WEBVTT

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Hi, my name is Jordan. I am a special education

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teacher from the UK. I share my passion for everything

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communication, sensory regulation and fun lesson

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ideas for my classroom of disabled pupils aged

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4 to 11. Each week I am joined by experts in

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the field answering your questions and sharing

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our knowledge and experience working alongside

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our beautiful young people. Let's get started.

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below to make the switch today now to the episode

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hello everybody and welcome to the sensory classroom

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podcast my name is jordan and today i'm joined

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by emily who is raising underscore rare on instagram

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emily is a clinical psychologist and mum to five

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-year -old autumn who who has an ultra -rare

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neurodevelopmental genetic condition called HNRNPH2,

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which impacts every area of her daughter's development.

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And I'm really excited to hear about parenting

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from this perspective with Emily today. Hi, Emily.

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Hello, thank you so much for having me here.

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You are so welcome. I jumped at the chance when

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I saw your request email come through because

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I do speak to lots of parents, but often they

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are falling into the bracket of autism and I

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haven't spoken to many, if not any parents like

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you. And then also you are a clinical psychologist.

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So I am so intrigued as to hear. how that impacts

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your parenting and navigating this world that

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you're in too yeah yeah from your perspective

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i don't know if you want to do like a little

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introduction as to who you are and your daughter

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Yeah, no, you did a very well introduction already.

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But yeah, so I'm mum to Autumn and also her sister

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River, who unfortunately doesn't get much of

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a look in in so many ways. So I wanted to mention

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her too. She is going to be two next week. But

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yeah, so I'm also a clinical psychologist and

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I have been for about 11 years, I think it is

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now. I work, I don't work with children though,

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I work with adults. So this is, yeah. It's different

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working with children. I always sort of try to

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avoid it in my career path because it feels so

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much more complicated as I'm discovering on this

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journey. In what way do you think it's more complicated?

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what do you mean by that well I always remember

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you have to kind of do a placement in training

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so I did I did do six months in a in a child

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placement and I just remember it was complicated

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because it's not just one person it's the family

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it's the system and that just like felt like

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too many too many things to keep in mind and

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so I just thought in my mind if I just work with

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adults it kind of keeps things more straightforward

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because you're just dealing with that one person

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yeah because it's not just the mental health

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of the child it's the mental health of the parents

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who are impacting on the child it's the schools

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it's um you know any anybody that's got contact

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with that child it's it became it just felt like

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too much for me to keep in mind yeah and so that's

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really why I kind of yeah that's interesting

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lots of the children in my class have huge teams

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around them and it can be overwhelming to lead

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those meetings and have those conversations when

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everybody's coming at it from slightly different

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angle it can it can certainly be quite overwhelming

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for those that don't know what does clinical

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psychology entail like what do what do you cover

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within that because i guess knowing that will

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then help us reflect on how that impacts you

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as a parent Yeah, no, clinical psychologists

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work with everybody and anybody, but it's essentially

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anybody and everybody that might be experiencing

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some kind of distress. So I think it is as simple

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as that. So, yes, there are lots of clinical

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psychologists that work in the mental health

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field. And that's always been my sort of journey.

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I actually work with NHS staff now who are in

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some kind of work related distress. But I have

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worked with people who have got kind of mild,

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moderate, complex mental health needs. But clinical

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psychologists can work with people with health

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conditions. And, you know, as we said, children,

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they can work in lots of different contexts.

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So in the community, in schools, in patient settings.

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So we kind of cover a wide kind of group of people.

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Well, everybody, really. Right. So even before

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your daughter came along, you had... quite a

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good understanding of neurodiversity and neurodevelopmental

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conditions, I suppose, that would affect mental

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health? I guess, if I'm really honest, it was

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a small part of our training, so probably not

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as much as I ought to. And also, I think the

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kind of environment has changed so much in the

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last 10 years that... it wasn't really on people's

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radar in the same way that it is now it felt

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very much like a sort of specialist area and

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if you're kind of interested in neurodiversity

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that that's kind of you'd go on a placement to

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be thinking about that sort of thing um you know

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working with people with autism for example or

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adhd or doing the assessments for people with

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those conditions and yeah it wasn't whereas now

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it's it's different it's it's very much like

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you know it's it's We've got to be thinking about

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it everywhere and we need to have that awareness.

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And so I feel like I'm kind of learning from

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my own experience with parenting autumn. That's

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actually shaped how I've been thinking about

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in my own work. So now I am actually leading

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on the kind of neuro kind of affirmative changes

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that we're making in our service. And it's really

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small little things, actually, that we're changing

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and doing. I've learned that it's those small

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little things that make people feel seen, make

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people feel understood, make people kind of feel

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like, well, they're more supported, really, just,

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you know, with their needs, their different needs.

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Yeah, and I suppose that starts from even before

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they're even in your door, you know, is the application

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process accessible? Is the waiting room accessible?

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it all accessible um i've recently i mean we'll

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get on to you but um i've recently uh gone for

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an autism and adhd uh assessment myself and sitting

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in the waiting room was so inaccessible really

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there was uh noise and uh yeah just we all the

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weird things going on and and it just made it

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really accessible the whole thing so it's just

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really interesting to know that even before you

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even step in the room sometimes some of those

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situations can be inaccessible to adults or children

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um needing that service yeah i think nhs environments

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are really rubbish for it you know they've got

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the terrible lighting and you know just noises

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everywhere um like one of the things we change

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it's so it's so silly really but there were just

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posters and pictures and everywhere and it was

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so busy like it was stressing me out going into

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just the corridor so it's just like strip that

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bag you don't need it all um it's just overwhelming

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basically I think how more accessible the world

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would be if everybody thought like that, because

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it doesn't hurt everybody else. Everybody else

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will find it less overwhelming too. Well, that's

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right. Yeah, it's better for everybody. And like,

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oh, the one thing that really bugs me is the

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ticking clocks. Yeah, exactly. So I have to,

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I'm working on changing that. But yeah, as I

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said, it is little things sometimes, but that

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actually do make a big difference. So your awareness

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of those. crucial need for that comes from your

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daughter so let's talk about her uh that's that's

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really what i want to get into today did you

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know about any of her needs before birth no nothing

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um we had a very typical pregnancy birth was

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was fine other than painful and yeah we were

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oblivious it was covid times so We didn't get

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to see other children her age to quite the same

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extent. So we didn't sort of notice that she

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wasn't kind of doing the things that other typical

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babies would do. We just thought she was a really

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easygoing, placid kind of baby. We, yeah, we

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didn't notice anything. It was only when she

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wasn't showing signs of walking. That was the

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first sign, really. And that... to be honest

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with you I was very much of the view that lots

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of people say like you know it will come you

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know every child's different just just wait it

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out you know she's going to walk eventually it'll

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be fine so I was just I was just very much like

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let's just go with the flow like it's going to

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happen like nothing isn't not going to happen

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and little did I know I had no I just didn't

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know I didn't realize we with River our second

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now you we see the differences are so huge But

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it's just like things like, you know, not reaching

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out for toys and all kind of just engaging with

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the world. Like she would engage with us. And

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so I think I had that very classic. kind of view

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of autism or you know that's the main kind of

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neurodivergent condition that you kind of think

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about which is like you know no eye contact or

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just you know not not wanting to respond to your

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voice and things like that and she wasn't showing

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those sorts of signs so um i was actually really

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reassured because she was smiling at us engaging

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with us but actually on reflection she wasn't

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engaging with the world and yeah and then she

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wasn't showing any of that internal motivation,

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internal drive to learn. And again, I didn't

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really think much of it at the time. But on reflection,

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when I see River and her internal drive to learn,

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you know, she actually wants to kind of learn

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things just very naturally. Oh, what's that?

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You know, let's find out about this. Let's explore

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this. It just came so naturally to her. Whereas

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for Autumn, it's just not there. It's non -existent.

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Everything she learns, she has to be. shown and

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even then it's not just shown once it's shown

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over and over and over again with lots of repetition

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so yeah it started out with the walking and then

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it's the you know lack of speech not talking

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and then you know you become more and more aware

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of just all the things that that children do

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learn in those early stages that she just wasn't

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learning she wasn't picking up So, yeah, she's

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five now. She's nearly six. Developmentally,

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she's probably closer to an 18 -month -old. Very

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strangely, my second has surpassed her very quickly.

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Almost all areas, I think maybe the only thing

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that she's not quite doing is jumping and Autumn

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can jump, you know, about that much off the ground.

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But that's, you know, going to come very quickly.

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But other than that, she surpassed her so, so

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quickly. So that's kind of, yeah, hard to see.

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Bittersweet in many ways. But yeah, yeah. For

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Autumn, she is delayed in every area of development.

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Because she didn't fit the typical, you know,

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autism, like you said, the umbrella of what we

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just naturally think of as neurodiversity. And

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it was a much more, you say ultra rare, ultra

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rare neurodevelopmental condition. Did you find

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that there was a little bit of misunderstanding

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when you first went to get support or, you know,

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that kind of health tech kind of thing? What

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did that process look like? Because she didn't.

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tick those typical neurotypical neurodevelopmental

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divergent boxes I suppose yeah it was a strange

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journey really because we just weren't really

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getting any information it was I think services

00:12:38.350 --> 00:12:43.070
do a watch and wait so they weren't really communicating

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with us kind of what could be what might be possible

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and so we were kind of ignorant and oblivious

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and so you know initially when it was kind of

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you know she's not walking we went down the very

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that just that path of okay so um let's find

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out why she's not walking but actually we didn't

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realize you know all the possible possibilities

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of why a child might not learn to walk to begin

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with and so i think because maybe because they

00:13:12.240 --> 00:13:13.899
don't want to sort of scare you with all the

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different potential options it could be but for

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us that just meant we weren't then prepared for

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what was to come yeah so we just kind of went

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went through it very just unknown like unknowingly

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um and you know things weren't mentioned things

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weren't discussed it was just watch and wait

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so even the walking it was you know let's just

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watch and wait and then you get another phone

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call is she walking yet no she's not yet okay

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well we'll phone you again in three months time

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and then it got to a point where okay now this

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has been quite a while now let's do some more

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tests and those all came back you know okay like

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she had an MRI of her neck and her her brain

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and that all came back normal and so physically

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she has the capacity to walk yeah right okay

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she is walking now okay she is walking now but

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that was that was like our main focus because

00:14:08.320 --> 00:14:12.210
we didn't know what else was to come and so Yeah,

00:14:12.230 --> 00:14:14.750
then it was very much get her walking. So it

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was lots and lots of us putting in the physio

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input. We got very, very little support in terms

00:14:20.929 --> 00:14:23.789
of NHS services. Because of COVID or is that

00:14:23.789 --> 00:14:28.539
quite normal? I don't know I think again is we

00:14:28.539 --> 00:14:29.919
got the impression there's a lot of watch and

00:14:29.919 --> 00:14:33.419
wait but for us that was like no right and also

00:14:33.419 --> 00:14:35.480
some of these things like the sooner you do it

00:14:35.480 --> 00:14:37.200
the lighter they are the easier it is for them

00:14:37.200 --> 00:14:39.940
to get it I've got a few children that sound

00:14:39.940 --> 00:14:41.779
very similar to Autumn in my class actually I

00:14:41.779 --> 00:14:43.860
think she'd fit in really well and yeah for a

00:14:43.860 --> 00:14:46.159
few of them it was almost like a time pressure

00:14:46.159 --> 00:14:48.340
to get them walking get them in their walking

00:14:48.340 --> 00:14:50.820
frames you know build up those that muscle tone

00:14:50.820 --> 00:14:53.120
because if they get heavy then they're going

00:14:53.120 --> 00:14:55.779
to find it more difficult it's kind of what we

00:14:55.779 --> 00:14:58.779
were finding so yeah time I would say time is

00:14:58.779 --> 00:15:01.279
of the essence if it's going to happen you know

00:15:01.279 --> 00:15:04.179
you want to get their muscles as strong as they

00:15:04.179 --> 00:15:07.259
can be and and keep that motivation for them

00:15:07.259 --> 00:15:10.679
if they are seeming passive already you know

00:15:10.679 --> 00:15:12.500
things are being given to them you kind of want

00:15:12.500 --> 00:15:15.220
to get that motivation of getting it yourself

00:15:15.220 --> 00:15:17.519
and learning you know the benefits of that i

00:15:17.519 --> 00:15:19.779
suppose and yeah we've had a few successes we've

00:15:19.779 --> 00:15:21.679
had two that have learned to walk in my class

00:15:21.679 --> 00:15:23.840
and one that never got there but he just got

00:15:23.840 --> 00:15:27.519
too big too heavy and just found it far too difficult

00:15:27.519 --> 00:15:30.779
to build that muscles in enough time i guess

00:15:31.360 --> 00:15:33.419
I've never thought of it like that, I have to

00:15:33.419 --> 00:15:35.159
admit. And that's really interesting what you're

00:15:35.159 --> 00:15:37.720
saying. I think there was this strange internal

00:15:37.720 --> 00:15:40.620
drive from us, like that we just have to get

00:15:40.620 --> 00:15:43.940
her up on her feet. And we just kept, you know,

00:15:43.940 --> 00:15:45.639
working on it and working on it and working on

00:15:45.639 --> 00:15:48.200
it. Because of COVID, we had kind of more time

00:15:48.200 --> 00:15:50.639
like at home, like we had that space to do that.

