INTRO
welcome to the autism 360 podcast the 360 method a weekly podcast where we talk about everything autism 360. every week we catch you up with what’s going on in the program uh talking to team members special guests um and talking all things mindset as well as everything relevant that autism parents think about this week I’m so delighted to Welcome Back Our Guest with Kirsty wishart from uh starfish Sensory store um to talk about sensory support and uh answer some of the questions that we have left over from her wonderful guest speaker series that she’s done with us here in the program I’m your host Ella Bailey I’m an Autism 360 veteran coach and Explorer of all things parenting support um and so welcome to our lovely listeners hooray we care about you and your thoughts and so whether you’re a program member or not we would love to hear from you please drop us a line at hello autism360.com we would love your feedback and if you want Kirsty back would like to ask some more questions um then you’ve got to drop us a line so that we know before we get started I’d like to acknowledge the guide people of the Euro Nation on Whose land I live and work and from where this podcast is being broadcast today and also make a disclaimer that this podcast does not substitute for medical advice if you have concerns about yourself or about a loved one please do reach out to an Allied Health professional it’s so lovely to have you Kirsty how are you thank you I’m great and thank you for having me back this is always such fun it’s always such fun and such good info um for what can be a bit of a bewildering uh landscape for parents would you say getting in touch with sensory uh needs and and finding the items that their kids need do you find confusion for parents in general I think it’s always overwhelming when you’re first starting out and it’s also it can be a little bit tricky because there’s not a one-size-fits-all especially
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when it comes to sensory needs um because people have a sensory diet that’s unique to them so it’s never going to be right this is a diagnosis here’s your prescription it just isn’t that easy yes you’re right and sometimes they change even when we do find something that works it may not stay the same so true or just when you think oh yes or even that afternoon yeah exactly you’ve got to have a whole host of strategies in your kit bag yeah a sensory tool belts um so I think we should start off with giving a bit of context what would you say is one of the main reasons that autistic people and I guess more broadly everyone can benefit from having sensory support in their lives um number one priority would be to help regulate totally that would be the primary reason because uh a fun the ability to function um at home or in the community or at work is number one underpinned by a healthy uh level of Regulation if you’re well regulated you can learn you can contribute you can communicate if you’re unregulated or dysregulated um you’re much more hypersensitive or or withdrawn um and it’s much more difficult to do the things that you want to be able to do in life whether whatever age you are yeah yeah absolutely one of the um things that I’ve learned since working and learning more about sensory stuff is that I need to wear my noise canceling headphones in Aldi I just find that I can sustain attention and I feel less stressed if I can just bring down that input slightly I’m not listening to anything in the headphones I’m just tuning everything out yeah my example I’m not autistic that said I I know it’s hard to believe actually an introvert and I’m at a two-day I know when I’m at a two-day Expo especially people that I don’t know and it’s not very good at Small Talk um I I use a 305 gram kaiko hand roller all day all day uh so it’s weighted and it keeps my hand moving it’s giving me lots of input in and I often I use it all day off so much so that I forget that I’m actually doing it but it would probably keep grounded yeah yeah the things you know you learn about yourself when you’re learning about these things right we’ve got um some really interesting questions left over from our webinar so I say we just launch into those and see where it takes us hey yeah love it one um that says my child has heaps of functional skills can communicate verbally and goes to a mainstream School uh he’s nine years old however he’s constantly chewing on his clothing he chews on the Cuffs of his jumpers and the collars of his t-shirts any tips or suggestions yes uh that’s the really common one yes um when it comes to clothing so when it comes to chewing and shoes um there’s a couple of things that we first of all When selecting uh a chew that they might actually use as an alternative well in terms of like I have a uh an education background and and one of the things we use we would say is if you you don’t tell a child to stop doing something you need to provide an alternative because they might actually stop doing that particular Behavior take up something worse exactly you want to provide something that’s more functional uh more constructive and um a a healthier option so what we want to do if we know that that child is chewing uh to help them regulate kids and adults do things instinctively they’re driven towards items or strategies that will help them regulate so the fact that they’re chewing they need to be chewing to help them regulate usually not always but usually it’s at surrounding anxiety or providing because when you’re chewing you’re actually getting loads of proprioceptive and vestibular Import in the in the jaw and it’s very powerful we naturally chew a lot of people chew chewing gum um but the fact that he’s chewing his clothes they’re getting really wet we
