking, yeah, there's going. 344 00:19:50,040 --> 00:19:51,920 To be some Dick. Heads in the night, I was ready. 345 00:19:51,920 --> 00:19:55,400 Didn't happen. I had so with with trying to 346 00:19:55,400 --> 00:19:59,000 fight with the local authority to get his place was also 347 00:19:59,480 --> 00:20:03,680 insulting. So they said to us that they 348 00:20:03,680 --> 00:20:06,280 need to explore all possible options. 349 00:20:06,280 --> 00:20:07,560 Yeah, right. So right. 350 00:20:07,560 --> 00:20:10,320 OK. So at this point, he had a 351 00:20:10,320 --> 00:20:15,680 special school ready in place to start September, just gone in 352 00:20:15,680 --> 00:20:18,640 Bristol. So what they were exploring was 353 00:20:18,640 --> 00:20:22,280 the possibility of him going into foster care to remain in 354 00:20:22,280 --> 00:20:24,600 Bristol. Remember Me saying that? 355 00:20:24,720 --> 00:20:27,400 And so I said to him, I said, hang on a minute. 356 00:20:27,400 --> 00:20:34,360 I said, So what you're saying like, what support systems is 357 00:20:34,360 --> 00:20:36,560 going to be put in place if this goes ahead? 358 00:20:36,560 --> 00:20:39,720 I said, like, for a start, it's not going to happen because I 359 00:20:39,720 --> 00:20:43,240 will not agree to it. I said, but hypothetically, what 360 00:20:43,360 --> 00:20:47,560 support systems are in are in place to give the couple who are 361 00:20:47,560 --> 00:20:50,640 going to foster him the respite that they need. 362 00:20:51,000 --> 00:20:53,920 And he said nothing. What, so like not even getting 363 00:20:54,000 --> 00:20:58,280 support workers at the weekends? Like, nothing. 364 00:20:58,280 --> 00:20:59,720 Just school. Yeah, just school. 365 00:21:00,200 --> 00:21:04,960 So he's a vulnerable child. He's unable to communicate. 366 00:21:05,920 --> 00:21:11,880 He will eat literally anything. We are regularly treating him 367 00:21:11,880 --> 00:21:14,360 for worms because he will eat his own faeces. 368 00:21:16,000 --> 00:21:21,600 He will smear, he will destroy things. 369 00:21:24,240 --> 00:21:29,680 Do you not think that a foster placement is probably very high 370 00:21:29,680 --> 00:21:31,520 risk of failure? Said. 371 00:21:31,520 --> 00:21:34,600 And then if that happens, where does he go? 372 00:21:35,120 --> 00:21:37,120 Are we going to get a phone call to say actually you're going to 373 00:21:37,120 --> 00:21:43,280 have to take him back? Does he go into a standard 374 00:21:43,280 --> 00:21:46,000 mainstream residential placement? 375 00:21:46,400 --> 00:21:49,200 Because if he does that, that's going to absolutely destroy him 376 00:21:49,200 --> 00:21:52,200 and he's going to destroy me and his his mum and my wife. 377 00:21:52,840 --> 00:21:54,840 He said. It's just not going to work. 378 00:21:55,560 --> 00:21:57,520 So he said, well, we need to explore. 379 00:21:57,520 --> 00:22:00,720 So basically what you're telling me is you want to save a bit of 380 00:22:00,720 --> 00:22:04,280 money because you've got this school place ready for him. 381 00:22:04,720 --> 00:22:07,880 So it's going to cost you a lot less to put him into foster care 382 00:22:07,880 --> 00:22:09,800 than it is going to put to residential care. 383 00:22:10,320 --> 00:22:15,520 I said, what is what is your end goal? 384 00:22:15,520 --> 00:22:19,200 What is your main focus? Surely it's got to be as social 385 00:22:19,200 --> 00:22:21,480 services. Your focus has to be on the 386 00:22:21,480 --> 00:22:25,080 child. So are you not looking at this 387 00:22:25,120 --> 00:22:28,800 thinking actually alarm bells, foster care is not going to 388 00:22:28,800 --> 00:22:31,120 work? I said, And it's an insult to me 389 00:22:31,120 --> 00:22:34,760 and his mum because we've done this for eight years and we've 390 00:22:34,760 --> 00:22:37,760 got to a point now because our only support network, which was 391 00:22:37,760 --> 00:22:40,280 my mum and dad, is no longer there. 392 00:22:42,120 --> 00:22:45,800 Why do you think complete strangers are going to be able 393 00:22:45,800 --> 00:22:48,400 to do a better job? Because that's an insult. 