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Hi, my name is Jordan. I am a special education teacher from the UK. I share my passion for

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everything communication, sensory regulation and fun lesson ideas for my classroom of disabled

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pupils aged 4 to 11. Each week I am joined by experts in the field answering your questions

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and sharing our knowledge and experience working alongside our beautiful young people. Let's get started.

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Welcome back. Today I'm going to be joined by Neuro Spicy Apparel and I'm so excited to get

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chatting with her. We've been chatting for a little while as like small business allies and

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clothing allies and I'm so excited to speak to her. She is a mom of a gorgeous autistic boy

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and she has created the most gorgeous clothing as well, advocacy clothing. How are you doing?

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I'm good, how are you? Sorry for the really awkward like bedtime time that I choose.

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It's fine, my kids are all asleep. Oh wow, how did you manage that? With a lot a lot of sleep training

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and consistency and routine. AJ's only just gone to sleep so it's what two minutes past seven.

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I can still hear him mattering away to himself but he's in bed. How many children do you have?

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I've got three, got three. So I have AJ who's coming up to six years old, I have Amelie who is

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two and Arielle who is three. Wow and is it AJ who has the diagnosis? Yes so AJ is autistic

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non-verbal or pre-verbal. And he's just turning six? Yes so he turns six in February. Okay so he's

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had a year of school? Yes, well he's coming into his second year of it now. Okay and what kind of

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school is he in? He's in a mainstream school but in a resource provision. Okay so he's in a mainstream

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school but he's in a class of I think there's five children maybe six in his class. Amazing.

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And is he getting on all right? He's absolutely thriving, he's a completely different kid.

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Interesting isn't it? Yeah. Because there's a lot of fear that goes into that transition.

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Yeah. Was he at nursery before as well? Yeah so he's been in three nursery settings. The first

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one is the one that my two girls still attend and it was a major fight to try and get funding for him

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for the extra help that he would have needed and because they're under a different council

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no one likes to talk to each other. We struggled so we moved him to a different one that said they

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could help him and they could focus on him and do all of that and then didn't. And then we finally

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moved him to the nursery within the school that he's in. Oh cool. Yeah so one of my friends has her

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son in the resource provision and was like oh no they're amazing get him in here. So we got him

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into the nursery and they still only could do I think it was 2.5 hours a day because that's all

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he could handle or they could handle. Yeah that's the thing isn't it? Like I've seen both. I have

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seen it where it's genuinely in the child's best interest to just do that half day but I've also

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seen it the other way around. And I think if they'd have had the funding to have because he had a

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one-to-one for those two and a half hours and he was fine but then obviously those hours run out

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and then he's a bit of a fruit box. It must be hard because everything's out at once like

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it doesn't suit like autistic what they want typically. They want it not visual it not cluttered

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and he had 31 children in it and it was just way way too busy for it. So he would just go and hide

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in the corner and play with his toys and they were quite happy to just let him do that. Yeah.

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Which is fine and then obviously with him being there and being in the resource well in the

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resource provision now when he was in the nursery is when they applied for his EHCP. So before we

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got him into year one he had his EHCP. Amazing and now he's in the right place with the right

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support. He's got his EHCP that's amazing. He's thriving and I saw that he has been saying some

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words using his EHCP which is incredible. Do you want to tell us about that? He uses the visuals so

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like you have in your classroom where they're stuck to all the cupboard doors and they're stuck to all

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the wall in the toilet and we use them at home but he kind of he doesn't have the attention span.

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Yeah. To put it politely he to try and get him to look at them when you're holding them and you're

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trying to get them under his nose he's just not interested. He'll use them in school but flutteringly

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and I thought he's on his iPad all the time. Yeah. Put it on his iPad and it works. He's

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talking to us and we're only five days in. I was gonna say it's new right? Yeah so I think we started

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on Tuesday last week. Wow. Nearly a week and last night and tonight I've just put him to bed

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night night I love you and so hear that from a child who for six years you've waited for a void.

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For a void. Yeah I'll just hold my tears I won't I won't do anything. Yeah because I'll take over

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because as much as you as much as you're happy and you know they love you as much as you say

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you know I accept them. Of course we do. But my god is it amazing to actually give those away.

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Yeah and at first he kind of you you press the buttons and we have in in in in in stop stop stop

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and it's just constant and you're like oh my god is this what it's gonna be like when you actually talk.

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But then the more we're using it and we're using it consistently and I feel like I'm that annoying

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parent and I'm like you you want your drink okay you drink or you want your shoes okay shoes on.

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That's why you're seeing results already in five days like sometimes it takes 12 months of in in in

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in to get to the point you're at so that shows how much you have been modeling and I think the

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same I had Laura Philly World of Autism one day too. Yeah and she's seeing great results and I do

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think it's because she has literally dove in like head first and like if we're gonna do this we are

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gonna do it and I feel like you're doing the same. Yeah and I kind of I thought if I'm paying for the

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software I'm just I'm going in I've paid for it we're making the most of it I've bought an iPad

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solely for that so it's completely different to his play iPad and he's gone into school with it

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today and he's been pressing bits in school as well. Amazing so awesome it's his voice he's finding

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it out isn't he and if your child is like babbling with it because that's what we call it like baby

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babble or swimming with it even. Yeah they're just testing it out like what does this one mean like

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imagine if all those pictures were in like Japanese because he wouldn't necessarily understand what

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the pictures are or where to go so imagine they're in Japanese and then you'd have to press all the

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icons to know what they make and to find out what sounds it makes and the chances are he presses it

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this morning I pressed school when we were in the car on the way to school and he pressed classroom

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and was like classroom and I'm like yeah we're going to school to your classroom and you find

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yourself like yes exactly and it could be a simple bit it could not but it doesn't always matter

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because he's been building those connections the more he does it and the more you do it he's

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yeah when we get so excited about it like the fact that he's pressed something and it links and he

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yeah he might have done it by accident his finger might have slipped but we're like yeah yeah yeah

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that's what you're trying to say and then he gets so excited by it that he presses it again and then

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the chances are he'll actually verbally say it and we're like this is it because that's another

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thing that people say right that oh I don't want to do like visuals or ipad because I really want

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them to speak yeah and you will not believe how quickly how children will start to speak

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if they're using the visuals and if they're using the support system because it's just

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it's just showing them like the people are there to be communicated with and when you communicate

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with them you get the stuff you want yeah but it's basically just our language processing

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they they continue to press it and then they hear the noise they register that noise and then that's

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how the language comes yeah and yesterday he was pressing stop stop stop stop stop stop and then

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for about an hour afterwards he just kept shouting stop stop and people are like yeah okay stop you

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stop it's amazing that he's finding like because he can hear it in his voice yeah he's worked out

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really hard yeah he must be working so hard to like find out how to say it with his mouth and

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then saying it and know the meaning there's so much going on there isn't there yeah so much

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learning to so many people because so many of like people that I've spoken to are like oh well he

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doesn't talk and I'm like no but language and learning to speak is hard it is so hard I still

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now when I'm trying to talk get all my words mixed up on my sounds and I have to process it all so

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he's got to do that 10 times over he's still learning he's a baby yeah exactly yeah and there's

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and there's like babies will listen to language for 12 months this is neurotypical babies for 12

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months before they even say babble yeah so like add us like processing on there add sensory on that

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add proprioception because you might not be able to make the right things of Italian there

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yeah and social communication difficulties and they're like they have that all on like my goodness

