WEBVTT 00:00:00.000 --> 00:00:02.680 Hi, my name is Jordan. I am a special education 00:00:02.680 --> 00:00:06.160 teacher from the UK. I share my passion for everything 00:00:06.160 --> 00:00:09.119 communication, sensory regulation and fun lesson 00:00:09.119 --> 00:00:11.660 ideas for my classroom of disabled pupils aged 00:00:11.660 --> 00:00:15.300 4 to 11. Each week I am joined by experts in 00:00:15.300 --> 00:00:17.640 the field answering your questions and sharing 00:00:17.640 --> 00:00:19.559 our knowledge and experience working alongside 00:00:19.559 --> 00:00:22.539 our beautiful young people. Let's get started. 00:00:27.399 --> 00:00:30.280 Hello everybody and welcome to the Sensory Casting 00:00:30.280 --> 00:00:33.200 Podcast. My name is Jordan and today I am joined 00:00:33.200 --> 00:00:37.079 by Lisa. Me and Lisa have been friends on Instagram 00:00:37.079 --> 00:00:41.100 for probably a decade now. Just really resonated 00:00:41.100 --> 00:00:46.420 with our... love for her son, honestly, and his 00:00:46.420 --> 00:00:48.380 passion for all things sea creatures. It started 00:00:48.380 --> 00:00:51.579 way, way back in the day when I ran a sensory 00:00:51.579 --> 00:00:56.439 toy shop. And I've been devoted to her channel, 00:00:56.640 --> 00:00:59.299 I suppose, ever since. And I'm so pleased to 00:00:59.299 --> 00:01:01.700 watch her grow on social media and share more 00:01:01.700 --> 00:01:04.459 about her journey. She knows so much and has 00:01:04.459 --> 00:01:06.060 learned so much along the way and has been through 00:01:06.060 --> 00:01:08.739 a hell of a lot. So I'm so excited to have convinced 00:01:08.739 --> 00:01:11.319 her to come on the podcast today. Hello, Lisa. 00:01:12.079 --> 00:01:16.519 Hello, thank you for having me. Thank you so 00:01:16.519 --> 00:01:19.040 much for accepting. I was really hoping that 00:01:19.040 --> 00:01:21.739 you would because, yeah, we've been chatting 00:01:21.739 --> 00:01:23.680 for a hell of a long time now, haven't we? We 00:01:23.680 --> 00:01:26.000 have, such a long time, yeah. We've still got 00:01:26.000 --> 00:01:28.019 all the little things you made. And the little 00:01:28.019 --> 00:01:31.219 bags and ice pie bags. Yeah, he loves them. Yeah. 00:01:31.739 --> 00:01:34.459 It was such an honour to create something so 00:01:34.459 --> 00:01:37.719 bespoke for him because what he wanted just didn't 00:01:37.719 --> 00:01:41.439 exist. So what an honour. Yeah. I think it was 00:01:41.439 --> 00:01:44.040 an eggplant elephant, wasn't it? He's very unique 00:01:44.040 --> 00:01:46.939 in what he asks for. Yeah, an eggplant elephant, 00:01:46.980 --> 00:01:50.420 I think it was. And that was the first thing. 00:01:50.480 --> 00:01:52.519 And it was lots of sea creatures. Yes. And I 00:01:52.519 --> 00:01:54.719 just love it. And I've been loving following 00:01:54.719 --> 00:01:57.079 your journey all through this decade. I think 00:01:57.079 --> 00:02:00.060 you were probably about eight or nine when we 00:02:00.060 --> 00:02:02.299 first started talking. I think so. He's now turned 00:02:02.299 --> 00:02:06.640 18. It's just crazy. And that's what we're going 00:02:06.640 --> 00:02:08.300 to talk about today. We're going to talk about... 00:02:08.699 --> 00:02:10.740 That move towards adulthood, it's something I 00:02:10.740 --> 00:02:12.800 don't know much about at all. So I'm really hoping 00:02:12.800 --> 00:02:16.039 that you can enlighten me and my listeners on 00:02:16.039 --> 00:02:18.620 what that looks like. But first, before we get 00:02:18.620 --> 00:02:20.719 into that, are you all right kind of describing 00:02:20.719 --> 00:02:23.900 your setup and how your family fits into this 00:02:23.900 --> 00:02:28.199 SEND sphere? Yeah, so originally my background 00:02:28.199 --> 00:02:30.879 is in early years and I've worked in lots of 00:02:30.879 --> 00:02:34.120 different various settings. And with special 00:02:34.120 --> 00:02:36.580 educational needs as well. And then I've gone 00:02:36.580 --> 00:02:40.099 on to have Kian. He was diagnosed on the autistic 00:02:40.099 --> 00:02:43.020 spectrum when he was three and a half. And then 00:02:43.020 --> 00:02:46.680 I've got Grace. She's 10. And she's a little 00:02:46.680 --> 00:02:49.360 bit more complicated. She, we believe, has possibly 00:02:49.360 --> 00:02:52.259 PANS, PANDAS. Some of you might know about that 00:02:52.259 --> 00:02:55.039 or some might not. And then she has gone on to 00:02:55.039 --> 00:02:58.599 be also diagnosed on the autistic spectrum. But 00:02:58.599 --> 00:03:01.520 the two are kind of overlapping. Yeah, she has 00:03:01.520 --> 00:03:04.219 her own individual needs as well. Yeah. And then 00:03:04.219 --> 00:03:06.620 I've been on, I think, Instagram for about 10 00:03:06.620 --> 00:03:09.219 years now, just sort of sharing. It started off 00:03:09.219 --> 00:03:10.979 as play ideas and things like that. And then 00:03:10.979 --> 00:03:14.219 I've moved more to wanting to help others and 00:03:14.219 --> 00:03:18.259 share our story. And yeah, that's just me. Both 00:03:18.259 --> 00:03:21.199 of your children are incredibly different, aren't 00:03:21.199 --> 00:03:23.740 they? It shows that you can have a diagnosis 00:03:23.740 --> 00:03:26.840 and actually how varied that can be just within 00:03:26.840 --> 00:03:30.099 one family. Yeah, definitely. They're very, very 00:03:30.099 --> 00:03:33.180 different, different needs. And well, you've 00:03:33.180 --> 00:03:35.460 got Kian who you'll know when he's not happy, 00:03:35.580 --> 00:03:37.819 he'll be on the floor having a meltdown. Whereas 00:03:37.819 --> 00:03:41.319 Grace, she'll hide it more, mask more. And then, 00:03:41.340 --> 00:03:45.719 yeah, very, very, very different. But both have 00:03:45.719 --> 00:03:49.199 been around the school system in so many different 00:03:49.199 --> 00:03:54.780 ways. Yeah, Kian has massively been, I can explain 00:03:54.780 --> 00:03:57.699 a little bit about. our journey from what sort 00:03:57.699 --> 00:03:59.159 of happened and where we're up to from there 00:03:59.159 --> 00:04:03.539 yes so when kean was four he i got him into a 00:04:03.539 --> 00:04:05.719 special needs school which was for severe learning 00:04:05.719 --> 00:04:09.259 disability um and i thought oh this is brilliant 00:04:09.259 --> 00:04:11.780 i've got him into the school i was so happy he 00:04:11.780 --> 00:04:13.879 was happy he was thriving and i just thought 00:04:13.879 --> 00:04:17.779 this is the school this is where he is like this 00:04:17.779 --> 00:04:19.860 is sorted now till he's like 16 that's just what 00:04:19.860 --> 00:04:22.139 i thought not really realizing that the school 00:04:22.139 --> 00:04:26.269 reviews each time their progress