EP 68: Occupational Therapy - Bitesize Summaries

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Welcome to the Send Parenting Podcast.
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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.
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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.
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Each week on this podcast I will be bringing the experts to your ears to empower you on your parenting crusade.
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In this episode, I'm going to be joined by my co-host, tamsen Hendry, the Senate advisor, to do a bite size on episode 18 that was released last year on the importance of occupational therapy for neurodiverse children.
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Rachel Horner, the OT in this episode, was super helpful and offered some really practical solutions that you could do at home.
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Tamsen and I will discuss our key takeaways for you to digest during this Easter holidays, if and when you have more time.
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I'd also recommend tuning in to episode 18.
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So welcome, tamsen.
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Thank you for joining me again to co-host on our bite size series looking at traditional therapies, and today we're really going to unpick a big topic, which is occupational therapy, and I think Rachel Horner in episode 18 did an amazing job of looking at occupational therapy through the lens of how it can benefit our neurodiverse children, because it might not be what comes to mind as a therapy initially for a parent whose child has a neurodiversity, but I know you found it very beneficial with your son and I found it extremely beneficial with my daughter.
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So why don't I have you kick off the bite size series today to say what were some of your key takeaways from Rachel's podcast?
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So there were so many it was hard to unpick.
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What I really loved that I have taken away from and I will share with others, is she talked about the just right challenge.
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Yeah, that was one of my keys as well Childs being an achievable challenge and this is what I love, supported with compassion to ultimately allow the children to feel success.
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And I think OT is such a vast topic, but if you could apply that phrase to everything just right challenge, delivered with compassion so that a child can feel success.
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And I run as a support group and I was actually related that exactly to a month's day and she was talking about a child self help skills and that he was not getting anywhere and not making any steps forward.
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And you know it was a really negative conversation and I said, well, what is achievable for him?
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Is it achievable that to have his needs met, that he wants to go outside but he can't put his coat on, could he bring his coat to you?
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She said, yeah, he could do that.
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I said, ok, so that's a challenge because he's having to let his needs be met, but you're being compassionate because you're not having too high expectation and he is now successful because he's going outside.
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So I think it can be.
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It's a really short shot phrase that you could apply in your mind all the time.
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You know, it's really interesting because over the half moon what am I talking about?
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Half term, it's full moon actually, but holiday we had homework and my daughter's now moved to year seven and the homework was so difficult that we had a complete breakdown.
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And, through talking to some other moms, it wasn't an unusual thing Like so one child that had the phone removed now for a whole weekend because of the words that they use with their parent with the homework, another child was in tears, you know, and the reason why they were all so upset was because they didn't understand what they needed to do.
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They therefore felt stupid and that they couldn't achieve it.
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And she had my daughter had some other homework which was actually just right for her.
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She struggled a little bit but she could do it herself independently and you could just watch her blossoming with like look, I could, so proud of herself.
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So I had to reach back to the school and I'm like this is not the right homework, because it's not just the right challenge for them.
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It is not.
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You need to pitch this so that they you know it's a little bit tough but that they can do it by themselves.
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And I think that's really key because it's building that independence, it's building those skills of daily living and, you know, being able to function in the education system.
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But you have to be very conscious of it's something that they need to get the positive feedback that they've done themselves, not that you've done for them.
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And so strategy based, because sometimes, you know, maths is a prime example that my son can feel overwhelmed.
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Even if it is the right challenge, the right level, still feel overwhelmed by quantity.
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And I say to his teachers if you just put one of those sums on the page, just one, that would not be overwhelming for him, it's the right challenge.
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It's, but with the compassion of understanding that too much information is going to be an overload straight away, going to trigger anxiety.
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So I think you could pretty much apply it to every scenario.
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And it's finding that balance between Making it too simple and making it too difficult and that it really is a fine line and I spoke in the in the podcast to Rachel about.
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You know I would help Alexandra dress a lot because she struggled so much with it.
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You know, and the teacher said to me you're doing your child no favors, but then it's breaking it down to just the right challenge, so maybe putting the button through and then them completing it.
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So it's fine, you know, and you go through.