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they're amazing yeah did you think about autism before absolutely nothing we went into this

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completely blind we just thought he was born he was what was like a lockdown baby yeah so he

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wasn't socialized there was nowhere to go we couldn't go to play centers there was no we

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weren't allowed near other children so when he started nursery when he was 14 months old

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he didn't socialize with other children right he played in the corner by himself he

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lined toys up in the corner because that's what he was doing at home you had the reasoning behind

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you like yeah it's so good like he hasn't socialized yeah of course you would take that spine nursery

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were like well he's not hit this milestone and he's not hit this and he's not reaching this one and

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he's not talking and I'm like yeah but he doesn't know how to because he's not had the chance to

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um so we thought nothing of it and then it was when his middle sister was born and she was

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reflux she had reflux she had colic she was tongue-tied she cried a lot and he was really

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really sensory to it and would just destroy everything inside because it's so bad and then

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at that point is when I asked the health visitor I was like I need help what's happening like why

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why is he I'm not coping with it but why is he not coping with it and then that's when they did his

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two-year check then it was like okay he's not meeting this milestone he's flying with his um

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he can run he can climb he can walk he can do all of that but he was so behind on his social

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communication and stuff like that which is when we got referred to all different places

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um and it probably only took about eight months before we then saw a pediatrician

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that's amazing who did the tick box ADOS assessment with me and was like yeah yeah yeah he's autistic

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I'll give you your diagnosis today and I was like what what do you mean he's autistic

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he's autistic um and since then is when I've done I've literally just delved into it um books like

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on google 24 seven you get access to like speech and language therapist occupational therapist

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teachers like everything you could ever want on there and yeah it's a lot of information isn't

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it but I don't know how parents felt before that because you would get this diagnosis you knew

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it was a piece of paper that says here your child's autistic off you go right what would you do with

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that information and I was like well what do you mean what do I do now so that's when I started

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researching toys that he could play with or because he's never played with toys and he still doesn't

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now really he will play with like train tracks he builds train tracks all over my floor so he likes

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the connecting yeah the jigsaws and he's got ipad games of just jigsaws and he can do like

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100 piece jigsaws on his ipad I can't even do 100 piece jigsaw and he's flicking between all the

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pieces and doing it all um he builds with lego but he doesn't like big lego duplo really tiny

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fiddly lego um so anything that's building or construction or wheels yeah I wonder if he's got

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either the connecting or the orientation schema yeah schemers yeah yeah um they often go hand in

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hand actually yeah that connecting of jigsaw puzzles but also with a puzzle you kind of turn

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it don't you just get it in or yeah so yeah that orientation is often quite interesting as well

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amazing but he's never because we never we bought all of the I was one of those mums that only wanted

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wooden toys yeah I do work to my advantage because he would stack and he would line everything up in

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color and cars like little hot wheels cars he carries a hot wheels car around with him 24 seven

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it's a little gold car so old now I'm like waiting for the wheels to fall I'm like sometimes if he

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drops it the wheel will like fold inside the car and he's like and I'm like okay it's okay we fix

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it but so if we if we lose this car we're like okay where's it gone and he will be like panicking

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you can see the panic in his face when he's lost it that's his safety yeah so we it was little

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snuggies he used to carry it was almost like a rag that he used to carry around and now he's

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replaced it with his big boy car well it's good to know that it can be replaced so when the

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dust comes yeah hopefully there's something else yeah we're distracting with another car

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yeah it's the thing is they decide don't they there's no yes us decisions about it no absolutely

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not I'm the perfect wooden toys you know it's gonna be this like horrible McDonald's toy that

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you just love yeah the most garish loud toy that you can find yeah so I kind of when we were in

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the process of not process but like when we found out that he was autistic I went out and bought all

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of the loud flashy toys that would repeat things or you hold it and it would repeat like record

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what you say and repeat it back and then we started to get bits of babbling and stuff like that and it

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was like okay so it's there you've just you've got to unlock it yeah yeah it's and every child's so

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different as well so like somebody might be listening to this and like oh I did that too

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and that didn't work and then that's just a different child right I find a different arm

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to go out of how what's gonna work for your child and we thought we would never hear his voice

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we thought okay if he gets to 10 years old and he's still not talking that's fine because he does

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they do communicate in their own ways there's a lot of hand-over-hand or takes you to what he

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wants or brings what he wants to you yeah and I thought okay if this is it that's fine because

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he communicates how he needs to and then I just decided on a whim let's go for it with the AC

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yeah because at least you've tried everything right like it's always like oh yeah it might

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off but what if it does and and then it's amazing that you've started it so early as well because

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you know some people are discovering it now because it's new now right but there's like

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25 girls that haven't had a voice for 25 years and they're just finding it yes and we're learning

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oh my god you knew all of this and then you think god you knew all of that all of that yeah and even

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with like school and his teacher and stuff they've all said he knows exactly what you're talking

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about he knows he listens to everything they can be on the other side of the classroom and they'll

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be like okay we need to move that box that's near ageo because he's gonna clock that in a minute

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and he's gonna climb on it climb onto that thing and then he goes I'm doing it anyway

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so he listens to everything and he's so he's so clever you've just got to find how to yeah get it

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out of him because no non-speaking doesn't mean non-thinking yeah yeah never be incompetent

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absolutely yeah I always think like whenever I do say to someone or he's yeah he's autistic he's

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non-verbal I do get the oh and I'm like elephant there's nothing wrong with it like he's fine he

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he does communicate trust me yeah yeah it's amazing actually I've known non-speaking and

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non-verbal children to be better communicators than yeah the talking children that I've had in

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my class because sometimes with echolalia or guest-art language processing they're they're

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hyperverbal actually but they're not saying anything of important it might be important to

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them but they're just kind of babbling these words over and over and over again and actually

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they're not communicating with you effectively at all whereas actually you somebody reaching

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their hand pulling you over to a cupboard to open it yeah he's a way better communicator

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and you're gonna get it for me and I'm gonna point to the picture that you've got on your cupboard

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and tell you what and they're with you they know that you can access what they want they're working

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really hard with you so that you understand when they are like that the eye contact that you're

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going to get from them is like soul-destroying my god when you're cleaning your eyes people that say

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what you're talking about your eye contact have never said no to an autistic child

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you hear you also see the best communication at that time right yeah absolutely so when it's not

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a swimming day and there's a child who wants swimming yeah you will get great eye contact you

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will get the best communication ever you'll get attempts of verbal speech you'll get them

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picking up their bag finding symbols i don't even know you used a symbol i don't even know

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how to read and they'll find it yeah aj will give you direct eye contact that sometimes and it's

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it's so creepy because you're like what what do you want and you think oh actually he's got this

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in his hand or he wants you to open this or you look at the cut the toy that he's holding and it

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is broken and you're like oh okay you want my attention that's fine okay we can help we can do

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that whereas they just assume when you say oh they're autistic non-verbal that they just

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they're not going to socialize they're not going to do anything yeah and also like maybe some

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things what they're into is similar to what toddlers would be into or sometimes how they

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move would be similar to how a toddler so they assume that everything is like is that level and

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actually these kids are so spiky like you said with his running jumping climbing they're obviously

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they're often way ahead of their age group in some areas like that yeah but then others they

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wouldn't be and it's different for every child it's different for every new virgin child um i

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have worked with maybe 400 or more children on the autism spectrum and not not once been the same

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no not one no um there are similarities there are similar traits there are similar you know