and things like 00:04:26.269 --> 00:04:29.350 that and then around when he was I think he was 00:04:29.350 --> 00:04:32.089 about eight whose school he was at sort of said 00:04:32.089 --> 00:04:34.269 that they feel like he'd be able to move on to 00:04:34.269 --> 00:04:37.290 a moderate learning disability special needs 00:04:37.290 --> 00:04:39.389 setting at the time I sort of just went with 00:04:39.389 --> 00:04:43.029 the advice that yeah there's no reason for that 00:04:43.029 --> 00:04:46.209 so I think so he was non -verbal till he was 00:04:46.209 --> 00:04:51.529 about five five -ish and then he started to find 00:04:51.529 --> 00:04:54.370 his words and just progress a little bit more 00:04:54.370 --> 00:04:57.430 and I think like looking back now I don't know 00:04:57.430 --> 00:04:59.069 at the time if they were trying to free up space 00:04:59.069 --> 00:05:02.050 so they were I don't know but at the time I just 00:05:02.050 --> 00:05:05.069 took the advice thinking this you know this is 00:05:05.069 --> 00:05:06.910 what I guess this is this is going to be for 00:05:06.910 --> 00:05:10.370 the best for Kian but looking back now I don't 00:05:10.370 --> 00:05:12.649 think he should have ever left that setting because 00:05:12.649 --> 00:05:15.430 he has got quite complex needs so Kian has so 00:05:15.430 --> 00:05:18.519 he's autistic He has sensory processing disorder. 00:05:18.980 --> 00:05:21.699 He also has a vision impairment, which developed 00:05:21.699 --> 00:05:24.699 when he was 13. And he's lost some vision in 00:05:24.699 --> 00:05:30.180 his eye. So he has quite complex needs. So then 00:05:30.180 --> 00:05:32.420 he moved to this moderate learning disability 00:05:32.420 --> 00:05:34.879 school. And then in the primary department, it 00:05:34.879 --> 00:05:38.199 was fine because he was in one base. And he seemed 00:05:38.199 --> 00:05:41.500 to cope fine with the same teacher. I thought, 00:05:41.939 --> 00:05:44.720 oh, he's getting on OK. And then it came to... 00:05:46.430 --> 00:05:48.470 secondary school and this is when everything 00:05:48.470 --> 00:05:51.910 really sort of fell apart really so in year seven 00:05:51.910 --> 00:05:54.629 it was when it was also covid so it was all very 00:05:54.629 --> 00:05:58.970 disrupted in that in that secondary school department 00:05:58.970 --> 00:06:01.730 it was run more like a mainstream so he would 00:06:01.730 --> 00:06:04.410 go to different lessons with different teachers 00:06:04.410 --> 00:06:07.490 that was all that was just too much for him basically 00:06:07.490 --> 00:06:09.850 the secondary school couldn't meet his needs 00:06:09.850 --> 00:06:12.949 um and it just went sort of downhill from there 00:06:12.949 --> 00:06:16.660 so basically he hasn't done Full -time school 00:06:16.660 --> 00:06:22.040 since primary because we had COVID for seven 00:06:22.040 --> 00:06:25.540 and eight. Year nine was when he had the eye 00:06:25.540 --> 00:06:28.160 condition, had to have an operation. He has a 00:06:28.160 --> 00:06:30.899 condition called keratoconus, so that's constantly 00:06:30.899 --> 00:06:35.319 monitoring. And then, yeah, so then it got to 00:06:35.319 --> 00:06:39.180 year 10. 2022, he hasn't been in education at 00:06:39.180 --> 00:06:42.300 all. We had his annual review and school said 00:06:42.300 --> 00:06:45.189 that they couldn't meet his needs. Prior to that, 00:06:45.310 --> 00:06:48.009 he was struggling to go in. I was getting called 00:06:48.009 --> 00:06:50.230 all the time. And he was just hitting out. And 00:06:50.230 --> 00:06:53.050 he doesn't ever hit out or lash out. So he's 00:06:53.050 --> 00:06:56.569 not a ride. He's a gentle giant, basically. He's 00:06:56.569 --> 00:06:58.629 a gentle giant, basically. So I said something 00:06:58.629 --> 00:07:02.170 is seriously wrong if he's hitting out. There's 00:07:02.170 --> 00:07:04.250 something going on. His needs are not being met. 00:07:04.350 --> 00:07:07.009 So I said, that's fine. Can't meet his needs. 00:07:07.050 --> 00:07:08.870 What do we do now? We're going to have to find 00:07:08.870 --> 00:07:10.529 him something like an alternative provision. 00:07:11.370 --> 00:07:13.790 And then that's when the LA. Yeah, that's when 00:07:13.790 --> 00:07:16.310 LA didn't, well, basically they didn't really 00:07:16.310 --> 00:07:18.970 do anything. They didn't do what they were supposed 00:07:18.970 --> 00:07:21.370 to do. So he was left for a couple of years without 00:07:21.370 --> 00:07:23.589 anything. I had to do complaint after complaint. 00:07:24.310 --> 00:07:26.910 Yeah, it was really, really stressful. And all 00:07:26.910 --> 00:07:29.449 this time, he's obviously just getting more and 00:07:29.449 --> 00:07:32.310 more attached to me and not wanting to do anything 00:07:32.310 --> 00:07:35.790 with anybody else. And then they sort of kept 00:07:35.790 --> 00:07:37.750 him on roll there, but I kept saying, please, 00:07:37.810 --> 00:07:40.939 can we take him off roll so that we can... find 00:07:40.939 --> 00:07:42.779 him something that can meet his needs that they 00:07:42.779 --> 00:07:45.439 would just send around a TA from the school and 00:07:45.439 --> 00:07:50.839 said like obviously that was that was fine but 00:07:50.839 --> 00:07:53.259 I said no this isn't an education he needs to 00:07:53.259 --> 00:07:56.459 be taken off role and find something what's going 00:07:56.459 --> 00:07:58.600 to meet his needs and that was when I was pushing 00:07:58.600 --> 00:08:04.079 for an EOTAS package for him so something bespoke 00:08:04.079 --> 00:08:06.899 for his needs rather than a setting because it 00:08:06.899 --> 00:08:10.029 was obviously clear that a setting wasn't going 00:08:10.029 --> 00:08:12.730 to be the right thing and then it's obviously 00:08:12.730 --> 00:08:14.910 the trauma and everything that's come from that 00:08:14.910 --> 00:08:17.589 time when he was not having these needs met and 00:08:17.589 --> 00:08:19.589 that's really affected him a lot so yeah he had 00:08:19.589 --> 00:08:21.910 a whole two years out of school and then he got 00:08:21.910 --> 00:08:25.970 to 16 and then the LA finally agreed to issue 00:08:25.970 --> 00:08:30.910 and a package like a bespoke package so for those 00:08:30.910 --> 00:08:33.649 that don't know we've got for those that don't 00:08:33.649 --> 00:08:35.289 know on the previous podcast of this we actually 00:08:35.289 --> 00:08:38.549 spoke a lot about EOTAS it's about being educated 00:08:38.549 --> 00:08:42.470 off or an alternative yeah it's a way of meeting 00:08:42.470 --> 00:08:45.029 the ehc outside of education isn't it just for 00:08:45.029 --> 00:08:47.450 those that don't know yeah it was agreed then 00:08:47.450 --> 00:08:50.190 eventually but it