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want to provide an alternative so look at what they’re chewing and look at how often they’re chewing look at where in their mouth they’re chewing so if it is at the front of the teeth are they using their tongue is it the back molars are they stretching their mouth look at how they’re chewing because that can help guide you when it comes to selecting the most beneficial chew so um with clothing that is not super hard um so I would go a soft to most shoes are grated from a soft if we’re talking Arc which is probably the best known shoes um highly regarded by therapists designed by therapists actually because that particular brand is run by therapists Allied Health Services in in the US um and the Silicon that they use is is slightly different to what is used in the chews that you might get from China um so and that’s how they actually are able to grade their shoes they um they are color-coded according to level of of um firmness if you like so there’s s for soft the ones that we stop there read and they’re quite flexible they give quite a bit of um get they have a lot of give um they’re fairly bendable I would probably go that for as a clothing substitute the next level is XT or extra tough so that’s got more firmness so if you’re a fairly moderate chewer you might want to go for that if a chewer is chewing on literally um iPad cases you know really hard things and and wearing through those you definitely want to go the extra extra tough and um they they some of those are as hard as a rock when it comes to the style of chew um look at where your child or loved one or yourself are chewing so if you’re going to the back molars you want to get a chew that’s got a good reach um you might look at say for instance the brick chews they’ve got a um they’ve got different textures as well so it gives a different sensory input as well depending on your preference some choose if they’re working their tongue might have um like I’m thinking of the Ninja I wish I had some here but um I could go and grab them but I don’t want um don’t want an illusion you listeners um the ninja chew has got some for one of a better word holes in it in the design and that gives the opportunity for the tongue to do some work as well um so you can look at choose and I in terms of a clothing substitute I would go soft there are a couple of fabric chews you can see them on our website um that are a good alternative as well because we know that uh that particular child is seeking out a fairly soft um flexible and material so that might be an alternative and that’s they’re really easy they have a velcro strap to take off throw in the wash um and Bob’s your uncle so you’d probably want to get a couple they come in different colors so you can match school uniforms and things like that um so that’s another option the other thing you can do is what we when we talk about a sensory diet one of the things that we can do is schedule oral input through the day so rather than wait for a child or a person to become dysregulated and need to chew because they’re they may be becoming anxious or they’re in sensory overload or whatever um what we can do say in the car on the way to school we might provide them with some oral input and it doesn’t have to be a chew it it could be could be chewing gum it could be crunchy Foods um that crunchy foods can be quite alerting it could be thick shakes through a thin straw and that’s giving you loads of heavy work it’s chewy Foods tend to be more regulating um so you can have food you can be blowing bubbles you could be using a um a you know those um like they’re party favors and you blow in the pipe and you could try and get the ball to land into the little basket obviously that depends on safety and whether it’s a choking hazard and things like that but there are loads of different oral input toys and games and resources that can provide an alternative as well to chewing so you could schedule times during the day to provide um that oral input to help them be regulated yeah especially prior to a situation where you thought that um they might become disregulated
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I hope that helps yeah there’s some great options there I think um a real takeaway point is that proactive strategy right like we’ll see if we do we are doing that scheduling and we’re getting in before there’s a real need for kind of um really intense chewing on whatever he can get access to if we can give him a little bit of input before that um of a similar kind that’s going to be helpful amazing thank you we’ve got uh my four-year-old is constantly moving around to the extent that we struggle to get him to sit with us to practice the things our speech he requires us to practice do you have any suggestions or this is one I see a lot the constant movement like a whirling dervish yes yes so well interestingly because a lot of as you would know we run a specialist tutoring center here yeah um the last term I had a few parents that would actually sit in and their kid would be sitting on like I we at our desk they’ll just sell the office is pretty messy but just ignore that but we we always have um spinning chairs yeah anyway um and the they do they can do a bit of bouncing as well um anyway the parents they often say oh my goodness sit still sit still and I go no no they’re fine because by that often they’re at with working with me or cath our other tutor you know after they’ve had a full day of school they’re tired and naturally and many of our kiddos do have ADHD um not all