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You have to go through a journey as a parent because you start, you know, changing their nappies, putting their clothes on, doing everything for them, but then, as they're trying to get more independent, you've also got to step back, but in a way that sets them up for success.
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Yeah, and I think you know that leads on to that.
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That was chaining that she talked about, which is halfway through and allowing them to experience success.
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So you know, when they're little you might do all of the puzzle except for the last piece and then you build up to just doing all of the puzzle but leaving two pieces.
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And it goes through now to me encouraging my son to go into a shop, which also comes under OT and the life skills of.
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Actually you need to ask for that and pay for it.
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So at the moment we're at the point where actually I asked for it, I pay for it and he takes the change, you know.
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So he's still.
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He's completed that cycle.
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Another part of backwards chaining is you can bring a child in for the beginning, allow them not to engage so much in the middle but bring them back into the end so that they've had, they've seen some, they've been invited to join and they've completed something, and then you shorten the gap in the middle.
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So I think that they were.
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They were both really backwards.
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Chaining is something that I still do now with most activities.
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But go back to play therapy.
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You need to be reflective in your, in your engagement with your children to realize what you need to do.
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And also I thought it was really valid when she talked about practicing those skills when time is not of the essence.
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You know.
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So you rightly said you know you're too busy.
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You need to get out the door.
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Everybody needs to get to school.
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That is not the time to be to be encouraging independence for dressing.
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That can be on a Saturday morning.
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That can be taking your clothes off to get in the bath at the end of the day.
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Find and just as an activity in itself and go back to we talked about play therapy before making it playful, you know and I think also getting rid of the preconceptions in your mind that they should be doing this by this age.
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Yeah, and that's a really something I still struggle with now.
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You know my daughter struggles with she would hate me even saying this so I'm not going to tell her.
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I've recorded this one.
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But she still struggles with small fastenings.
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You know she'll still come into my room in the morning and she's a year seven or so neurotypical and she can't do the button up on her skirt.
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So I know with her personality that it's not going to work for me to help her with that.
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But I've got a dress with a really small button at the back that I struggle to do myself.
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So when I wear it I go into her room and say can you, can you do this up for me?
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So it's just finding different ways, different angles, and the older they get for those angles to be age appropriate.
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I've just discovered my daughter loves doing laundry with me, which is like pleasure.
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Not yourself out, they go, but my children have.
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If you had to go, henry card.
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Oh, yes, we had a rooster.
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Yes, so I was putting jobs on there.
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You know that.
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So in the end my son, who is neurodiverse, said it's not worth it.
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It's not worth it for that amount of money, mom, I'm not going to.
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No, I'm not making my bed for 50p.
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No, definitely not.
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He's analyzed the situation, the situation, rather, you do it and you know it all comes down to and this was an interesting point for me is that, because of my doctor background and because of my history with my daughter and her cerebral palsy and seeing how far she's come, this whole concept of the neural pathways, which is what we're talking about in the just right, challenge is, if you fire it, you then wire it, and so what we're teaching kids is slowly by firing it, then they wire it.
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And you know I've seen my daughter not be able to use her left hand to being able to use her left arm, and you know I didn't understand how much broader that is than just motor function.
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You know it is.
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It has such a wide applicability across neurodiversities in terms of and there was a quote I'm going to read out actually, the more you do something, whether it's a physical skill, a motor action, or whether it's learning to cope with different sensations, slowly through desensitization, the more you're going to create those neural pathways and hopefully desensitize any overreactions, you know, and that's what we're talking about.
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You shared.
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I loved your story that you shared about when you put Velcro on to Alexandra's Foot so that she could learn to pedal a bike.
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You know that that's amazing and just through that motor practice, the the muscles remembered and the leg remembered how to do it and absolutely took three.
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It took three months and even today, like if we go on it on a cycle ride, and maybe it's a bit long because it is a strain for her to get that left leg to move as well.
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It, you know it, she's still forming these ways.
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She's still firing it.
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If, if she gets tired, you'll see the left foot slip off but she sticks it back on again.
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You know it's, it's.
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I mean, that's why I love medicine.
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I can't hide the excitement in my voice.
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Our brains and our bodies and how our neurons work are we actually have more control in Changing and formatting them than we realize.