394 00:22:48,520 --> 00:22:52,880 The fact we are saying we can't do it is hard enough to have to 395 00:22:52,880 --> 00:22:55,880 sit there and say we cannot look after our child anymore, we 396 00:22:55,880 --> 00:22:59,280 cannot meet his needs, and then you're saying, oh, we'll find 397 00:22:59,280 --> 00:23:00,840 two other. Parents and and you did it for 398 00:23:00,840 --> 00:23:02,920 as long as you did, because your biological parents are actually 399 00:23:03,000 --> 00:23:04,360 that that biological. Tried. 400 00:23:04,360 --> 00:23:06,520 Tried. To help your kid if a foster 401 00:23:06,520 --> 00:23:07,800 parent. Doesn't they will have a they 402 00:23:07,840 --> 00:23:10,360 have they got to make one phone call and that's it. 403 00:23:10,360 --> 00:23:11,720 Can't do this, yeah. Yeah. 404 00:23:11,760 --> 00:23:13,320 So they're not, they're not going to stick with it like you, 405 00:23:13,320 --> 00:23:16,400 like you did are. You mad like it's going to cost 406 00:23:16,400 --> 00:23:18,560 you more money in the long run because you're going to have to 407 00:23:18,560 --> 00:23:21,920 find placement after placement. Do you think it was about the 408 00:23:21,920 --> 00:23:23,840 money of. Course it was because they come 409 00:23:23,840 --> 00:23:27,800 back to us afterwards and said yeah, we, we've enquired, we've 410 00:23:27,800 --> 00:23:31,880 even gone to external companies and nobody can meet his needs. 411 00:23:32,360 --> 00:23:35,000 So what would have happened if there was someone that said they 412 00:23:35,000 --> 00:23:37,240 could meet his needs? You'd have been pushing down 413 00:23:37,240 --> 00:23:41,440 that road and it, and it's all money and it, and it angers the 414 00:23:41,440 --> 00:23:49,160 hell out of me because you know, if and, and I feel like with, 415 00:23:49,200 --> 00:23:51,640 with governments, they talk the talk. 416 00:23:51,840 --> 00:23:55,120 I've spoke to my local MP about this and they, they talk the 417 00:23:55,120 --> 00:23:57,240 talk. They like to say, yeah, we're 418 00:23:57,240 --> 00:23:59,520 going to, you know, Labour at the moment, we're going to do 419 00:23:59,520 --> 00:24:03,800 the SEND reforms. I have 0 confidence that that is 420 00:24:03,800 --> 00:24:05,600 going to make any difference at all. 421 00:24:05,600 --> 00:24:10,480 Because if you really want to sort out the SEND system, you, 422 00:24:11,000 --> 00:24:14,960 you need to make mainstream inclusive for everybody, which 423 00:24:14,960 --> 00:24:18,040 is going to cost money because you're going to have to make 424 00:24:18,360 --> 00:24:22,760 like my middle son in primary school, they had, they called it 425 00:24:22,760 --> 00:24:25,440 a rainbow room. So when things become too much, 426 00:24:25,640 --> 00:24:29,600 he was able to just go there. And, and he, so he's ADHD, so a 427 00:24:29,600 --> 00:24:33,520 lot of his frustration will come out in violence, right? 428 00:24:34,200 --> 00:24:37,840 So he got to a point where he had a trusted member of staff 429 00:24:37,880 --> 00:24:42,160 who was able to speak to him and and they, they could see before 430 00:24:42,160 --> 00:24:43,800 he'd snapped, They, they were on it. 431 00:24:43,800 --> 00:24:44,880 They knew. Right. 432 00:24:44,880 --> 00:24:45,960 Jack, do you think you need to go? 433 00:24:46,360 --> 00:24:47,000 Yeah. OK. 434 00:24:47,080 --> 00:24:47,760 Right. And he would go. 435 00:24:47,800 --> 00:24:49,440 And he'd done really, really well. 436 00:24:50,560 --> 00:24:56,360 But that is going to have to be replicated for hundreds of 437 00:24:56,400 --> 00:24:58,880 thousands of students. You'd have to roll it out. 438 00:24:58,880 --> 00:25:02,680 It would every single school. And we already know some schools 439 00:25:02,680 --> 00:25:05,600 are falling down and they've got kind of makeshift classrooms and 440 00:25:05,600 --> 00:25:07,560 everything else like that. So we know that's never going to 441 00:25:07,560 --> 00:25:09,480 happen. They don't have the space for 442 00:25:09,480 --> 00:25:11,480 it. You need every single member of 443 00:25:11,480 --> 00:25:15,920 staff trained to be able to identify and work with these 444 00:25:15,920 --> 00:25:18,240 children. So it's again. 445 00:25:20,480 --> 00:25:23,040 It's it's, it's never going to happen. 