but it’s a high proportion anyway um and they’re spinning and they’re rocking and and I go no they’re actually doing what they need to do because vestibular input is waking them up it’s alerting the the central nervous system and they’re much more likely to be able to um attend to our sessions so I’ve got no problem with them moving what I would do is provide um a way for them to move that also allows them what in a teaching term we call academic engage time so so they can still be working I couldn’t care I’m so used to It’s Like Water for ducks back if they’re rocking and spinning I don’t care because we’re still getting the work done um so what I would do is it clearly that child is is showing you that they need some vestibular input and also if you do if there is a task that does require them to be fairly still I would always always do some heavy work so one particular boy that I worked with um man he was tough work I had to break out all my skills so the very first thing we did we’ve got carpet it’s a short Pile in the store and we’ve got a double like a big scooter long scooter board and he would do um scooter board around all around our shop while he was saying the times tables mind you because didn’t want to waste any time he had so much heavy work especially on carpet then I’d pop him into our um the compression sensory swing the Harker one and I would always do rhythmic linear movement so because that is giving him the vestibular input but it’s also in a compression swing so he’s getting a nice full body squeeze but the linear rhythmic movement is helping him to ground it’s there’s no um it’s no coincidence that when we’re with infant babies trying to get them off to sleep we do rhythmic movements even the drum beat for instance on on their back or bottom for instance um we just instinctively know to do that so I would do heavy work I would get them to do some load up the wheelbarrow or the shopping from the car get some heavy work done get a scooter board and get them doing some fun heavy work make it hard like yeah don’t make it too easy on tiles um and then I would follow it with some rhythmic swinging if you go yeah but it’s raining outside I can’t go outside blah blah use we use in my home we’ve got a um a 15 uh China bar from Kmart it holds 100 kilo and I thought oh I betcha that will fall you know blah blah I bet you it’ll Mark the paint no it does not it does not Mark and we’ve got well we moved into a brand new house and I was a bit worried about taking it from our old place not beautiful and so you can also get a 50 chin up bar from Red Bull it holds 130 kilo and they um fit a wider door frame if your door frames aren’t standard so we’ve got that at home and we’ve got a compression swing at home as well so um
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we can easy put that up and down so easy so if you don’t want to attach a swing say the compression swing because it comes with all you need to put into a beam if you don’t want to do that you can use a chin up bar and it works rate I promise even with adults it doesn’t yeah it works beautifully so I would do this after I’ve done some heavy work I would do vestibular linear input and I would absolutely invest in a spinning chair not doesn’t have to be expensive from Ikea that’s where ours came from and I love them the other thing you could do if you don’t want to do that is obviously a wobble cushion or a Scentsy saddle roll personally I prefer the sense you settle that’s like the peanut um kids can sit on them like a horse and it does mean they get that bounce but it’s a little bit more restricted than of uh an exercise ball because an exercise ball you can go in multiple directions um a sensor saddle roll you tend to go up and down um and that way they can still get their work done so yeah there’s still a bit of a cunning yeah Choice there um yeah so they are definitely they are not they work it works yes always follow vestibular with proprioceptive input by the way okay do your vestibular input and your heavy work which is actually probe as well but um always follow it with probe yeah a squeeze compression vibration massager you know they’re 20 bucks they’re enough they’re um so cheap great option for proprioceptive input all right sorry amazing oh I love that there’s so many kind of practical things that this family can yeah yeah absolutely we’ve got one from a teen parent now teen parents are uh I think uh lots of things that we can do with our younger kids our teens will stop accepting after a while they’ll not be on board so we’ve got a teen parent um who’s saying that they have a teen who used to hugely benefit from a regular sensory diet when she was younger she was regulated by both proprioceptive input in the form of heavy work and Swinging however now she’s a teenager and she doesn’t want to engage in those activities and this mum can tell that her teens regulation is suffering and is wondering you know have you dealt with this what do you do suggestion yes okay I need to have a little think about alternative vestibular input teenagers but proprioception I would definitely be looking at a cloud sack um if you have ndis funding um and your plan managed or self-managed go direct to Cloud Sac because it’s cheaper frankly than to go through someone else like us if your agency managed you you have to go through someone like our business but otherwise go direct Cloud sat teenagers and young adults love them and they are basically a very fancy large um bean bag without the noise so you get in and it gives you a nice full body squeeze just a word of warning with Cloud sex and similar when they say kids that’s the smallest one it still fits to an adult um I can’t remember all the sizes Mondo might be the next one Grande might and you think