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And if you look at kids with, like autism or ADHD, there is an actual genetic component to how those messages that are transmitted from nerve to nerve cell and Then get shown to the brain and how that's interpreted.
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Those differ from from neurotypical messages, and that's a great thing, because that week they experience life differently.
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They're gonna see things that we don't see, but then it also has to.
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They have to live within this world that we live in.
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So it's, you know, they need to be trained to be able to accommodate life in this world.
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You're right, because you know my son doesn't have the motor difficulties, but he has.
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You know he's very, very anxious.
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So he has a Diagnosis of clinical anxiety.
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But actually I don't think it's any different than most children with a ST that have those worries.
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And I've just come to the conclusion that the first time we do something is just never going to be successful.
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So it, rather than feeling Frustrated every time we do something lovely that is not successful.
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I now do a trial run.
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So if we're going to Chestington, I I Plan time to go to Chestington, even knowing we're not even going to go through the gates, just to let it fail, so that we can then go the Nick when we've actually planned to go and it's gonna be, it's gonna be, it's gonna be, it'd be fine.
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And Actually I didn't really know why I did that.
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I knew it worked.
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And then when I listened to her podcast about you have to fire it, to wire it, I realized that's what we've been doing.
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So, like many parents, you, you find ways of that work for your family, without necessarily understanding why they work.
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So, when you have the podcast.
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You listen to professionals like Rachel.
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You think, oh, that's why it works, because I'd fired it.
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Yeah, and it can, for it validates you as a parent.
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Yeah definitely it does.
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It's good and in the same way, when she talked about I Don't know about you, but I often think about aids and adaptions and and Andrew really doesn't have any aids and adaptions We've gone past visuals really, but when I was listening to her, even down to the basic things about molding, molded cutlery.
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So Andrew does eat with a fork, but I know if I wasn't present he would eat with his hands At 15.
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That would be his choice and actually he does struggle with fine motor.
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So I've ordered some off the back of that podcast.
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I've ordered some molded cutlery because I don't think he knows how to hold it.
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I don't know how.
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I think he still knows it doesn't feel right in his hands.
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So actually I bind the molded cutlery that's gonna fire in his, in his mind, the pathways to understand.
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This is the position you should be holding, actually, that that may come in time.
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Were you able to find adult?
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ones.
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I didn't find adult ones.
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That's my problem, Because my daughter right now she's had the ones and it helps, and then she wants to, and my father's guilty of this.
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Luckily he doesn't listen to my podcasts either, because he's always like oh, when are you going to use normal cutlery?
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I'm like, leave her alone.
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Like you know, but interestingly I'm seeing an occupational therapist next week, so I'm going to ask her, because there must be sites for adult cutlery.
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Adult cutlery?
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Yeah, because it just makes it easier and then supports that fire and wiring process and makes it less hard.
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Right, you're hungry, you're tired, it's hard, definitely.
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And a bit better than I was thinking.
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Shall I do?
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I know I'll copy Olivia and I'll just velcro them onto his hands.
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So you get un-cut.
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I think he's a bit old for that he is.
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Do you know my mother?
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Though she used to stick, and this she used to, she postured her.
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She went to the royal ballet.
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She lived in an era where she would walk across the floor with a book on her head.
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So when I would sit at the table I would slouch right and my daughter does too, but I think everyone does so she would stick a ruler one of those big rulers down my back so I couldn't slouch.
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And you know what?
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I can't slouch now.
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It was actually the greatest gift.
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I cannot sit like this.
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It is so uncomfortable to me.
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I can't bear it.
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I always have good posture because I fired and wired it and that's the only way I can sit now.
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Now it does sound a bit like torture and I don't recommend any parents out there start sticking rulers down their children's backs.
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But I don't slouch.
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It was and that was her non-negotiable.
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But she also did the 15 minute love time and you have to love her back.
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And I have got great posture, so hey ho.
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But you know, supporting a child with tools I think is really important and I thought I really liked Rachel's comments about in the classroom.
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And you know, also, as we, as I've been discovering more about disability and you know, the medical model of disability versus the social model of disability, which you know, looks at education like, okay, can a child fit into education or do we need to change education to fit the child right, which would be more of the social model?
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So when we have children that aren't able, they need to get their nervous systems in the right place to learn.
