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"Sensory Diet" help please (ASD provision)

(13 Posts)
sleeponeday Tue 15-Mar-16 22:48:28

To cut a long story short: DS diagnosed summer 2014 by DK who stated he was "very clearly" ASD. No shock to us as so is my brother and FIL. Had moved him 8 weeks before we saw her from a school certain he was fine and astonished we had booked to see her at all, to one who picked up on his ASD 15 mins into his visit to them and completed the DX assessment forms saying as much, after putting him on SA+ as soon as he started.

It's been a bit rocky at times (notably last summer when he faced his first transition - village school, so Reception/Yr 1 was all in together in the same room with the same teacher, and he was in pieces at home as they prepared them to move up a class). He's now settled beautifully, loves his teacher and TA, and is doing great. School are very supportive after a brief rocky patch, and he has one to one social skills support with a FSW as well as TA guidance. They are even providing him with a fidget he can chew his TA has spotted for him. He has help with things such as putting on socks (can't get them comfy alone), use of glues, towels instead of driers, and our bringing him in hot lunches from home as he can't eat school food. His TA in particular is close to him, but his teacher has a background as a TA to a child with autism before her PGCE so she is also very switched on. They just get it. So does his FSW.

He is also fine at home as long as we don't make him go anywhere or do anything in the week, and he only does very gentle trips to places he loves in the weekends. He feels safe, has a room set up like a nest with lego and books and a little den to hide in. That's all fine too.

But if he is taken anywhere in the week, or to places he can't deal with (city centres are a huge problem) he goes into sensory overload and freezes, sobs, needs his sister's buggy. He will be aggressive to the point of violence at home over utter trivia if he's been taken out mid-week more than once, and sometimes can't go to school the next day because he has such dreadful stomach cramps. He can't cope, and life rapidly becomes hell. So we go nowhere, and nor does his baby sis.

I raised this with his paed, who said I needed Cygnet. I've already done Early Bird Plus and I told him this. He said Cygnet is peer-reviewed and moved on. He also said there was no point in a CAHMS referral for art therapy unless he is self-harming levels of disturbed - that they just send autism referrals back short of that. (This is disputed strongly by a CAHMS psychotherapist I spoke to about it, so now I have no idea what to do - she said go back and push.)

DK rec'd a sensory diet in her DX report, and his 1st paed made the ref. This latest paed has as well. But none of them actually said what it was, and I assumed it would be food related as they all talked about his diet, and I explained he has massive sensory issues around it. So for two years he has coped less and less with the world outside his routine. Last week we took him to a children's play centre for disabled children that he loves from birthday party hires to talk with them about a weekly after school session to try to expand things in a context where he feels safe and familiar (they have soft play, an outdoor adventure area, a trampoline and football space, 2 sensory rooms, and it's all rural and green space), and we are seeing DK again, privately, next week. And now I realise that I haven't been chasing up a "sensory diet" appointment which is not food related, but could potentially help with his very restricted, near-agoraphobic (other than the back garden and school grounds) life. And I had no idea it existed.

Please can someone talk me through what they do, for how long, and how useful anyone has found it? His sensory problems are, along with his anxiety, the really huge challenges for him. He has strong social interest and when calm and settled he manages socially - the other kids all know about the autism and they just accept he is a bit different and that's fine, for now anyway (he's 7 and one of the oldest in the class). He is a lovely, lovely kid, very kind and eager to please, which helps a lot as staff are very fond of and warm to him. But he has such a very limited life in many, many ways. And I am a bit horrified if something his DX recommended, and two paeds have referred for, could have made a significant difference.

He's thriving within the life he has, as long as we don't challenge him to alter it, and the Advisory Teaching service person we have (who is amazing) has just said she thinks he's fine if he doesn't want to go out and is happy with things being so restricted, because what matters is his having a life he enjoys with the challenges he faces. But it upsets me as it seems such a limited life and I wanted guidance on whether the Head's view (that it is unhealthily limited) is right. So we have a follow-up with DK next week to talk that through.

Please can anyone who has had a sensory diet for their child help? How useful is it, and what sort of progress, if any, has it enabled? (And is it in any way useful over the food, or do I also need to chase up a nutritionist appointment to help with that?)