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oh yeah I’ve got a big strapping you know 17 year old I’ll get the Grande it’ll take half their bedroom up and oh you’ve you you actually see it because I belong to a few like Facebook um autism groups and stuff like that and you’ve seen them all the time people trying to get rid of them because they take too much room up um yeah just be careful measure up just be aware of how big they are but that is a really good one for teenagers and that age-appropriate sort of appeal the other thing I would do is look at kaiko um so there’s Coco products and not just fidgets even though they started out as fidgets many of their products do provide um what I would call targeted um deep pressure and sometimes weight like the hand rollers um they are designed for teenagers and adults with in mind so they they are the places that I would go to we do sell a lot of their products um not all their range but most of it um so in terms of proprioceptive input we’re looking for weight so the hand rollers um the another one that’s really cool is the wheel spinner um I just love that one so it’s one of my favorites because you can take it’s it’s like a very fancy you know fidget spinner but you can take some of the arms off and when you take one it gives you this wobble that’s gives so much it was cool um uh proprioceptive important you can feel it it’s very cool um almost like a vibration um and a beating um another one that gives um targeted uh deep pressure input so proprioceptive input is the spiky now the spiky is a ring it’s like a very tight old-fashioned telephone chord basically and you roll them up and down your fingers but they give a lot of pressure they’re taught um so you roll them up and down your fingers or you put them in the palm of your hand you squeeze it a lot of the people that find these ones helpful tend to be those that are highly anxious or they bite their nails they pick the skin they self-harm they bite Etc um so it’s a safe way of providing quite an intense targeted deep pressure but without breaking the skin that was so successful that they actually brought out the wrist spikes that are like a bangle and once again you roll them up and down but I like I actually quite like them so I guess it says something about me but um I like flicking it um and you can get different sizes in in those so they’re giving proprioceptive input um those are the things that I’d be looking and they’re so kaiko is um designed by an OT who’s has two sons that are teenagers that are neurodiverse um yes so they were looking for items that weren’t baby-ish frankly that were cool that almost like industrial look that you’d be you wouldn’t care if people saw you with it um but many of them are very discreet so they’d be the another thing that I’d be looking at um in terms of vestibular ways to provide vestibular input for a teenager and adult as I’m here with you I’m spinning I’m I’m I would look at a type of chair like um they don’t even um and they will gravitate towards so I would be looking at something like what I’m on um to provide that vestibular input but in a very appropriate um discreet way um anything that has your head moving or working against gravity is providing vestibular input hence rocking hence hanging upside down hence spinning um anything that is challenging our balance is challenging our and holding our head upright is challenging our vestibular system yeah and I’m just wondering what activities might be a good one like gymnastics and things um yeah yeah that that’s a little yeah after school or after work or whenever I’m just trying to think of hobbies and things that or or sports or whatever that might challenge like be a good vestibular um almost like plugging it in through their day or their week so they’re getting that vestibular input yeah but in a really constructive um why yeah I had a Teen family who um their boy went to parkour classes damn right yeah so he um did that I think two afternoons a week and so he was kind of bouncing from wall to wall and um really using his body to move himself around in space um and because it was a basically a solo sport you don’t need to do a whole bunch of chatting with people or distraction in that way he found that a really um good option for his his regulation and again it’s quite cool you know it’s a bit it’s a bit funky teens love that totally totally yeah I suppose you know those um I mean it’s I guess it’s it’s something an activity that you could do once or twice a week but even those trampoline yeah absolutely they’d be fantastic but they do tend whether there’s time of days that I’m that are for teenagers and adults because in the mornings they’re sort of overrun by little kiddos which is great for them um but yeah just but in terms of having practical uh vestibular way um input at home when they’re sort of aged out of swings although