00:15:50.700 --> 00:15:54.019
So we were able to do that. But we weren't really

00:15:54.019 --> 00:15:56.220
guided with that. And it was only when I saw

00:15:56.220 --> 00:15:59.460
other children with the frames that I thought,

00:15:59.480 --> 00:16:01.519
oh, I... think that could be helpful for Autumn

00:16:01.519 --> 00:16:04.940
and it was it was the key it like unlocked that

00:16:04.940 --> 00:16:08.120
if I'm up on my feet that helps you know me to

00:16:08.120 --> 00:16:11.039
get around and she didn't realize that until

00:16:11.039 --> 00:16:13.620
it was actually happening for her with that extra

00:16:13.620 --> 00:16:16.919
support so I suppose like you said right at the

00:16:16.919 --> 00:16:19.379
beginning like she doesn't actually learn these

00:16:19.379 --> 00:16:21.419
things we have to show her so by showing her

00:16:22.519 --> 00:16:25.100
how accessible walking is and how she can get

00:16:25.100 --> 00:16:26.720
what she wants when she wants and go where to

00:16:26.720 --> 00:16:29.340
where she wants that's the motivator isn't it

00:16:29.340 --> 00:16:31.460
and then she's got to just work on those muscles

00:16:31.460 --> 00:16:33.440
coordination skills gross motor skills to kind

00:16:33.440 --> 00:16:37.139
of get that yeah working how she yeah I think

00:16:37.139 --> 00:16:39.440
that's the biggest the biggest thing that we

00:16:39.440 --> 00:16:41.480
found well one of the biggest things there's

00:16:41.480 --> 00:16:43.399
lots of big things but one of the biggest things

00:16:43.399 --> 00:16:46.210
that we found is that you know she lacks that

00:16:46.210 --> 00:16:48.830
she has not very many things that motivate her

00:16:48.830 --> 00:16:52.129
and so like we have to be the most you know motivating

00:16:52.129 --> 00:16:54.929
for her a lot of the time and that's really tough

00:16:54.929 --> 00:16:59.190
going um and and yeah you know as part of the

00:16:59.190 --> 00:17:03.850
of being her parent is you know helping her to

00:17:03.850 --> 00:17:07.670
know what's you know good for her and know what

00:17:07.960 --> 00:17:10.119
what's helpful for her but that's not easy either

00:17:10.119 --> 00:17:12.480
like it's not easy to know when is that enough

00:17:12.480 --> 00:17:15.980
screen time or um you know she really loves rocking

00:17:15.980 --> 00:17:20.700
as a self -stimming behavior and that's really

00:17:20.700 --> 00:17:23.279
hard to know when that's too much and we have

00:17:23.279 --> 00:17:26.539
to kind of you know help motivate her to do things

00:17:26.539 --> 00:17:29.700
that other things um and engage her into other

00:17:29.700 --> 00:17:31.619
things that she doesn't have that motivation

00:17:31.619 --> 00:17:36.500
or drive to kind of explore yeah i see that too

00:17:36.500 --> 00:17:39.670
kind of getting I hate the word using lost, but

00:17:39.670 --> 00:17:42.509
lost in their stim. That's what it feels like

00:17:42.509 --> 00:17:45.289
from the outside. It's hard to connect with a

00:17:45.289 --> 00:17:49.589
child that is stuck always in their, I mean,

00:17:49.609 --> 00:17:50.769
I'm doing this because that's what I'm seeing

00:17:50.769 --> 00:17:53.690
at school, but that rocking or stimming. It's

00:17:53.690 --> 00:17:56.150
hard to build a connection. And we, as parents

00:17:56.150 --> 00:17:58.490
and teachers and people that love these children

00:17:58.490 --> 00:18:01.109
so much, all we desperately want to do is build

00:18:01.109 --> 00:18:03.829
connection with them and kind of join them in

00:18:03.829 --> 00:18:07.009
their world or get them to join us in some way,

00:18:07.029 --> 00:18:10.839
kind of. build a bridge almost between the two

00:18:10.839 --> 00:18:13.680
and build that connection and I can see yeah

00:18:13.680 --> 00:18:16.539
I can totally see why you would want to monitor

00:18:16.539 --> 00:18:20.359
that and just like give her opportunities to

00:18:20.359 --> 00:18:23.140
access other things and other enjoyed activities

00:18:23.140 --> 00:18:27.519
that are alongside us because we want her to

00:18:27.519 --> 00:18:30.400
we want to enjoy her and have that connection

00:18:30.400 --> 00:18:34.500
but also we want to show them how enjoyable social

00:18:34.500 --> 00:18:38.990
interactions can be as well yeah I guess it comes

00:18:38.990 --> 00:18:42.690
from a kind of comes from us what we need and

00:18:42.690 --> 00:18:45.609
what we want but actually it is beneficial for

00:18:45.609 --> 00:18:49.109
all ultimately and I love using intensive interaction

00:18:49.109 --> 00:18:52.269
in that way kind of joining their world stimming

00:18:52.269 --> 00:18:54.809
alongside them and you kind of build a natural

00:18:54.809 --> 00:18:57.650
curiosity they're inquisitive as to why you're

00:18:57.650 --> 00:19:00.519
doing what they're doing and you kind of use

00:19:00.519 --> 00:19:02.880
their own language in a way to communicate it's

00:19:02.880 --> 00:19:06.819
really really rather beautiful um i've never

00:19:06.819 --> 00:19:09.559
thought about joy i love intensive interaction

00:19:09.559 --> 00:19:13.059
and kind of apply it i guess in a way but it's

00:19:13.059 --> 00:19:15.180
funny what you're saying about joining the stim

00:19:15.180 --> 00:19:18.619
because that's what river did once and i thought

00:19:18.619 --> 00:19:20.720
it was it was this really strange it's kind of

00:19:20.720 --> 00:19:22.660
funny that you're doing it but it was also it

00:19:22.660 --> 00:19:25.529
felt really hard to see because basically Autumn

00:19:25.529 --> 00:19:28.990
was rocking on her bed and River joined her and

00:19:28.990 --> 00:19:31.670
was rocking alongside with her laughing and smiling

00:19:31.670 --> 00:19:34.170
and thinking it was really funny. And it was

00:19:34.170 --> 00:19:39.440
this really peculiar mix of emotion. But it just,

00:19:39.480 --> 00:19:41.200
as you were talking about that, it just reminded

00:19:41.200 --> 00:19:45.180
me of that moment where she was essentially connecting

00:19:45.180 --> 00:19:49.480
with her by joining her stemming. Yeah, I mean,

00:19:49.480 --> 00:19:51.319
it can be seen in two ways, can't it? I mean,

00:19:51.319 --> 00:19:53.460
it depends on the intent behind it. We don't

00:19:53.460 --> 00:19:56.220
want to mock our children or mimic our children,

00:19:56.339 --> 00:19:58.859
but we can echo their language back to them.

00:19:59.000 --> 00:20:02.099
You know, if our intent is to connect and speak

00:20:02.099 --> 00:20:04.740
their language and take away all of those huge,

00:20:04.819 --> 00:20:08.779
scary barriers of language and... a world that

00:20:08.779 --> 00:20:11.759
we don't understand away and come back to something

00:20:11.759 --> 00:20:13.799
that they're actually an expert in you know she's

00:20:13.799 --> 00:20:15.839
an expert in rocking and getting that feedback

00:20:15.839 --> 00:20:18.960
so we can allow her to show us the joy in that

00:20:18.960 --> 00:20:21.079
and genuine joy you know we're not just doing

00:20:21.079 --> 00:20:24.279
it as a token gesture we're really working hard

00:20:24.279 --> 00:20:26.200
to try and find you know what is it that she's

00:20:26.200 --> 00:20:28.700
like is it the movement is it the balance in

00:20:28.700 --> 00:20:31.400
the inner ear is it that the visual changes you

00:20:31.400 --> 00:20:33.180
know what is she enjoying about this and really

00:20:33.180 --> 00:20:37.079
trying to understand her world and meet her where

00:20:37.079 --> 00:20:40.579
she's at using her language and that's how she

00:20:40.579 --> 00:20:45.279
enjoys the world and then she might be less or

00:20:45.279 --> 00:20:48.819
more trusting to then try our world a little

00:20:48.819 --> 00:20:50.859
bit and our language and our way of seeing the

00:20:50.859 --> 00:20:52.819
world it's just really beautiful and they really

00:20:52.819 --> 00:20:55.539
are in charge and oh gosh it's the most affirming

00:20:55.539 --> 00:20:58.140
practice in my view just because they are absolutely

00:20:58.140 --> 00:21:01.200
in charge of it and they're the experts and actually

00:21:01.200 --> 00:21:02.920
some of their stims are really hard to do or

00:21:02.920 --> 00:21:05.380
some of their mouth you know vocalizations are

00:21:05.380 --> 00:21:09.319
really hard to do yeah it puts us in the shoes

00:21:09.319 --> 00:21:12.680
of being the learner and I don't know it's just

00:21:12.680 --> 00:21:14.980
it's just really beautiful I think it's so wonderful

00:21:14.980 --> 00:21:19.180
that River just knew what to do and I do I just

00:21:19.180 --> 00:21:22.240
think siblings are just so in tune aren't they

00:21:22.240 --> 00:21:24.539
I just think children are in general just so

00:21:24.539 --> 00:21:28.900
in tune with what they need to do it's i'm learning

00:21:28.900 --> 00:21:32.099
so much from river actually in her response to

00:21:32.099 --> 00:21:35.779
autumn because you know nothing phases her she's

00:21:35.779 --> 00:21:38.299
you know she's living in the moment with this

00:21:38.299 --> 00:21:40.940
and as you say like joining her world connecting

00:21:40.940 --> 00:21:43.000
you're still trying to connect with her in different

00:21:43.000 --> 00:21:45.259
ways and sometimes it doesn't work you know like

00:21:45.259 --> 00:21:48.079
she tries to hand her something or tries to say

00:21:48.079 --> 00:21:51.440
oh look look 40 40 she calls her but i'm learning

00:21:51.440 --> 00:21:54.599
like you know that it can be as simple as that

00:21:54.599 --> 00:21:58.920
and i think sometimes my emotions around the

00:21:58.920 --> 00:22:02.319
grief and the loss of what we didn't have complicate

00:22:02.319 --> 00:22:06.079
what are just simple kind of beautiful moments

00:22:06.079 --> 00:22:09.980
of connection so I am learning from from her

00:22:09.980 --> 00:22:12.319
actually they work in parallel though don't they

00:22:12.319 --> 00:22:16.220
you can be so in love with the child that you

00:22:16.220 --> 00:22:19.579
have and still grieving and still coming to terms

00:22:19.579 --> 00:22:22.299
with and accepting the child that you have it

00:22:22.299 --> 00:22:26.480
isn't one or the other It very much is completely

00:22:26.480 --> 00:22:30.700
in tandem together. You can celebrate the amazing

00:22:30.700 --> 00:22:35.099
steps that she is making. And whilst also feeling

00:22:35.099 --> 00:22:39.740
so much joy and pride is so much pain and grief

00:22:39.740 --> 00:22:43.359
as to it shouldn't be this big a deal. Right?

