Thread 14 - Autism and any other SEN

[dimples76]

Thread 13.

For parents / carers of disabled children, autism, adhd, and all other related neurological conditions. Most of us have children in primary school. But everybody welcome!

Chatting about anything and everything related to SN!

Links to previous threads.

Thread 12
www.mumsnet.com/talk/special_needs/4816294-thread-12-autism-and-any-other-additional-needs?page=1

Thread 11
www.mumsnet.com/talk/special_needs/4711291-primary-school-auties-11-2023-is-here 

Thread 10
www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022?page=1

Thread 9
www.mumsnet.com/talk/special_needs/4502988-Primary-school-auties-thread-9-spring-summer-2022

Thread 8
www.mumsnet.com/talk/special_needs/4422100-Primary-school-auties-step-into-Christmas-and-the-New-Year-thread-8

Thread 7
www.mumsnet.com/talk/special_needs/4303826-Primary-school-auties-summer-and-the-new-academic-year-thread-7

Thread 6
www.mumsnet.com/talk/special_needs/4166833-Primary-school-auties-spring-2021-and-beyond-thread-6

Thread 5
www.mumsnet.com/talk/special_needs/3953023-Primary-school-auties-summer-and-beyond-thread-5?page=36&reply=104240251

Thread 4
www.mumsnet.com/talk/special_needs/3748449-Primary-school-Auties-into-2020-thread-4

Thread 3
www.mumsnet.com/talk/special_needs/3628263-Auties-transition-to-Year-1-thread-3

Thread 2
www.mumsnet.com/talk/special_needs/3451020-Reception-auties-2018-19-thread-2

Thread 1
www.mumsnet.com/talk/special_needs/3080753-DS-with-ASD-starting-school-Sept-2018-I-am-feeling-overwhelmed

@openupmyeagereyes
@Ahna65
@ElizabethBennett'sBoots
@livpotter
@carriebradshawwithlessshoes
@Grouchykiwi

Thanks dimples

Thank you!! Reading and things to say but just packing to come home from hols, will post soon!!

Found you all! Thanks for the new thread @dimples76

Ahna, I think that Open has already provided good advice. I think a direct approach to the schools would make sense. From what Carrie has written about her DS's school somewhere like that would seem to be appropriate - a lot of play but still 'academic' provision.

I am so glad that things are going well, Open.

CAMHS have not really provided any guidance yet...Frustratingly, 3 different people have called me in the last month.

DS and I had a full on day out yesterday. Day trip to London (6 hours round trip on the train). To see the Frozen musical before it closes. We loved Frozen and DS also got to ring a church bell when we went for a wander before the show. Although he didn't go to sleep til 10 he woke at 5am. Insisted that he couldn't go back to sleep, got me up and then promptly fell back to sleep! Wish I could join him but I am tired but not sleepy.

Although I got some useful insights from it, I really didn't like 'How not to murder your ADHD kid'. Have any of you read it? It just seemed to set very unrealistic/materialistic standards. I felt that it was without much compassion towards the parent and a bit preachy. A lot of the advice starts 'don't even think about ...'. And one particular nugget, if you're child commits a crime - do not cry, it's v common'. Of course you're allowed to cry - obviously you need to take action too.

Hi everyone and yes thanks @dimples76 for the thread!

Agree that it indeed makes sense to talk to schools directly. It's a bit silly because before DD was at the current daycare place we did a ton of visits / spoke to loads of places in the region and then I think because we assumed she would feed into the daycare's SEN school, we've dropped the ball on that. We have a 6 month check in at the daycare in Sept and I want to get clear answers on (1) why they don't think DD can manage at the SEN school; and (2) if we don't agree, can we still push for it. Then will also try to visit the SEN school and hear the same. My guess is that numbers are pretty limited and they try and pick the kids they think will flourish. There is a big problem generally with SEN (especially autistic) children dropping out of school here (both MS and also SEN) and I think they are probably picturing a scenario for DD where she wouldn't manage in a classroom set up, the whole thing just being traumatic and then her being at home with us on more waitlists for something else. To be honest that is how I can see it going too sadly. Although I need to really do my research before we do agree to apply for an exemption from the law that kids need to be in school because having read a few things I'm worried that could trip us up down the line.

Think I mentioned in the past but her current day care does have a weekly session one on one with each DC and a sort of educational psychologist where they try to do a bit of learning (for some kids it may be counting or colours, for others just stacking blocks) with the idea to make those tasks more difficult over time. They then have a trial class at the SEN school for kids around 4yo or 5yo to go a couple hours a week to see if it works. We actually really liked this when she first joined. But none of this has really worked for DD - hasn't made it to the trial class but in the one on one sessions mostly just no attention from her or very limited. So I guess they will have that to 'point' to as a test case.