really should have been agreed 00:08:50.190 --> 00:08:52.950 way before because we've had two years of nothing 00:08:52.950 --> 00:08:55.590 that should have been agreed way before then 00:08:55.590 --> 00:08:57.509 because i i think he would have been a better 00:08:57.509 --> 00:09:02.009 place now than what he is in and the funding 00:09:02.009 --> 00:09:06.080 and he wasn't which feels so unfair yeah He was 00:09:06.080 --> 00:09:08.139 at the school. He was on roll at the school, 00:09:08.179 --> 00:09:09.700 but he hadn't been in there for two years. And 00:09:09.700 --> 00:09:11.639 the other thing what the local authority did 00:09:11.639 --> 00:09:15.899 was they kept his draft, his EHCP in draft. And 00:09:15.899 --> 00:09:18.200 I kept asking for it to be finalised so then 00:09:18.200 --> 00:09:21.460 I could appeal, but they didn't do it. So they 00:09:21.460 --> 00:09:24.019 took away my right of appeal. They wouldn't finalise 00:09:24.019 --> 00:09:26.019 his plan. So they basically broke quite a lot 00:09:26.019 --> 00:09:30.419 of regulations and things. So I got to 16 and 00:09:30.419 --> 00:09:33.889 then he had an alternative. provision which was 00:09:33.889 --> 00:09:36.350 three times he got nine hours a week so he goes 00:09:36.350 --> 00:09:39.230 out three times a week with support workers and 00:09:39.230 --> 00:09:41.429 it's all very centered around him so what he 00:09:41.429 --> 00:09:44.470 likes to do so he'll go out three times a week 00:09:44.470 --> 00:09:47.269 and like swim in to a sensory room just go for 00:09:47.269 --> 00:09:49.590 a drive and there's like a giant elephant near 00:09:49.590 --> 00:09:52.049 us that he goes he sees and strokes so he does 00:09:52.049 --> 00:09:55.149 things like that but it took he's been yeah he's 00:09:55.149 --> 00:09:57.429 been with them for two years nearly now and it 00:09:57.429 --> 00:10:00.190 took a whole year just for him to get in their 00:10:00.190 --> 00:10:03.190 car So because he'd been out of school for so 00:10:03.190 --> 00:10:05.830 long, he didn't trust anybody. He only wanted 00:10:05.830 --> 00:10:09.470 to be with me and I would have to drive to the 00:10:09.470 --> 00:10:11.629 place, go with him and the workers would meet 00:10:11.629 --> 00:10:14.029 me there, then go out for 10 minutes. And then 00:10:14.029 --> 00:10:16.330 it just took all that time and they would just 00:10:16.330 --> 00:10:17.769 come in the house and it would just be a hello, 00:10:17.929 --> 00:10:21.289 bye. It just took so long. And even now he's 00:10:21.289 --> 00:10:23.289 going out with them, but it's still for very 00:10:23.289 --> 00:10:25.230 short periods and he wants to come home again. 00:10:25.730 --> 00:10:28.570 But looking back to him not going out with anyone, 00:10:28.730 --> 00:10:32.710 he does now. go out but this took a long time 00:10:32.710 --> 00:10:35.029 to get in there and that's where we then come 00:10:35.029 --> 00:10:39.269 to the adult 18 what happens to that package 00:10:39.269 --> 00:10:41.210 what are the rules around that when does the 00:10:41.210 --> 00:10:45.750 ehcp finish change what what are you looking 00:10:45.750 --> 00:10:50.250 at now that he's an adult so the alternative 00:10:50.250 --> 00:10:53.970 provision he's with now they they're not a long 00:10:53.970 --> 00:10:56.370 -term thing they're more of a transitional service 00:10:56.370 --> 00:10:59.629 so their aim was to transition key and into adult 00:11:00.000 --> 00:11:02.500 care services so we're now coming to the end 00:11:02.500 --> 00:11:05.340 of that now at the end of the year so i've now 00:11:05.340 --> 00:11:08.299 got to find something to replace that and then 00:11:08.299 --> 00:11:11.539 there's also as part of his package he had ot 00:11:11.539 --> 00:11:14.440 therapy but we have to go out of county for that 00:11:14.440 --> 00:11:16.519 which is quite a long way um and then he had 00:11:16.519 --> 00:11:19.379 animal therapy but that's also stopped now but 00:11:19.379 --> 00:11:21.580 it feels like we will start with adult social 00:11:21.580 --> 00:11:23.220 care it feels like we're starting all over again 00:11:23.220 --> 00:11:27.879 so yeah that's not yeah and then you said you've 00:11:27.879 --> 00:11:31.389 got do you literally mean you you've got to find 00:11:31.389 --> 00:11:35.370 that well it's been the moving over to adult 00:11:35.370 --> 00:11:39.549 care services has been quite like not as supportive 00:11:39.549 --> 00:11:41.590 as i thought it would be it's been i think it's 00:11:41.590 --> 00:11:44.350 different in certain areas but they'll give you 00:11:44.350 --> 00:11:47.490 providers but i guess it's more finding if you 00:11:47.490 --> 00:11:50.509 want to have find your own kind of carer or pas 00:11:50.509 --> 00:11:54.649 or you could use ones from an agency or so that's 00:11:54.649 --> 00:11:58.450 me sort of deciding what i want to do kind of 00:11:58.450 --> 00:12:01.129 like a business I've worked as a PA before for 00:12:01.129 --> 00:12:04.210 primary aid and it was very much on the parents 00:12:04.210 --> 00:12:09.710 to employ pay invoice sort out receipts even 00:12:09.710 --> 00:12:12.570 though they aren't funded but the parents are 00:12:12.570 --> 00:12:13.750 having to kind of run it a little bit like a 00:12:13.750 --> 00:12:17.529 business is that kind of yeah so yeah so as part 00:12:17.529 --> 00:12:23.549 of Kian's package I do have so I employ my own 00:12:23.549 --> 00:12:26.620 PA twice a week so that i can go to work on a 00:12:26.620 --> 00:12:29.159 monday and a friday and that is through so it 00:12:29.159 --> 00:12:30.899 was the children's social once we finally got 00:12:30.899 --> 00:12:33.320 a children's social worker that was provided 00:12:33.320 --> 00:12:35.940 through what's called a direct payment so and 00:12:35.940 --> 00:12:38.759 then there's a company that we use which help 00:12:38.759 --> 00:12:41.360 you with all of that side of the stuff so like 00:12:41.360 --> 00:12:44.659 they'd sort out they sort out like employing 00:12:44.659 --> 00:12:47.980 doing dds checks and then you just have to do 00:12:47.980 --> 00:12:50.000 a time sheet but you are basically registered 00:12:50.000 --> 00:12:53.940 as an employer So there's all of that. But you're 00:12:53.940 --> 00:12:56.840 not having more access to you otherwise, isn't 00:12:56.840 --> 00:12:58.799 it? And then you said it's children's services. 00:12:59.019 --> 00:13:02.000 How long does children's services would have 00:13:02.000 --> 00:13:05.120 Kian for? What age would that have to be? So 00:13:05.120 --> 00:13:09.059 Kian got them around, I think it was about 16. 