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things oh that reminds me of that person oh that reminds me of that person but never the same no

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which makes it so similar they do this they do this exactly the same one of them will all of a

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sudden go ah but i do this yeah exactly exactly they're all yeah different and they've all they're

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all so amazing in their own different way once you realize oh actually you're really good at this or

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look at how you've done that or aj will if you're trying to put a train track together and you put

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it the wrong way you'll almost like snatch it off you to be like excuse me what are you doing

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absolutely and i love that that's what makes my job so joyful because genuinely i am learning

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every day like the kids in my class teach me about the world to stop these look so much yeah like

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they are present in the moment at all times like it is about now it's about what i want now yeah

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like there's nothing there's nothing better than coming into work or coming home and you're stressed

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you're anxious or whatever and they just ground you they're like look love i don't care about what

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you've going on we're doing this and i want this now and i'm like oh like yeah cool yeah actually

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yeah it doesn't matter yeah aj is very very like if i'm on my phone when i'm when we're in like

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after school if i'm on my phone he just takes your phone he's like no it's not time for that mom me

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now yeah and it's so that's so refreshing so i've had that as well with yeah so it's like yeah

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because you get lost in it don't you that world especially so let's okay that goes on to your small

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business how the hell are you a mom of three and autistic child winging it incredible small

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right so your son's diagnosed start school um autism right okay let's get into this

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build a community yeah did instagram come first instagram no i so i've always had like my personal

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instagram and i've always i've always followed you on my personal instagram and like a few of the

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other autism accounts that i've always followed and then i've it's more a sense i've i started it

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because when you're out in public if he has a meltdown the looks that you get the stairs that

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you get i've had people talk at me i've had people say well he's a bit too old to be in that wheel

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that buggy isn't it and i'm like that's his safe place and it's not a sense of ignorance of the

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general public but it is in the sense that there's just not enough knowledge of autism and there is

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it's not explained enough and i just wanted to not label him in a t-shirt that says i'm autistic

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because his label doesn't matter he's still who he is like that it's it's that's just who he is

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that's how he functions that's how his brain works that's how he's wired up but i just wanted to raise

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awareness but if he is having a meltdown i can be like he's autistic he is a bit loud he can't

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handle how it is and all of the t-shirts that are about are very bright and they're really

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i'll say yeah those are let's say it like all pieces and infinity symbols and bright garish

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stuff that's in your face and yeah i want it to be in your face i want you to see that he's autistic

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or i'm a cool sen mom that i'm here with my autistic child but i want to do it in a subtle way

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that and also one that like is aesthetic but yeah but he's a little bit fashionable like why would

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why could you not have both yeah yeah and it's kind of i wanted it to be so we have like the

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always advocate range that well what are you advocating for ask me please ask me because

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i was a conversation starter so the children it's it's acts as like a protective shield almost yeah

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like you don't need to judge me because this like i'm already telling you who i am so like leave me be

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kind of like a field and i totally get yeah and for moms it's like ask me yeah ask me yeah ask me

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i want i want to tell you about it i want to change the look on your face if you're talking

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at me because he's screaming and he's kicking me about and he's lying on the floor in in sainsbury's

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yeah ask me ask me why you're doing that yeah i'll happily tell you yeah exactly and your clothing is

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so gorgeous like so good the colors that you choose your t-shirts and jumpers are divine

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your fonts but the fact that you cut out the words in the pumpkin just oh it's just so good

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so they look so good no matter what they say like i love them anyway yeah but also they are so

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meaningful and so needed like yeah and that's what i wanted to do and like the smashing pumpkins and

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stigmas one that we've just done i wanted it to be honey or like we have rebel without a clause for

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for christmas i want it to be legible to the season but i also want it to be funny and i want

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you to be like okay well what stigma are you smashing or okay well what claws have you not got

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and he's not got the neurotypical claws yeah because he's more spicy instead yeah i love it

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i love it so much and also you can wear it so proudly like everywhere like do you like living

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in your uniform i just wear to send mom club daily it's also a bit of a win isn't it yeah because i

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feel the same because you don't even need to think about what you wear because you just and it did

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start off as an autism awareness brand just purely autism and then i thought actually no let's go for

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all disabilities like you advocate for everyone we make sure that everyone's included so whether

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that's down syndrome whether it's just adhd whether it's cerebral palsy like we advocate for everyone

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we want everyone to be included so we advocate and that's kind of i've reduced the range down

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a bit and we have got some new stuff coming in the new year um that i just want it to be for all

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disabilities yeah yeah yeah that's great except everyone like and then do you make it yourself

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do you print that's amazing that you do is it screen no so it's all vinyl heat pressed on

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so it takes me probably 15 to 20 minutes to do each one and then obviously with the big influx

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that we've just had for the christmas um collection i am up to my eye yeah amazing

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like it's so lovely to receive messages and photos of people in them yeah because you kind of forget

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like you make them you spend all your like like you put so much love into it and then you slip

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it off and then you never hear about the ones you're making yeah you like forget that they ever exist

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yeah and when people tag it and like tag us in pictures or tag us in stories i love it i love

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seeing out in public i think oh my god how many people have seen a t-shirt that i've made today

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because like it's through the website or through instagram and there's no like face-to-face like

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chat like they would be on a stool or whatever yeah when you start to think oh they're they're

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they bought an age six jumper yeah like yeah it kind of gives a little clue as to like yeah

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we have people that have just bought like christmas ranges and they've bought like a five to seven

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and nine to eleven and twelve to thirteen and i'm like your whole family's wearing that

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it's so cool and also like who knows how many conversations that you will never know the impact

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no and that's actually really exciting as well isn't it like the impact of the jumper is not

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only for the mum who feels more supported as part of a community who can go out more confidently

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because they know like even if the people she's seeing hasn't got her back like yeah the crew

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doing like the cool mum's shirt yeah or dad's love and then the kids was more protected and like

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and also those conversations that are going to happen like so much will be happening because

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of your designs yeah that you will never know no and i've had messages from people saying oh three

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mums came up and asked me about where i got my t-shirt from today so i've given them your website

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and then two days later i might have a follower message me and it ends up in my request so if you

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were in my request i apologize there's loads but i'll have people pop up in my message request like

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oh someone recommended me like last week and i'm like yeah like welcome and it really is

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on the community isn't it yeah i feel like the sen community on social media is the best part

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of social media yeah and i think when you have friends that don't have a neurodiverse child

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um they they just don't get it as much as they try to get it and as much as you can explain it

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and they see it and they experience it and they experience the meltdowns or my best friend got

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namest by a dinosaur last year by him swinging it so she's been in the thick of it but i think

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sometimes when you speak to someone that does have a neurodiverse child they just get it

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yeah and whether you want to say oh my god they've done my head in today i can't the meltdowns have

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been unreal or you think oh my god i need to share with someone that you said strawberry obviously

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they say they just get it yeah because it's because they could be your best friend ever

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or like a really close family member yeah but if they don't understand like the journey for

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every reason or how big that thing is then you're not gonna want to feel like you can share it with

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so you can share on social media because they know yeah and the amount of love that i get when i

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heard him saying night night the other night the amount of people i inboxed i was like yeah thank

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you like this is like how amazing is this he's used it for two days yes yeah whereas like if you

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hadn't have like known children like that you might not know the significance of it and how huge it is

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yeah and i think i put it on my personal instagram that like i've waited six years yeah that and for

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you for everyone else that follows me like on my personal instagram that i've got six-year-old