446 00:25:23,360 --> 00:25:28,160 And I think it's down to us as parents to advocate for our kids 447 00:25:28,160 --> 00:25:32,000 and be that pain in the ass to the local authorities until they 448 00:25:32,000 --> 00:25:34,760 go, do you know what? Get him out of our air, give him 449 00:25:34,760 --> 00:25:39,000 what he wants. And unfortunately, until every 450 00:25:39,240 --> 00:25:42,320 parent does that, nothing is going to change. 451 00:25:42,320 --> 00:25:47,480 And one of our last little thing to to note, you know, we, we 452 00:25:47,480 --> 00:25:50,480 talk about is there a biological link? 453 00:25:50,480 --> 00:25:56,000 Is there, You know, now, the one thing I always stick in my head 454 00:25:56,000 --> 00:26:00,120 is if there is some sort of biological link, that must mean 455 00:26:00,120 --> 00:26:04,840 that there must be some parents out there that have either 456 00:26:04,840 --> 00:26:09,920 autism or ADHD themselves. How the hell are they going to 457 00:26:09,920 --> 00:26:13,440 be able to advocate for their kids like I've done, like other 458 00:26:13,440 --> 00:26:20,400 people have done when they basic written might might be a 459 00:26:20,400 --> 00:26:25,120 struggle for them, like, you know, they may have dyslexia, 460 00:26:25,400 --> 00:26:28,960 They may have exactly, you know, and I think it's not fair. 461 00:26:28,960 --> 00:26:32,320 What I would like to see in an ideal world is that when you get 462 00:26:32,320 --> 00:26:36,520 diagnosed, there is a caseworker assigned to each child and they 463 00:26:36,520 --> 00:26:39,960 advocate for them and they are there for them, not for the 464 00:26:39,960 --> 00:26:41,360 parents. They are there for them. 465 00:26:41,520 --> 00:26:45,000 So whatever needs to be done for that child, they are their 466 00:26:45,000 --> 00:26:47,640 representative within the local authority and they will fight 467 00:26:47,640 --> 00:26:50,680 and fight and fight for them alongside the parents. 468 00:26:51,760 --> 00:26:53,760 But I ain't going to work. But I ain't going to happen. 469 00:26:53,760 --> 00:26:55,400 So yeah, we've. We've said it in the past, I 470 00:26:55,400 --> 00:26:57,760 think we've said in the previous episode that unfortunately when 471 00:26:57,760 --> 00:26:59,960 you're going through the diagnosis stage and you're 472 00:26:59,960 --> 00:27:02,560 dealing with local authorities, you have to be a pain in the 473 00:27:02,560 --> 00:27:03,480 ass. You have to be on them. 474 00:27:03,680 --> 00:27:06,640 You have to be the person that shouts the loudest sometimes so 475 00:27:06,760 --> 00:27:09,440 that you'll get seen. But equally said, there will be 476 00:27:09,440 --> 00:27:12,280 parents exactly what you've just described there who aren't very 477 00:27:12,280 --> 00:27:14,440 good at paperwork or don't know how to kind of work their way 478 00:27:14,440 --> 00:27:16,760 through or don't have a network that will help them, that 479 00:27:16,760 --> 00:27:18,840 unfortunately their children will fall through the gap. 480 00:27:19,520 --> 00:27:20,960 And it's a horrible thing to say. 481 00:27:20,960 --> 00:27:22,760 But then you think, oh, I've got my child. 482 00:27:22,760 --> 00:27:25,480 The, the need, the, the care and the education it needs. 483 00:27:25,480 --> 00:27:26,960 I mean, we got her into Sevendale. 484 00:27:27,320 --> 00:27:29,080 I think they took on about six children this year. 485 00:27:29,720 --> 00:27:32,040 And for every place, it was probably about 50-60 children 486 00:27:32,040 --> 00:27:34,480 going up to that place. And I felt amazing that I got 487 00:27:34,480 --> 00:27:36,720 her, that the education, the care that she needed. 488 00:27:37,440 --> 00:27:40,120 At the same time I reflected on it going shit, there's so many 489 00:27:40,120 --> 00:27:44,080 families now that screwed. So my my middle son, he goes to 490 00:27:44,200 --> 00:27:50,480 a specialist secondary school and we took the local authority 491 00:27:50,480 --> 00:27:55,120 to court for that and we won. And because of that all the 492 00:27:55,120 --> 00:27:57,640 paperwork come through about the costs and everything like that. 493 00:27:57,960 --> 00:28:03,400 His education per year is £120,000 right? 