I sometimes feel like I try my very hardest, and still make massive screw-ups. I feel I have let him down a lot with this one, by taking my eye off a ball. But I had no idea it was even available.

AparnaOT Tue 15-Mar-16 23:32:04

Message withdrawn at poster's request.

zzzzz Wed 16-Mar-16 00:23:31

Hi sleep
Nice to see you here. I'm full of cold so off to bed but wanted to basically say hi and mark my place so I don't forget you in the am. There are some people who know tons about sensory stuff who I'm sure will be along in the morning.

Aparna this is a support board for the parents of children with SN and while some of our parents are professionals they don't and shouldn't tout for business on this board.

PolterGoose Wed 16-Mar-16 07:13:07

Message withdrawn at poster's request.

sleeponeday Wed 16-Mar-16 17:57:23

We have to choose our priorities and for me, happiness and education come before most things.

That's what the lead at the ATS says - she is relaxed about his retreat, as she says he needs to be happy. That's the priority. The head is concerned it isn't healthy for a child's horizons to be that contracted, and wants him to have his boundaries pushed a bit.

I'm feeling a lot less upset today - thanks to zzz and a perfect message being firm on not spiralling with guilt! - it's just hard trying to advocate for your kid when you don't know what you don't know. And realising he has been waiting 2 years for something that might really help him, and I've been letting that drift because my focus was on his sensory overload and behaviour and I thought the appointment was food related, is frustrating.

That thread does sound really useful. I think a balance board might be really great, actually, as he loves the tightrope on the climbing frame they have at his school playground, and the balancing is the draw. I'll have a talk with Hop Skip & Jump (that's the play space) about him exploring the facilities they have, and giving me feedback on what he seems to really enjoy. He loved lying on their giant beanbag watching the bubble tube - we have the beanbag, but the tubes seem so very expensive so I want to know if the novelty wears off. His trampoline is a small ultra-safe one we got when he was 3, so it's not that bouncy; a bigger, looser-based may be better as he can't actually bounce that high comparatively speaking. I'll have a talk with him as well about what he thinks he might like to try. Chewing fabric is really important to him - he doesn't get the same satisfaction from silicone rubber - so I may get a range of samples and let him choose some. I'm putting together some info to email DK's PA about events since the DX, as we only have an hour and she thought that might help focus everything, but I will have a long read on Monday so the ideas are all fresh in my mind.

It's hard not to feel a bit drained at times, but on the plus side, I have stumbled across a source of help and input for him I didn't know existed, so onwards and upwards! And I will start asking for a nutritionist referral to help with his sensory stuff around food, as I thought we were already awaiting one. He eats much better now - at one stage all he'd eat was boiled pasta, plain - but he has depleted iron reserves, and we have to supplement for just about everything.

zzzzz Wed 16-Mar-16 18:09:25

Gosh I empathise with "feeling drained". If only we could stop the rest of the normal stuff everyone deals with and just focus on the SN or the other way around, just for a little. I feel flat out exhausted with it all this week.

I'm glad your coming to a plan on how/what to focus on next. I think that makes things SO much easier. I find these MN SN boards fantastic for sounding out plans and ideas and for quick info and a bit of a bolster when things are a bit tough. There are lots of us here now with similar ish children and it really helps to have people who "get it" and also to be honest I don't really know how you find out this stuff otherwise shock

As far as sensory toys etc go are you claiming your DLA?

sleeponeday Wed 16-Mar-16 18:44:58

Gosh I empathise with "feeling drained". If only we could stop the rest of the normal stuff everyone deals with and just focus on the SN or the other way around, just for a little. I feel flat out exhausted with it all this week.

Yeah, that's the thing - I can manage him, but dealing with all the rest on top just makes me want to curl up on his beanbag and watch a bubble tube too! I have this fantasy of getting on a plane and flying somewhere in Europe and checking into a hotel and going to bed for a week. And then coming home - no running away forever! - but after a blank week of no demands and unlimited rest. Be fab, wouldn't it?

I don't think you do find it out otherwise. My mother's experience as a single parent with an ASD child, undiagnosed till adulthood, was uniformly grim because she had no way of accessing information. Bless the internet, essentially.