00:22:43.720 --> 00:22:46.920
Yeah. Are you right talking about that a little

00:22:46.920 --> 00:22:50.400
bit as to like how you navigate that? Because

00:22:50.400 --> 00:22:52.440
I'm really interested to hear it from a parent's

00:22:52.440 --> 00:22:55.440
perspective. But also with your background of

00:22:55.440 --> 00:22:58.319
everything you understand about how the brain

00:22:58.319 --> 00:23:03.700
works. I'm interested to see how you're navigating

00:23:03.700 --> 00:23:07.299
that because I can imagine you've got a parent

00:23:07.299 --> 00:23:10.359
side of your brain and heart and then a professional

00:23:10.359 --> 00:23:11.859
side of your brain and heart. And I can imagine

00:23:11.859 --> 00:23:14.880
they're probably a little bit in fight mode a

00:23:14.880 --> 00:23:17.799
little bit sometimes. Yeah. So how is navigating

00:23:17.799 --> 00:23:21.519
that journey for you? Like the grief journey,

00:23:21.599 --> 00:23:24.779
you mean? The grief, the processing, acceptance.

00:23:25.500 --> 00:23:28.319
Yeah, all of that. All of that, I suppose. I

00:23:28.319 --> 00:23:30.720
think being a clinical psychologist has given

00:23:30.720 --> 00:23:34.339
me a head start, if I'm honest. I think I'm so

00:23:34.339 --> 00:23:38.819
glad about that because I had knowledge. But

00:23:38.819 --> 00:23:42.640
knowledge is just such a small step. You can

00:23:42.640 --> 00:23:45.359
know something, but until you live it and breathe

00:23:45.359 --> 00:23:48.000
it and experience it, you kind of actually really

00:23:48.000 --> 00:23:52.849
know. But it definitely has helped having that

00:23:52.849 --> 00:23:57.049
basis and understanding around emotions and what

00:23:57.049 --> 00:24:00.269
emotions are and what they do. And I think for

00:24:00.269 --> 00:24:04.569
me, it's meant that I've embraced all of it as

00:24:04.569 --> 00:24:07.970
much as I can. I think what has made that difficult

00:24:07.970 --> 00:24:11.210
to do is that there's also the pressure that

00:24:11.210 --> 00:24:15.349
I put myself under to learn it all, figure it

00:24:15.349 --> 00:24:19.269
all out. get all the answers, you know, become

00:24:19.269 --> 00:24:21.670
a physiotherapist, a speech and language therapist,

00:24:21.710 --> 00:24:24.450
an occupational therapist, understand the legal

00:24:24.450 --> 00:24:28.130
system. A nurse, a social worker, we've got a

00:24:28.130 --> 00:24:30.809
bow and bladder team, we could go on. Yeah, you've

00:24:30.809 --> 00:24:33.029
got to be everybody, haven't you? Yeah, and I

00:24:33.029 --> 00:24:35.930
did it all too much too soon, that's for sure.

00:24:36.009 --> 00:24:38.470
So I made my kind of mistakes that, you know,

00:24:38.490 --> 00:24:41.269
maybe I had to make them to know that they were

00:24:41.269 --> 00:24:44.039
mistakes. Mistakes because it led to burnout?

00:24:44.380 --> 00:24:46.799
Yeah, exactly. Yeah, it's just overwhelming.

00:24:46.839 --> 00:24:50.720
I overwhelmed myself with the product. like being

00:24:50.720 --> 00:24:53.220
productive around this like here's a problem

00:24:53.220 --> 00:24:56.799
as in the genetic condition and it causes so

00:24:56.799 --> 00:25:00.160
many struggles it causes you know struggles as

00:25:00.160 --> 00:25:02.920
a family but you know all for autumn being dysregulated

00:25:02.920 --> 00:25:05.519
a lot of the time and distressed a lot of the

00:25:05.519 --> 00:25:08.619
time and here are all these possible solutions

00:25:08.619 --> 00:25:11.720
that i need to find out about because no one

00:25:11.720 --> 00:25:14.640
at once yeah all at once Because no one's going

00:25:14.640 --> 00:25:16.940
to give me the book. I have to figure it out

00:25:16.940 --> 00:25:21.359
myself. There's no guide. So, you know, and being

00:25:21.359 --> 00:25:24.720
the parent that was able to reduce my work hours,

00:25:25.019 --> 00:25:29.440
my husband being the one to, you know, work full

00:25:29.440 --> 00:25:32.339
time, it then landed on me that I would be the

00:25:32.339 --> 00:25:34.519
one to kind of have to do all of that research.

00:25:34.700 --> 00:25:38.359
Yeah, so you replaced that, I suppose, that work

00:25:38.359 --> 00:25:41.430
time with this was now your. yeah yeah no exactly

00:25:41.430 --> 00:25:44.650
I definitely can see what exactly what you're

00:25:44.650 --> 00:25:46.609
saying in other parents that I have spoken to

00:25:46.609 --> 00:25:49.650
usually early on they don't know if it comes

00:25:49.650 --> 00:25:52.349
from a need to like control just this like complete

00:25:52.349 --> 00:25:55.509
shock of an upside down world that they've like

00:25:55.509 --> 00:25:57.410
was imagining and then all of a sudden they're

00:25:57.410 --> 00:25:59.390
not anymore and of course you're going to want

00:25:59.390 --> 00:26:01.990
to kind of gain control and support as best you

00:26:01.990 --> 00:26:04.369
can and always take responsibility for that a

00:26:04.369 --> 00:26:06.809
little bit like it's kind of like a maybe it

00:26:06.809 --> 00:26:10.859
comes from I don't know that kind of parent like

00:26:10.859 --> 00:26:13.039
parent guilt i guess i mean all parents will

00:26:13.039 --> 00:26:14.940
guilt but i think that's kind of and they're

00:26:14.940 --> 00:26:18.480
trying to like well i can fix it then but yeah

00:26:18.480 --> 00:26:20.880
i think it's right you are trying to problem

00:26:20.880 --> 00:26:23.759
solve fix that is and i knew that that's kind

00:26:23.759 --> 00:26:25.960
of you know that's what the brains do they are

00:26:25.960 --> 00:26:27.960
problem solving machines they want to figure

00:26:27.960 --> 00:26:31.299
it out and and and fix all these different problems

00:26:31.299 --> 00:26:33.960
that this condition has kind of led to and created

00:26:33.960 --> 00:26:39.819
um Yeah, it was very much just go, go, go, do,

00:26:39.940 --> 00:26:43.400
do, do with all of that. However, if someone

00:26:43.400 --> 00:26:45.940
came along and said, look, I'll do that for you,

00:26:46.059 --> 00:26:48.779
I would have been like, great. It doesn't happen,

00:26:48.859 --> 00:26:52.779
does it? It doesn't happen. And I suppose it's

00:26:52.779 --> 00:26:54.539
only because of that that you were motivated

00:26:54.539 --> 00:26:56.599
to get her to walk. It's only because of that

00:26:56.599 --> 00:26:58.240
you were motivated enough maybe to research,

00:26:58.339 --> 00:27:00.740
you know, the why's and the how's and get her

00:27:00.740 --> 00:27:03.599
to doing it. So it's an amazing thing that you've

00:27:03.599 --> 00:27:06.680
done. But it leads to burnout and ultimately

00:27:06.680 --> 00:27:09.740
you not being able to just be the parent. No,

00:27:09.759 --> 00:27:11.599
exactly. Because if you've got all these hats

00:27:11.599 --> 00:27:14.819
on as well, you can't just be what she genuinely

00:27:14.819 --> 00:27:19.200
probably needs you to be most is mum. Exactly.

00:27:19.299 --> 00:27:22.279
And on top of that, it doesn't give you the space

00:27:22.279 --> 00:27:26.180
to grieve. And that's, I guess, where I'm sort

00:27:26.180 --> 00:27:28.819
of saying at the start is that I kind of had

00:27:28.819 --> 00:27:31.960
this understanding and knowing about... how important

00:27:31.960 --> 00:27:34.259
it is to just embrace whatever kind of comes

00:27:34.259 --> 00:27:37.180
up in terms of the grief, all the feelings, the

00:27:37.180 --> 00:27:39.460
ugly feelings, you know, the good feelings, all

00:27:39.460 --> 00:27:42.099
of the feelings. I just didn't have capacity.

00:27:42.339 --> 00:27:46.019
There was nothing left of me to be able to do

00:27:46.019 --> 00:27:50.119
that. Do you think you kept so busy? Do you think

00:27:50.119 --> 00:27:54.180
it was avoidance in a way? I mean, I think, interestingly,

00:27:54.539 --> 00:27:57.359
I don't think it's a conscious process. Yeah,

00:27:57.380 --> 00:28:00.920
of course. Because I knew that that's not...

00:28:00.960 --> 00:28:03.799
a good way right that's what I mean like your

00:28:03.799 --> 00:28:07.220
your business brain of course would see that

00:28:07.220 --> 00:28:10.460
but ultimately like your body's in survival mode

00:28:10.460 --> 00:28:13.599
probably I think the avoidance is actually a

00:28:13.599 --> 00:28:16.019
good thing in lots of ways I think that's kind

00:28:16.019 --> 00:28:18.519
of protects you well I think because when it's

00:28:18.519 --> 00:28:23.500
too much you can only only face so much and so

00:28:23.500 --> 00:28:27.119
the avoidance is kind of needed the focus on

00:28:27.119 --> 00:28:30.440
productivity get things done is needed at that

00:28:30.440 --> 00:28:34.559
time and on the other side it's it can get too

00:28:34.559 --> 00:28:37.859
much as well and also the the space to grieve

00:28:37.859 --> 00:28:40.980
I think it's just so unique to every person like

00:28:40.980 --> 00:28:43.700
for me there is just a path that I had to go

00:28:43.700 --> 00:28:46.859
on that I couldn't really do a lot of that grieving

00:28:46.859 --> 00:28:49.980
to begin with and it's just had to kind of come

00:28:49.980 --> 00:28:53.150
later and I've had to sort of wait So even when

00:28:53.150 --> 00:28:55.150
I did kind of have these moments where I could

00:28:55.150 --> 00:28:57.950
just sit there and cry, like nothing was kind

00:28:57.950 --> 00:29:00.529
of coming out. I could feel the block. I could

00:29:00.529 --> 00:29:03.950
feel that my body wasn't able to just kind of

00:29:03.950 --> 00:29:06.109
go there. And I just had to wait and I had to

00:29:06.109 --> 00:29:08.910
be patient. And, you know, it's more able to

00:29:08.910 --> 00:29:11.990
release when I get the opportunity. But, you

00:29:11.990 --> 00:29:13.849
know, I think I just had to be patient with that

00:29:13.849 --> 00:29:16.349
as well. It's not like. case of you can just

00:29:16.349 --> 00:29:18.529
tell yourself to grieve just turn the tap on

00:29:18.529 --> 00:29:22.250
yeah I knew the emotions were there I knew like

00:29:22.250 --> 00:29:25.069
I felt deeply about this but I couldn't just

00:29:25.069 --> 00:29:28.309
let it out as straightforward as that it's so

00:29:28.309 --> 00:29:30.910
complicated this of course our bodies are so

00:29:30.910 --> 00:29:34.230
complicated aren't they as well so when you're

00:29:34.230 --> 00:29:36.529
saying for parents to accept it it's accepting

00:29:36.529 --> 00:29:38.470
whatever comes up but also accepting whatever

00:29:38.470 --> 00:29:41.769
isn't ready to come up yeah yeah I think so I

00:29:41.769 --> 00:29:46.000
think so yeah And accepting being a complicated

00:29:46.000 --> 00:29:48.359
word as well, because what do we actually mean

00:29:48.359 --> 00:29:51.960
by acceptance? I suppose it's just like letting

00:29:51.960 --> 00:29:55.759
it flow as it is, I guess, like if it is or isn't.

