Thread 12. Autism and any other additional needs.

[danni0509]

Thread 12.

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!

Just typing quick as ds needs to get ready for bed. I’ll link the previous threads later.

x

Elizabeth we’ve had a pretty good week. We’ve been climbing, swimming and had lunch at McDonald’s. Lots of screen time for ds too, unavoidable here!

It is DD's birthday (4) today and we went to Diggerland. Good day out was had by all although unfortunately DD is not 100%. If you ever go I would advise against the Groundshuttle ride DD and I were almost crying but DS asked to stay on for another go. It said don't go on ride if you suffer from motion sickness- I do suffer from sea sickness but not otherwise but after being bumped everywhere I felt really sick. I like rollercoasters but DS is in another league - totally fearless. I need to organise a trip to Alton Towers.

DS's 1:1 SEN swimming lessons this week went pretty well. However, yesterday the teacher got confused and when I went to get him at the end of his class said he was switching to another teacher. Then they realised that they had made a mistake and that DS was having 30 min lesson not 60 mins. DS refused to get out and made a charge to the deep end. Fortunately the teachers were in the pool and kept him safe. It was quite striking before they got in the pool DS looked one of the most physically able but in the water he was one, if not the weakest.

This morning, I finally got a reply to my formal complaint to the LA about their delays following AR - the reply to the complaint itself taking over double the time allowed under their complaints policy. DS's case officer told me on 26th May that she was sending consultation to the special school I want that day. From the letter I received today it said consultation was sent on 4th July and consultation period ended on 19th July. But it still doesn't tell me what special school said. It suggests that I contact the case officer, she has not responded to me at all since 26 May when she appears to have misled me. Aggghhh!

Does anyone else have a child who loves making a mess and HATES tidying up? It is a constant battle. We don't want to prevent her from doing what she loves ( junk modelling, art, craft projects) as she really does love it and it keeps her occupied, but we feel like we're drowning.

Any available surface in the house is like an invitation to her to 'get something started' but when she eventually gets distracted mid-way through a project she abandons her mess and point blank refuses to tidy up at any later point. We feel like we spend our lives tidying up after her and our house is a state.

Any advice how to manage this better?

She is 10yo and being assessed for autism (suspect with an element of PDA too).

Happy birthday to your DD @dimples76 !

dimples belated very happy birthday to your lovely dd. The trip to Diggerland sounds great, apart from the nausea!

thirdistheonewiththehairychest no specific help as ds is allergic to any type of craft activity. I do find he’s more likely to help me tidy up then do it by himself though. Do you have space for her to have an art table, or area where she’s able to work on things without them having to be tidied away?

We had a play date yesterday that was lovely but have done very little today. It’s been nice today but quite breezy!

@dimples76 ’contact the case officer’ has become my least favourite sentence. I hope you get some level of transparency.

@Ahna65 hows Dd? Hope she’s feeling better. The screaming sounds so difficult for all of you.

It’s been a meh week. Last Friday we still had no response from anyone about anything, including the head of SEND, so I sent a very blunt email stating that I’ll assume DS is going back to his old school/no longer support informal exclusion blah blah blah. It’s shit, but we need to start planning childcare around where he’s going to be. No one has replied other than his caseworker who still refuses to tell me what happened with the place he was offered last week, just ‘I’m still consulting schools’. It was nice overall though, knowing the kids were happy with DP’s and DH and I just being able to switch off a bit. The three of them have zero danger awareness at the moment.

We decided to not go ahead with reserving a plot, we’re both a bit upset but with school so uncertain we can’t justify the commitment. It’s a shame, it’s the only affordable housing that’s ever come up near family big we’ll see what the future holds.

Kids have had a nice time away, DS has come back with a few more words which is nice. We have 8 in total now that are semi-functional. And a sentence. Admittedly it’s ‘you are a poo’ but I’ll take what I can get at this stage.

Hi I wasn't sure how to find this in the topics list so managed to search and find this thread. I posted about potty training in the potty training thread but was told to find SN section. I couldn't but then I saw your thread when I searched.

Sorry I am new to Mumsnet and still finding my way round.