00:13:09.200 --> 00:13:10.980 It took a long time to battle to get a social 00:13:10.980 --> 00:13:13.620 worker. And then that's now ended. When he's 00:13:13.620 --> 00:13:15.879 18, that will end. It's literally that stops. 00:13:16.759 --> 00:13:18.460 And then they're like, you're with the adult 00:13:18.460 --> 00:13:21.330 social care now. and it's just oh okay so it's 00:13:21.330 --> 00:13:25.049 basically she's gone it's like bye and then you're 00:13:25.049 --> 00:13:29.009 now navigating a whole new system from scratch 00:13:29.009 --> 00:13:32.590 you automatically find a social worker in adult 00:13:32.590 --> 00:13:35.789 services so the children's social worker will 00:13:35.789 --> 00:13:38.789 put in a referral to adult social care and then 00:13:38.789 --> 00:13:41.289 you wait for that to be accepted and then this 00:13:41.289 --> 00:13:44.070 is when it goes on to process of what happens 00:13:44.070 --> 00:13:46.750 when you move over to adult social care so if 00:13:46.750 --> 00:13:49.019 you've got a children's social worker already 00:13:49.019 --> 00:13:52.700 they will do the referral for you if you haven't 00:13:52.700 --> 00:13:55.340 then you would need to go to your local furry 00:13:55.340 --> 00:13:58.019 and say that you need a adult like social care 00:13:58.019 --> 00:14:01.379 care needs assessment um but there are some people 00:14:01.379 --> 00:14:06.240 who you're on the cusp of needing it at 14 say 00:14:06.240 --> 00:14:09.899 there are benefits starting that process then 00:14:09.899 --> 00:14:14.580 so that you're at least yeah known to care I 00:14:14.580 --> 00:14:17.039 suppose would would you say that that's a good 00:14:17.039 --> 00:14:20.299 yeah I think yeah I think yeah kids can miss 00:14:20.299 --> 00:14:23.639 so much school and we've basically missed all 00:14:23.639 --> 00:14:27.000 of the transition like meetings workshops so 00:14:27.000 --> 00:14:32.080 I would like just recommend to anyone yeah so 00:14:32.080 --> 00:14:35.039 I would just recommend from 14 just talking to 00:14:35.039 --> 00:14:38.039 your child's like education provider and seeing 00:14:38.039 --> 00:14:41.789 what is what they do for to start the transition 00:14:41.789 --> 00:14:43.529 into adult because that's when you should start 00:14:43.529 --> 00:14:46.649 talking talking about it but yeah going into 00:14:46.649 --> 00:14:51.870 when you get your adult get accepted into adult 00:14:51.870 --> 00:14:53.730 social care you have to have like a care it's 00:14:53.730 --> 00:14:56.429 called a care needs assessment so you'll meet 00:14:56.429 --> 00:14:59.049 and that's when you'll talk about like fakir 00:14:59.049 --> 00:15:00.769 and he doesn't have the capacity to be able to 00:15:00.769 --> 00:15:04.190 come and like some might be you know some young 00:15:04.930 --> 00:15:06.950 adults might be able to say what they want to 00:15:06.950 --> 00:15:09.570 do or what they feel they would like but obviously 00:15:09.570 --> 00:15:12.649 for Kian it's obviously down onto us as his parents 00:15:12.649 --> 00:15:15.350 to think what we think is best for him so you 00:15:15.350 --> 00:15:17.210 just have a meeting and you speak about all of 00:15:17.210 --> 00:15:21.490 his needs like his past and his traumas and everything 00:15:21.490 --> 00:15:26.570 and for Kian like I would hope my dream to him 00:15:26.570 --> 00:15:29.250 would have been to go to like maybe a day service 00:15:29.250 --> 00:15:32.529 a few times a week but because he's been out 00:15:32.529 --> 00:15:35.269 of school for so long he That wouldn't be possible 00:15:35.269 --> 00:15:38.110 for him at the moment. So we're looking for him 00:15:38.110 --> 00:15:41.529 to hire him like a PA or like a team of carers 00:15:41.529 --> 00:15:44.190 to carry on from what his education provider 00:15:44.190 --> 00:15:46.590 are doing now, take them out in the community. 00:15:46.950 --> 00:15:50.710 And we're hoping to find someone that can take 00:15:50.710 --> 00:15:53.389 over from that. And that will either be me looking 00:15:53.389 --> 00:15:57.710 to find and employ someone myself. But you can 00:15:57.710 --> 00:16:00.049 have agencies that help you with that or find 00:16:00.049 --> 00:16:02.769 an actual care provider who can have a team of 00:16:02.769 --> 00:16:06.240 people that. you would have okay but there's 00:16:06.240 --> 00:16:10.580 also other options like you could if he was able 00:16:10.580 --> 00:16:12.879 i would love him to go to like and there's work 00:16:12.879 --> 00:16:15.679 placements that we have sort of like cafes and 00:16:15.679 --> 00:16:18.419 gardening places that these young people can 00:16:18.419 --> 00:16:20.559 go and work out which i think is lovely they're 00:16:20.559 --> 00:16:23.320 working and learning and that's so nice or you 00:16:23.320 --> 00:16:25.820 might think about if you want your Do they want 00:16:25.820 --> 00:16:28.220 to go into supported living? Like you've got 00:16:28.220 --> 00:16:31.539 that option. There's life skills centres we have 00:16:31.539 --> 00:16:34.059 near us as well. But unfortunately for Kian, 00:16:34.179 --> 00:16:37.139 he isn't in that sort of space to be able to 00:16:37.139 --> 00:16:38.639 do that. Because I think that's when you look 00:16:38.639 --> 00:16:41.340 back at the impact that of him missing all that 00:16:41.340 --> 00:16:44.639 time has had on him. He's lost so many opportunities 00:16:44.639 --> 00:16:48.600 and social opportunities that he doesn't have 00:16:48.600 --> 00:16:51.929 the capacity to be able to go to a... day centre 00:16:51.929 --> 00:16:54.409 and he wouldn't be happy either so I just you 00:16:54.409 --> 00:16:56.509 know I want him to be happy and I think if that's 00:16:56.509 --> 00:16:57.970 not what he wants to do and I know he's going 00:16:57.970 --> 00:17:01.190 to be unhappy we'll think of other options so 00:17:01.190 --> 00:17:05.589 I'm hoping to find someone more confusion and 00:17:05.589 --> 00:17:08.750 and could send him back even further yeah it's 00:17:08.750 --> 00:17:10.910 the wrong thing I suppose I can imagine you're 00:17:10.910 --> 00:17:14.930 very aware of that yeah I just think like I want 00:17:14.930 --> 00:17:18.700 him to be happy and feel safe and do the things 00:17:18.700 --> 00:17:21.180 he loves. And if that's with someone, like finding 00:17:21.180 --> 00:17:24.259 a carer or a PA to carry on doing that with him. 00:17:24.380 --> 00:17:26.799 You know, I can look after him at home or take 00:17:26.799 --> 00:17:30.460 him out. Yeah, I just want him to be happy. And 00:17:30.460 --> 00:17:34.059 it's just trying to find that right person. Yeah, 00:17:34.200 --> 00:17:36.400 exactly. You've got a person that can persist 00:17:36.400 --> 00:17:40.099 and build to him. Is that the dream of him finding, 00:17:40.680 --> 00:17:42.640 like having a really good relationship with the 00:17:42.640 --> 00:17:45.339 carer and can build his confidence to go out? 00:17:45.420 --> 00:17:48.190 What if you... could look in the future and have 00:17:48.190 --> 00:17:50.269 him a dream scenario, what would that look like 00:17:50.269 --> 00:17:53.309 for you? A dream scenario? I would love for him 00:17:53.309 --> 00:17:56.589 to be able to... I would love him to be able 00:17:56.589 --> 00:17:59.910 to go out and socialise more and access something 00:17:59.910 --> 00:18:02.349 like a day centre, which I mentioned. Or just, 00:18:02.470 --> 00:18:06.029 yeah, just have that and have a friend. He's 00:18:06.029 --> 00:18:07.549 obviously not... I know it sounds really sad, 00:18:07.650 --> 00:18:09.690 but he probably doesn't care because he loves 00:18:09.690 --> 00:18:12.009 being on his own and he loves his own company. 