00:29:56.160 --> 00:29:58.980
I think, yeah. I suppose maybe trusting that

00:29:58.980 --> 00:30:01.299
what you're doing, what your gut is telling you

00:30:01.299 --> 00:30:03.920
to do is probably what your body needs for the

00:30:03.920 --> 00:30:07.539
most part, maybe. I would say like listening

00:30:07.539 --> 00:30:10.680
to your body is often better than listening to

00:30:10.680 --> 00:30:14.180
your mind. Right. Because my mind was just like,

00:30:14.220 --> 00:30:16.920
get the answers, figure everything out. And my

00:30:16.920 --> 00:30:20.200
body was saying, you can't do it all. And you're

00:30:20.200 --> 00:30:23.480
tired and you're exhausted. And let's just, you

00:30:23.480 --> 00:30:26.740
know, be more patient. So I think, yeah, listening

00:30:26.740 --> 00:30:29.720
to your body is part of that acceptance, really.

00:30:29.980 --> 00:30:33.119
And yeah, but I think that's right. The acceptance

00:30:33.119 --> 00:30:35.819
is just accepting numbness, actually, sometimes.

00:30:36.200 --> 00:30:39.000
Right. And that's part of grief. Yeah, exactly.

00:30:39.000 --> 00:30:43.069
If you look up grief, it's not all. crying it

00:30:43.069 --> 00:30:46.549
very much is you know it goes through a whole

00:30:46.549 --> 00:30:50.690
world of emotions and feelings and numbness is

00:30:50.690 --> 00:30:54.730
often part of it yeah and it can happen in any

00:30:54.730 --> 00:30:58.109
order in any amount of intensity for all different

00:30:58.109 --> 00:31:05.509
types of people yeah yeah alongside joy and memories

00:31:05.509 --> 00:31:09.529
and it's all this complicated non -black and

00:31:09.529 --> 00:31:13.619
white non -linear thing isn't it totally totally

00:31:13.619 --> 00:31:20.099
so that's burnout but what about recovering from

00:31:20.099 --> 00:31:23.440
burnout and then whilst also trying to fight

00:31:23.440 --> 00:31:26.500
for her needs meet her needs learn everything

00:31:26.500 --> 00:31:28.720
you can to support her you know it's it's that

00:31:28.720 --> 00:31:34.799
as well isn't it yeah well I it's really um I

00:31:34.799 --> 00:31:37.839
don't know if it's um ironic or um if it's a

00:31:37.839 --> 00:31:41.569
good thing but um kind of burnout is a big part

00:31:41.569 --> 00:31:44.750
of my work with with staff so it's staff burnout

00:31:44.750 --> 00:31:48.269
so again I have a little bit of kind of experience

00:31:48.269 --> 00:31:52.650
there um however again it's just because you

00:31:52.650 --> 00:31:54.970
know something doesn't mean that you can get

00:31:54.970 --> 00:31:57.369
it you know figure it all out it's so burnout

00:31:57.369 --> 00:32:00.630
recovery is just so complicated and I think it's

00:32:00.630 --> 00:32:03.990
it just it's a big time thing it's it's it's

00:32:03.990 --> 00:32:05.829
not this is where it's different from stress

00:32:05.829 --> 00:32:10.259
because stress you can kind of go on a spa day

00:32:10.259 --> 00:32:12.940
you can go for a weekend away and you can come

00:32:12.940 --> 00:32:15.500
back and you can feel refreshed that doesn't

00:32:15.500 --> 00:32:19.579
happen with burnout recovery not to say don't

00:32:19.579 --> 00:32:24.339
do that but it it's it's takes time it takes

00:32:24.339 --> 00:32:28.960
lots of those micro moments of of self -care

00:32:28.960 --> 00:32:33.359
of um you know figuring out what your body needs

00:32:33.359 --> 00:32:37.940
to recover and yeah it's not uh it's not quick

00:32:37.940 --> 00:32:40.420
fixes like you can get from when you're stressed

00:32:40.420 --> 00:32:42.220
out when you get stressed out you have a good

00:32:42.220 --> 00:32:44.619
night's sleep you can wake up you can feel refreshed

00:32:44.619 --> 00:32:47.599
you can feel ready to go for the day with burnout

00:32:47.599 --> 00:32:49.799
you can have a really great sleep and you can

00:32:49.799 --> 00:32:53.460
wake up absolutely exhausted And, you know, that

00:32:53.460 --> 00:32:55.960
is a really big difference between the two. So

00:32:55.960 --> 00:32:58.519
that means that what we do with burnout and how

00:32:58.519 --> 00:33:02.740
you recover from it is much more about those

00:33:02.740 --> 00:33:06.339
micro moments of how you treat yourself, how

00:33:06.339 --> 00:33:08.240
you treat your body, things that are going to

00:33:08.240 --> 00:33:13.380
help you to, you know, to get to find some ease

00:33:13.380 --> 00:33:16.980
in the day. You know, whether like you say, because

00:33:16.980 --> 00:33:20.410
the cause of burnout has been. from doing too

00:33:20.410 --> 00:33:23.089
much then it's not like you've escaped it you

00:33:23.089 --> 00:33:25.309
know this is a situation that you haven't left

00:33:25.309 --> 00:33:27.930
or it hasn't ended you're still in it that's

00:33:27.930 --> 00:33:29.910
what I was just thinking with work you might

00:33:29.910 --> 00:33:32.230
make a change change your job change your role

00:33:32.230 --> 00:33:36.150
change your hours that doesn't that option isn't

00:33:36.150 --> 00:33:40.289
there for parents often no And so I think part

00:33:40.289 --> 00:33:43.650
of that is, yeah, that kind of boundaries with

00:33:43.650 --> 00:33:47.309
myself really about, you know, what's the negotiables,

00:33:47.349 --> 00:33:51.170
what's the non -negotiables, what can I let go

00:33:51.170 --> 00:33:56.109
of? And maybe, yeah, a big part of it has been

00:33:56.109 --> 00:34:00.529
letting go of, like, I can't fix this genetic

00:34:00.529 --> 00:34:03.910
condition. And yes, therapies can be helpful,

00:34:04.029 --> 00:34:07.690
but... it's it's not about just doing more to

00:34:07.690 --> 00:34:10.309
her it's not about like more strategies more

00:34:10.309 --> 00:34:13.789
you know more of this more of that a big part

00:34:13.789 --> 00:34:17.429
of it is just going you know with her flow and

00:34:17.429 --> 00:34:20.030
you know learning from her rather than trying

00:34:20.030 --> 00:34:25.130
to do more and do more to her so it's kind of

00:34:25.130 --> 00:34:28.210
stripping things back actually and then you know

00:34:28.210 --> 00:34:31.010
finding the things that you know the basic things

00:34:31.010 --> 00:34:33.960
that are going to help her stay today as well

00:34:33.960 --> 00:34:36.440
as kind of things that are going to help me help

00:34:36.440 --> 00:34:39.199
my nervous system and I'm still learning it's

00:34:39.199 --> 00:34:41.019
not like I've got it figured out and I've got

00:34:41.019 --> 00:34:43.039
I've worked out exactly what I need and what

00:34:43.039 --> 00:34:45.760
that's the point isn't it I mean for any parent

00:34:45.760 --> 00:34:49.460
listening to this you know you don't have it

00:34:49.460 --> 00:34:53.960
found out and you and of everybody you know If

00:34:53.960 --> 00:34:56.219
anyone would, you would. And it's quite nice

00:34:56.219 --> 00:34:59.380
to hear you say that, I think. It's quite validating,

00:34:59.380 --> 00:35:01.480
I'm sure, to parents of, you know, you're still

00:35:01.480 --> 00:35:03.519
working it out. And that's absolutely okay if

00:35:03.519 --> 00:35:06.840
everyone listening is too. Because also, as she

00:35:06.840 --> 00:35:09.260
gets older, there's new things to figure out.