Anyway is there a particular place or thread area where I can post about my DS? He has autism, speech delay, is v clumsy, struggles with understanding, has hearing aids and is not toilet trained at all (despite DH and me doing lots of different methods since he has been 3.5years). DS is now almost 5. I'm becoming frantic. I asked for advice on potty training topic section but directed here.

Any advice is so welcome, thanks in advance!

@Moanthensmum hi! I think you'd get more advice if you start your own thread on the sen boards. I know many of us have struggled with potty training though so try not to worry.

Moanthensmum you can post in SN Children or SN chat.

We used the Oh crap potty training method but I’m not sure how helpful it would be in your circumstances.

@Moanthensmum Slightly different circumstances to you, but we’re trying the school run autism mum (think that’s what it’s called) method over the summer which is aimed largely at non verbal children. May be worth a look?

Thanks everyone who replied! All advice really good, I'll have a look and also post a new thread in SN children.

Appreciate you all getting back x

@Moanthensmum just to say as well, I almost lost my mind potty training, so I get how you feel!! We had smearing too, which got better when we spent more time playing with kinetic sand, slime, etc.
I also found that prompting or asking if he needed the loo made everything worse as he then saw it as a demand and refused to go etc. So we built it into his routine jnstead and all did it (e.g. we all go the loo when we wake up, before we leave the house etc), until eventually his interoception improved so he could feel when he needs to go (but it's still v routine based at school as there are more distractions etc)

Hi @Jaberwockky hi all, the screaming / meltdowns still pretty bad. Comes in waves but seems so physical that I’m convinced she’s in pain or uncomfortable. It’s hard to watch :( I’m still hoping it’s linked to recovery from illness but that’s now nearly a month so not sure. I think she’s increasingly frustrated she can’t communicate.

im sorry about the plot. I don’t always buy in to ‘everything happens for a reason’ but there have been a couple of times w house stuff that I was so glad in hindsight to have lost out when something else came up. Hope it’s the same for you.

holidays for us next couple weeks but just staycation. Hoping for some quality time and maybe the DDs relationship to bond a bit. Has been a little more attention / glances from DD1 to DD2 (which makes DD2 so happy!)

im still a bit in my head about DD2’s language development - it’s very very slow and ecolalic. Otherwise she seems pretty on her milestones but i do wonder a bit if I should be worried.

Hi @ElizabethBennetsBoots that's a good shout about building into the routine. I've got kinetic sand actually, it's so messy I hate using it but hey, if it works with sensory understanding I'll suck that up ha.

Also interesting now you've said that is that DC does happily do a pee in the morning when we go as part of his routine and last thing at night we just all go. I didn't think to do that throughout the day as well. The nursery don't take DC v often despite us asking so that's an issue too. I've found when we have DC at weekend and go out and about DC will hold in the pee more often but poo is just a disaster sadly.

Moanthensmum it’s quite typical for poos to take longer to get than wees. I think it’s been the same for all of us on this thread. My ds got wees quite quickly the second time we tried potty training but it was a couple of months before he started pooing in the potty (before that he did it in his pants). And we carried a potty with us everywhere for a few months too.

And then it was 2-3 more years until he was completely dry at night.

@Moanthensmum

Potty training is just so hard and they're all so different. My boy is similar in age to yours though based on the comments above, goes against the others in that poo was relatively straightforward but wees were and still are a battle. He's made so much progress but will still wet himself rather than take himself away from what he's doing. We've always encouraged him to take himself which seems to be what he prefers to do and some days he does brilliantly. On days where he looks like he's pushing his luck, we definitely try to direct him more. It's exhausting though as we feel like we've been doing this forever.

Jumping in on the theme of potty training in the hope this may help. We sought advice specifically from the nurse at DSs school about this when he was 6 and nv. The nurse has a speciality he said in success in this area!

So all children are different but DS was literally wetting himself all the time. He would wee on the toilet at 8.30 and then wet himself by our arrival at school at 8.45. He doesn’t care if he’s wet but more on that later. The school nurse said to us that obviously no person needs the toilet 10 mins after going so the very first thing has to be bladder strengthening. He was put in pants and a pull up and given drinks normally but taken to the toilet every 1.5 hours. 10 mins before that 1.5 was up he would be given a massive drink to really try and strengthen his bladder.

