I would like to introduce you all to Edith in this post. Edith is 10 years old and has a diagnosis of PDA. She lives in Sheffield, UK with her Mum, Dad, younger sister Betty and dogs Rambo and Vera. Edith has been out of school and recovering at home since November 2016. Years of mismanagement of her PDA had led to total school refusal. Edith now wants to return to school and she and her parents are currently battling the LEA for a suitable school placement for her. Funding has so far been refused but the family are appealing the decision. The family have set up a Facebook group for parents in Sheffield who are in a similar position. You can apply to join the group here.
Edith has to be one of the most insightful and self-aware children with PDA that I’ve ever had the pleasure of meeting and getting to know. She’s a bright, kind, articulate and funny girl who has to date raised over £1000 for the PDA Society and you can visit her page here.
This post has been transcribed from a recorded informal interview that she and I had at my house. It’s written in the style it was spoken as I didn’t want to edit it so that perhaps it flowed better because I feared it would lose that realism and honesty. Edith has kindly taken part in this interview to help others better understand PDA and how it might impact on their own children. In this post you will be given the rare insight from the perspective of a child with PDA rather than the usual adults perspective, which is helpful, but it’s all from memory. Edith is living it right now – this is her childhood right now………
Edith wearing her Blue Peter badges. Her silver badge was earned partly for her fundraising
My parts of the interview are in bold and Edith’s responses are in italics. Edith has chosen all the images.
How has the time you’ve had out of school helped you? Well I’m a lot calmer and I’ve had time to kinda recover from all the stress and anxiety that I had at school and all of the demands. So time to like recover and calm down (smiles)
How has learning about PDA helped you? It’s helped me understand myself a bit more and made me more self-aware.
And does that self-awareness then help when you get anxious? Yeah.
Can you describe what a meltdown feels like and do you know when they are coming? Well sometimes I know when they are coming and sometimes it just happens and I’m not that aware that it’s going to happen.
What do you do when you have a meltdown? Well I find it hard to calm myself down and I get really angry and I’ve kinda like stopped getting physical and now I just really shout more when I get angry.
So you’ve learnt to have a more productive meltdown by not being so physical ? Yeah.
What can people do to help you when you have a meltdown? First off some space to calm down, then texting to find out the problem in a non direct way and then a hug when I’m up for it.
So do you think that your relationships, like with Mum and Dad, are better now you’re not at school? Yeah.
When you feel anxious what does it feel like? Well I definitely get more tense. I clench my fists and my jaw goes all tense and it’s like stress and also I sometimes feel a bit sad as well during it.
What sort of strategies at home do you use or Mum and Dad use? When I’ve got something coming up I normally just need to know what’s going to happen so my parents explain it to me and I have to know everything about what’s going to happen. I need to know what’s going to happen so they explain it to me and like I normally get really anxious so I’ll have a hug with Mum or Dad and then afterwardsI normally just feel really good about it and that I did it and then I just watch TV until bedtime. Down time is really good.
When you are feeling really avoidant and you’re not doing anything do you avoid all the fun things as well? Yeah.
Does that piss you off? Yeah it annoys me. I’m like I want to do it but I can’t do it. I get like this weird feeling in my tummy that’s a bit like a tummy ache and I’m like I want to do, oh I can’t do it anymore because I said I’m doing it.
It’s ironic because doing things you enjoy would actually help reduce anxiety. Yeah.
It’s quite funny that we can’t. Honestly there are some days I don’t get dressed and I just sit on the sofa and watch television and I do nothing all day. Yeah I always have those days.
And I think it’s important when we explain PDA to people and we say we avoid demands and everyone goes “oh, I avoid demands” or “I do that” because they avoid all the boring crap. Yeah.
But everyone does that, even us. That’s normal. No one wants to go to the dentist and will put it off and avoid it. No one wants to do the weekly shop.
No one wants to pay a bill they can’t afford but people need to understand that yes we avoid those things like everyone else but we avoid all the good stuff too and that’s when it gets sad. Yeah, I do that you know.
It’s not fair – we shouldn’t have to miss out. Yeah it’s sad.
Now you have a diagnosis of PDA do you feel happy about it? Yeah, because it explains why I’ve been feeling like this.
So do you think a diagnosis is important? Definitely, because it may not be the thing you want to hear but it helps you to understand yourself a bit more….
I just have to say this – this is spectacular. Honestly……wow!
My ‘favourite’ topic is praise – do you like praise? Not particularly no. It makes me feel awkward like should I say thank you, do I even want to. Yeah it makes me feel all awkward.
It’s a very odd thing. Yeah
I’ve tried to put a finger on what it is about praise that is so….. Weird?
I think a part of it is if I say “oh really well done Edith!” I’m kind of implying a demand that you’ve got to do it again and do it just as well or even better. Yeah.
Or it could be that we just find that kind of direct compliment too kind of in your face…a bit too… It’s disturbing.
What do you say when someone says “oh really well done”. Err….(laughs)
And then I want to go and hide under a rock! (Edith laughs)
I think people should just say “cheers” or something like that. Or a thumbs up.
Yeah and I don’t like it when people clap. Oh no. It’s like, number one it’s another type of praise and number two it’s too loud. It gets in your ears.
So your last school, what was it that you found that was a problem and what were they doing that was wrong? I enjoy maths and English and all of that, it’s just the way it’s taught to be honest and also the environment and all of that. It’s really noisy and busy. It’s got about 525 children in that school. Don’t expect me to go there.