If we do go down the care type route, I think we are going to have to try and really think of how we can stimulate her outside of those hours (e.g. the post 3-6pm window each day), whether it's active stuff like her swimming or something more cerebral. On her swimming, it's amazing the progress she's made there in a year. She swims confidently now and even does forward and backward rolls under water - totally self taught on all that, bizarre!!

@dimples76 I haven't heard about that book before you mentioned but sometimes I think these books feel like they need to be a bit out there to get published (title would imply that too). What were the practical things you did take away? London trip sounds great, well done! How does DS do on the train?

Ahna it’s strange as I often think of the Netherlands being quite progressive but maybe not in this case. Here it seems most are funnelled into MS due to cost and only moved when either school or child can’t cope, then the battle of finding somewhere suitable.

I think you rightly expected the team there to advise on what’s best for your dd, being the ‘experts’ but good to do your own investigations also to be sure. As has been said on this thread before, nobody cares more about your child’s outcome than you and your dh.

dimples I haven’t read that book, what a bizarre statement. I agree with Ahna, take what you can use and ignore the rest. A good rule of thumb in general I find.

The other thing to bear in mind and to ask them about is what if the situation changes? So, if she starts in the daycare place but progresses well as she gets a little older, is there the opportunity to move her to a different setting? Ideally you’d be assessing annually to ensure she’s in the right provision rather than just being left where she is regardless.

Agree with all of that @openupmyeagereyes . I know we do need a kind of recommendation from the educational psychologist to get her a place anywhere, so that's probably going to be the difficulty if we do want to change things from the care default. I'd love to see a set up where she could do a mix of both to trial or something, but probably a pipe dream. There are a couple of totally different schools that basically don't follow curriculum, more child led , focus on being outdoors etc - MS in theory but not really the same - I wonder if they might consider her, even for a day a week or so. Need to just do more exploring and even if (probably) the answers are all that it's a no go, think I'll feel better for trying.

In theory yes she could move out of the care place to e.g. SEN school but I understand that almost never happens.

Re NL, yeah I don't know - they have a law since a few years that every kid has a right to 'passend onderwijs' - education that fits that child. And I think that probably helps a lot of SEN kids but it isn't helpful if you're at the more severe end I think. I have no doubts at all that MS would be an absolute no go so I don't think we are necessarily worse off than we would be in UK I just think that she (probably all of our DCs!) could benefit from something totally bespoke that doesnt really exist.

Back from a very good hol on the coast, sun was out and both Dc enjoyed!

@dimples76 are you hoping the adhd meds may have a positive impact on DS? If they are being prescribed via CAHMs and you have your 14 day contact window can you not lay it on really thick to try and expedite that process? I know there are posters on here who say it was only when they played the real crisis card to cahms that cahms moved up a gear! Is this an opportunity to do that? Failing which if you really felt Jan was untenable could you look at private access to the meds now? We used adhd 360 and it was v quick and not that costly from what I recall (tho didn’t work for DS unfortunately.) I do think the nhs is just rubbish for all of this stuff. Does DS not have a paediatrician? We have one and can contact her in emergencies. From what Danni used to write it wasn’t the adhd meds which helped her DS the most it was other things which can be prescribed by cahms but also a paediatrician.

@Ahna65 that all sounds v stressful! I may have missed this but when would DD start at the new place? I think opens advice is good and I would hugely resist any kind of non school. So you are saying that Sen schools in the NL do not have non verbal 5 year olds in pull ups who don’t follow directions? That’s ludicrous! I’m not surprised there’s millions of ‘exempted’ children! At DSs there are some children who are tube fed with various other ‘severities’ they are still in a school and not written out of the system! God knows where DS would be also under that system!

have you tried toileting with DD? Has nursery or the nanny? Will she go on the toilet or is it that she will use it but also is happy to go in her pull up?

Open, no more OT. May possibly start a diff thread about this but in this instance it seems to boil down to the OT as others have had taking a very child led approach. She writes in her sign off email although DS engaged with the activities he was not that motivated by them which is true. But then he’s not motivated by a lot of things. So do you take a ‘child led’ approach and if he’s not throwing himself from pillar to post in an OT session say well, let him lead and if he wants to sit doing nothing then so be it, or adult lead, direct and hope this leads to gains?? A lot of therapists we have met are very against the latter approach but then left to his own devices he is actually very happy often doing nothing other than (is this case) sitting on the window ledge looking out of the window! Is anyone else’s child like this or would they all have been getting stuck in with the equipment?? I think that’s what they want to see. Apparently in school he is more manic and would be throwing himself into it all, here though he’s not at all like that. I recall one SALT years ago who literally lay on the floor with him for the full hour she was here. Tho tbh given that these people are £100 plus an hour I do find it galling to be paying that for him to simply be sat looking out of a window if we are adopting a ‘child led approach.’

carrie I think that child-led has a time and a place but also, lots of kids need an incentive to do lots of activities that they otherwise would just choose not to do. I know that some parents at ds’ school have complained about the children being given too much choice and just choosing not to do school work because they don’t have to.