00:18:12.250 --> 00:18:14.670 But I always think my dream would be for him 00:18:14.670 --> 00:18:17.029 to have a friend. So I'm hoping he's going to 00:18:17.029 --> 00:18:19.109 find that person. That's my dream. He's going 00:18:19.109 --> 00:18:21.650 to find a person in life eventually who's going 00:18:21.650 --> 00:18:24.690 to be a friend to him. And yeah, I really, that 00:18:24.690 --> 00:18:28.769 would be my dream for him. And really care for 00:18:28.769 --> 00:18:31.829 each other in that mutual friendship way. And 00:18:31.829 --> 00:18:33.730 get someone that just sort of clicks with him, 00:18:33.769 --> 00:18:37.109 understands him. And again, like find carers 00:18:37.109 --> 00:18:42.049 that are going to like love him. And care of 00:18:42.049 --> 00:18:43.869 him like, obviously not the same as I, because 00:18:43.869 --> 00:18:46.309 nobody ever would, but just love him and see 00:18:46.309 --> 00:18:48.869 him because he's such a character. Everybody 00:18:48.869 --> 00:18:51.269 that meets him, they all do fall in love with 00:18:51.269 --> 00:18:53.950 him. And I just want them to, yeah, build that 00:18:53.950 --> 00:18:56.470 bond and him to feel happy and safe to go out 00:18:56.470 --> 00:18:59.710 and maybe eventually start exploring things like 00:18:59.710 --> 00:19:02.089 a day centre with the safety of someone that 00:19:02.089 --> 00:19:03.930 he trusts. Because that's all what it's about, 00:19:04.009 --> 00:19:06.890 isn't it? Building up that trust. And I can see 00:19:06.890 --> 00:19:09.349 that with his workers now. They've got such a 00:19:09.349 --> 00:19:11.700 lovely bond. That's because I know they really 00:19:11.700 --> 00:19:14.579 took that time to get to know him. And they just 00:19:14.579 --> 00:19:17.000 really get him. And I just think they're really 00:19:17.000 --> 00:19:20.059 special. It's such a shame they've got to go. 00:19:20.200 --> 00:19:23.640 But yeah, I'm hoping. I'm still looking. But 00:19:23.640 --> 00:19:26.240 I'm hoping we'll find some people to take over 00:19:26.240 --> 00:19:28.119 and they're going to be just as good. Definitely. 00:19:28.140 --> 00:19:30.059 At least you know it's possible because he has 00:19:30.059 --> 00:19:32.859 had those good experiences over the last years. 00:19:33.519 --> 00:19:35.839 Yeah, because I remember saying he's never ever 00:19:35.839 --> 00:19:37.759 going to go out in the car with anybody other 00:19:37.759 --> 00:19:39.890 than me. Like I was saying to my partner, he's 00:19:39.890 --> 00:19:43.529 never going to go. And then that day, it might 00:19:43.529 --> 00:19:45.349 be the smallest thing to somebody. But when I 00:19:45.349 --> 00:19:47.569 saw him driving off in the car, I just was like, 00:19:47.569 --> 00:19:50.509 like in tears thinking, gosh, he's going out 00:19:50.509 --> 00:19:53.470 without me. Like it's such a big thing for. being 00:19:53.470 --> 00:19:55.609 at home with me all that time and I'm like his 00:19:55.609 --> 00:19:58.269 safe person and I remember saying to him why 00:19:58.269 --> 00:20:01.170 don't you want to go with these like the people 00:20:01.170 --> 00:20:02.670 that he goes with and he said I think it was 00:20:02.670 --> 00:20:04.630 something like they don't miss they won't listen 00:20:04.630 --> 00:20:06.829 to me like you do or something like that so I 00:20:06.829 --> 00:20:08.869 thought he obviously knows that I know everything 00:20:08.869 --> 00:20:12.490 like he knows that anything I think that's to 00:20:12.490 --> 00:20:15.849 happen I can help him straight away yeah because 00:20:15.849 --> 00:20:19.250 you absolutely are the expert there's no doubt 00:20:19.250 --> 00:20:22.500 about that knew so incredibly well and and he 00:20:22.500 --> 00:20:25.339 knows that as well and and it takes time for 00:20:25.339 --> 00:20:27.940 other people to come in and and learn him you 00:20:27.940 --> 00:20:32.180 know yeah and all of his how he can what he really 00:20:32.180 --> 00:20:35.839 means by things all of those yeah definitely 00:20:35.839 --> 00:20:40.259 definitely if that's a dream what are your fears 00:20:40.259 --> 00:20:44.460 as kian moves into adulthood I think the fears 00:20:44.460 --> 00:20:48.019 are not knowing, for example, where he's going 00:20:48.019 --> 00:20:50.839 to live, who's going to look after him. Because 00:20:50.839 --> 00:20:54.619 obviously, I would think, oh, he's going to live 00:20:54.619 --> 00:20:57.619 with me forever. That's why years ago, I'd think, 00:20:57.640 --> 00:20:59.700 he's going to live with me forever. No one else 00:20:59.700 --> 00:21:01.240 is ever going to look after him. No one's going 00:21:01.240 --> 00:21:03.259 to look after him. But I thought, in reality, 00:21:03.380 --> 00:21:04.900 that can't happen because I'm obviously going 00:21:04.900 --> 00:21:07.039 to get older. I can't look after him forever. 