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We need to adapt the school environment so that we allow them.
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You know, whether it be with wobble cushions, whether it would be I think she mentioned doing push-ups on the wall before they sit down to learn, or movement breaks.
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There's a whole slew of recommendations that she gave.
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But the importance of giving the child that nervous release so that they can then learn, you know, and I think some schools do really well, Some schools ignore it.
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Some schools say if you're not sitting in your chair, you're going into detention.
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So it's varied.
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And we talk about the solution.
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What's the solution?
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And actually I really thought hard about what is the solution after listening to her, because I think OT has got to be right up there with regard to how do we adapt our mainstream classrooms and I was thinking, if I was back in a primary school environment, what would I do now in my classroom?
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Based on her podcast and past reading, and I think they could do some really simple things If either side of the classroom they had, you know, high-level tables, benches, no chairs, so children could have standing tables, which are actually really can be helpful for children, particularly with ADHD.
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So you've got those standing tables either side, just a plank of wood that children can choose to go and move to if they want to.
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What if every classroom at the back had, you know, kind of like a King Arthur sword in the stone?
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You know, I think you need to try and get the sword out.
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You know that feeds their proprioception.
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If everywhere children go, they carry their bags with them.
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You know that are weighted and also giving children those, if they need a movement rate, build it into a really helpful way.
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I see movement rates all the time where children are just allowed to walk around the school will actually give them a, give them a job to do, you know, send them to the office to be the register monitor, whatever it might be.
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There's so many things that I think having a all schools have an educational psychologist attached to them Maybe part of the solution is that every school has an OT attached to them.
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And I have to say like since Alexandra went into her independent specialist school where she has an OT, that's there her fine motor has improved dramatically.
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You know it has made such a difference to have that input into the classroom and in her school the desk can go up and down, so you know there are kids that have standing desks, you know.
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And I think you know private send school the budget is bigger than in a mainstream school, but there's no mainstream school that couldn't get a caretaker to attach a plank of wood halfway up the wall.
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You know, there's definitely ways that we could make this work better.
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And making it more of a focus, I think is key, you know.
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And what she was saying is I fell in Rachel's podcast.
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Everything is achievable.
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You've just got to break it down, and if those steps are too big, break them down again.
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There's always a way forward and it goes back to that.
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Never give up.
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You know, and my daughter shows this to me time and time again.
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You know, the only thing that I've ever said to her that maybe we can't do is gymnastics, and I sometimes feel bad about it because, you know, but she doesn't have the balance.
00:19:41.526 --> 00:19:45.546
But she's like mommy, you've told me I can do anything.
00:19:45.546 --> 00:19:48.343
You know, if I try hard enough, we can do anything.
00:19:48.343 --> 00:19:54.098
You know, and I think that I do believe that you know, it just might, it might take us a long time, it might take years.
00:19:54.098 --> 00:19:57.641
We can get there eventually and it might be slightly different.
00:19:57.661 --> 00:20:01.483
You know, I even thought to myself with the biking thing because I wasn't sure it was going to work out ever.
00:20:01.483 --> 00:20:02.246
I really wasn't.
00:20:02.246 --> 00:20:06.405
And you know she's looking at me like mommy, you, you, you know, are you sure?
00:20:06.405 --> 00:20:16.016
And I'm like, even if I have to buy a tricycle bike, where you're sitting in it and we will go down that route, you will be riding some form of bike, you know, and I'm you know.
00:20:16.016 --> 00:20:20.205
So there are so many modifications that you can make to be able to achieve things.
00:20:21.315 --> 00:20:23.141
And I think it's that way, where there's a will.
00:20:23.141 --> 00:20:29.155
You know, if you want it enough, if you want it enough, if it's important enough, then you'll find a way.
00:20:29.155 --> 00:20:38.676
And it may not look, as you said before, how you envisaged it in the first place, but it doesn't mean you can't get there Exactly.
00:20:39.714 --> 00:20:46.422
Was there anything else that you would like to highlight, or can I leave it to you to kind of highlight what Rachel's key takeaway points were?
00:20:46.883 --> 00:20:49.880
Yeah, well, I just the one last thing I wanted to.