DLA... ha, no! I got the forms before Xmas, as my GP saw him after school one day (full-blown retreat: coat over head, then when I coaxed him into removing it, screening her existence out and talking to me as though she literally didn't exist - she had to ask me what to ask him and then I had to interpret back) and she raised it then - said to claim DLA, and she would support it. I've since mentioned it to his SENDCO who is very supportive - said the money is there for a reason and to make sure I pull no punches when talking about his needs and behaviour. We do need it, really, even without paying for sensory aids (he has a high sleeper he uses as a nest but won't sleep in - can't sleep without an adult present still - and even second hand, it was a lot). I know its not means-tested but it would actually make a big difference to us. His clothes alone are astronomical; he can't wear many brands, and he has eczema as well as the sensory issues. TBH we can't really afford any of it, let alone DK, but you just do when it's your child, don't you? You find the money somehow. But yes: I need to apply for DLA and stop putting it off.

sleeponeday Wed 16-Mar-16 18:46:58

Wimping out more than putting it off, really. I just hate sitting and thinking about it all in one hit, without all the lovely bits of him to leaven it. But I know I have to.

Off to bed right now but really wanted to recommend this course I've just done online. It's closed now but I'm pretty sure it will run again. Sensory is such a complex thing so you will need to understand your DS's differences before you can put a sensory diet into place..this course has also taught me that you don't always need a diet (it should be called schedule) a lot of the time you just need to respond to the sensory need at any given time and it really sounds like you are doing a lot of that already.

It wasn't cheap but so much cheaper than a private OT and it's information for life really...I'm hoping so anyway.

I must say it sounds like you have a really good grasp of what's happening with your DS and what works for him..I hope to be half as knowledgeable about my own children in a couple of years, I find it all so crazy right now!

Do go for DLA, you're putting all the work in and if you're spending it seeing DK again (we saw her too and she's worth every penny and then some IME) then it would definitely come in handy wouldn't it?

You're doing a great job already grin

knittingwithnettles Wed 16-Mar-16 22:57:54

I sympathise with never having heard of things which you find might have been really useful. I had never heard of "sensory diet" till the last few years, and ds2 is now 14 with Aspergers, and quite a few SP issues.

I been reading a book called The Out of Synch Child has Fun, which is quite reassuring because it reminds you that a lot of the things that children do playwise, or did do playwise, were a form of sensory diet. So pushing a toy wheelbarrow, playing with sand and water, jumping on the sofa, throwing bean bags rather than balls, stringing beads, sticking, papier and mache. Going on a bus just for fun rather than to get somewhere, going to the corner shops just for a small errand and talking to the shopkeeper and giving him the coins, carrying a string bag full of apples into the kitchen and putting them into a bowl. Children do a lot less of these things, physical things, now than they did - we tend to do our shopping in big supermarkets with flickering lights and noisy crowds make a journey seem very overwhelming, or there is the stress that you are actually trying to get somewhere, on time. Anyway it made me think. We found it difficult taking three kids out anyway, I don;t think we realised that ds2 was contributing to the issue, but in retrospect I now see he was v impatient and distracted - basically a flight or fight response to adventures when he was little, talked v loudly, never still, exhausting to manage when out and about although he appeared to be having a good time. Also the toileting issues didn;t help. So it is definitely a problem just "coping" with their behaviours when out, not just the fact that they might find going out threatening.

One of the things that has helped ds2 in the past was to try and link sensory experiences with things he was interested in - so a tree trunk was for climbing and balancing like in the playground, a short train journey was like a toy train he had the model of, even foods became items in his inventory, red green and yellow peppers were "traffic lights" which he ate happily, despite a very restricted fussy diet of plain pasta (and then he moved onto other crunchy foods like cucumber and carrots) Smells, are another thing you can experiment with, going back to basics with very delicious simple smells like scented home made playdough (google) or even spices in your kitchen cupboard (beware nutmeg is a hallucinogen and poisonous in large quantities)

Ds2 recently did a class on the Silk Road for history and the teacher brought in all sorts spices and textures for the children to feel and smell when they were discussing Marco Polo etc.