So too big and the way they taught? Yeah, and very demanding.
So did they use more typical ASD strategies like rewards? They didn’t really do anything like that which was good because I don’t like them.
So were you like in a typical class and did you have any support? Not really. Well they did when I got my diagnosis. They did start to do a bit extra like they got a little tent so that if I needed timeout I could go into the tent in the stock cupboard! (We both laugh together)
Lovely! I know!
Let’s put Edith in the cupboard! (Laughs) And also like because it’s a stock cupboard it’s where people store things so teachers go in all the time to get stuff. Keep popping in and out. I’m trying to have private time.
That’s crazy! The whole of point of timeout is that you have space and time alone. Yeah…..(we both laugh) but when I started refusing to go. They did have a thing in the hive where all you did was sit around all day and got bored out of your mind and people came in who had like different things so you had this group that was so demanding as well. It was like “right we are going to do this today” and I was like no. So it didn’t fully help.
Do you have problems making and keeping friends? Oh yeah I’ve always had problems with like friendships. Yeah I always…..I remember this particular big argument with me and my best friend and we just having a laugh and she jumped in a big puddle that she was not allowed to because there were cones around it and I said you look like you’ve wet yourself several times and she didn’t like that too much so she hit me so then we got into a massive argument, everyone was crowding around and we were just screaming at each other and then we just went off and like…to be honest I don’t really stop because with friends you think you can have a laugh and they won’t mind but when they actually do mind you think that they might just be a bit sarcastic or you’re not sure when they kidding or when they’re not because my friends are quite good at being liars. So yeah that then caused like trouble because I then misread what she was saying, which caused trouble. I’ve always had trouble with friends. Always had arguments. I remember this birthday party…..oh it went awful. It was my 9th birthday party and I invited some of my friends and I threw like a crazy string can at my friend and it hit his arm and I told another friend to piss off and I just got so stressed and I regretted it like so much but they all forgave me and like it was kind of like quite good.
Well it’s good that they understood. Yeah my friends are understanding. They are silly but they can be understanding.
So do you think that what happened at your birthday party was it because the whole big party thing was just too much? Yeah. My 10th birthday party was amazing! We went to this nice pretty make up/hair and nails salon and we got our hair, makeup and nails done and it was just me and my best friend and then we just went to a restaurant with my grandparents, my parents, her and my sister Betty and then she stayed for a sleepover and it was like perfect. I didn’t have a single part where I wanted to have timeout and it was really good.
So smaller is better? Yeah definitely. A smaller group of friends is really good but then if you feel guilty about not inviting everyone then just invite them round for tea another day – they’ll forgive you about leaving someone out.
I don’t know, when I was a kid there was never that that rule that you had to invite the whole class so you just invited the people you liked. (we laugh). I think we should go back to that personally because I wouldn’t want to have a party with 30+ people. Oh no. No thank you. I don’t want that. You always seem to have a kid in your class that you don’t like or even 5!
People say “oh it’s unfair” but I say that the dislike will be mutual so then you won’t get invited to their party either so then it’s fair. Yeah and if you did get invited then just turn them down! (laughs) you know, it’ll be fine.
Okay I chose this photo! This is the cake Edith made all by herself for our interview/lunch 💜
You were saying how you felt guilty after you threw the can at your friend, do you say sorry to people or just leave it? Yeah I say sorry. Sometimes I just say “soz” so that it’s not that much of a demand because soz is quicker and you can just get away.
That counts. Yeah exactly. It’s got the “s” and the “o” in it! (laughs)
Do you feel empathy? Yeah I do. Can’t show it all the time but feel it. People show it differently.
Do you pick up on people’s feelings too, like their moods? Yeah sometimes. I feel bad sometimes.
As we’ve said you are out of school at the moment so what kind of things do you fill your day with? Erm sometimes I draw. Mainly because I’m out of school there’s nothing to do so I normally just sit around watching TV all day – so boring. Oh I’ve seen that one already….oh and that one….and that one too!
You should try doing it for 30 plus years! (Edith laughs) You’ve seen everything! There ain’t nothing that’s been made you haven’t seen at least 8 times! (Edith laughs)
Can you see yourself going back to school? Yeah. I can just imagine myself with friends at lunchtime and having a laugh. Inviting them to my house for tea. I really want that. I’m sad that they’ve said no.
Mum and dad are working on that. Yeah (smiles)
Where do see Edith in say 10 years? I’m hoping that I’ll be at university or something like that or already an illustrator. I really want to be an illustrator when I’m older.
So you want to be an illustrator so do you see yourself working for yourself and being your own boss? Yeah definitely. Yeah no ones going to boss me around! (laughs)
I’d like to see them try! I know!
If they do, can I watch? (Edith laughs and nods)
Can you tell me about your new fundraising ideas? At my old school they are having a Summer Fair on Sunday and I’m going to have my own stall there and I’m going to sell a lot of things so I’ve got different event cards so like thank you cards and happy birthday cards and bracelets and things like that. All that I’ve made. I’m going to sell all of them and whatever is left over I’ll put on my page if there is anything left over. My mum has made some things and so have I.
Some of the lovely items that Edith made for me and like the ones she’ll be selling to raise funds for the PDA Society
So that’s it guys – I think you’ll all agree that Edith has achieved something very special here and will help more people than she thinks. I won’t praise her too much but I just want to say that I learn from you Edith while you learn from me and a BIG THUMBS UP! 👍 Oh and the cake was DEVINE! 😋
PLEASE SHARE 💜