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children that have been talking for four years that to them's like oh yeah well yeah we said

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night night but actually no i've waited six years to hear two words of him yeah yeah it's amazing

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it is huge yeah i was like oh like it's massive i know i was still over his bed like don't cry don't

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cry don't cry yeah i bet you were i mean how lovely that you've got that on film as well yeah

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so lovely yeah um because you could have told us about it but it's even more special to me

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yeah yeah and i think it's going to stay in my camera roll that it's on the favourites like

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it's not going anywhere yeah yeah that's amazing talking about community like since your son has

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been part of ascend provision that you've got more parents that you can relate with or is it not really

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like yeah so we in the school that he's in we all so school finishes at 10 plus three we're all there

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at half past two we're all there at half past two we all have on that uh for 40 well 40 minutes

308
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before the children come out and we catch up every single day and it's it's i said to someone the

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other day it's the only bit of socializing that i get to do a day because i'm at home all day making

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orders or tidying my house or running around taking children to appointments i don't speak to an adult

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and then if i've if my partner's working away i really don't speak to an adult i speak to two

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children that don't shut up and one child that i'm trying to get to speak so then when i go to do the

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school pickup and i get to speak to someone for 40 minutes it's like word from it i have stopped

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apologizing i used to say oh sorry he's autistic sorry he's not so like sorry he's pushed your child

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like your child wasn't actually in his way and he doesn't understand how to get them out of the way

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like sorry he's autistic whereas now i'm just like he's autistic like he didn't he doesn't understand

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that i don't apologize for it anymore yeah because there is literally nothing to apologize for

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no that does come with confidence doesn't it it does it's taken me what four four years to get to

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this point but yeah and i'm kind of i'm very proud of that and i'm very proud of i am the person to

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speak up now and if that means that i do it via t-shirts for you to wear i'll do it and on social

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media too like you're like a good presence a really good positive and but raw and honest

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presence on social media and i think there's you have to be both don't you yeah um and i feel like

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yeah i feel like you do that really well it's all i wanted to do um you do have to show the ugly

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is the reality sometimes that actually it was cracked today yeah i will show all the high

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eyes absolutely i'll show all the highs but i also want to be real and not everything is

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butterflies and rainbows it's not yeah and you want to people won't understand the journey and

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the successes if they don't see the whole picture um yeah and uh they won't be able to relate to you

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if they feel like every day yeah i mean she doesn't actually know like the struggles that

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we've had you know if you've had a really hard day that could be quite hard to watch

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yeah i suppose it's just finding that balance but also finding the balance between like privacy and

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like how much do you share how much do you put yourself out i guess i guess you're just finding

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that out as you go really i'm winging it absolutely winging it and i had another business that because

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i'm now so busy with this i've closed my other business and i can focus solely on this i can

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throw my absolute all into it and i can be at home with my kids and if it's picking up from school i

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just go i just go get them i i'm very very fortunate that i have that opportunity now

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whereas working nine to five i would never have that opportunity no also and you're not it's what

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you're putting into the world as well like if you're a legacy and what you're putting into the world

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is positivity support confidence community like you can only go to bed happy with what you've

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become out in the world exactly and i think sometimes i think oh my god there's so much

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more i could have done today or oh my god that meltdown was awful and he's gone to bed so upset

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and i'm actually there's nothing more i can do i've done my absolute best and as long as you do

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your best and you're still being semi-positive about it then yeah like you say what more can you

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do yeah sometimes your best is different on other in on different days isn't it sometimes your

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best is like no spoons yeah the spoons exactly exactly the spoons sometimes you've got 10 spoons

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and you give it all and sometimes you've only got two and you still give it all yeah and that's still

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giving you yeah i still give my everything and it just might be less than i gave yesterday but

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that's because you got up at three o'clock this morning so exactly i've got no energy to exactly

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because we're human and i feel like i mean god all parents beat themselves up anyway like

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regardless of like what your children are or what they know whatever all parents are awful at that

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yeah but a new and emerging child it just seems to be this massive weight of pressure like pressure

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doesn't it and i suppose that's what the community can also give is that like you got it it's fine

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like you're good it's all good it doesn't matter if you think you've done a crap day today actually

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your kids are fed they're in bed they've got clean pajamas on like they're fine i want to

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tell you this lovely quote actually if you're worried that you're not a good enough mom

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that's because you are yeah because no not good enough moms worry if they're a good enough mom

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or not absolutely yeah you're fine i've seen someone um coming and i think it's quite prevalent

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maybe and it's not something i even thought that we'd talk about i think it's important

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and christmas is her favorite time of year but since coming to terms with lola's diagnosis she

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really struggles with christmas now christmas obviously it's built up with so much right it's

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built up so much to be so magical yeah and sometimes with an autistic child it still is

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but it is in their own way so we don't wrap ajay's presents because wrapping unwrapping presents

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is way too much if something needs batteries in i'll take it out the packet i'll make sure

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the batteries are in it so that he can use it there and then when he goes downstairs his sisters

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will still unwrap everything and be really excited and that's absolutely fine but if he wants to take

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his toys and go into our room that we've made that's like a sensory room he can do that because

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that's where he's safe that's where he wants to be if the girls are too excited and screaming

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and shouting about their presents that's fine and we do things differently now than we ever thought

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we would do so we book we've booked like a sensory light trail this year that we're going to take him

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on and we're not hyping it up that he has to walk around in his wellies in the cold we're going to

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sit him in his buggy where he'll be happy and he can look at all the lights and we've looked at doing

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like a sensory santa session but i just think taking him in taking him into a new place and

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getting him to stand next to someone that's got a big fake white beard on so we just alter the way

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that we do things it's still magical and when you see their little faces light up because they've

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got new toys you get the same thing yeah i mean the quote comes to mind different not less and

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that's not just about the child is it sometimes we forget that actually the day is different

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yeah it's not less and actually it will be a far more enjoyable day if you're led by them yeah

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00:38:36,880 --> 00:38:43,600
yeah yeah and if you go off him and if he doesn't want to sit at the table which he doesn't he hasn't

378
00:38:43,600 --> 00:38:48,480
done for a while now because we also have an arfyd diagnosis but if he doesn't want to sit at

379
00:38:48,480 --> 00:38:52,960
the table and he doesn't want to join in with everyone around the christmas table that's fine

380
00:38:52,960 --> 00:38:57,520
if he wants to be in the same room as everybody we can still see him he can still hear everyone

381
00:38:57,520 --> 00:39:03,600
else talking he's here he's still with us and that's that's where the acceptance comes in as

382
00:39:03,600 --> 00:39:10,800
well because i mean of course like we're both very accepting like that comes through everything

383
00:39:10,800 --> 00:39:18,320
yeah but it's also accepting what isn't and what is yeah and it's like in every second it's almost

384
00:39:18,320 --> 00:39:25,040
like again a muscle that you have to exercise isn't it acceptance like okay you you do you you

385
00:39:25,040 --> 00:39:29,600
sit where you sit if you want to go and climb up to the highest bit of the place then where it's

386
00:39:29,600 --> 00:39:35,440
empty and no one's there off you go yeah yeah yeah and there'll be not all sorts of parents

387
00:39:35,440 --> 00:39:41,760
this is that i think you'll be assured by them of knowing your child isn't it yeah i've known

388
00:39:41,760 --> 00:39:49,440
um one of my teachers had a autistic uh teenager and um he had ADHD as well and um he really