00:35:10.099 --> 00:35:14.039
In my class, there's age four to age 11. And

00:35:14.039 --> 00:35:15.920
the parents of the four -year -olds are going

00:35:15.920 --> 00:35:17.659
through very different things as the parents

00:35:17.659 --> 00:35:21.400
of 10 and 11 -year -olds. you know it's the same

00:35:21.400 --> 00:35:24.239
level of things it's just different you know

00:35:24.239 --> 00:35:28.139
yeah it kind of is this continual learning and

00:35:28.139 --> 00:35:32.139
navigating this world I guess as they're changing

00:35:32.139 --> 00:35:34.480
and developmenting and as you're changing and

00:35:34.480 --> 00:35:36.340
the world is changing and developmenting and

00:35:36.340 --> 00:35:39.980
it's all it's it's constant learning and adapting

00:35:39.980 --> 00:35:42.940
and choosing and being selective I guess like

00:35:42.940 --> 00:35:45.179
you say of what you're bringing in yes it might

00:35:45.179 --> 00:35:47.900
all be amazing we need AAC we need walkers we

00:35:47.900 --> 00:35:50.170
need this we need this especially with social

00:35:50.170 --> 00:35:51.849
media we're constantly bombarded with all the

00:35:51.849 --> 00:35:54.489
things we could be doing yeah and I think that

00:35:54.489 --> 00:35:57.329
can be a beautiful thing because we're getting

00:35:57.329 --> 00:35:59.809
access to all these professionals that we wouldn't

00:35:59.809 --> 00:36:02.670
normally get access to as easily in our pocket

00:36:02.670 --> 00:36:04.889
all the time but it can be dangerous in that

00:36:04.889 --> 00:36:08.210
we end up not committing to anything properly

00:36:08.210 --> 00:36:12.369
we end up doing a little bit of everything and

00:36:12.369 --> 00:36:15.710
not actually thinking right what is our focus

00:36:16.940 --> 00:36:19.360
let's be consistent with this let's stick to

00:36:19.360 --> 00:36:22.460
this and and really work hard at it together

00:36:22.460 --> 00:36:26.039
I suppose might have more benefits than doing

00:36:26.039 --> 00:36:29.460
everything a little bit I agree and you know

00:36:29.460 --> 00:36:32.579
it would overwhelm her as well like if we did

00:36:32.579 --> 00:36:34.860
so much of those things and like we don't we

00:36:34.860 --> 00:36:37.400
don't want to spend our entire weekends like

00:36:37.400 --> 00:36:40.519
just doing therapy and you know going to therapy

00:36:40.519 --> 00:36:43.179
appointments and things like that which it's

00:36:43.179 --> 00:36:47.239
it's hard for her so yeah it's I think you know

00:36:47.239 --> 00:36:49.860
that's a balance that's a learning curve to figure

00:36:49.860 --> 00:36:52.760
that out like when is it too much when is you

00:36:52.760 --> 00:36:56.550
know when is it needed and yeah I think It is

00:36:56.550 --> 00:36:59.349
really helpful to have permission to strip it

00:36:59.349 --> 00:37:03.309
back and just do simple things, simple strategies,

00:37:03.449 --> 00:37:06.070
things that you're going to remember rather than

00:37:06.070 --> 00:37:08.670
things that are too complicated. Like, you know,

00:37:08.670 --> 00:37:11.510
we've got a behaviour plan with so many things

00:37:11.510 --> 00:37:14.449
listed on it and I can't remember it all. I can't

00:37:14.449 --> 00:37:18.090
keep it all in mind. So I've just taken out five

00:37:18.090 --> 00:37:20.510
bullet points, stuck them on my wall and I still

00:37:20.510 --> 00:37:22.929
forget the five bullet points. that's a really

00:37:22.929 --> 00:37:25.369
great point that's such a great point because

00:37:25.369 --> 00:37:28.110
if it's not memorable for you then how is she

00:37:28.110 --> 00:37:30.989
gonna remember it or it's so inconsistent I mean

00:37:30.989 --> 00:37:32.690
that's great advice for parents and teachers

00:37:32.690 --> 00:37:35.070
I would say is the more simple the better and

00:37:35.070 --> 00:37:38.989
yes okay that list of things is maybe your long

00:37:38.989 --> 00:37:42.769
-term goal but maybe yeah like you say take a

00:37:42.769 --> 00:37:46.530
few and work on them you know in little bite

00:37:46.530 --> 00:37:49.659
-sized chunks until they are just habit and then

00:37:49.659 --> 00:37:51.559
move on to the next bit i suppose that's why

00:37:51.559 --> 00:37:55.360
we do ieps from ehcps because if you just worked

00:37:55.360 --> 00:37:57.300
from the whole ehcp god that's so overwhelming

00:37:57.300 --> 00:37:59.760
it's until they're 25 like that you know you

00:37:59.760 --> 00:38:01.500
couldn't work like that you couldn't work on

00:38:01.500 --> 00:38:03.000
all of the targets and all the points were at

00:38:03.000 --> 00:38:05.780
the time whereas just selecting those few ieps

00:38:05.780 --> 00:38:08.880
to work on each term is the little steps to get

00:38:08.880 --> 00:38:12.090
you to achieve those those big ones i suppose

00:38:12.090 --> 00:38:15.070
it's more realistic all around because then you

00:38:15.070 --> 00:38:17.829
know you can kind of work out what's worked as

00:38:17.829 --> 00:38:19.630
well whereas if you're doing loads of things

00:38:19.630 --> 00:38:22.690
all at once in a haphazard way and then you see

00:38:22.690 --> 00:38:25.469
some kind of progress or benefit like how do

00:38:25.469 --> 00:38:28.210
you know what it was that was helpful whereas

00:38:28.210 --> 00:38:30.030
if you're doing you're not focusing on for one

00:38:30.030 --> 00:38:31.989
week or a couple of weeks sometimes it's longer

00:38:31.989 --> 00:38:34.289
than that for us like we're just going to do

00:38:34.289 --> 00:38:37.909
this kind of one strategy um and we've noticed

00:38:37.909 --> 00:38:41.360
a benefit after that month then great keep using

00:38:41.360 --> 00:38:43.340
it if we're not really seeing any change let's

00:38:43.340 --> 00:38:46.159
just drop it because you know it's not helping

00:38:46.159 --> 00:38:48.579
anybody to keep it in mind let's try something

00:38:48.579 --> 00:38:51.500
different but you know you've given it a good

00:38:51.500 --> 00:38:54.300
go and it still hasn't worked yeah whereas I

00:38:54.300 --> 00:38:56.039
suppose if you were doing a couple other things

00:38:56.039 --> 00:38:59.019
as well who's to know and then you could be wasting

00:38:59.019 --> 00:39:00.579
your energy and time on things that actually

00:39:00.579 --> 00:39:03.179
just aren't appropriate yeah yeah and it's all

00:39:03.179 --> 00:39:06.630
just too much it's just It's just strategy, strategy,

00:39:06.769 --> 00:39:09.949
strategy. So that's a really good way if, like

00:39:09.949 --> 00:39:12.429
we said before, having all of these strategies

00:39:12.429 --> 00:39:14.590
and wanting to fix all of those things is giving

00:39:14.590 --> 00:39:17.289
you a sense of control. So pairing it back if

00:39:17.289 --> 00:39:19.610
you do it in that way. You know, parents can,

00:39:19.670 --> 00:39:21.710
yes, hear the team around the child. You might

00:39:21.710 --> 00:39:24.150
get 10 different reports of targets of things

00:39:24.150 --> 00:39:26.469
they need to do. And that in turn means there's

00:39:26.469 --> 00:39:29.510
100 targets to do. You know, as a parent, you

00:39:29.510 --> 00:39:32.639
can take control over that. yes they're the professional

00:39:32.639 --> 00:39:34.719
they're the team but actually you can pick one

00:39:34.719 --> 00:39:38.719
from each that you're going to work on the professionals

00:39:38.719 --> 00:39:42.659
just have to accept that they you know they cannot

00:39:42.659 --> 00:39:45.519
be priority at all the times and you're going

00:39:45.519 --> 00:39:47.199
to have to explain that to them you know you're

00:39:47.199 --> 00:39:48.880
going to have to advocate for your child and

00:39:48.880 --> 00:39:50.599
just remind professionals because i'm a professional

00:39:50.599 --> 00:39:53.260
too you know i often forget you know How much

00:39:53.260 --> 00:39:55.059
is going on for these families' lives? And I

00:39:55.059 --> 00:39:56.800
think my targets are the most important. Well,

00:39:56.820 --> 00:39:59.139
so does every other professional. And sometimes

00:39:59.139 --> 00:40:01.179
it is the parent's job to be the advocate and

00:40:01.179 --> 00:40:04.039
say, look, do you realise that we've got all

00:40:04.039 --> 00:40:06.360
of this? You almost sometimes show them the folder

00:40:06.360 --> 00:40:08.500
that you've got of all the targets. Actually,

00:40:08.539 --> 00:40:11.260
we're just going to work on medical care or we're

00:40:11.260 --> 00:40:13.659
just going to work on speech or we're just going

00:40:13.659 --> 00:40:17.719
to work on gross motor skills this month because

00:40:17.719 --> 00:40:20.039
we want to get it. right and if there's some

00:40:20.039 --> 00:40:21.960
overlap of things that can work at the same time

00:40:21.960 --> 00:40:24.440
great but actually sometimes just taking that

00:40:24.440 --> 00:40:27.539
control can make you feel or make the strategies

00:40:27.539 --> 00:40:29.699
actually more effective for a start make the

00:40:29.699 --> 00:40:31.599
child less overwhelmed and make you less overwhelmed

00:40:31.599 --> 00:40:33.880
so you've actually got energy to do it and see

00:40:33.880 --> 00:40:35.739
it through and be consistent with it remember

00:40:35.739 --> 00:40:38.519
to do it like you said you're so part of it there's

00:40:38.519 --> 00:40:39.900
no point having you can have the best targets

00:40:39.900 --> 00:40:41.460
in the world if you're not remembering what they

00:40:41.460 --> 00:40:44.360
are i mean there is not as useless as the paper

00:40:44.360 --> 00:40:47.710
they're written on No, I am so on board with

00:40:47.710 --> 00:40:51.309
this. And it just, it makes it seem so much more

00:40:51.309 --> 00:40:54.570
hopeful. And it's certainly what I've been working

00:40:54.570 --> 00:40:56.570
on. Yeah, that's true. Otherwise, you're always

00:40:56.570 --> 00:40:58.210
seeing what you're not doing or what you haven't

00:40:58.210 --> 00:41:02.610
achieved. Oh, yeah, exactly. Yeah. And I think

00:41:02.610 --> 00:41:07.349
as well, you as the parent can prioritise because

00:41:07.349 --> 00:41:10.170
you know for your family what's the most important

00:41:10.170 --> 00:41:14.099
need right now. And that's always quite glaringly

00:41:14.099 --> 00:41:16.380
obvious, I think, but it's not necessarily to

00:41:16.380 --> 00:41:19.800
all the other professionals involved. So I think

00:41:19.800 --> 00:41:22.659
to get that control, we all need control over

00:41:22.659 --> 00:41:26.000
our lives in different ways. If we can find that

00:41:26.000 --> 00:41:29.699
control to choose what's going to be best at

00:41:29.699 --> 00:41:32.820
the moment to focus on, I think that's a really

00:41:32.820 --> 00:41:35.280
good piece of advice. Because ultimately parents

00:41:35.280 --> 00:41:37.059
know their children best. These professionals

00:41:37.059 --> 00:41:40.369
are coming from one section of... the need that

00:41:40.369 --> 00:41:42.829
they have they don't they aren't the expert in

00:41:42.829 --> 00:41:45.909
your child and your family and your lifestyle

00:41:45.909 --> 00:41:48.269
and what you need and and that's where you come

00:41:48.269 --> 00:41:50.710
in that's where you know parents are the expert

00:41:50.710 --> 00:41:54.010
and that should be respected i think above anything

00:41:54.010 --> 00:41:56.610
else and and to trust your gut as well you know

00:41:56.610 --> 00:41:58.869
even if the professional is saying this is most

00:41:58.869 --> 00:42:00.849
important this is most important actually your

00:42:00.849 --> 00:42:04.449
gut probably knows what your child really is

00:42:04.449 --> 00:42:11.719
wanting absolutely Yeah. Are they, is it, I mean,

00:42:11.719 --> 00:42:13.579
it's all important. I suppose that's the tricky

00:42:13.579 --> 00:42:16.519
thing, isn't it? But is it more important that,

00:42:16.559 --> 00:42:18.539
you know, sometimes it comes back to down to

00:42:18.539 --> 00:42:21.400
the hierarchy of need, doesn't it? And ultimately

00:42:21.400 --> 00:42:26.619
children need to feel safe and fed and be able

00:42:26.619 --> 00:42:28.099
to regulate their temperature. You know, it comes

00:42:28.099 --> 00:42:30.480
down to basics and then you build in, are they

00:42:30.480 --> 00:42:32.059
scared all of the time? Okay, well, let's focus

00:42:32.059 --> 00:42:33.719
on that. You know, that comes before speech.

