¶ Neurodiversity and Parenting Challenges
Welcome to the Send Parenting Podcast . I'm your neurodiverse host , dr Olivia Kessel , and , more importantly , I'm mother to my wonderfully neurodivergent daughter , alexandra , who really inspired this podcast .
As a veteran in navigating the world of neurodiversity in a UK education system , I've uncovered a wealth of misinformation , alongside many answers and solutions that were never taught to me in medical school or in any of the parenting handbooks . Each week on this podcast , I will be bringing the experts to your ears to empower you on your parenting crusade .
In this episode , we are launching our monthly Bite Size Summary series . I'll be joined by Tamsin Hendry Sen Advisor and previous guest on the show , to have a candid discussion on the key top tips from the previous guests on the Send Parenting Podcast . We'll encapsulate their expert top tips and what the key points were that we took away .
If you don't have time to listen to an entire podcast , but would like the key facts to empower you on your journey , then please keep listening . Welcome , tamsin . It is such a pleasure to have you on our first Bite Size Summary . I'm so excited to co-host with you and we're going to kick it off today .
Looking at episode 22 and 23 , where we had Ellie Costello as a guest and she is the author of Square Pegs , which is almost like a Bible of neurodiversity , and does also a really well-known activist and warrior mom , and she had so many pearls of wisdom in her podcast that I think today you and I are going to have a challenge in picking apart and making a
Bite Size Summary of everything she said . In fairness , as you're a co-host today , I thought I'd kick it off to you first to kind of take us through what were your key takeaways from those podcasts .
It was lovely to be here , so thanks for having me .
It was really tricky to work out what was my takeaways and what were her top tips really because , like you say , there were so many , but I think the things that resonated , the three things that resonated with me the most , was the loss of identity and respect that you can feel as a parent who's trying to navigate the system , and it took me back to all
those places I went where words were used like tenacious and it didn't feel good . It didn't feel good at the time and it was really that deficit model in which parents are talked about and what that does to you as a family .
Makes you doubt yourself , doesn't it ? It strips you .
It strips you and you have to become an expert in so many areas that you are not an expert in , and with the difficulty in reaching out to or waiting for professionals , you're on your own , so it becomes a war .
She used so many words that really resonated with me Put your armor on , pick up your mantle and that really I think lots of parents will really resonate with that and feel less alone .
Yeah , and the fact that you have to . You're not being difficult . You're not because you do feel that way . Oh , I'm being difficult with my healthcare provider , I'm being difficult with the school , but you know what you have to . And she really drove that point home and validated , as you said , our own journey .
Yeah , absolutely . And the second , moving on from how you feel as a person , is the deficit model of the family . You know that sometimes it can feel that within an EACP application or a sense of support plan that you're doing , there's a family page . But how much is actually ?
How much of that is actually thought about when they're writing the plan itself and making the decision ?
Because if a family is viewed , you know , if a school's admission policy says , first and foremost , we find parents are the first educators and the experts of their child , is that actually translating when we're talking about the difficulties the child's having , particularly when they're masking at school ?
So I think what , within the revolution she talks about a lot and is really inspiring , is about moving families from that deficit model to genuinely engaging with them . And so what they're saying is the case , you know , and that to look at a child , to list it who they are at school is not necessary , who they are at home , vice versa .
We've talked about that before . But being the families , not as a deficit model , is so important in the changes that are moving forward and bias into the . You know , under the safeguarding children's board , family resilience is huge . So how can families be resilient when they're being made to feel like they're in a deficit model .
And the last one that I really took away , which I found really interesting and I haven't looked at it in that way before I completely agree that the education system is based on a medical model .
You know , rather than saying this is my child's need and this is how to best support them , we have to have those labels , but the laws that protect those children are a social model . So they just don't work together .
And I did some training actually recently and we were talking about EOTAS , which is , you know , educated in school , and I was saying well , that's fine If a child is educated at home for five afternoons , in school for five mornings , but who pays for that ? Who pays for the deficit in the school ? And the feedback was actually that's not our concern .
Our concern is the law and protecting that child's right to an education . So everybody's talking a different language and it's that marrying together the social and the medical model to be able to allow us to move forward . So that really gave me food for thought .
It's a really valid point too , and especially with , you know , diagnosis being so difficult , with CAMS being so overwhelmed that you can't , the medical model isn't working . You know , basically it's completely broken . So and you know we've talked about this before there's so much you can put in place . You know what does your child need .
Let's put this that you know what's important is beyond the diagnosis , do you know what I mean ? And we don't have the diagnosis . And those children are children right now , and from day to day they change and the problems that you're accumulating by not putting the right support in place get bigger and bigger and bigger . So , yeah , I completely agree .
If you being a doctor , even I completely agree with you .
I actually go back to . We've done a podcast recently about the graduated response and actually there is a limit available that can be done within schools that doesn't cost any money , but it's giving people within those schools the time and the training to understand what's available to them without any HCP or a diagnosis .
Yeah , and I think that's so key because that's helping the now , you know , and talking about school system , I think that's really where Ellie blew my mind actually in terms of , you know , first of all and I knew this already , but you know , highlighting the fact that misbehavior is not , it's not the problem , it's a form of communication and it's actually getting
underneath that behavior to the underlying cause . That's important and the school system stops at the behavior and then the policies around that schools have .