389
00:39:49,440 --> 00:39:54,320
struggled with the not knowing what he was going to get the christmas yeah so she laid it all out

390
00:39:54,320 --> 00:40:00,080
in her bedroom he couldn't use it yet because you know every day he would go in and he would know

391
00:40:00,080 --> 00:40:04,640
exactly there was no question of will i won't i if i'm good if i'm bad there was none of that

392
00:40:04,640 --> 00:40:11,280
nothing no lv nothing no just you are getting this on the 25th yeah regardless but you're not

393
00:40:11,280 --> 00:40:16,880
touching it yet yeah but it's going to be on the 25th and then you go in and he accepted that then

394
00:40:16,880 --> 00:40:22,400
because there was no surprise it was predictable there was no if you're good if you're good

395
00:40:22,400 --> 00:40:27,920
it's not you you are you're gonna it's christmas we're making it magical for everybody there's no

396
00:40:27,920 --> 00:40:32,880
if you're good if you're bad i mean his sisters won't get any presents i hate that with any

397
00:40:32,880 --> 00:40:38,560
child anyway so it's christmas we all get presents we're not being spoiled we're not having

398
00:40:38,560 --> 00:40:44,880
extravagant christmases we're just doing little presents we've all got a little pile each aj's

399
00:40:44,880 --> 00:40:48,960
might be a bit bigger because his toys are bigger because they're sensory toys they light up they

400
00:40:48,960 --> 00:40:54,880
do loads of extra things but actually you've all got the same just different um yeah and every

401
00:40:54,880 --> 00:40:59,200
child would have different um you mentioned he had arfids events obviously for people that don't know

402
00:40:59,840 --> 00:41:09,840
avoidant restrictive food intake disorder yeah and obviously that has impact on daily life

403
00:41:09,840 --> 00:41:13,840
yeah and christmas as well because there's those expectations around christmas yeah

404
00:41:13,840 --> 00:41:18,640
that everyone has i'm not partaking in eating all the brussels sprouts and everything else

405
00:41:18,640 --> 00:41:24,720
if he wants to sit and eat his oat bars which is what he eats at the minute that's what he's

406
00:41:24,720 --> 00:41:31,040
eating for christmas day yeah if my girls don't want to eat turkey or gammon on all the trimmings

407
00:41:31,040 --> 00:41:34,800
and roast potatoes they want to eat chicken nuggets and waffles that's what they're eating

408
00:41:34,800 --> 00:41:39,440
on christmas day yeah and i feel like having that community of people whether it's on social media

409
00:41:39,440 --> 00:41:45,360
at the school gate on your phone in whatsapp whatever yeah just having people that are also

410
00:41:45,360 --> 00:41:52,560
having chicken nuggets for christmas dinner it's like yeah and if it's if it's going to make

411
00:41:53,520 --> 00:41:59,520
that many making adaptions to your day to be like oh well they have to eat this and they have to do

412
00:41:59,520 --> 00:42:03,120
this and they have to unwrap their presents if it's going to make your child uncomfortable

413
00:42:03,120 --> 00:42:08,880
don't do it yeah or miserable and then ultimately it makes your day miserable yeah because i think

414
00:42:08,880 --> 00:42:14,000
it can be so easy can't it to watch the adverts look at social media and you're assuming that

415
00:42:14,000 --> 00:42:20,240
everybody is having the most wonderful day or most wonderful time and they're seeing santa and

416
00:42:20,240 --> 00:42:24,960
they're visiting this place and they're having like christmas dinner all sat down all perfectly

417
00:42:24,960 --> 00:42:30,960
yeah you know what firstly that's never happening because you only only share the good no but also

418
00:42:30,960 --> 00:42:36,000
there definitely is so many neurodiversion families out there but it's completely not that at all

419
00:42:36,000 --> 00:42:41,360
no and if they don't want to get out of their pajamas we don't need to get dressed up i'm

420
00:42:41,360 --> 00:42:45,840
probably not getting out of my pajamas on christmas day i'm not leaving my house so they need to dress

421
00:42:45,840 --> 00:42:52,880
up i'm going to be covered in bits of food that i've been making all day or bits of sellotape

422
00:42:52,880 --> 00:42:59,280
where they've like stuck it to me like it's you make christmas what you want to make it and that's

423
00:42:59,280 --> 00:43:06,160
since becoming an autism mom i've probably realized that to say no to oh well let's go out for

424
00:43:06,160 --> 00:43:11,440
christmas day let's all let's book a table in a restaurant no no i've got that's my idea of hell

425
00:43:12,560 --> 00:43:18,400
like yeah that's so true isn't it that when you work with children um because they're so good at

426
00:43:18,400 --> 00:43:22,800
advocating for themselves like if they don't want to do something yeah like they are not doing it

427
00:43:22,800 --> 00:43:27,600
and that does come on to you doesn't it like i'm so much better at saying no and advocating for

428
00:43:27,600 --> 00:43:34,800
myself now yeah having since worked yeah we're talking that every day fake for you to think oh

429
00:43:34,800 --> 00:43:39,520
actually going to a restaurant and trying to sit around a table and getting all of my children to

430
00:43:39,520 --> 00:43:46,080
sit and be quiet that doesn't sound like a good time so if it means that i have to stay at home

431
00:43:46,080 --> 00:43:50,400
where he's comfortable where he can watch tv all day he can be on his ipad all day he can play with

432
00:43:50,400 --> 00:43:56,480
new toys he doesn't have to go anywhere where he feels unsafe or uncomfortable i'm not putting him

433
00:43:56,480 --> 00:44:02,240
or myself in that position yeah and i think a few of my friends and like family and stuff like that

434
00:44:02,240 --> 00:44:10,640
have think that i have my backup about it and i don't i'm just making situations less stressful

435
00:44:10,640 --> 00:44:17,280
for everybody because he gets stressed i get stressed i get snappy at people i argue in and

436
00:44:17,280 --> 00:44:24,160
it just ends up absolutely awful yeah so so it's better to just not yeah it's better to just not go

437
00:44:24,160 --> 00:44:30,400
out someone said um her little boy spent most of christmas last year in his bedroom in his bed on

438
00:44:30,400 --> 00:44:36,560
his tablet it made me sad but he was happy and i think that and i think yeah sometimes it's

439
00:44:36,560 --> 00:44:42,240
acceptance it's not acceptance doesn't mean you're okay with it yeah and you can feel sad the person

440
00:44:42,240 --> 00:44:47,280
that feels worse about them being in their bedroom is you they're not bothered yeah they're happy

441
00:44:47,280 --> 00:44:51,280
they're not being bothered by anybody there's probably people in your house that actually he

442
00:44:51,280 --> 00:44:54,880
doesn't want to talk to he doesn't want to socialize with so i'm just gonna go up there's

443
00:44:54,880 --> 00:45:00,560
where it's quiet and no one's bothering me and actually like if we could allow ourselves to

444
00:45:00,560 --> 00:45:10,480
i'd be doing that more often yeah yeah yeah it's so true it's so true um okay about arford then

445
00:45:10,480 --> 00:45:13,760
we've got sort of a couple of questions that come into that because i've spoken about it too

446
00:45:13,760 --> 00:45:20,160
lot um on my account i have got one people in my class with arford um but new to me this september

447
00:45:20,160 --> 00:45:26,320
so it's quite a new thing yeah it's very very new to us um he's always been really really restricted

448
00:45:26,320 --> 00:45:32,880
with his eating and when we like look back now from him being nine months old from the minute i