00:21:07.259 --> 00:21:10.059 So obviously, that's a fear of who's going to 00:21:10.059 --> 00:21:13.589 look after him. not here anymore so you want 00:21:13.589 --> 00:21:16.589 and it's thinking like because no one's obviously 00:21:16.589 --> 00:21:19.390 going to do that the same as i would do and i 00:21:19.390 --> 00:21:22.269 know people listening to this now if you've got 00:21:22.269 --> 00:21:24.869 a child with quite high care needs who needs 00:21:24.869 --> 00:21:28.529 sort of 24 7 support that is the worry that i'm 00:21:28.529 --> 00:21:32.349 sure they can relate to of that feeling that 00:21:32.349 --> 00:21:34.049 never really goes away of who's going to look 00:21:34.049 --> 00:21:36.009 after them when you're you know you're not here 00:21:36.509 --> 00:21:38.730 And then that's what started me thinking, like, 00:21:38.730 --> 00:21:41.450 I want to be, even though it's scary, I want 00:21:41.450 --> 00:21:45.349 to be part of his transition to wherever he is. 00:21:45.470 --> 00:21:47.190 I'm not sure what that's going to look like yet. 00:21:47.230 --> 00:21:49.490 I think, like, ideally he would need a space 00:21:49.490 --> 00:21:51.730 of his own because he doesn't cope being around 00:21:51.730 --> 00:21:55.410 others. They sort of trigger him, like he finds 00:21:55.410 --> 00:21:57.130 it really difficult being around others with 00:21:57.130 --> 00:21:59.829 similar. sort of difficulties to him like stimming 00:21:59.829 --> 00:22:02.269 or if they harm or he'll just does he just can't 00:22:02.269 --> 00:22:04.450 cope with it so I think he would need his own 00:22:04.450 --> 00:22:07.670 space with carers but that just makes me think 00:22:07.670 --> 00:22:09.849 like I want to be like young enough to be part 00:22:09.849 --> 00:22:12.809 of that to make sure he's okay and help him I'd 00:22:12.809 --> 00:22:14.349 hate to be in a position where like you know 00:22:14.349 --> 00:22:16.990 you get older like I don't know so I'm in my 00:22:16.990 --> 00:22:19.599 60s and then You know, you're in an emergency 00:22:19.599 --> 00:22:21.519 situation where he has to go somewhere and think 00:22:21.519 --> 00:22:24.059 how scary that would be. But thinking about that 00:22:24.059 --> 00:22:26.980 now is also really scary. So I think they're 00:22:26.980 --> 00:22:30.400 my fears of what's going to, where is he going 00:22:30.400 --> 00:22:32.519 to live? You know, what's going to happen? What's 00:22:32.519 --> 00:22:35.460 his situation going to be like? Especially knowing 00:22:35.460 --> 00:22:40.700 how attached he is to me and home. So that is 00:22:40.700 --> 00:22:42.779 a fear I think about a lot. I don't think many 00:22:42.779 --> 00:22:45.220 parents will be able to relate to that. That 00:22:45.220 --> 00:22:48.240 fear that I listen to, it does make so much sense 00:22:48.240 --> 00:22:54.019 because they rely on you so much. I suppose if 00:22:54.019 --> 00:22:57.900 that's your fear and that's what you're wanting 00:22:57.900 --> 00:23:02.819 for him, looking to now in the small steps that 00:23:02.819 --> 00:23:06.920 it takes to get big dream and wish for him, by 00:23:06.920 --> 00:23:09.740 looking for a PA and by him being out in the 00:23:09.740 --> 00:23:13.440 car, that is already working towards. that yeah 00:23:13.440 --> 00:23:16.559 the reality isn't it no small steps i guess that's 00:23:16.559 --> 00:23:18.440 what you have to because it's not going to be 00:23:18.440 --> 00:23:21.039 a one day he's with you one day he's living on 00:23:21.039 --> 00:23:25.099 his own with caring take you you are already 00:23:25.099 --> 00:23:27.599 taking the steps for him building his confidence 00:23:27.599 --> 00:23:30.279 to be people and that is that is just massive 00:23:30.279 --> 00:23:33.819 it's so huge that he's doing that yeah because 00:23:33.819 --> 00:23:36.559 i think back to where we were him not leaving 00:23:36.559 --> 00:23:40.220 the house at all only with me or his dad to go 00:23:40.220 --> 00:23:42.960 out with people that isn't me it's like really 00:23:42.960 --> 00:23:45.000 huge in itself and I often say to them look how 00:23:45.000 --> 00:23:48.299 far we've come like I was always having to go 00:23:48.299 --> 00:23:50.619 with him and now I just like say bye and he just 00:23:50.619 --> 00:23:52.200 like goes even though it's not for that long 00:23:52.200 --> 00:23:55.400 he's still doing it and then we can with the 00:23:55.400 --> 00:23:58.039 new people we can obviously expand on that and 00:23:58.039 --> 00:24:00.539 he might tolerate people looking after him in 00:24:00.539 --> 00:24:02.500 the house and then again that's another thing 00:24:02.500 --> 00:24:05.319 of him accepting that someone else can look after 00:24:05.319 --> 00:24:09.019 him not me in our home so I can maybe have a 00:24:09.019 --> 00:24:10.859 little bit of time to myself, which would be 00:24:10.859 --> 00:24:14.299 nice. Yeah, for yourself and for yourself and 00:24:14.299 --> 00:24:16.519 everybody else that relies on you, I'm sure. 00:24:16.940 --> 00:24:19.000 Yeah, yeah, definitely. But yeah, so you have 00:24:19.000 --> 00:24:21.039 to look at these little small steps, but they 00:24:21.039 --> 00:24:24.380 are going to, you know, like you say, be a girlie. 00:24:25.880 --> 00:24:28.740 Those future thoughts for Kian as well, right? 00:24:28.799 --> 00:24:31.859 So often, regardless of her needs, so often the 00:24:31.859 --> 00:24:34.000 most able sibling, no matter what their needs 00:24:34.000 --> 00:24:37.299 are, also become responsible. or their sibling 00:24:37.299 --> 00:24:39.380 is is that something you've thought about as 00:24:39.380 --> 00:24:42.720 well yeah definitely I think like I know that's 00:24:42.720 --> 00:24:45.180 my hope for my future that she has Kian has got 00:24:45.180 --> 00:24:47.720 grace and I hope that you know she's always going 00:24:47.720 --> 00:24:49.539 to look out for him and be there for him and 00:24:49.539 --> 00:24:52.099 she often says to me like when I move out I'm 00:24:52.099 --> 00:24:53.700 going to have to have an extra room for Kian 00:24:53.700 --> 00:24:56.119 and I'm just like oh and I try and explain like 00:24:56.119 --> 00:24:58.259 you wouldn't be responsible for looking after 00:24:58.259 --> 00:25:00.680 him like you're going to have your own life but 00:25:00.680 --> 00:25:02.940 then that gave me reassurance that she she's 00:25:02.940 --> 00:25:04.799 going to look out for him as well and she'd never 00:25:04.799 --> 00:25:09.130 say like karen and um yeah so i do hope that 00:25:09.130 --> 00:25:11.930 she would then i do hope that yeah yeah yeah 00:25:11.930 --> 00:25:16.789 because there's lots of things to look into yeah 00:25:16.789 --> 00:25:18.650 there's lots of things to look into that i haven't 00:25:18.650 --> 00:25:22.750 even gone into but things like to set up to like 00:25:22.750 --> 00:25:25.710 protect his future like trust funds and um things 00:25:25.710 --> 00:25:27.609 like that so i think like she will probably be 00:25:27.609 --> 00:25:31.539 part of that like helping him be like a trustee 00:25:31.539 --> 00:25:34.059 so like you know any if it was to come into any 00:25:34.059 --> 00:25:37.660 money it like protects his yeah just sort of 00:25:37.660 --> 00:25:40.000 his care and his benefits and things there's 00:25:40.000 --> 00:25:42.940 so much I've learned so much just trying like 00:25:42.940 --> 00:25:45.019 talking to other parents really who are in this 00:25:45.019 --> 00:25:47.500 situation or have been past it yeah I've learned 00:25:47.500 --> 00:25:49.359 so much about things you need to put in place 00:25:49.359 --> 00:25:54.420 and um is that for social media how are you finding 00:25:54.420 --> 00:25:56.420 these communities of