00:42:33.820 --> 00:42:36.119
That comes way before academic learning. I mean,

00:42:36.119 --> 00:42:38.320
God, academic learning is the last thing. behavior

00:42:38.320 --> 00:42:41.420
is the second to last thing yeah it has to be

00:42:41.420 --> 00:42:43.019
it's sometimes useful thinking of the pyramid

00:42:43.019 --> 00:42:45.519
of learning i don't know if you know it but um

00:42:45.519 --> 00:42:47.619
if you google the pyramid of learning you'll

00:42:47.619 --> 00:42:49.860
see the hierarchy and it really does start with

00:42:49.860 --> 00:42:54.219
basic like am i safe yes it's really you know

00:42:54.219 --> 00:42:55.619
what will make our child more safe well maybe

00:42:55.619 --> 00:42:57.400
that's the best target to start with because

00:42:57.400 --> 00:42:58.780
actually maybe everything else will fall into

00:42:58.780 --> 00:43:00.659
place maybe you'll all of a sudden see that a

00:43:00.659 --> 00:43:03.639
reduced you know in unsafe behaviors or maybe

00:43:03.639 --> 00:43:06.260
you'll see a reduction in dysregulation if ultimately

00:43:06.920 --> 00:43:10.199
they just feel seen and heard and safe so it

00:43:10.199 --> 00:43:12.079
really if you're a parent and just feel completely

00:43:12.079 --> 00:43:13.840
overwhelmed by all the targets then sometimes

00:43:13.840 --> 00:43:15.519
it's best to strip it back in that way and just

00:43:15.519 --> 00:43:17.880
think about that hierarchy of need that pyramid

00:43:17.880 --> 00:43:19.920
of learning and going there because i can assure

00:43:19.920 --> 00:43:23.420
you the academic targets yeah absolutely are

00:43:23.420 --> 00:43:26.739
the last thing like almost just ignore them and

00:43:26.739 --> 00:43:28.960
that's coming from the teacher and it's true

00:43:28.960 --> 00:43:31.840
for the parent as well the hierarchy of need

00:43:31.840 --> 00:43:36.019
because And it probably is a similar thing that

00:43:36.019 --> 00:43:38.460
you can then focus on. But yeah, if you focus

00:43:38.460 --> 00:43:40.800
on your hierarchy of need and go back to the

00:43:40.800 --> 00:43:43.179
base of what's going to make you safe and not

00:43:43.179 --> 00:43:45.360
just physically safe, it's like you said, it's

00:43:45.360 --> 00:43:49.360
emotionally safe too. Like what's the thing that

00:43:49.360 --> 00:43:52.559
would help you to feel emotionally safe that

00:43:52.559 --> 00:43:56.369
we can work on here? And I think if you ask every

00:43:56.369 --> 00:44:00.369
parent of a SEND child, the thing that will come

00:44:00.369 --> 00:44:03.510
up is overwhelm, feeling overwhelmed in some

00:44:03.510 --> 00:44:06.949
form or other. And so I think this idea to kind

00:44:06.949 --> 00:44:10.150
of strip things back, as you said, makes you

00:44:10.150 --> 00:44:12.889
feel more like you're in control, but also reduces

00:44:12.889 --> 00:44:15.449
that overwhelm that you can just kind of focus

00:44:15.449 --> 00:44:26.219
on one thing at a time. it needs for it to change

00:44:26.219 --> 00:44:29.699
whereas when you're overwhelmed it's like a scattergun

00:44:29.699 --> 00:44:31.760
of approaches then where you just do a bit of

00:44:31.760 --> 00:44:34.099
this here a bit of that there and that's not

00:44:34.099 --> 00:44:35.960
actually helpful either I think that's where

00:44:35.960 --> 00:44:38.079
burnout comes from because you're not you're

00:44:38.079 --> 00:44:41.000
not getting that dopamine hit of it being successful

00:44:41.000 --> 00:44:44.199
you're just seeing this huge wall in front of

00:44:44.199 --> 00:44:46.280
you of things that are totally unachievable they're

00:44:46.280 --> 00:44:48.400
not smart targets they're not measured in fact

00:44:48.400 --> 00:44:50.920
the targets just keep getting further and further

00:44:50.920 --> 00:44:53.079
away because you just keep adding more and more

00:44:53.079 --> 00:44:55.380
to it which ultimately leads to burnout doesn't

00:44:55.380 --> 00:44:57.579
it whereas if you are taking control of it and

00:44:57.579 --> 00:44:59.699
saying no i'm going to focus on this one target

00:44:59.699 --> 00:45:03.179
then it's achievable you get that dopamine hit

00:45:03.179 --> 00:45:05.440
of success and feeling like you're doing something

00:45:05.440 --> 00:45:08.159
and then you add the next one i feel like that

00:45:08.159 --> 00:45:12.500
is a way of not feeling burnt out I mean it's

00:45:12.500 --> 00:45:14.760
easier said than done I know that I really do

00:45:14.760 --> 00:45:16.880
know that as I'm saying this I'm thinking you

00:45:16.880 --> 00:45:19.800
know it's hard to do that but I think it ultimately

00:45:19.800 --> 00:45:22.840
will lead to a feeling of success and control

00:45:22.840 --> 00:45:25.900
and yeah ultimately will help everybody involved

00:45:25.900 --> 00:45:29.400
probably yeah it's it's the really obvious kind

00:45:29.400 --> 00:45:32.179
of cliche thing I guess but it is so true and

00:45:32.179 --> 00:45:35.599
valid it's the small steps take small steps but

00:45:35.599 --> 00:45:38.019
I yeah I just think that you know when you're

00:45:38.559 --> 00:45:43.340
When you're feeling overwhelmed, also just acknowledging

00:45:43.340 --> 00:45:47.079
that you want to do it all, all at once. Of course

00:45:47.079 --> 00:45:50.239
you do, because you want to solve it all. You

00:45:50.239 --> 00:45:53.199
don't want to be in this situation. You don't

00:45:53.199 --> 00:45:55.760
want to see your child struggling. You don't

00:45:55.760 --> 00:45:59.199
want to feel the effects of, you know, whatever

00:45:59.199 --> 00:46:02.260
the behavioral issue is. That is exactly what

00:46:02.260 --> 00:46:04.300
your mind will want to do or want to try and

00:46:04.300 --> 00:46:07.579
figure it all out all at once. However, and...

00:46:08.030 --> 00:46:11.190
it's not going to help to try and do it all at

00:46:11.190 --> 00:46:14.429
once as i have learned from experience totally

00:46:14.429 --> 00:46:18.230
and me too as well you know how i um support

00:46:18.230 --> 00:46:22.050
the kids in my class it's so easy to think that

00:46:22.050 --> 00:46:24.250
they need to do all of the things you know especially

00:46:24.250 --> 00:46:26.840
with social media you know this is We're talking

00:46:26.840 --> 00:46:29.599
on social media. It's worth mentioning that it's

00:46:29.599 --> 00:46:32.400
incredibly overwhelming to see everybody doing

00:46:32.400 --> 00:46:34.760
all of the things, you know, but it's all working.

00:46:34.820 --> 00:46:36.880
It's all fabulous for them. And then we come

00:46:36.880 --> 00:46:39.219
to actually our reality because, of course, their

00:46:39.219 --> 00:46:41.119
reality isn't actually like that. We come back

00:46:41.119 --> 00:46:42.980
to our reality and thinking, oh, I need to do

00:46:42.980 --> 00:46:44.940
this. I need to do this. This isn't enough. You

00:46:44.940 --> 00:46:46.139
know, I'm not doing enough. I'm not spending

00:46:46.139 --> 00:46:49.139
enough. I'm not spending enough time. It's so

00:46:49.139 --> 00:46:52.550
easy to feel like inadequate, really. Yeah, no,

00:46:52.650 --> 00:46:55.670
I've definitely fallen for that too. Like just

00:46:55.670 --> 00:46:58.170
seeing like the therapists who've kind of got

00:46:58.170 --> 00:47:00.670
all these different wonderful ideas and you're

00:47:00.670 --> 00:47:02.489
thinking, my gosh, I've got to remember that.

00:47:02.590 --> 00:47:04.829
I've got to kind of keep that in mind. I've got

00:47:04.829 --> 00:47:06.969
to learn more about that. And you kind of make

00:47:06.969 --> 00:47:09.090
this list get longer and longer and longer and

00:47:09.090 --> 00:47:11.489
longer. And of course, they're wanting to kind

00:47:11.489 --> 00:47:14.219
of. produce more content and you know get more

00:47:14.219 --> 00:47:16.139
interaction and you know you're kind of okay

00:47:16.139 --> 00:47:19.380
you're feeding off that but actually just again

00:47:19.380 --> 00:47:21.840
it just adds to that overwhelm and I'm guilty

00:47:21.840 --> 00:47:24.039
of that too and ultimately like if I've been

00:47:24.039 --> 00:47:26.480
doing this for 16 years so you're getting 16

00:47:26.480 --> 00:47:29.019
years worth of knowledge that I've done little

00:47:29.019 --> 00:47:31.320
step by step and learn I've learned step by step

00:47:31.320 --> 00:47:33.880
all the way but I suppose by me just regurgitating

00:47:33.880 --> 00:47:36.980
it all at once you know in two posts a day or

00:47:36.980 --> 00:47:41.079
whatever I do it might be helpful to just filter

00:47:41.659 --> 00:47:43.420
that out for yourself so and just remember you

00:47:43.420 --> 00:47:46.179
know she's done this step by step over 16 years

00:47:46.179 --> 00:47:48.699
you know I don't have to do all of 16 years worth

00:47:48.699 --> 00:47:52.059
of stuff today actually I can just pick one thing

00:47:52.059 --> 00:47:55.000
you know almost then mute me work on that one

00:47:55.000 --> 00:47:56.880
thing and then unmute me I give you permission

00:47:56.880 --> 00:47:59.340
to do that if that helps you actually get that

00:47:59.340 --> 00:48:02.579
strategy in place I think that's actually a great

00:48:02.579 --> 00:48:06.949
idea yeah No, I agree. And because it's so easy

00:48:06.949 --> 00:48:09.150
to then go fall into judgment, you know, judging

00:48:09.150 --> 00:48:11.590
yourself that, you know, you haven't done enough.

00:48:11.750 --> 00:48:14.510
And, you know, you haven't. Yeah, you haven't

00:48:14.510 --> 00:48:16.429
learned enough about enough things. And, you

00:48:16.429 --> 00:48:18.610
know, you're failing at everything because of

00:48:18.610 --> 00:48:21.670
that. And yeah, it's worth it's worth the reminder

00:48:21.670 --> 00:48:23.909
that, you know, I've only got to this place of

00:48:23.909 --> 00:48:27.090
taking small steps, even when, you know, sharing

00:48:27.090 --> 00:48:29.250
this advice over and over and over again with

00:48:29.250 --> 00:48:31.610
my clients. But then, you know, going through

00:48:31.610 --> 00:48:34.730
several years of it myself and I still don't

00:48:34.730 --> 00:48:37.710
always follow that advice either. Yeah, of course.

00:48:38.829 --> 00:48:41.809
Don't judge yourself. We're human, aren't we?

00:48:41.849 --> 00:48:44.349
We're not robots. We're human. I saw a really

00:48:44.349 --> 00:48:48.829
lovely post the other day by a parent and it

00:48:48.829 --> 00:48:50.889
was saying your children aren't on Instagram.

00:48:51.130 --> 00:48:53.110
They don't see the things that other parents

00:48:53.110 --> 00:48:55.590
are doing that we see. They're not comparing

00:48:55.590 --> 00:48:58.519
you to other parents. They just want you to be

00:48:58.519 --> 00:49:00.840
their parent. All they know is what you show

00:49:00.840 --> 00:49:03.460
them. So kind of just take that pressure off

00:49:03.460 --> 00:49:07.659
really and, you know, do what you think is best

00:49:07.659 --> 00:49:09.920
is ultimately better because the children certainly

00:49:09.920 --> 00:49:13.000
aren't aware of what coulda, woulda, shoulda

00:49:13.000 --> 00:49:17.599
be. No. That's all they know. No, I love that

00:49:17.599 --> 00:49:21.139
idea and just getting into their mind about what

00:49:21.139 --> 00:49:24.840
they care about and what's important to them.

00:49:25.420 --> 00:49:27.179
It's really important, especially for our non

00:49:27.179 --> 00:49:31.460
-speaking children. It's all guesswork. But we

00:49:31.460 --> 00:49:33.719
know them. You're an expert in your child. Just

00:49:33.719 --> 00:49:36.119
because she can't tell you verbally, you know.

00:49:36.139 --> 00:49:38.519
You know what's important to her. You know if

00:49:38.519 --> 00:49:43.079
she'd rather make requests or toilet independently.

00:49:43.460 --> 00:49:45.519
You know that. You know what's more important

00:49:45.519 --> 00:49:47.960
to her. Regardless of what the professionals

00:49:47.960 --> 00:49:50.860
say is more important, you know what she wants.