449
00:45:32,880 --> 00:45:38,000
stopped breastfeeding um he was always really picky with his food very sensory don't like

450
00:45:38,000 --> 00:45:43,840
wet food spaghetti bolognese anything that's like that would make him gag and still does to this day

451
00:45:43,840 --> 00:45:50,640
um but he would eat certain things and would like touch certain foods and then he's just

452
00:45:50,640 --> 00:45:57,760
they call it like food jagging where they drop foods and we've kind of dropped that many things

453
00:45:57,760 --> 00:46:04,720
now that we only have four foods that we do eat um so he's very very stressful and at the minute

454
00:46:04,720 --> 00:46:14,800
he only eats in school he won't eat at home so it's very environment-led um we've tried to replicate

455
00:46:14,800 --> 00:46:19,360
it at home but we're never gonna it's never hard isn't it because of course you want to control

456
00:46:19,360 --> 00:46:24,960
that because because you're i mean i've got i can imagine a mother's you know you want to keep your

457
00:46:24,960 --> 00:46:31,120
baby alive right and the the fundamental thing of that is sustenance and nutrition and food and um

458
00:46:31,120 --> 00:46:38,400
and um and him only accepting food at school i would really struggle with that it's terrifying

459
00:46:38,400 --> 00:46:42,320
oh my god if something happens like i can't control that environment if something happens there that

460
00:46:42,320 --> 00:46:49,680
stops that he's not gonna eat he was getting um when we first started back in september there's

461
00:46:49,680 --> 00:46:55,200
a few new children in his class like some have moved up up at it's not a year is it is at level

462
00:46:55,200 --> 00:47:02,320
um and so there's new children in his class and one of them we don't know but one of them was biting

463
00:47:02,320 --> 00:47:08,640
him and it was consistently he was bit three weeks in a row and it was i got to the point with school

464
00:47:08,640 --> 00:47:15,680
i said if he continues to get bit and that affects the fact that he eats in school we lost food so

465
00:47:16,480 --> 00:47:20,560
there was a big thing put in place about that and thankfully he is still eating in school

466
00:47:20,560 --> 00:47:27,040
um but it's we're now in talks with ot i've had a big meeting today about ways that we can make

467
00:47:27,040 --> 00:47:35,200
him comfortable trying to get food in him at home or food in him at respite or food in him at the

468
00:47:35,200 --> 00:47:42,160
park or right where else that we can go because at the minute it's like school is a lot of pressure

469
00:47:42,160 --> 00:47:50,240
on school isn't it yeah and it's so easy for that environment to change because yeah even the adults

470
00:47:50,240 --> 00:47:55,600
i mean i know with 10 children in the room or even five children like in here is you can't control

471
00:47:55,600 --> 00:48:02,640
those five children so something could happen so easily or an adult is off that week yeah and that's

472
00:48:02,640 --> 00:48:07,600
what we've had the talks today and usually he sits with one certain member of staff and we've said

473
00:48:07,600 --> 00:48:13,440
okay so that needs to change because if that member of staff off say yeah he won't eat right yeah so

474
00:48:13,440 --> 00:48:19,120
we there's loads of different measures in place now his teachers come and try and do some bits at

475
00:48:19,120 --> 00:48:25,200
home as he he will eat at home with his safe teacher if i'm not there or if i'm there so

476
00:48:25,200 --> 00:48:31,520
there's loads of different ways that we need to do it but we've going back like a few years ago from

477
00:48:31,520 --> 00:48:37,520
when he's eating really really deteriorated we do think some of it is quite trauma-based

478
00:48:37,520 --> 00:48:44,320
and that's just from like i lost my mom who lived with us daddy worked away his new baby sister was

479
00:48:44,320 --> 00:48:50,560
born there was three massive changes all within 10 weeks and it was like because it's controlling

480
00:48:50,560 --> 00:48:56,800
isn't it like eating disorders comes from a need to control your environment now even if he has or

481
00:48:56,800 --> 00:49:03,520
hasn't been through trauma like even if that isn't the reason autistic people in a world not built

482
00:49:03,520 --> 00:49:10,320
for them yeah will need that kind of control that they'll they will seek that and food is a really

483
00:49:10,320 --> 00:49:16,560
easy one to get that on to because it's one of the only things they have nutrition said when he when

484
00:49:16,560 --> 00:49:22,000
he first because it's picky eating at first that's how they like to see it at first um oh well it's

485
00:49:22,000 --> 00:49:26,480
just the only thing that he can control he can't speak to you yet it's the only thing he can control

486
00:49:26,480 --> 00:49:32,160
what he's putting in and out of his mouth yeah okay but then two years down the line we're at

487
00:49:32,160 --> 00:49:37,440
the point we've got about it he lost three he lost just over a kilo over the summer holidays because

488
00:49:37,440 --> 00:49:44,480
he's stopped eating and drinking completely oh yeah school holidays so start eat finish for the

489
00:49:44,480 --> 00:49:49,920
six weeks holidays and bam food went so you're making plans already for christmas i can imagine

490
00:49:49,920 --> 00:49:55,120
yeah i'm like okay so we've got three weeks coming up at christmas what's happening now yeah yeah so

491
00:49:55,120 --> 00:49:59,680
we've got things in place now starting from tomorrow we're doing like a food diary of what he

492
00:50:00,240 --> 00:50:04,880
definitely eats in school and if he's not eating a certain thing then we need to try something else

493
00:50:04,880 --> 00:50:10,880
we need to try eating in a different place so that he's not eating in the same table there's so many

494
00:50:10,880 --> 00:50:17,120
different things when you think about it that of course yeah actually oh yeah i didn't i didn't

495
00:50:17,120 --> 00:50:21,600
think about it like i like just with a lot with autism there's lots of behaviors that look like

496
00:50:21,600 --> 00:50:30,400
this that rigid yeah hard to change behavior but some of it isn't as crucial and as important as

497
00:50:30,400 --> 00:50:35,280
eating right yeah if they don't brush their hair they don't clean their teeth yeah okay that's

498
00:50:35,280 --> 00:50:41,280
yeah not great but but food is it's another level isn't it i wonder if that's why it has its own name

499
00:50:41,280 --> 00:50:49,280
because yeah it kind of so it's different as there is so little knowledge of it so our dietitian with

500
00:50:49,280 --> 00:50:54,720
the nhs has admitted she just doesn't have enough knowledge of it i've heard this a lot before as

501
00:50:54,720 --> 00:50:59,040
well and lots of people are struggling to get a diagnosis because there is people in their local

502
00:50:59,040 --> 00:51:05,600
area yeah and they don't because there isn't enough knowledge and because it is quite mental

503
00:51:05,600 --> 00:51:13,280
health based which is really hard to say for a six-year-old child but it is he's he's gone

504
00:51:13,280 --> 00:51:19,840
through trauma he's trying to control his environment his brain is doing that to him it's not as simple

505
00:51:19,840 --> 00:51:23,680
as saying oh we'll just take him to mcdonald's and he'll eat some chicken nuggets he won't

506
00:51:23,680 --> 00:51:29,040
he will literally starve himself yeah this is the problem as well as i've had children they have

507
00:51:29,040 --> 00:51:33,600
worked like those are fit but they definitely were like in the past you know i've had a boy

508
00:51:33,600 --> 00:51:38,800
that he would just eat rich tea biscuits like that yeah yeah i'm diagnosed autistic like it definitely