00:20:49.880 --> 00:21:00.798
I think with OT, people often tend to think about it in relation to motor skills, but also I think she really highlighted the importance in regard to attention and focus that it can be used.
00:21:00.798 --> 00:21:03.546
Lots of the strategies are used in both ways.
00:21:03.546 --> 00:21:13.527
Yes, there's the motor element and life skills, but there's also that attention and focus to be able to have the ability to master those new skills.
00:21:13.527 --> 00:21:28.482
And I think that was that other element of OT, that if people think, oh, you know, perhaps, like I did really a little on in my journey, I don't necessarily need OT because he doesn't have these fight, these gross motor or these fine motor problems, actually he did with regard to listening and focus.
00:21:28.482 --> 00:21:30.400
So that's where it came in for us.
00:21:30.922 --> 00:21:31.904
I think that's super important.
00:21:31.904 --> 00:21:32.699
I didn't get it either.
00:21:32.699 --> 00:21:36.516
You know, and in terms of noise sensitization, you know being in crowded.
00:21:36.516 --> 00:21:49.228
You know everything, pretty much any challenge that your child is facing, and OT can help you to break it down and to find a way to work towards the fire and kind of wire philosophy.
00:21:49.307 --> 00:21:49.769
That's right.
00:21:49.769 --> 00:21:57.548
I actually had an OT really on in my journey, had an OT come to the house and just say to me you know, what am I doing wrong?
00:21:57.548 --> 00:21:59.205
What can I be doing differently?
00:21:59.205 --> 00:22:01.548
And she said, well, pretty much everything.
00:22:01.548 --> 00:22:02.523
You're doing everything wrong.
00:22:02.523 --> 00:22:06.410
So, okay, so how do we move on from there?
00:22:06.779 --> 00:22:10.884
And she was the one that talked to me about the primary function of things, the primary, you know.
00:22:10.884 --> 00:22:14.604
She observed a meal time and she said look, the primary function of a meal time is to eat.
00:22:14.604 --> 00:22:17.428
It's too much for him to socialize with you.
00:22:17.428 --> 00:22:22.468
He doesn't want to, so let him eat first and then, if he wants to join you afterwards, that's fine.
00:22:22.468 --> 00:22:24.086
The primary function is that he eats.
00:22:24.086 --> 00:22:27.048
The primary function of education is to be educated.
00:22:27.048 --> 00:22:32.048
So you may want them to be in a mainstream environment, but they can't cope with the sensory overload of that.
00:22:32.048 --> 00:22:35.509
Find them an education that they can access elsewhere.
00:22:36.859 --> 00:22:49.628
And she talked to me about so my son has really hot food, so straight out the oven, sometimes into the microwave, so hot or frozen, and so it's really difficult when we go out.
00:22:49.628 --> 00:22:55.162
And she said to me what he's doing is he's desensitizing his mouth to flavor and texture.
00:22:55.162 --> 00:22:58.509
You can make that simpler by giving him ice chips wherever you go.
00:22:58.509 --> 00:23:04.965
You can always access ice chips wherever you are in a pub, in McDonald's and that's something that he can do as an adult.
00:23:04.965 --> 00:23:14.867
If he's going out to dinner with people or going out for a business dinner who knows where he'll be later on and a meal comes up, he can discreetly ask for ice chips at the bar.
00:23:14.867 --> 00:23:17.226
You know, that makes that very doable for him.
00:23:18.339 --> 00:23:22.166
So, and then by eating the ice chips, he's then able to eat the meal at a normal temperature.
00:23:22.799 --> 00:23:25.126
Yeah, because he's numbed his mouth basically.
00:23:25.126 --> 00:23:32.070
And also I remember her talking to me and it's only now, you know, 15 years later, that I get it.
00:23:32.070 --> 00:23:35.568
She talked about desensitizing him from touch with brushing.
00:23:35.568 --> 00:23:38.326
So I don't know if you ever heard of brushing in regard to OT.
00:23:38.326 --> 00:23:43.788
So it's brushing the body at regular intervals, so why would say it's using a brush?
00:23:43.788 --> 00:23:47.365
So for me it'd be like my grandmother's hair brush on her dressing table.