people for supporting people 00:25:56.420 --> 00:25:58.799 and wanting to So there's some people that I 00:25:58.799 --> 00:26:02.240 know from that used to go to key in school with 00:26:02.240 --> 00:26:03.779 him. So I'm still in touch with a lady who's 00:26:03.779 --> 00:26:06.740 got a slightly older child. One of my best friends 00:26:06.740 --> 00:26:09.220 whose son is autistic are roughly the same age. 00:26:09.240 --> 00:26:11.059 So we're sort of talking about this sort of stage 00:26:11.059 --> 00:26:13.380 together. She's a little slightly bit behind 00:26:13.380 --> 00:26:15.599 me. So I'm kind of helping her with the next 00:26:15.599 --> 00:26:17.220 sort of thing that's going to happen. But I've 00:26:17.220 --> 00:26:19.279 really found, so I don't know if you've heard 00:26:19.279 --> 00:26:23.150 or anyone's heard of Mencap. So they provide 00:26:23.150 --> 00:26:25.809 webinars. If you go onto their website, I've 00:26:25.809 --> 00:26:27.609 watched them about three times, so I just keep 00:26:27.609 --> 00:26:29.269 watching over again, thinking, oh, I need to 00:26:29.269 --> 00:26:31.109 watch it again. But they do regular webinars 00:26:31.109 --> 00:26:36.710 about wills and trusts. So if you've got children 00:26:36.710 --> 00:26:39.210 or young adults, obviously with disability and 00:26:39.210 --> 00:26:41.730 they haven't got understanding or have lack of 00:26:41.730 --> 00:26:45.269 capacity, because part of this going into adulthood 00:26:45.269 --> 00:26:47.960 services your... Like a child will have to have 00:26:47.960 --> 00:26:51.059 a capacity assessment to see that understanding 00:26:51.059 --> 00:26:53.200 and if they're obviously able to manage their 00:26:53.200 --> 00:26:56.180 own personal budget or their care package. Or 00:26:56.180 --> 00:26:59.079 if someone obviously like me, I'm Kian's appointee, 00:26:59.099 --> 00:27:01.720 I will obviously manage his finances and things 00:27:01.720 --> 00:27:03.599 at the moment. But then it can get complicated 00:27:03.599 --> 00:27:05.740 later on down the line. I think like if when 00:27:05.740 --> 00:27:07.599 you're looking for support and living and things 00:27:07.599 --> 00:27:10.539 like that, if they lack capacity, that's where 00:27:10.539 --> 00:27:13.460 deputieship has been mentioned. That then gives 00:27:13.460 --> 00:27:16.279 you, and it does cost, but... That would give, 00:27:16.339 --> 00:27:18.559 say, me the right to make all decisions over 00:27:18.559 --> 00:27:21.980 his finances. So with the PIP, if they get PIP, 00:27:22.200 --> 00:27:24.200 you're their appointee to manage that. But it 00:27:24.200 --> 00:27:26.059 gets a bit more complicated with other things 00:27:26.059 --> 00:27:29.500 where you may need deputieship. And there's also 00:27:29.500 --> 00:27:32.579 a health deputieship as well. So then if you 00:27:32.579 --> 00:27:36.180 get that, that gives you all rights over if, 00:27:36.319 --> 00:27:38.839 I don't know, your young adult or child would 00:27:38.839 --> 00:27:42.220 need to have an operation, say. you would have 00:27:42.220 --> 00:27:44.480 the right to be able to say you know you want 00:27:44.480 --> 00:27:46.779 them to or you don't whereas if you don't sometimes 00:27:46.779 --> 00:27:48.519 they get complicated then you have to have a 00:27:48.519 --> 00:27:51.440 i think it's in the best interest of with like 00:27:51.440 --> 00:27:53.859 professionals and doctors and things so there's 00:27:53.859 --> 00:27:55.640 lots of definitely lots of things to think about 00:27:55.640 --> 00:27:58.660 but mencap has been really good they do lots 00:27:58.660 --> 00:28:00.940 of webinars and then there's the carers academy 00:28:00.940 --> 00:28:03.579 which is the she has an instagram page and she 00:28:03.579 --> 00:28:06.779 has a book that's helped me so much as well and 00:28:06.779 --> 00:28:09.500 contact which is a charity i've called them lots 00:28:09.500 --> 00:28:12.859 of times And they've helped me sort out his benefits 00:28:12.859 --> 00:28:14.380 and things because I wasn't sure if he could 00:28:14.380 --> 00:28:17.299 apply for like universal credit or things like 00:28:17.299 --> 00:28:18.920 that. So they've helped me with that and talked 00:28:18.920 --> 00:28:22.279 about accessing his trust fund because I know 00:28:22.279 --> 00:28:24.559 lots of parents have difficulties with that because 00:28:24.559 --> 00:28:26.920 obviously he lacks capacity. So that makes it 00:28:26.920 --> 00:28:29.279 really hard. So you can't just go and say, I'm 00:28:29.279 --> 00:28:32.940 coming to claim my trust fund. So I have successfully 00:28:32.940 --> 00:28:35.579 just claimed his trust fund, but that was quite 00:28:35.579 --> 00:28:38.819 a challenge. But yeah, so we've got that. So 00:28:38.819 --> 00:28:41.369 yeah, there's lots of things. around those sort 00:28:41.369 --> 00:28:43.190 of charities and organizations that are really 00:28:43.190 --> 00:28:48.450 helpful and talking to other parents I will leave 00:28:48.450 --> 00:28:50.730 them down below I think that'll be incredibly 00:28:50.730 --> 00:28:53.509 helpful to be able to have yeah yeah definitely 00:28:53.509 --> 00:28:58.150 yeah and then just talking to other parents I 00:28:58.150 --> 00:29:00.670 think it's been the most valuable thing and just 00:29:00.670 --> 00:29:03.880 finding people that understand and And that's 00:29:03.880 --> 00:29:05.980 the best support, I think, in therapy. If you 00:29:05.980 --> 00:29:08.160 meet another parent who's in the same situation, 00:29:08.440 --> 00:29:10.220 you can just chat and they just get it. And then 00:29:10.220 --> 00:29:12.440 you come away thinking, like, you know, I'm not 00:29:12.440 --> 00:29:14.940 so alone in this. And there is people that can 00:29:14.940 --> 00:29:17.359 help. Because I did feel quite, I did feel very 00:29:17.359 --> 00:29:20.259 overwhelmed to begin with. And then I've just 00:29:20.259 --> 00:29:23.359 sort of tried to listen to my voice that I give 00:29:23.359 --> 00:29:25.279 to people. Like, you can't do it all at once. 00:29:25.299 --> 00:29:27.980 You have to just take it step by step. Because 00:29:27.980 --> 00:29:29.640 I was like, I've got to do this. And I was just 00:29:29.640 --> 00:29:31.240 getting so overwhelmed that I've got to set this 00:29:31.240 --> 00:29:35.460 up. I've still got so much to do now, but I just 00:29:35.460 --> 00:29:38.119 think just take one step at a time. That's all 00:29:38.119 --> 00:29:40.960 you can really do to not sort of get too overwhelmed 00:29:40.960 --> 00:29:42.799 with the thing that there is to think about. 