509
00:51:38,800 --> 00:51:45,680
was looking back i didn't know at the time but it definitely was lots of people would say to me and

510
00:51:45,680 --> 00:51:53,120
his mom that oh well if he's hungry really really eventually he wouldn't have done it absolutely

511
00:51:53,120 --> 00:52:02,480
wouldn't i can tell you categorically he would not yeah he would say anything else yeah yeah

512
00:52:03,520 --> 00:52:09,200
because the thought of like if i walk towards a towards ajay with like a bowl of food a food

513
00:52:09,200 --> 00:52:13,840
that's his safe food that he will eat in school if i walk towards him in my house with it you can see

514
00:52:13,840 --> 00:52:18,160
the panic in his face he doesn't want to eat that that's not safe i'm no you're not coming

515
00:52:18,160 --> 00:52:23,200
near me with that and he will push it away i've had bowls of like strawberries and blueberries thrown

516
00:52:23,200 --> 00:52:29,920
over my living room because i don't want to eat that that's not no yeah and even um if it is the

517
00:52:29,920 --> 00:52:34,000
right food if it is the right plate if it is the right cup the right environment then someone sits

518
00:52:34,000 --> 00:52:39,920
next to you with a food you don't like or a smell you don't like yeah i'm not eating that yeah yeah

519
00:52:39,920 --> 00:52:44,560
you've looked at me the wrong way actually you're watching me while i'm trying yeah and that yeah

520
00:52:44,560 --> 00:52:53,920
yeah yeah so it's it was really really hard and we only kind of got the diagnosis on our

521
00:52:54,880 --> 00:53:00,240
third or fourth trip back to we have open access to the children's ward now for when he does stop

522
00:53:00,240 --> 00:53:05,840
eating and drinking because we are supplementing him with shakes now when he does stop everything

523
00:53:05,840 --> 00:53:11,200
all together and obviously a couple of weeks ago he had chicken pox so they were all around his mouth

524
00:53:11,200 --> 00:53:16,320
and in his mouth so he stopped drinking so then we ended up back in hospital and then that's what

525
00:53:16,320 --> 00:53:23,520
i said to his pediatrician can i have it put on paper yeah this is what it is because the minute

526
00:53:23,520 --> 00:53:32,720
i have a label i don't get more help but i have an explanation of yeah that's right that's right and

527
00:53:32,720 --> 00:53:38,720
you get taken more seriously ultimately by a medical professional yeah and then that's on his

528
00:53:38,720 --> 00:53:43,600
record for life as well someone said what is your advice for a child who refuses to eat anything

529
00:53:43,600 --> 00:53:47,920
other than snacks at school parents have been sending in what he eats at home nothing

530
00:53:48,720 --> 00:53:55,840
and we i can speak for school and kids can eat whatever whatever they whenever in whatever order

531
00:53:55,840 --> 00:54:01,280
there's none of this sandwich first thing then dessert i suppose you know the child you know

532
00:54:01,280 --> 00:54:06,880
the child right like we're we're talking about autistic children that are incredibly rigid and

533
00:54:06,880 --> 00:54:11,840
controlling over their food and may not eat that's what that's when we're saying accept anything

534
00:54:11,840 --> 00:54:18,640
yeah what we're not saying is a child that can eat perfectly like well it's a very diet just wants

535
00:54:18,640 --> 00:54:24,160
their 10th bag of crisps okay yeah maybe not like maybe encourage other foods maybe encourage variety

536
00:54:24,160 --> 00:54:28,640
of course yeah model you eating i don't think we do that very well at school yeah because the staff

537
00:54:28,640 --> 00:54:32,640
go and have their lunch break separately or the staff go have their snack separately yeah because

538
00:54:32,640 --> 00:54:37,680
you need a break but actually eat in front of the children they're not seeing that modeling of eating

539
00:54:37,680 --> 00:54:42,400
different foods and stuff so yeah that's something to add to about school yeah in the meeting today

540
00:54:42,400 --> 00:54:48,560
she said i do eat in front of the children because i want them and then they all have so aj still has

541
00:54:48,560 --> 00:54:53,440
the red tray of his school dinner put in front of him regardless of whether he eats it it's still

542
00:54:53,440 --> 00:55:00,400
putting in front of him everything and if he doesn't eat it and it's pasta she said chances are i'll take

543
00:55:00,400 --> 00:55:07,600
a few bites out of it to be like look it is edible it's food yeah yeah that's right yeah it shows him

544
00:55:07,600 --> 00:55:12,560
but we haven't given up on him we we have the expectation of you we believe in you that you

545
00:55:12,560 --> 00:55:19,360
will do this one day but no pressure at all yeah but we just can't get him to eat at home which is

546
00:55:19,360 --> 00:55:27,200
terrifying it's that really is yeah so we we're winging it one day at a time and as long as we

547
00:55:27,200 --> 00:55:33,200
get his shakes into him which is essentially his calories which we're buying off our own back he

548
00:55:33,200 --> 00:55:39,440
won't drink the prescribed ones anymore i think he's fed up of them they taste funny um we're just

549
00:55:39,440 --> 00:55:45,680
doing what we can yeah and like we said at the beginning like that has to be enough like yeah if

550
00:55:45,680 --> 00:55:50,560
you've got one spoon if you want to drink shakes all day on a saturday and you don't want to eat

551
00:55:50,560 --> 00:55:58,080
them that's absolutely yeah in fact yeah we it's more than fine we will be praising for it because

552
00:55:58,960 --> 00:56:06,320
then yesterday he requested grapes on his aac and requested strawberries a couple of hours later so

553
00:56:06,320 --> 00:56:10,720
we ran and got a bowl of grapes and we ran and got a bowl of that's another great thing about

554
00:56:10,720 --> 00:56:16,160
that tablet right is that there's all those options always available at all times yeah you

555
00:56:16,160 --> 00:56:21,120
just have to wait for us in we don't have to wait for you to guess or that you think the company he

556
00:56:21,120 --> 00:56:26,240
can ask yeah that's really out of the blue he was like playing on his ipad and then he looked at his

557
00:56:26,240 --> 00:56:31,760
aac pressed a few buttons and they're grapes grapes grapes grapes so i ran and got a bowl of grapes

558
00:56:31,760 --> 00:56:35,840
and yeah i might have had to almost force the first one in his mouth but then he ate

559
00:56:36,400 --> 00:56:42,160
two halves of a grape and i and i have to like test so he's at three like one and a half i know it's

560
00:56:42,160 --> 00:56:48,240
so like thinking about that sense of control having his tablet will give him that sense of control

561
00:56:48,240 --> 00:56:52,720
won't it because he can choose what food is in the house he can choose what he thinks is eating

562
00:56:52,720 --> 00:56:58,000
whereas maybe before he wasn't able to have that control and we're kind of we're batting blind and

563
00:56:58,000 --> 00:57:01,520
we're like offering him this and we're offering him an oat bar and actually he doesn't want an

564
00:57:01,520 --> 00:57:06,080
oat bar i don't want it now because you're asking me to do it i don't see you're doing that demand

565
00:57:06,080 --> 00:57:13,520
from me i don't know i don't want it whereas with the tablet he's in full control he's got the say

566
00:57:13,520 --> 00:57:20,480
of what's happening and when yeah and it's his choice yeah yeah i think yesterday when he ate

567
00:57:20,480 --> 00:57:24,880
the grapes i stood in front of him and i said to his dad don't say anything don't even look at him