I thought this won’t work, he will just keep weeing in between but the more he was taken at those intervals (not every 5 mins like his old school did), very quickly his bladder did strengthen and he started to hold on for that time. Not all the time but mostly. For max input I and school had sweets in the loo and it was massive praise and a sweet if he went for a wee, eventually he really just stopped having accidents in between and ‘held on’, I really can’t believe it worked but it did.

we have now moved on to a more natural way of prompts which still falls roughly in this timescale so when we get up, if we are going out, perhaps before a meal etc. unlike Open he was always dry on a night, it was more control during the day.

poos have been trickier but as the whole toileting improved this did too, plus he will do more of a toilet dance if he needs a poo and it tends to be 30 mins after eating so I can be more on alert. It’s not perfect but it’s a million times better than before.

where he still fails and I don’t know how to get over this is actually telling us he needs to go. With no prompts he would still, eventually, wet himself and carry on as before. But having a child that only needs, say, 6 massive wees in a day is easier than one having a thousand little dribbles which is what it was before!

hope that may help…

@Ahna65 that sounds tough. Are you not going to France? That’s a shame if you have had to cancel. I thought about what you said about DD being very frustrated that she can’t communicate. Do you think she is? It is natural to be frustrated but I often think and SALTs have said that DS does not act like he’s a particular message he wants to impart and I’m not sure he does either. Looking at his day it’s easy come easy go, nice food, drinks, a garden he can take himself to (or us by our hand.) he’s not busting a gut for anything, certainly not toys, not anything really. He’s happy to be with us. We go our. He gets ice cream. We come back. He’s back in the garden. And so on. Obv if unwell that IS frustrating for him if he can’t tell us what hurts but I do see how he pootles along not desperate to impart any info iyswim.

whilst asking for stuff has its place ‘normal’ conversation is about what have you been doing, have you had a nice day etc. if that info isn’t relayed to us, verbally or otherwise, I don’t feel it’s really skin off DSs nose. Sometimes I wonder if that’s a driver in his non communication also.

Out

Yes @carriebradshawwithlessshoes decided against France, had a feeling wojld be super stressful and felt like a bad trip would really bring us all down. Have some things planned around home and day trips. Palma for you guys right? Hope it’s lovely and you find good shade and air con.

yes I do think she’s frustrated for some things, and too frustrated for it to be productive and helpful - but I also understand what you say and I can see that not being frustrated wojld also be a barrier. And sometimes I think it’s not so much frustration as her just not knowing what she’s feeling but knowing she doesn’t like the feeling. Will have another check in with the SALT in sept. Thinking to start trying with AAC (an app type thing?) but not sure if she will pick it up. Anyone had good experiences? Also not sure how many are available in Dutch tbh, think it’s quite US driven.

Hi all, sorry to have dropped off the thread but the end of term with all its events, meetings and so on really took its toll on DD. Lots of regressive behaviour, lots of night waking and generally unsettled presentations. So we had a little 'spoonscation' at home with lots of cuddles, naps, screens and no other stimuli like trips or busy places until she calmed a bit. She's now much more settled and is ready to start having some fun.

@carriebradshawwithlessshoes all the professionals involved with my DD say that as long as she can communicate her needs she sees no value in developing further communication. So I'm really hoping that something clicks in her at school and she starts to see the value in communication. Unfortunately she inherited my stubbornness so until she wants to do something you can't persuade her otherwise.

We had a visit from the Continence team play therapist yesterday. She is also Mum to children with SEN so really gets it. Her main advice to us was to make sure that DS sits down to wee and to try to maintain routine of sitting on toilet for 2 mins 20 minutes after every meal. That's where we run into difficulties as DS does not comply. However DS really likes her and she left us with a chart to record all the toilet sits on which she is coming back to check in 3 weeks so I am feeling a little hopeful ...

Had a mostly great day out at a local forest adventure at a farm today. We'll just gloss over DS kicking a hen, threatening to cut my heart in two and punch me in the eyes and pushing his sister over. I am living v dangerously as I have let DS in the house alone as DD is sleeping in the car. He was tired so I am hoping that he is just curled up with his ipad ...not sure why I am being so optimistic/rash today.

dimples hope ds didn’t cause any mischief alone in the house.

We had a play date at home today that went well. Weather is still a bit pants but dry at least.

Thanks Open all was fine, phew!