00:23:47.365 --> 00:23:49.194
That used to be kind of soft.
00:23:49.336 --> 00:23:51.023
You know those hair, yeah, I know those ones.
00:23:51.023 --> 00:24:02.990
Yeah, all like a bath brush and the idea is that you brush their skin at regular intervals during the day, really regular intervals, and I remember thinking, oh, how do you make that happen?
00:24:02.990 --> 00:24:05.446
And I kind of always dismissed it.
00:24:05.446 --> 00:24:19.568
And I'm now working with a child that can't bear to have clothes on and I've gone back to that OT desensitization through brushing, because actually it's too much to tolerate any item of clothing at the moment.
00:24:19.568 --> 00:24:21.826
But there's always a way forward.
00:24:21.826 --> 00:24:34.626
So let's see if she'll tolerate soft bristles on her skin for a period of time before we then introduce an item of clothing so that her parents can leave the house, because there's always a way forward.
00:24:34.626 --> 00:24:36.246
But things slot into place.
00:24:36.246 --> 00:24:40.667
You listen to advice and motes and then years later you can sometimes put it into place.
00:24:40.667 --> 00:24:48.330
But I think they're a really fundamental part of any parents' journey with a neurodiverse child.
00:24:48.330 --> 00:24:53.587
They will have something to offer and for me personally it's been invaluable.
00:24:54.210 --> 00:24:56.506
Yeah, and they're not easy to find.
00:24:56.506 --> 00:24:58.403
I have to add as well they're not easy to find.
00:24:58.920 --> 00:25:08.344
No, but actually often they are one of the less expensive professionals if you're using them privately, which is crazy really.
00:25:08.344 --> 00:25:22.362
Kind of shows how much I wonder if that will change over time, but at the moment they are to have a one-off session of a full-sensory profile is more doable than most private reports.
00:25:23.385 --> 00:25:24.729
And I think it's also important.
00:25:24.729 --> 00:25:32.608
Like my daughter, even though you know the the, the NHS occupational therapist said well, I don't think she'll ever hold a pencil, I don't think she'll ever be able to write, but you know what?
00:25:32.608 --> 00:25:36.286
She's not bad enough to have state funded occupational therapy.
00:25:36.286 --> 00:25:37.830
Don't listen to those people, you know.
00:25:37.830 --> 00:25:40.028
I just looked at her and I was like what are you saying?
00:25:40.028 --> 00:25:40.992
You know what I mean?
00:25:40.992 --> 00:25:45.630
She can't hold a pencil, or she can't brush her own hair, or she can't do these things.
00:25:45.630 --> 00:25:47.734
It's, it's not okay, you know.
00:25:48.135 --> 00:25:55.097
So don't listen to a stroke victim, you know, in their sixties they wouldn't say actually not bad enough.
00:25:55.097 --> 00:25:57.853
They would say you need to get you independent again.
00:25:58.365 --> 00:26:01.550
Yeah, exactly, but we, we have.
00:26:01.550 --> 00:26:12.336
We we are in danger of making this a full podcast instead of a pocket podcast, Tamsin, because you and I love to talk, but in terms of any.
00:26:12.336 --> 00:26:17.675
Her last tips would you like to just quickly encapsulate what Rachel's top tips were?
00:26:18.184 --> 00:26:21.278
So she talked about the importance of being active.
00:26:21.278 --> 00:26:34.582
You know, the importance of being outside, the importance of just taking risks in your play, just allowing children to be plaid to go outside, get messy, you know, and just just be free.
00:26:34.582 --> 00:26:46.115
So she I felt that was really important to her and also not to replace screen time with outdoor time, that there's a balance and a place to be had for all of them.
00:26:46.115 --> 00:27:02.035
So OT is, I think, could be really great for iPads, can be really great for OT things like writing skills and making it non permanent with their mistakes, but actually to have the balance between that and outside, I think how big is messy towards get your kids active and get your kids messy?
00:27:02.846 --> 00:27:03.888
Yeah, absolutely Well.
00:27:03.888 --> 00:27:05.835
Thank you, Tamsin, it's been a pleasure having you.
00:27:05.835 --> 00:27:06.987
Thank you for having me.
00:27:06.987 --> 00:27:14.851
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