568
00:57:25,840 --> 00:57:31,120
don't look at him but i thought don't acknowledge it and he uh i think he ate two grapes yesterday

569
00:57:31,120 --> 00:57:35,600
so like four halves of grapes and we were like that's the most that's the most he's ate in 17

570
00:57:35,600 --> 00:57:41,760
weeks at home amazing it's amazing it's huge isn't it and i feel like he's got his own back

571
00:57:41,760 --> 00:57:47,280
yes and i think that's the point isn't it yeah and you having the tablet might be perfect timing

572
00:57:47,280 --> 00:57:53,680
in the lead up to christmas that like he can start trying out his voice finding that ownership again

573
00:57:53,680 --> 00:57:57,120
i'm so pleased that you're sharing your story because i'm really excited to

574
00:57:57,760 --> 00:58:04,720
to experience the start with you it really feels like the start yeah and it's it's still new and

575
00:58:04,720 --> 00:58:11,200
we're still when we're trying to think oh actually we need to click car and then school and it's all

576
00:58:11,200 --> 00:58:15,520
on different pages and you're like oh my god where is it and you're like fumbling trying to find a

577
00:58:15,520 --> 00:58:21,920
lot isn't it like when you're doing you're like oh god you are really good at this yeah yeah yeah

578
00:58:21,920 --> 00:58:26,480
so we're still trying to do it and we can edit the pages so we've got things where they need to be

579
00:58:26,480 --> 00:58:33,120
and stuff like that but it's yeah it's hard it is hard and that's a new language it is it's like

580
00:58:33,120 --> 00:58:38,400
learn yeah it's like learning a new language and trying to find it and then him doing things just

581
00:58:38,400 --> 00:58:44,000
off the off the bat and we're like what you want your strawberries okay yeah you can have some

582
00:58:44,000 --> 00:58:49,680
strawberries and then like yesterday in the bath i pressed brush teeth and we can never ever get

583
00:58:49,680 --> 00:58:54,320
into brush his teeth ever i pressed brush teeth and i must have pressed it about four times

584
00:58:54,880 --> 00:58:59,200
brush teeth so i said yes yes brush teeth yes brush your teeth gave him his toothbrush and he

585
00:58:59,200 --> 00:59:05,680
looked at it as if to be like what is that what was this and i was like brush teeth he brushed his

586
00:59:05,680 --> 00:59:14,640
teeth so it's like you know how to do this you know you are clever enough to do it but we've

587
00:59:14,640 --> 00:59:19,520
just never given you the opportunity as well if he does have a bit of a pda profile the fact that

588
00:59:19,520 --> 00:59:26,480
the tablet is telling him to do it and not you yeah it's also a really great way yeah oh if i get

589
00:59:26,480 --> 00:59:32,640
if i press brush teeth and then i get him to press brush teeth you've actually done that not me yeah

590
00:59:33,920 --> 00:59:38,000
if you don't have an expensive ipad or app sometimes just writing on a whiteboard

591
00:59:38,000 --> 00:59:42,480
because the whiteboard is telling them to do it rather than you is it really does help there's a

592
00:59:42,480 --> 00:59:48,720
few um companies that i was going to look at and obviously you have your stuff that you can all

593
00:59:48,720 --> 00:59:53,840
print off you can stick your visuals to and stuff like that which is a really good way to start

594
00:59:53,840 --> 00:59:58,560
using it and i think when you do get your child into i think quite a lot of mainstream schools

595
00:59:58,560 --> 01:00:02,960
do it now but when you get them into like a specialist provision visuals are key and they're

596
01:00:02,960 --> 01:00:10,880
usually so much like it was completely new to us when he first started and we had no idea and i was

597
01:00:10,880 --> 01:00:14,160
like what do you mean he's using these little pictures what do you mean he's using this this

598
01:00:14,160 --> 01:00:19,200
little bowl or this little pile of beans that says more like what do you mean and she's like

599
01:00:19,200 --> 01:00:25,520
and she's like yeah he uses it and i'm like no he doesn't there's no way he does but he does and

600
01:00:26,240 --> 01:00:31,760
with when they go to school and it's used consistently because the teachers are trained

601
01:00:31,760 --> 01:00:39,680
to do it and it's just off it's second by their peers yeah it's second nature to teachers and

602
01:00:39,680 --> 01:00:45,120
also not only that but that we don't understand them as well as you understand them no so the

603
01:00:45,120 --> 01:00:49,920
children have to work harder they have to use the symbols and sign and and read because we don't

604
01:00:49,920 --> 01:00:54,480
understand what they mean yeah so we'd be like oh actually what you want a snack okay well we'll

605
01:00:54,480 --> 01:00:59,680
just go and get that's no judgment at all it probably just works differently you understand

606
01:00:59,680 --> 01:01:05,360
his little looks his little eyes his little his hand gestures or whatever just for time of day

607
01:01:05,360 --> 01:01:11,840
you'll know what he wants whereas you kind of no you need to tell me because i don't know yeah

608
01:01:11,840 --> 01:01:19,120
yeah and then they do they learn how to use them and i think if he hadn't have had the physical

609
01:01:19,120 --> 01:01:24,080
visuals because they use the now and next board and there when he's eating they put a picture of

610
01:01:24,080 --> 01:01:29,600
his physical food on the board and they used like finished something else and more i think

611
01:01:30,320 --> 01:01:36,080
um i think if he hadn't have done that i don't think he would have worked as well with the aac

612
01:01:36,080 --> 01:01:42,320
maybe not as quickly yeah yeah yeah because he's he's learned that pictures meet have meaning

613
01:01:42,320 --> 01:01:48,880
yeah through that hasn't he when he first started school he would only work to actual pictures so

614
01:01:48,880 --> 01:01:54,880
when a picture of his actual classroom rather than the classroom symbol whereas over the last year

615
01:01:54,880 --> 01:01:59,840
they've kind of whenever they've showed him the picture they've shown him the symbol as well so

616
01:01:59,840 --> 01:02:08,000
it's been so much work for school and i think we take that for granted that he does so much in

617
01:02:08,000 --> 01:02:14,160
school that when he gets home he doesn't want to do it yeah yeah because that's his respite right

618
01:02:14,160 --> 01:02:19,760
it's almost like you being like on your nine to five yeah and then coming home and people saying

619
01:02:19,760 --> 01:02:27,440
well come on then and he's like actually no i don't want to do that no i need my respite and

620
01:02:27,440 --> 01:02:33,600
that's okay too i have to get messages like i'm sure you can imagine from parents saying what

621
01:02:33,600 --> 01:02:40,480
more can i do to like help my child community like just let them rest yeah we've got it yeah

622
01:02:40,480 --> 01:02:45,280
we're doing it and yes of course they're a thing of course there are always things actually respite

623
01:02:45,280 --> 01:02:50,160
is crucial because they need to rest in order to have the energy to in order to learn so do it again

624
01:02:50,160 --> 01:02:56,480
the next day yeah yeah exactly exactly oh it's been such a pleasure speaking to you i'm i didn't

625
01:02:56,480 --> 01:02:59,440
expect this to go down the christmas route but i actually think it's a really important topic

626
01:03:00,400 --> 01:03:06,640
that we don't thank you so much this has been such a pleasure and um yeah and you and um i

627
01:03:06,640 --> 01:03:12,800
yeah i can't wait to see uh his journey i'm really excited take take care and um yeah have a good

628
01:03:12,800 --> 01:03:27,200
evening thank you bye