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do you ever really age out of a swing I don’t I don’t think we do I think we love things forever one thing you could do like like I know um at Audi recently they had one of those hanging baskets on a stand because we’ve got one at home hanging on our back deck and every now and then we swap it out for when the kids are over with the Haka compression swing um but I reckon nearly every day I have my coffee out in that that hanging basket and I’m just rocking yeah maybe I can self-diagnose but um anyway um certainly that’s a really age-appropriate way to provide yeah getting away from the more childish swings to something that’s more well that is designed for adults yeah absolutely that’s a great one and we’ve got a final question here that is something that I hear a lot um you know from all kinds of parents who kids who have all kinds of different um sensory needs and it comes a lot after I’ve suggested something to them like a swing or or whatever and it’s that I’m constantly told different things about what is okay to charge for and what isn’t for sensory items on the ndis what um I wanted to get my child something to climb on as when he’s heightened he wants to climb everything what do I do I keep getting mixed messages do you hear this a lot as well you’re nodding like you do all the time on the daily yeah and sometimes we absolutely know what they’ve been told is incorrect either by a plan manager or whatever so there is a lot of misinformation out there um and but the okay a couple of things the good news is if you are say for instance your plan is plan managed and you keep getting um told no um ndis won’t fund sensory items that is not true there is nothing in the legislation that says that you cannot purchase uh sensory items with your ndis funding that is not true I will just say though plan managers are responsible for if they put and so say um a business like us sends a plan manager for a a customer they send they put an order in online and we send an invoice to the plan manager and the plan manager um approves it and makes the payment um then the items go off to the customer it’s all pretty sweet that’s how it works um if the plan manager gets audited and the ndia say to them uh how come you paid that invoice they should not have been able to buy that item or those items or whatever uh no we’re not going to give you that money and the plan manager Rings a customer and says um or their client uh ngis refused to pay can you pay us the money and the customer says no I don’t have that money so the plan manager gets has to bear the cost of that so that is tends to be why they many plan managers are being very very cautious um do you need a letter from an Allied Health professional or a low-cost low-risk assisted technology and consumable item no you should not then that’s that’s crazy that’s like that letter could cost you 185 or 280 or whatever to get not to mention the time and your kiddo needed that item now that’s absurd the item itself might have been I don’t know fifty dollars or and you’re spending 300 or 100 200 for a letter to justify a low-cost low-risk item no okay so um that just keep that in mind when you’re making your purchases or your choices if you are self-managed you do have a whole lot more choice and control even though we are ndia so we are providers so it’s great for us if everybody is agency
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managed because then they need to purchase from businesses like ours but even though that’s the case we do tend to encourage people to self-manage the core part of their funding or at least the consumables because you can then purchase items from wherever you need to meet your child or loved ones or your own um needs there is a difference between when you have your planning meeting and you say this is what I’m going to need and your lack puts it in and and you receive your funding package that is very different to how you choose to spend or use your funding on the goods and services that you need so what the ndis will fund in a planning stage is very different to how you can spend your funding once you’ve got it so just keep that very separate so when you’re in a planning meeting obviously you need to be saying this is the goals in my plan and I’m going to need this to make that happen once you’ve got your funding how that is used is actually if your self-managed is up to you how do you then make choices um there is a can I buy a checklist on the um ndis website but I’ve got a better one um give me two seconds I’m just going to get off the wall um amazing we love a good um just a simple clear checklist I think it’s kind of inflation that people need that’s exactly right I’m going to hold up to the camera just there I don’t see that yeah I can see it and for those who are listening we will pop a link to it in the show notes for you to have access to it says what can I spend my can I spend my ndis money on this yes no and then different examples love it what I would say that is a that is a modification of the one that is on the ndis website and it was done by the growing space so do you follow the growing space I don’t but I clearly should oh my goodness they are they are I just I feel like I’m a disciple actually amazing yeah so the growing space is um run by a Sam payer and she is she has lived experience with disabilities she has a son with that is neurodiverse and a son who has down since syndrome they’re in their 20s she’s been there done that she is on The ndis Advisory Board and I she really knows her stuff she runs the growing space which started out well is a support coordination service based in Adelaide and she only ever employs people with lived experience of disabilities and these days they have people all around Australia um so this list oh you must follow her on Instagram or Facebook and she runs workshops on can I buy it that’s what it’s called and I’ve done the workshop twice we hosted one here Sam flew up from Adelaide and we had one we hosted um a seminar here so it’s a couple of hours awesome maybe it costs 120 best 120 you’ll ever spend when it comes to the ndis you’ll feel so much more empowered um but just very quickly can you buy the item if you’ve got funding under consumables that is uh for court sorry I’m in core under consumables if