00:29:44.420 --> 00:29:47.140 Yeah. Yeah. And you to like all these charities 00:29:47.140 --> 00:29:49.240 and amazing organisations that are there to support 00:29:49.240 --> 00:29:50.920 you on the way. You don't have to do this alone 00:29:50.920 --> 00:29:55.109 is the point. Yeah, definitely. yeah I think 00:29:55.109 --> 00:29:56.950 you get so used to as parents especially being 00:29:56.950 --> 00:29:59.670 let down by the education and social care system 00:29:59.670 --> 00:30:02.809 as you have you get so used to not trusting the 00:30:02.809 --> 00:30:04.609 organizations you know forget about a key and 00:30:04.609 --> 00:30:06.569 not trusting them you've lost a lot of trust 00:30:06.569 --> 00:30:09.509 in the systems as well you get used to having 00:30:09.509 --> 00:30:11.130 to do everything by yourself but it doesn't have 00:30:11.130 --> 00:30:13.250 to be that way there are organizations and charities 00:30:13.250 --> 00:30:15.549 out there that will yeah will support you in 00:30:15.549 --> 00:30:18.109 hard yeah I think that's what I have got like 00:30:18.109 --> 00:30:22.049 because I'm so used to not all the time like 00:30:22.049 --> 00:30:25.650 having a fight or a you know like just not that 00:30:25.650 --> 00:30:28.690 support there so it is like thinking looking 00:30:28.690 --> 00:30:33.289 for these yeah the support that you can access 00:30:33.289 --> 00:30:37.210 and yeah definitely and it's also I think it's 00:30:37.210 --> 00:30:40.190 hard to I feel like with Kieran approaching 18 00:30:40.190 --> 00:30:43.069 I was like really emotional so I thought to myself 00:30:43.069 --> 00:30:45.329 I'm happy but I was like sad it was like a very 00:30:45.329 --> 00:30:47.670 I couldn't really explain the feeling that was 00:30:47.670 --> 00:30:49.410 on the eve of his birthday and I was like thinking 00:30:49.410 --> 00:30:52.319 I can't believe Like, as an adult, it was just, 00:30:52.339 --> 00:30:54.460 I was just really emotional. And I was just looking 00:30:54.460 --> 00:30:57.160 back at loads of photos. And then I have that 00:30:57.160 --> 00:30:58.920 very split moment of thinking, oh, what would 00:30:58.920 --> 00:31:01.079 he be doing? Like, you know, like, would he be 00:31:01.079 --> 00:31:03.599 going out with his mates? I just had that thought 00:31:03.599 --> 00:31:06.059 sometimes. I don't happen very often because 00:31:06.059 --> 00:31:08.440 I think, like, you know, this is our life. This 00:31:08.440 --> 00:31:11.200 is what, you know, I love Kieran and wouldn't 00:31:11.200 --> 00:31:13.740 change him. But I do have that very split of, 00:31:13.759 --> 00:31:15.420 like, I wonder if he'd be going on holiday with 00:31:15.420 --> 00:31:17.740 his mates. And I have that little, like, any 00:31:17.740 --> 00:31:20.210 last little... for a short while and then i think 00:31:20.210 --> 00:31:24.990 that like our transitions and like our journey's 00:31:24.990 --> 00:31:28.549 been different but like i just feel like i'm 00:31:28.549 --> 00:31:31.930 like embrace what we have and just like him and 00:31:31.930 --> 00:31:35.990 just love him and yeah you know it's just different 00:31:35.990 --> 00:31:38.869 but do you have any advice parents with younger 00:31:38.869 --> 00:31:43.390 send children that are fearful of what yeah i 00:31:43.390 --> 00:31:48.200 think i would say like maybe it's hard not to 00:31:48.200 --> 00:31:50.619 but try not to look too far ahead to the future 00:31:50.619 --> 00:31:53.759 because you can then have all that worry and 00:31:53.759 --> 00:31:56.099 then it takes your joy away from like what's 00:31:56.099 --> 00:31:58.579 happening now and the things they're doing now 00:31:58.579 --> 00:32:02.359 and you can just worry yourself so much and I've 00:32:02.359 --> 00:32:04.700 always sort of said my motto is like I just take 00:32:04.700 --> 00:32:07.380 each day at a time and if things go wrong one 00:32:07.380 --> 00:32:10.059 day I'm always like oh tomorrow's a new day like 00:32:10.059 --> 00:32:12.680 we say that a lot in our house but I just think 00:32:12.680 --> 00:32:17.609 yeah and if you can I would say try to find other 00:32:17.609 --> 00:32:21.589 parents that are in your similar situation like 00:32:21.589 --> 00:32:24.730 in person or online there's so much online support 00:32:24.730 --> 00:32:28.309 and loads of accounts that you know are open 00:32:28.309 --> 00:32:31.569 to helping you know we're all like it's quite 00:32:31.569 --> 00:32:34.869 a lovely community on i find on instagram that 00:32:34.869 --> 00:32:36.950 are all willing to help and support each other 00:32:36.950 --> 00:32:39.490 and just talking to someone i think can really 00:32:39.490 --> 00:32:43.309 help for you to feel less alone and yeah that's 00:32:43.309 --> 00:32:47.799 what i would yeah i think so yeah and that leads 00:32:47.799 --> 00:32:50.599 me on your account if people are listening today 00:32:50.599 --> 00:32:54.059 and want to follow your journey and how you're 00:32:54.059 --> 00:32:57.079 navigating it and and yeah how you're navigating 00:32:57.079 --> 00:33:00.220 having both children with quite diverse needs 00:33:00.220 --> 00:33:02.339 and how you're navigating adult where can they 00:33:02.339 --> 00:33:06.200 follow you in your journey so yeah i'm on instagram 00:33:06.200 --> 00:33:10.599 and it's life with the latins but yeah I'm just 00:33:10.599 --> 00:33:12.579 on Instagram I'm not on any others at the moment 00:33:12.579 --> 00:33:14.920 but yeah I try to keep up to date as much as 00:33:14.920 --> 00:33:17.200 I can and particularly with this journey with 00:33:17.200 --> 00:33:20.480 Kian because I found that there isn't that much 00:33:20.480 --> 00:33:22.960 support out and you do feel like you're starting 00:33:22.960 --> 00:33:24.940 off I kind of felt like I've started from the 00:33:24.940 --> 00:33:26.660 beginning again from like when you first got 00:33:26.660 --> 00:33:29.839 your diagnosis I feel like it's like I'm having 00:33:29.839 --> 00:33:31.720 to start and navigate everything all over again 00:33:31.720 --> 00:33:34.380 and there's not that much advice around so I'm 00:33:34.380 --> 00:33:37.279 hoping that trying to share this journey with 00:33:37.279 --> 00:33:39.420 kian and moving into adulthood i'll help other 00:33:39.420 --> 00:33:43.019 people to feel less alone like maybe i felt sort 00:33:43.019 --> 00:33:46.680 of a few months ago so yeah that's where you 00:33:46.680 --> 00:33:50.619 can find out if you want more and thank you so 00:33:50.619 --> 00:33:53.039 much for coming on to this because i know that 00:33:53.039 --> 00:33:55.819 it will help those in your position feel less 00:33:55.819 --> 00:33:58.220 alone and those that have the same fears as you 00:33:58.220 --> 00:34:02.000 had to feel more reassured so thank you lisa 00:34:02.000 --> 00:34:05.039 oh thank you thank you for Have a May.