00:49:51.019 --> 00:49:55.159
So maybe that's where parents... can advocate

00:49:55.159 --> 00:49:58.199
i think because yes it's all important of course

00:49:58.199 --> 00:50:01.860
it is but actually there will be an answer your

00:50:01.860 --> 00:50:05.139
child will want one over the other and you know

00:50:05.139 --> 00:50:07.639
you know that you know what they actually want

00:50:07.639 --> 00:50:13.400
yeah i just think yeah i think that's it's coming

00:50:13.400 --> 00:50:15.099
back to what we were saying a bit earlier but

00:50:15.099 --> 00:50:19.340
just that this whole world is so complex and

00:50:19.340 --> 00:50:23.519
everything about it and all the different approaches

00:50:23.519 --> 00:50:26.340
and ideas it's just so complicated and that's

00:50:26.340 --> 00:50:30.320
leads to overwhelm and actually it's sometimes

00:50:30.320 --> 00:50:33.019
it's just about the simple things it really is

00:50:33.019 --> 00:50:35.500
and just tuning into that so I think if you're

00:50:35.500 --> 00:50:39.019
feeling overwhelmed tune into what's actually

00:50:39.019 --> 00:50:41.679
simple because it's the simple things that usually

00:50:41.679 --> 00:50:44.800
are more important that matter and I bet those

00:50:44.800 --> 00:50:48.000
simple things so many parents are naturally doing

00:50:48.489 --> 00:50:51.730
absolutely yeah yeah offering choices is such

00:50:51.730 --> 00:50:54.750
a simple way of connecting with your child um

00:50:54.750 --> 00:50:58.010
yeah they just know when to give bath time they

00:50:58.010 --> 00:51:00.929
just know how to speak with their child you know

00:51:00.929 --> 00:51:04.269
i just i love watching parents of children who

00:51:04.269 --> 00:51:06.530
have no training at all but they are absolutely

00:51:06.530 --> 00:51:09.369
their child and just seeing them doing everything

00:51:09.369 --> 00:51:12.429
right it just brings me so much joy at the gate

00:51:12.429 --> 00:51:15.909
you know they just know i don't know to use less

00:51:15.909 --> 00:51:17.989
language or to they use little hand gestures

00:51:17.989 --> 00:51:20.050
they don't even realize they're doing it yeah

00:51:20.050 --> 00:51:21.869
and actually you're probably doing everything

00:51:21.869 --> 00:51:25.230
that is needed already probably yeah no that

00:51:25.230 --> 00:51:28.730
makes me think of like if i'm if i meet um you

00:51:28.730 --> 00:51:32.469
know a child who has some difference And I just

00:51:32.469 --> 00:51:34.710
suddenly like go, I don't know anything. I'm

00:51:34.710 --> 00:51:36.590
just like, I don't know anything. I don't know

00:51:36.590 --> 00:51:38.269
how to interact with this child all of a sudden.

00:51:38.329 --> 00:51:40.570
And of course, the parent is doing it brilliantly.

00:51:40.730 --> 00:51:42.170
And then, of course, when I'm with my child,

00:51:42.269 --> 00:51:44.230
I'm probably doing it pretty brilliantly as well.

00:51:44.369 --> 00:51:46.730
But yeah, it just goes to show because you just

00:51:46.730 --> 00:51:49.929
know your child, you experience their world.

00:51:50.010 --> 00:51:53.210
And yeah, you know best, doesn't it? I love the

00:51:53.210 --> 00:51:56.389
sentiment of this podcast. It's kind of about,

00:51:56.429 --> 00:51:59.289
it's hope, isn't it? And just trusting your,

00:51:59.389 --> 00:52:01.789
just having confidence in what you're doing and

00:52:01.789 --> 00:52:04.389
what you know. And that being the reason you

00:52:04.389 --> 00:52:06.869
advocate, not necessarily new knowledge, but

00:52:06.869 --> 00:52:09.349
just actually what you already know is enough

00:52:09.349 --> 00:52:13.429
and trusting in that. And I think what a lovely

00:52:13.429 --> 00:52:17.789
way to start the new term with that in mind.

00:52:17.809 --> 00:52:20.170
So everybody listening to this, me included.

00:52:21.019 --> 00:52:23.360
this term I think we just need to give ourselves

00:52:23.360 --> 00:52:26.900
some credit and listen to our gut and just think

00:52:26.900 --> 00:52:30.119
about that hierarchy of needs like for our learners

00:52:30.119 --> 00:52:34.019
and our children and and for ourselves yeah and

00:52:34.019 --> 00:52:36.539
give yourself grace as well can I add that yes

00:52:36.539 --> 00:52:39.860
absolutely with yourself because it's so much

00:52:39.860 --> 00:52:43.139
it is so much it will only help us be better

00:52:43.139 --> 00:52:45.900
advocates and better parents and better teachers

00:52:46.800 --> 00:52:49.699
For our much loved children. What is, I suppose

00:52:49.699 --> 00:52:52.699
we'll finish with this. What is something, like

00:52:52.699 --> 00:52:55.940
considering our conversation, what is something

00:52:55.940 --> 00:53:00.860
that you would want other parents or children

00:53:00.860 --> 00:53:07.059
or teachers, neurodiversity, I suppose, and from

00:53:07.059 --> 00:53:11.619
your stance, what do you hope that they would

00:53:11.619 --> 00:53:16.840
get from this and our conversation today? I think

00:53:16.840 --> 00:53:21.679
for other parents that are going through a journey,

00:53:21.739 --> 00:53:24.340
it's a unique journey. Your journey is your journey.

00:53:24.440 --> 00:53:28.159
But I think just to take from this around listening

00:53:28.159 --> 00:53:33.900
to your body, listening to your gut is probably

00:53:33.900 --> 00:53:37.179
a good piece of advice to do that as much as

00:53:37.179 --> 00:53:40.579
you can and to validate what's there as well.

00:53:40.659 --> 00:53:43.679
I think a lot of... Other parents who don't have

00:53:43.679 --> 00:53:46.340
neurodiverse children, they get a lot of validation

00:53:46.340 --> 00:53:49.860
externally from others as parents. That's so

00:53:49.860 --> 00:53:52.619
true. Yeah, you really do. Like you just, you

00:53:52.619 --> 00:53:55.460
know, just in so many forms, just find the way

00:53:55.460 --> 00:53:57.940
that you're feeling is really similar to, you

00:53:57.940 --> 00:54:01.000
know, what they're going through. But for neurodiverse

00:54:01.000 --> 00:54:05.340
people, we parents, sorry, the parents of neurodiverse

00:54:05.340 --> 00:54:09.909
children. it's you don't get that sort of external

00:54:09.909 --> 00:54:12.369
validation in the same way in fact you get a

00:54:12.369 --> 00:54:16.230
lot of toxic positivity you know or you get people

00:54:16.230 --> 00:54:19.630
that don't say anything at all um you know because

00:54:19.630 --> 00:54:21.050
they don't know what to say they're not sure

00:54:21.050 --> 00:54:24.190
what to say so you have to find that validation

00:54:24.190 --> 00:54:26.630
from within because you're not going to get anywhere

00:54:26.630 --> 00:54:30.349
near enough externally yes we've got our wonderful

00:54:30.349 --> 00:54:33.150
kind of communities on online and that's really

00:54:33.150 --> 00:54:35.190
helpful and really helps to validate that's why

00:54:35.190 --> 00:54:37.429
it's so needed because you know it's not easy

00:54:37.429 --> 00:54:40.869
to just find people locally um it's just not

00:54:40.869 --> 00:54:43.750
the same it's not easy so yeah i think to validate

00:54:43.750 --> 00:54:47.150
your own feelings whenever they come up um you

00:54:47.150 --> 00:54:49.630
know it's it's complicated there's there's there's

00:54:49.630 --> 00:54:52.329
hard feelings there's feelings of guilt there's

00:54:52.329 --> 00:54:55.210
feelings of anger there's feelings of loss and

00:54:55.210 --> 00:54:58.519
sadness those are all valid feelings and experiences

00:54:58.519 --> 00:55:02.239
so that would be my advice for parents going

00:55:02.239 --> 00:55:04.099
through this journey for the teachers i mean

00:55:04.099 --> 00:55:07.320
i think um one of the things that i think is

00:55:07.320 --> 00:55:11.380
so key and important is communication because

00:55:13.130 --> 00:55:15.829
For most of us parents, you know, with children

00:55:15.829 --> 00:55:18.989
who are non -speaking or, you know, very limited

00:55:18.989 --> 00:55:22.090
in their communication. So Autumn can say words,

00:55:22.150 --> 00:55:24.250
but she's not forming sentences. I can't have

00:55:24.250 --> 00:55:26.610
a conversation with her. So when she finishes

00:55:26.610 --> 00:55:28.809
her day at school, I don't know what she's been

00:55:28.809 --> 00:55:31.070
doing. I don't know what she's found difficult.

00:55:31.309 --> 00:55:34.449
I don't know, you know, how it's gone. And it's

00:55:34.449 --> 00:55:38.670
so important, I think, for that to be communicated

00:55:38.670 --> 00:55:41.329
because we've lost that. We're missing out on

00:55:41.329 --> 00:55:45.150
that. So I would love for teachers to be able

00:55:45.150 --> 00:55:47.389
to kind of really prioritise that, that that's

00:55:47.389 --> 00:55:50.090
really important because it's important so that,

00:55:50.190 --> 00:55:53.090
you know, there's some continuity between school

00:55:53.090 --> 00:55:57.170
and home. But it also helps families feel connected.

00:55:57.449 --> 00:56:01.730
And the school is part of their village, their

00:56:01.730 --> 00:56:04.489
support system. And if they feel disconnected,

00:56:04.690 --> 00:56:07.010
it's such a lonely experience anyway. It just

00:56:07.010 --> 00:56:09.010
only makes us feel more isolated and lonely.

00:56:09.309 --> 00:56:12.860
So I think... And I think sometimes parents,

00:56:12.900 --> 00:56:15.280
I do certainly, you know, worried about bothering

00:56:15.280 --> 00:56:17.420
teachers. We don't want to ask too many questions.

00:56:17.579 --> 00:56:19.940
You know, you're so busy. We get it. We know

00:56:19.940 --> 00:56:22.820
that, you know, as much as you can to be able

00:56:22.820 --> 00:56:25.380
to let us know, like, what have they been up

00:56:25.380 --> 00:56:27.980
to? What did they enjoy? What didn't they enjoy?

00:56:28.239 --> 00:56:31.699
And it's OK to make mistakes, you know, and or

00:56:31.699 --> 00:56:34.139
to not not necessarily know the answers either.

00:56:34.239 --> 00:56:37.599
And I think sometimes my experiences of mainstream

00:56:37.599 --> 00:56:41.210
has been that. Instead of kind of saying, well,

00:56:41.230 --> 00:56:43.530
we don't really know what to do. It's like, don't

00:56:43.530 --> 00:56:46.349
tell you because they don't want to be kind of.