you’ve got young children and you because often not always but often you’ll find I don’t know why but it seems to be the case at the moment the trend um children are not getting any funding under core if they’re young children because most of the funding is in capacity building for therapy um that’s uh crazy really because we know that we need to provide lots of supports at home to support the therapy that they’re doing once a fortnight anyway um hopefully that will change but because of that anomaly they have there is the capacity to have an amount of funds allocated under capacity building for low-cost low risk for consumables basically so just be aware like if they say oh no you get no funding for consumables if you’ve got a three-year-old you can but you need to Advocate you need to know that but anyway let’s just say you’ve got funding under core for consumables very first thing you need to ask is the item that you are purchasing or wanting to purchase is it disability related that’s your number one like if you have twins and one has a disability and one doesn’t would you be buying this item for the child that doesn’t have a disability well if you say yes well you have to wonder like if you were going to be uh do is this I should you be buying that item anyway for your child with a disability so your number one question is is the item you’re wanting to buy would you be buying that if your child didn’t have a disability so num the things that you’d be looking at are their level of need um and um and the other thing is the age so so um if you if I was a 19 year old and I couldn’t leave the house without a form of stress ball yes I would imagine I should be able to use my ndis funding because okay maybe you expect a seven-year-old to have a fidget spinner because they were a trend like you but you don’t expect a 19 year old to have one um that is disability related um so that’s unique number one is it disability related and if you need to be buying that and you wouldn’t normally be buying that if your child didn’t have a disability that’s your number one question so just know that what the ndis fund and how you choose to spend that funding are two different things and this checklist that um is available from the growing space um and so is their workshops please please do it you will feel so much more confident that’s your number one question um of course there’s um other things
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like you know is it working towards the goals of the plan um is it cost effective like the interests aren’t going to be paying for a gold and diamond started fidget spinner um I know I’m being a little bit facetious but you know what I mean it needs to be a an affordable cost effective it needs to not be funded by another government body that’s why you can’t get tutoring um within or you shouldn’t get tutoring with ndis funding because there’s a government body that’s called schools um even though many of us would know that um yeah it’s a it can be a battle to in the schooling system to get the supports that your child needs um if they have significant needs um yeah anyway that’s another that’s another conversation um they they are the most pertinent there’s one two three four five six seven questions and if you can tick yes to all of those um then it’s highly likely you could use your ndis funding can I say definitively no because every circumstance is different um but that checklist will and that I would definitely recommend doing the workshop um would give you so much more confidence if there was anything tricky um or your plan manager said no you cannot purchase that harkler compression swing look um most families do not have a harkler compression swing mounted on a chin nut bar in their home it is disability related like that’s not yeah most people don’t have that um and if the your plan manager for instance is saying no no you guys don’t fund swings that’s not true they don’t they don’t it’s not in the legislation um what I would do is I would go through and go through that and I would put on my reasoning down so if there was anything that you were sort of a little bit uh not the gray area you’re not sure go through this and put your justifications on that and send and send that through to your plan manager and if they say no we’re still not funding it we go you know what it’s not your money um I know you are responsible for making the payments but I’m actually going to change my plan manager or I’m going to go self-managed if you in good conscience can complete that and you’ve got your reasoning there yeah go for it um that said as I said there is no definitive answer yeah the whole beauty of the ndis is that was meant to give people choice and control yeah that also does mean that there’s no definitive black and white because everybody is different yes yeah absolutely and I think that that’s why it can be so confusing for people who are trying to kind of understand what they can and can’t do but I love that those resources are available and I will make sure that um the links and stuff are available in the show notes for everybody listening to the podcast thank you for coming and chatting with me today Kirsty I so appreciate your time such a wealth of knowledge um and I’m sure that we can um you know we’ll get some interesting questions and come back and tease your brain again I’d love that I love chatting with you you’re so good at what you do oh stop it that would be awesome thank you um so thank you for listening uh this week to the autism 360 podcast next week we’ll be back with another topic that’s relevant to things that autism parents think about and until then think 360