494 00:28:03,760 --> 00:28:06,640 So that means they they have a maximum of 50 kids in that whole 495 00:28:06,640 --> 00:28:09,200 school. So that means every single child 496 00:28:09,240 --> 00:28:13,120 is the the local authority is paying £104,000 a year. 497 00:28:13,360 --> 00:28:16,880 Now this is where I think that the local authority are missing 498 00:28:16,880 --> 00:28:20,240 a trek. If they were to build their own 499 00:28:20,800 --> 00:28:25,760 specialist provisions, it ain't going to cost £104,000 a year. 500 00:28:25,840 --> 00:28:28,960 So that means by the end of his academic years in secondary 501 00:28:28,960 --> 00:28:31,960 school, his education will be half, £1,000,000. 502 00:28:32,520 --> 00:28:36,760 And I just find that mad that one child is going to cost them 503 00:28:36,840 --> 00:28:38,760 half. That's more than Eton. 504 00:28:39,080 --> 00:28:41,960 That's more than him going to Eton College, Right. 505 00:28:43,800 --> 00:28:48,240 And I just, yeah, for me, I just it, it, it angers me because 506 00:28:48,480 --> 00:28:53,120 everything is being passed to the private sector and we're, 507 00:28:53,640 --> 00:28:56,040 we're we're paying taxpayer money. 508 00:28:57,440 --> 00:29:00,800 And it, it's it's just a waste. It, it is because if they 509 00:29:00,800 --> 00:29:04,200 brought it in house, yes, there would be the initial cost. 510 00:29:04,480 --> 00:29:08,240 But once that initial cost is done, like you're laughing. 511 00:29:08,960 --> 00:29:11,480 But yeah, that's pretty much so, yeah. 512 00:29:12,240 --> 00:29:13,760 Thank you very much. I appreciate. 513 00:29:14,080 --> 00:29:16,360 It. Oh yeah. 514 00:29:19,880 --> 00:29:21,320 Thank you mate. No worries, that's an elephant 515 00:29:21,320 --> 00:29:22,720 thing to share. Yeah, I know. 516 00:29:22,800 --> 00:29:24,520 Toughen it. Yeah, can't imagine, Can't 517 00:29:24,520 --> 00:29:25,600 imagine having to do what you've done. 518 00:29:26,880 --> 00:29:27,960 You keep doing what you're doing, mate. 519 00:29:28,120 --> 00:29:30,520 Yeah, man. I mean, we see him every sort of 520 00:29:30,520 --> 00:29:33,080 fortnight as well. So and he's you know, and we 521 00:29:33,080 --> 00:29:35,560 can, we can literally have him back home whenever we want as 522 00:29:35,560 --> 00:29:37,560 well. So there's no, there's no like 523 00:29:37,560 --> 00:29:39,360 you haven't handed your kiddo. No, no, no. 524 00:29:39,440 --> 00:29:41,960 So we still maintain. Responsibility. 525 00:29:41,960 --> 00:29:43,600 Responsibility and everything like that. 526 00:29:43,600 --> 00:29:46,560 So we can just phone him up and say, oh, we want Oscar come back 527 00:29:46,680 --> 00:29:49,360 this weekend and they will even help. 528 00:29:49,480 --> 00:29:51,560 We're fan sport. They'll bring him halfway or all 529 00:29:51,560 --> 00:29:53,400 the way back home if if we wanted to. 530 00:29:53,960 --> 00:29:57,080 So I mean, like I said, as a professional driver, it's not 531 00:29:57,320 --> 00:29:59,240 Bristol to Worcester. It's like nothing really. 532 00:29:59,240 --> 00:30:03,560 So but yeah, so it's, it's, we still maintain that contact. 533 00:30:03,560 --> 00:30:06,120 We have video calls of him. The video calls are really funny 534 00:30:06,120 --> 00:30:10,040 because if, if, if he has one before he goes to bed, he might 535 00:30:10,040 --> 00:30:11,920 as well just tell us to, to do one. 536 00:30:11,920 --> 00:30:15,280 I'm ready to go bed. He's he's not interested midway 537 00:30:15,280 --> 00:30:17,960 through the day. He's like, right, let's be 538 00:30:17,960 --> 00:30:19,840 mischievous. Let's just, I'm going to run 539 00:30:19,840 --> 00:30:21,800 about. And then the support workers 540 00:30:21,800 --> 00:30:24,680 like running around with the phone trying to keep on the keep 541 00:30:24,680 --> 00:30:26,600 him on the video. And it lasts for about 5 542 00:30:26,600 --> 00:30:28,080 minutes. But it's just to have that 543 00:30:28,320 --> 00:30:29,920 interaction. Yeah. 544 00:30:30,880 --> 00:30:32,320 That's cool. Thank you very much. 545 00:30:32,320 --> 00:30:33,040 Appreciate. It. 546 00:30:33,040 --> 00:30:33,560 See you mate. Leave. 547 00:30:37,720 --> 00:30:38,200 That one there.