00:56:46.809 --> 00:56:49.250
thought was not getting it right and actually

00:56:49.250 --> 00:56:52.469
I would prefer if you just say like we just we're

00:56:52.469 --> 00:56:54.570
stuck just like you we don't know what to do

00:56:54.570 --> 00:56:57.429
this is really hard so that we can be together

00:56:57.429 --> 00:56:59.650
with that stuff yeah that's really great advice

00:56:59.650 --> 00:57:02.010
because then it validates you're not knowing

00:57:02.010 --> 00:57:04.030
as well doesn't it if you both don't know together

00:57:04.030 --> 00:57:06.309
and you can work it out together and test it

00:57:06.309 --> 00:57:09.670
together and again that breeds that idea of community

00:57:09.670 --> 00:57:13.730
and it's yeah one one voice I suppose in that

00:57:14.079 --> 00:57:16.320
sense rather than you both having your own ideas

00:57:16.320 --> 00:57:18.460
yeah that's really really great advice because

00:57:18.460 --> 00:57:20.900
absolutely communication is key for everything

00:57:20.900 --> 00:57:22.900
and it goes both ways as well you know the more

00:57:22.900 --> 00:57:25.099
we know about what's happened the night before

00:57:25.099 --> 00:57:29.500
or at the weekend it helps us navigate their

00:57:29.500 --> 00:57:31.599
day better because we can understand oh they're

00:57:31.599 --> 00:57:33.800
probably tired because of this or they're probably

00:57:33.800 --> 00:57:35.679
overwhelmed because of this or anxious because

00:57:35.679 --> 00:57:37.579
of this you know the more we know the better

00:57:37.579 --> 00:57:39.599
and I'm sure that's the same for home as well

00:57:39.599 --> 00:57:42.420
yeah yeah you'll manage situations far differently

00:57:42.420 --> 00:57:45.460
if you have that basic understanding of what

00:57:45.460 --> 00:57:48.260
their lives have been can i ask you a question

00:57:48.260 --> 00:57:51.679
because of course autumn is starting a specialist

00:57:51.679 --> 00:57:56.460
school okay september so it's a whole yeah a

00:57:56.460 --> 00:57:59.639
whole change whole shift for us what's what's

00:57:59.639 --> 00:58:01.519
helpful i mean you've kind of touched on it there

00:58:01.519 --> 00:58:05.320
but what's helpful for us parents to kind of

00:58:05.320 --> 00:58:06.800
what do you think would be helpful in terms of

00:58:06.800 --> 00:58:09.199
maybe our mindset going in or like what would

00:58:09.199 --> 00:58:12.659
be helpful for us to help you Yeah, I've got

00:58:12.659 --> 00:58:14.159
a really great podcast on this, actually. It's

00:58:14.159 --> 00:58:15.980
one of the few, I think it's number five, I don't

00:58:15.980 --> 00:58:19.019
know, number four. It's with Spinning World of

00:58:19.019 --> 00:58:22.199
Autism, all about her son starting school. And

00:58:22.199 --> 00:58:24.659
she asked me the same question. And I said that,

00:58:24.760 --> 00:58:27.679
remember, your job isn't to be the teacher and

00:58:27.679 --> 00:58:29.980
prepare them for school in that way. It's very

00:58:29.980 --> 00:58:32.119
much to prepare them to get through the door.

00:58:32.239 --> 00:58:35.059
So, and that's where your job ends. So it would

00:58:35.059 --> 00:58:38.869
be things like... practicing the journey preparing

00:58:38.869 --> 00:58:41.849
them with visuals practicing uniform wearing

00:58:41.849 --> 00:58:44.949
if that is a thing at their school so that is

00:58:44.949 --> 00:58:47.929
kind of the preparation for the transition from

00:58:47.929 --> 00:58:50.190
home to school I would say to focus on in the

00:58:50.190 --> 00:58:54.250
holidays not necessarily the actual academic

00:58:54.250 --> 00:58:56.809
work like she was saying things like oh is it

00:58:56.809 --> 00:58:59.269
important that they can toilet themselves or

00:58:59.269 --> 00:59:00.670
is it important that they can put their own shoes

00:59:00.670 --> 00:59:02.329
on and things I think no don't worry about all

00:59:02.329 --> 00:59:04.809
that Just get them in the door, get them in the

00:59:04.809 --> 00:59:07.769
door as regulated and as prepared as you can,

00:59:07.969 --> 00:59:11.989
I would say. Yeah. And also don't be afraid to

00:59:11.989 --> 00:59:14.789
give, don't be afraid to be that parent was also

00:59:14.789 --> 00:59:18.170
my advice. We love that parent. Don't be afraid

00:59:18.170 --> 00:59:22.590
to give five sides, double sides of A4 on that

00:59:22.590 --> 00:59:25.630
first date, all about them and what their triggers

00:59:25.630 --> 00:59:27.889
are, what they like, what food they like, what

00:59:27.889 --> 00:59:30.210
they don't like. Don't be, don't worry about

00:59:30.210 --> 00:59:32.630
being that parent. We love that parent. because

00:59:32.630 --> 00:59:34.650
we don't have to read it all on the first day

00:59:34.650 --> 00:59:38.070
but we've got something to refer back to if something

00:59:38.070 --> 00:59:40.230
an anomaly comes up and we're not sure about

00:59:40.230 --> 00:59:41.909
why they've reacted this way or whatever when

00:59:41.909 --> 00:59:43.829
we're preparing our lessons we can have a really

00:59:43.829 --> 00:59:47.289
good idea of what a nightmare situation looks

00:59:47.289 --> 00:59:49.070
like for them what a dream situation looks like

00:59:49.070 --> 00:59:51.289
what motivators might look like for that you

00:59:51.289 --> 00:59:53.550
know for that person and so some kind of like

00:59:53.550 --> 00:59:57.030
all about me it is really helpful i've got a

00:59:57.030 --> 00:59:59.369
happiness audit actually if anybody wants that

00:59:59.369 --> 01:00:02.699
i can leave that in a link um down below It's

01:00:02.699 --> 01:00:05.400
written by Flo Longhorn, who's a wonderful sensory

01:00:05.400 --> 01:00:07.980
specialist teacher, actually, who's since retired.

01:00:08.139 --> 01:00:10.940
And it's a happiness audit, which basically it

01:00:10.940 --> 01:00:14.739
audits what is happiness for that child, which

01:00:14.739 --> 01:00:17.219
in turn then lets you know what they don't like.

01:00:17.280 --> 01:00:19.619
So their favorite smells, their favorite tastes,

01:00:19.739 --> 01:00:22.519
their favorite sounds, toys, way of building

01:00:22.519 --> 01:00:23.920
friendship, their favorite way of communicating,

01:00:24.199 --> 01:00:26.480
all of those kind of things. It's really useful

01:00:26.480 --> 01:00:29.039
for our teachers to know that. Otherwise, we've

01:00:29.039 --> 01:00:30.929
got to spend the first... three weeks learning

01:00:30.929 --> 01:00:32.969
that stuff whereas you guys know it you're the

01:00:32.969 --> 01:00:35.210
expert already so if you can give us that head

01:00:35.210 --> 01:00:38.190
start then it means that we can have that already

01:00:38.190 --> 01:00:40.809
and then we can start right from the off of you

01:00:40.809 --> 01:00:42.710
know getting going with everything else that

01:00:42.710 --> 01:00:45.889
we want to do so especially if you're starting

01:00:45.889 --> 01:00:50.860
in as year one you know um then that would give

01:00:50.860 --> 01:00:52.760
them a really good head start to get to know

01:00:52.760 --> 01:00:55.719
her quite quickly, get her to feel safe at school

01:00:55.719 --> 01:00:58.239
quite quickly because she'll feel really understood.

01:00:58.480 --> 01:01:00.619
She won't understand why, but she'll feel really

01:01:00.619 --> 01:01:02.260
understood because they've got her motivated,

01:01:02.260 --> 01:01:04.579
they've got things that she likes, they aren't

01:01:04.579 --> 01:01:06.280
doing things that might trigger her and all of

01:01:06.280 --> 01:01:08.059
those kind of things is really helpful. So yeah,

01:01:08.079 --> 01:01:09.539
don't worry about being that parent. Don't worry

01:01:09.539 --> 01:01:11.820
about asking too many questions. Don't worry

01:01:11.820 --> 01:01:14.159
about questioning why we're doing things because

01:01:14.159 --> 01:01:16.820
we are very happy to answer why if we know the

01:01:16.820 --> 01:01:18.789
answer. Also, if we don't know the answer, then

01:01:18.789 --> 01:01:20.550
it's really great because it gets us to think,

01:01:20.570 --> 01:01:23.030
yeah, why do we do that? And sometimes it gets

01:01:23.030 --> 01:01:25.409
us out of a stagnant situation. Yeah, don't worry

01:01:25.409 --> 01:01:26.929
about being that parent. We love that parent.

01:01:27.489 --> 01:01:31.630
That's very reassuring. And I'm excited for her

01:01:31.630 --> 01:01:35.610
to be in a space where all of those little things

01:01:35.610 --> 01:01:40.130
about her are just going to be so well kind of...

01:01:40.440 --> 01:01:42.900
attuned to I guess they're just going to kind

01:01:42.900 --> 01:01:44.440
of those are the things that they're going to

01:01:44.440 --> 01:01:48.219
be wanting to know about and connect with rather

01:01:48.219 --> 01:01:50.980
than the kind of you know just where she at in

01:01:50.980 --> 01:01:57.239
maths yeah exactly yeah I kind of I am very proud

01:01:57.239 --> 01:02:00.400
of the fact that I know my kids siblings names

01:02:00.400 --> 01:02:03.119
pets names and the football team their dad supports

01:02:03.119 --> 01:02:07.219
or mum but I have no idea what the academic level

01:02:07.219 --> 01:02:11.139
is off the top of my head And I really love that.

01:02:11.159 --> 01:02:13.019
And I think that's special education done right.

01:02:13.199 --> 01:02:16.780
We really are part of the family. We really know

01:02:16.780 --> 01:02:19.920
the family and their child so intimately. It's

01:02:19.920 --> 01:02:22.260
such an intimate relationship. I have my children

01:02:22.260 --> 01:02:24.820
for seven years in my classroom. So that's incredibly

01:02:24.820 --> 01:02:27.400
intimate by the time they leave us. And they

01:02:27.400 --> 01:02:29.800
are really our family. And I feel like that's

01:02:29.800 --> 01:02:32.679
what special education is. It's the holistic

01:02:32.679 --> 01:02:36.059
approach of what's needed for that child, even

01:02:36.059 --> 01:02:39.989
if it doesn't look academic. um we try and pair

01:02:39.989 --> 01:02:43.590
the two but actually our main focus is connection

01:02:43.590 --> 01:02:46.849
and having the child like enter our world and

01:02:46.849 --> 01:02:49.530
after into theirs and building trust and working

01:02:49.530 --> 01:02:51.449
on all of the things that you want to do and

01:02:51.449 --> 01:02:53.670
maybe taking some of that load off of your list

01:02:53.670 --> 01:02:55.849
maybe you're just working on one thing but maybe

01:02:55.849 --> 01:02:58.190
we're working on three and we could do it together

01:02:58.190 --> 01:03:01.269
yeah so it's it's that as well thank you so much

01:03:01.269 --> 01:03:04.449
emily for joining us podcast this has been So

01:03:04.449 --> 01:03:06.829
enlightening. Thank you so much for your raw

01:03:06.829 --> 01:03:10.409
and openness and honesty and also your wisdom.

01:03:10.570 --> 01:03:13.690
It's been really, really, really great. You're

01:03:13.690 --> 01:03:16.289
very welcome. I really appreciate being able

01:03:16.289 --> 01:03:19.550
to offer some thoughts. Of course. You really

01:03:19.550 --> 01:03:23.590
have. Yeah. And it's so, what an amazing position

01:03:23.590 --> 01:03:26.329
to come from with being able to share both of

01:03:26.329 --> 01:03:30.610
those things. If you would like to. learn more

01:03:30.610 --> 01:03:33.769
about Emily and Autumn's journey then definitely

01:03:33.769 --> 01:03:36.929
follow them over on Instagram at raising underscore

01:03:36.929 --> 01:03:40.469
rare see more about what she's been talking about

01:03:40.469 --> 01:03:43.849
today in practice and follow that journey um

01:03:43.849 --> 01:03:45.610
yeah thank you so much Emily for joining today

01:03:45.610 --> 01:03:48.269
thank you thank you I've loved it