For us, it's hard to know where pda ends and just not wanting to do things starts. At school, they use a timetable approach so DS knows when it's his choice and when to do the activity. He used to get hyper if he didn't want to engage but now they try to engage him but generally know when to back off. He then often returns to the work on his own terms. It's hard with pda as you have to rethink things a lot so you're compromising with your child and treating them more like an adult so that their anxiety doesn't spike while at the same time.putting in boundaries and non negotiables (e.g. safe vs unsafe) v tricky and I know school get frustrated as they see his potential but if they push too hard then he retreats back so it's a longer game I think, he'll get there once he sees the point of something but not just because an adult says so.without justification.
Birthday weekend is going well. DS' friends came yesterday, family.today, and his bday tomorrow!

Interesting comments Open and Lydia. I sometimes wonder if DSs hyperness at school is down to nog wanting to do what they want him to do. Really he can pass a lot of time on doing nothing. The first time I was worried about his development when he was just 1 was when I went to see a friend and her kid of the same age was tearing the house up and DS was just sitting there totally placid smiling doing nothing, he still can be very like that. I use those times to ‘work’ with him but it’s not child led then is it.

Hope bthday celebrations go well Lydia.

Not

We have been criticised a lot as parents for being too directional. But in the absence of that and him being motivated by much I fail to see how his development is to progress.

Glad that your holiday went well Carrie. I agree that just sitting with a child looking out if a window is taking a child-led approach a bit too far...I guess unless you were trying to build a relationship with a child prior to starting therapy. When I took DS to OT he would either start the session in a manic mode messing with everything (not necessarily the OT equipment- more often the blinds and the fire door). Or he would flop onto a crash mat and say that he was too tired to do anything. Whatever mode he started in they always got him to engage in their programme eventually. It was 2:1 which probably helped.

I appreciate that ADHD meds may not be the answer but I am hoping that they may be part of improving our lives. Hopefully in time the change of school and work with the therapeutic will also bring positive changes. I won't really have to lay it on very thick with CAMHS as there are currently multiple incidents of aggression every day, eg today he has pushed DD over punched me on the arm, squished 3 snails (and then lined them up on the doorstep like a cat), kicked my Mum's dog and threatened to kill me. That is a pretty average day for us at the moment.

dimples CAMHS told us too that after an ADHD diagnosis they do a parental course before meds are discussed. I’d love to know what secret, magical parenting advice they impart on these courses, and why it’s a secret!

This might seem pretty trivial compared some other problems we're facing but it's driving me mad, so any advice gratefully received.
DS has a large polar bear toy which DD loved too so I bought her one. DS has now decided that DD's one is superior as his has gone a bit floppy (after being thrown around, jumped on etc. for over a year) and keeps grabbing DD's. It feels like I spend half my time retrieving DD's bear and comforting her. I said to DS that if he managed a day without taking DD's bear then I would buy him a new one (it's only £19 from Ikea). However, he has not managed that (lucky if it's an hour). Feel like getting rid of both of them but obviously that's not fair to DD and DS does seem to get good feedback from cuddling it. DD has just complained to me that DS has chewed her bear. She has asked for a new one ...which is not unreasonable but I feel that will be locked into these polar bear battles. Or buy them both new bears? Help!

dimples if it were me I would find a reason to just buy them new ones. Either ‘notice’ Ds doing something good or set the bar so low he can’t help but succeed. A day is a long time for an impulsive kid to control himself.

Mark on the tags who each one belongs to and hope for the best. It may well just transfer to something else afterwards but maybe not.

Argh @dimples76 that "typical day" sounds so tough. Really feel for you with the aggression that's just so hard to deal with. How does DD react, I assume she's somewhat used to it but I'm sure it's hard for you to see. Does she do any siblings type groups (there are groups here for siblings of ND kids, although our DD2 is way too young atm)?

Thanks @carriebradshawwithlessshoes yes it does feel stressful tbh. No deadline as such although everything (care, SEN school) has a long waiting list and I think she kinda needs to move from current place during next year atlhough they don't put a deadline as such on. Have had some correspondence since last post here and have some visits and conversations planned. Re toileting, she wouldn't stay sat on the toilet for long and no would never actually go on there. She takes her nappy off quite often and sometimes we wonder if that is linked to her knowing she has weed/pooed, but often she takes it off just when it's dry too. Remind me how DS gets on - when did you start trying toilet do you remember?

In other news, DD is now in a plaster cast argh!! She's broken her ankle in 2 places, twisted it on the trampoline (she does some crazy moves nowadays). Has a rigid cast for a week then something softer but I have no idea how she's going to manage not being weight bearing / where her energy will go... And poor thing was up most the night with pain. Also trying to take the cast off...