It has taken a long time for us to see an OT. Finally we have, NHS and she made loads of suggestions, most of them for much younger children (!) so I would pursue a referral, you won't get it automatically even with a diagnosis. It doesn't sound as if you have one at the moment? They are in short supply, so busy assessing that they don;t tend to get time to do the work with the children who aren;t physically disabled or injured, such as ours, they fall through the net, or certainly we did, despite seeing numerous other NHS health professionals.

personally I think we all expect our children to do far too much nowadays after school, and a lot of children appreciate just a very quiet routine afternoon afterwards.

knittingwithnettles Wed 16-Mar-16 23:09:49

Another suggestion is to do with Art. Ds2 has always hated clay or felt tips or anything sticky, like making biscuits and rolling out cookie dough. Baking for that reason has been a no-no, apart from cooking pasta and chopping veg which he enjoys smile what we found to our amazement that he really does like artwise, and we discovered this in small classes outside school, under duress (he really didn't want to go) is black and white drawings of elaborate inventions/cartoons done very fast, OR incredibly large simple collages with glue and pasta or glitter, and a large chunky paintbrush where he couldn;t do the wrong thing make a mistake. I think years of fiddly things being frustrating, really put him off art and using his hands in mixed media, so he hates, chalks, crayons, feltips careful painting which might smudge, stencils which might move. At secondary his art homework drove him berserk; it reduces me to tears watching him find it so frustrating. Yet the right materials and the right sort of structured art activity "task" which he couldn't get wrong but yet was free in certain ways, gave him so much satisfaction. Art is such a sensory thing, it involves the senses on so many levels and such a neglected aspect of our children's connection with the world. Possibly in our house music took its place, but still.

knittingwithnettles Wed 16-Mar-16 23:14:06

Ds2 hasn;t just done collage, he has done a Van Gogh, a Fauve a mosiac, a Calder, a model of a house with a tree out of loo rolls and tissue paper, all with guidance, but I think they have really helped him - that's just off the top of my head, obviously in school he must have done loads of stuff in primary with his class, but it is the independent work recently which he involved himself in which to me was more ground breaking; that he actually enjoyed it.

sleeponeday Sun 20-Mar-16 12:20:31

DS had a diagnosis 2 years ago, thanks to Daphne Keen and a school SENDCO (she approached us very swiftly when we first visited the school, which was when we were booked in to see DK but hadn't yet, saying she'd been watching him and asking if we'd heard of Aspergers - we knew he was, as we both have ASD relatives, but nobody was listening to us at his first school - the new one completed the forms for assessment by the local ATS and basically said "we strongly suspect he has autism, whatever his old school say with their EYFS scores giving him 3s for self-awareness and forming relationships..." hmm nice insight into autism displayed by that OFSTED Outstanding school we first sent him to, hey) and has had 2 referrals for the sensory diet. Neither has come through though, and I didn't chase (in both Trusts, if you don't chase, little seems to happen) as his food is so connected to his emotional state, so the second was my focus. I had no idea that the referral would help with that. I do now, so at least have a plan of action, for which many thanks to Mumsnetters.

We do do art with him at home, and he loves it - he's a lot better with it at school now too, when it used to be a massive issue. His class teacher clocked that he had sensory issues with some of the materials (glue especially) and was patient and worked with him, so now he loves PVA as he loves peeling it off when it's dried! And he coped - in class, at least - with papier mache despite hating how it felt. They have a competition over Easter next week and he has an Angry Birds theme all planned!

We do take him around the local area (we live in a village, which he's very familiar with, and has grown up in) and some days he copes, others he doesn't. Yesterday was a bad day, sadly. It's so hard, as the little boy we know when he is happy and calm is an utter delight, and the angry, hostile, aggressive and (ineptly) manipulative little chap when he is scared or overwhelmed is exceedingly... I'll go for draining.

Food and the calling it anything else won't work with him, and nor does preparing it - though entertainingly, he now persuades other kids to eat veggies at school by mimicking the altered names game which so failed on him - and he has phobic hatreds of capsicums, for example; he can smell them if cut in the same room and has to leave, same with good quality olives in oil (we use ones in brine to cook with now as he doesn't freak out over the smell). His sense of smell is startlingly strong and it impacts a lot on what he can eat. He was probably a bloodhound in a past life.

You have all been so lovely. It's been a big help. Thank you.

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