That she highlighted to us in terms of behavioral policies and restrictive policies in school really frightened me , if I'm quite honest , you know , I didn't realize how schools were able to , based on a behavior , isolate a child without a parent's knowledge and she talked about her own experience with her daughter and other children and that you know they think that
that's somehow going to help and it doesn't . It actually causes trauma . But I couldn't believe it . Almost . It was interesting actually , you know , as things happen in life . Then start speaking to another parent who told me about one of our local schools where something similar is happening .
So it's not the anomaly in the situation it actually is in , particularly in England where we have this kind of language of I'm tough on crime , you know , but I'm tough in school kind of lingo which isn't working and it doesn't work . It doesn't work for any children , but it particularly doesn't work for neurodiverse children , and so I don't know .
I mean , what were your thoughts on that ? I think it's something that actually the education system could learn a lot from early years , because early years we talk all the time about the iceberg effect . So what we can see above the water is just a very small portion of what's going on underneath the surface .
Or another analogy is this calm duck swimming along the water and paddling desperately underneath . But what I think is even more concerning is when you have a child that is actually really masking at school and is compliant , and it's when they get home that they explode .
They are less likely to get the help and support than the child that's throwing a table in the classroom .
Yeah , because you know , in a way , when someone says , you know they have a motion about bus at school and I've got no support , there's part of me , this terrible Pop of me professionally , that things excellent , good , so the school is , something's gonna be done , and it also feeds into that .
We all know a little bit about something and so , for example , occupational therapy huge , very , very , very hard to get an occupational therapist on board .
But actually the understanding that occupational therapy , even written , even if you're dealing with a child in an EACP situation , isn't just about movement breaks and that's why it's important to have the occupational therapist into review Every term , because it's about that regular input and teachers understanding that it's .
That regular input allows the regulation for it not to To escalate to that point . Otherwise you end up just dealing with the here in the , here in the now . So it's really lack of knowledge , lack of education , lack of time to to Read everything . You know .
We have access to OT packs and different things , but actually I think perhaps a way forward and in lots of the podcast we talk about what's the solution is Using insert insert days not necessary for internal training , but get occupational therapist in , get speech therapist in to say it's about , it's about a whole school approach , that's , you know , rather than ,
like you say , these Deficient models of family , deficit models of behavior , because they are the silent voice of the child that's telling you it's not working Absolutely and you know you could really turn it around by by , by switching that , and actually you see that in Scotland they have pockets of , you know they are .
They are shifting the way that they look at things and they're having good results because of that , and I think you know . The final point that I wanted to bring up , which also has been echoed in other podcasts , was this idea of , oh , natural wastage . So you know there's a third of children who are just natural wastage .
So you know the GCSE is actually successful in the fact that it fails a third and that means the algorithm is working well . And you tell these children you have to do well in your GCSEs . This is going to determine the future of your life .
Those are the messages that kids get , but no one gets the message that a third of you are going to fail , um , or realizes that . You know what the GCSEs aren't the end all and be all of everything .
But you know , I think that that mentality of , instead of looking at potential of our children , but rather looking at , okay , two-thirds are going on , one-third is just natural wastage , was just is not how we should look at education , no , or our children no no , it really isn't , and I think it also comes down to the .
You know , I was thinking about it when I was listening to her and going back to that medical model . If a child , um , you would never , ever hear a school or a professional say well , I've never seen them have an epileptic fit , so therefore I won't be given the medication at school .
Or I've never seen them slip into a diabetic coma , so I'm not going to be giving them their insulin , um , you know , or I'm afraid , their , um , their sugar level detector that's been um Given to them by the health authority and you know it won't connect to our , our wi-fi . Sorry , you know , you don't any of that .
In relation to behavior and trauma and Anxiety , there is this feeling of if we're not seeing it in the way that we think we should be seeing it , so a child's not shaking in the corner , really nervous , but they're actually acting out then it can't be that .
So it has to be a whole school approach and it has to start from the top , I think of the head and the senco believe in in trauma , believe in anxiety , believe in a holistic view . It feeds down , so it's got , and that even starts at policy level .
Yeah , it does , and I think you know . You see schools where they make this work and have great success at it , and then you see schools where they crack down on behaviorism and you see kids , you know , basically being excluded from school . Is is the is is where it goes there . Well , I think that you know . That sums up our bite-size summary .
Hopefully we've whetted the appetite . So for those listening who have been , you know , interested by what we're talking about , please go and listen to episode 22 and 23 , because you can hear in Ellie's own words , and she does a great job of explaining it . She's been in this for 10 , 11 years now and she's a real warrior Towards this cause .
So thank you , tansan before we finish , can I just add what I think were her three top takeaways , which I think I really absolutely To the three things that I think she felt the message to all of us was is recognize your own drivers , the why behind what you're doing .
Find your own tribe , which was echoed by by many people , but also Recognizing that make sure that tribe isn't isn't an echo chamber of your Worries and anxieties . Find that tribe that help and support you and the best one is tomorrow is another day .
Hold on to that hope those are great words to
¶ Parenting Tribe Summary With Tamsen
end on . Thank you , tamsen . Thank you . Thank you for listening . Send parenting tribe . I hope you've enjoyed the first bite-sized summary with me and Tamsen co-hosting .
Please reach out and let us know by either commenting on the episode at wwwsendparentingcom or reaching out to us on Instagram at send parenting podcast , wishing you and your family a good week ahead . You .