We experienced some of that child led type approach in SALT @carriebradshawwithlessshoes but I think with DD they were still focused on building interaction rather than any S or L as such. I get that it's important for a DC to be regulated to be able to be a state where they can learn but yeah I agree child-led can be too far.

Oh no @Ahna65 that’s the last thing you all need! I hope she’s ok.

DSs situation with the toilet has me at breaking point and I have no idea what to do so any advice really welcome. It’s simple really in that he will and always has used the toilet… if taken/ prompted. However if not taken or prompted he will happily just have an accident and then carry on as if nothing has happened. So staying clean and dry depends on us not him. Sometimes I will see him clearly needing to go and I say DS! Do you need something? And he then runs to the bathroom or signs ‘toilet’ but without that he will just go in his pants. He has no social awareness/ embarrassment about it and obv no physical discomfort. I think he does know (mostly) when he needs to go but it’s then getting him to initiate or go to the actual toilet. He just doesn’t and no amount of telling off, rewarding, praising etc makes any odds. Showing him what he has done gets a cursory glance and smile and he then does it again. I’ve no idea how to move on from that. Another thing I thought school would have a silver bullet for but obviously not.

Thanks Open I wish I had given a more realistic timeframe - like a car journey or something. 2 bears ordered - not exactly helping my decluttering goals!

Ahna, oh no, to the broken ankle. Hope that healing is swift and that you find other outlets for energy. Does DD still like spinning things?

Carrie have you ever tried watches with alarms or other timers to prompt DS to go to the toilet rather than you telling him? As you know toileting with my DS has been far from easy, however, in the last 6 months he has only has 2 or 3 accidents which is a huge improvement. Is he under the continence service? They were not especially helpful with DS but his issues were a bit different - enjoying the sensation of wetting/soiling, unable/unwilling to go to the toilet when instructed. Like yours though he wasn't motivated to go - he would rather watch TV or play.

Had a day out with just DD yesterday. It was so easy and fun. My heart broke a little when we got back home (and DS was at a sleepover at Granny's) when she said it was much better without him.

Aw, try not to overthink that @dimples76 I think all kids like a bit of mum time alone. I bet if DS was away for long she would miss him very much. I think it’s important to do things with children on their own when you have more than one so it’s great your mum has DS to give you that opportunity. I’m really looking forward to my 2 whole nights in Portugal next week with DD, she’s almost adult like now so that should be easy. Glad you are sorted with the bears too 🤣🤣

re the toilet what I want is for him to ‘get’ himself the concept of feeling like he needs the toilet, then recognising that he needs to get up and respond to that by going to the toilet. How do you ‘teach’ that tho, if a child just doesn’t ‘get’ it? Yeah school have input but say they can only do what we are all doing, he will either ‘get’ it in time or won’t (I hate the ‘won’ts’ esp when the great google tell you things like ‘the average asd child is late to potty train, often nearer to 5…’. I mean ffs, I don’t consider my DS to be terribly cognitively afflicted so how is that statistic right? I also think there must be so many kids like him who crack it, so how do they? Again I thought school would have the answer but no.

@dimples76 glad you had some one on one with DS and I think carrie is right that all kids value that. That said, it does sound like your set up is unbelievable challenging but yes I'm sure she has a special bond with DS and although a challenging set up it sounds very tight knit and special too in the better moments.

Interesting re toilet experiences. Maybe we need to try more. I think indeed I had also hoped daycare / school to lead a bit, rather than writing it off. Yes, I don't like hearing that time limit type stuff @carriebradshawwithlessshoes . There's an ABA school near here (well, a few, it's a chain kind of) and the first three parent reviews all mention that the DCs who they never expected to be potty trained got it in the first month of the school. It's a bit weird tbh the way it's presented as if that's the purpose of the school, but I guess it is something parents are focused on. I was pretty anti ABA but I think we will look at the school just so we know we did. We had a conversation a couple years back and then decided to drop it after more research. Think the wait lists are long anyway. Also there's been a recent study against ABA here that made it to government level and I woulnd't be surprised if it got banned. The school doesn't call itself ABA but it's clear that that is the approach.

So far the cast is going OK. The night was rough but she's been chilling with MIL today. Really surprises me she isn't trying to weight-bear. I think she will prob figure out some crawling type moves next few days. Yes @dimples76 spinning loads of things still. Unfortunately she can't go to daycare until cast off, they said it would be too physically demanding which is fair. Just difficult timing with work for me and DH started a new job this week. But you can't time these things!

dimples I agree, children like 1:1 time with their parent. She’s bound to think it’s nicer, though I do appreciate circumstances are different.

Sorry, no advice re. potty training, that was one thing that was relatively straightforward for us, albeit a little bit later than a NT child (3.7).