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

I don’t know dimples, there are so many parents wanting their child to go there. Hopefully I’m just worrying about nothing, they certainly haven’t said it’s a problem so far.

Water play in the garden might change the atmosphere?

Open, didn’t school say quite recently that DS was doing well? In which case I wouldn’t worry. Are they bothered that he’s not there FT out of interest, can they say that that is indicative of the school being not right for him, or don’t they take account of that? If it’s not a factor and they have been positive so far I wouldn’t worry.

DSs school is so mixed he could be doing anything (or not doing anything) and I don’t think they could or would be able to pull the old ‘can’t meet need’ stunt. That said, I don’t feel that’s a good thing really as previously said!

Dimples, does your stepmum still help out with DS? I seem to remember you saying she did quite a bit. Could you have a pm after school where DS has his time with her or your mum and you have DD, so some separate time? Then vice versa? DD is currently with the Inlaws, DS with me. It’s nice sometimes to just have one of them, whichever that is!

Carrie my stepmother used to help out a bit. Strangely since DS tried to push her little dog down the stairs she has not been very keen. My Mum is so stretched as it is and they already help a lot if I need to take 1 child to a party etc

I hope everyone has had a good week. After a rocky start Monday ds has had a pretty good rest of the week. It’s been very warm here the last couple of days so we’ve been to a local paddling pool with a friend and has also had a swimming lesson - he’s doing really well. I’m going to dig out our paddling pool this weekend.

Horrific week this week. The specialist school for DS has retracted their offer - technically the EHCP isn’t finalised yet so need to speak about appealing, alternative provision etc.

DN’s social worker has said that he will be with us till at least December. They declined any financial support as he’ll need to go to nursery on my working days as of September. So fuck knows where the money is coming from. Again I need to look more into it. She also highlighted she feels I’m ‘just not doing enough to support DN’s development’ and to be honest I just feel like shit when I’m trying so bloody hard with all three of them.

DS2 is teething and screaming 90% of the time.

And a lovely bonus - there will be NO respite over the summer. No family help. So just me, and three under 5’s with varying intense needs for five weeks.

I’m just feeling utterly broken at this point. September was the light at the end of the tunnel. DS in school full time, two days a week off with DS2 to try to establish some sort of emotional connection and bond with him, and the end of DN’s placement with us. I just can’t see any of it happening now.

Currently sat crying on the toilet.

I’m sorry there’s just no one else I can actually tell about all this. I’m really not in a great place, but if doesn’t seem to matter if I’m struggling to social services, the local authority, family, the armed forces. I just really feel like no one cares and my best efforts are just never enough.

I’m so sorry Jaberwockky, what a difficult time for you.

How can SS deny funding, if you were foster parents they would receive funding. Is this legal?

What’s the next thing you can do? I think this is a good way to think when you’re overwhelmed. Just keep thinking ‘what’s the next little thing I can do’

And find ways to look after yourself when you can.

Oh Jabberwocky that sounds so tough. What reason was given re the withdrawal of the special school placement? As far as your DN is concerned are you able/willing to play hard ball and say without the childcare funding you are unable to continue - it is so much cheaper for them to have him with you than with a foster carer. As Open says make sure that you look after yourself.

Thanks @openupmyeagereyes and @dimples76 - to be honest I’ve just tried to bury my head in the sand the last couple of days. Now back to feeling physically sick.

With DS1 I have no idea. His caseworker sent a three line email stating that it had been withdrawn and do I have any other preference. I’ve reiterated several times I have no bloody preference at this point as long as he’s somewhere that can meet his needs. She’s not back in the office till Tuesday so I’m trying to ignore it till then.

DN, well, that’s what we will need to potentially do. Say we can’t continue his placement with us. It’s heartbreaking but who knows, they will either magic up the money or look at foster care. I can’t keep him if I can’t provide for my existing children as a result. I’ve sent an email to SW and her line manager so hopefully will get a response soonish. I’m also baffled. I don’t know if it’s because he’s under 2. Bit pissed off as as a looked after child nursery have made a real point of holding a place our him.

DH and I are meant to be viewing houses in the morning with a view to reserving a plot. I’m really struggling to see the point at the moment. No school means no job for one of us, and then the house is just a dream that probably won’t ever happen.

I’m trying to allow myself to have this evening to have a sulk about everything and get on top of the house. It’s an absolute tip and I think I’ll probably feel a bit calmer when I’m not feeling surrounded by physical chaos.

Hope everyone has had a good weekend?

On a plus note (though I do need to run it past the SW aa it’s out of county) DM has offered to have the three of them for a week in the summer holidays. It’s all her and DF can offer as they both still work full time but I’m beyond grateful for it.

Ohh @Jaberwockky this just sounds so stressful for you I’m so sorry.. is the SW typically helpful? Hope this week turns out better for you. So much on your plate with it all. Lovely offer from your DM and hope during that week you can do little to nothing and just rest and decompress a bit.

we had a very mixed weekend. Friday night was grim, 3 hours of sleep, and last night about 5. So not feeling great and also found it tough out and about with DD just sprinting off like SO fast. Scaling a fence with barbed wire.. this sort of thing. how do you guys keep patience and not shout etc when it’s super stressy? im struggling atm. Feels constant.

DH was away with friends Friday which I’m glad for him but it’s also rough this sort of ‘taking it in turns’ rhythm. Means that one of us is always suffering more than the other and I find that a difficult vibe. Planning to talk to work this week about the nanny difficulties.

Does she have reigns Ahna? Will she walk and hold your hand? DS will hand hold which I insist on with roads etc. I’ll let him go if we are on a country walk type thing and he can only go so far or there’s nothing he can get into. He has got better with age.

I do shout and get very cross. I’m not a good mum to DS, far worse than others who write on here, I can tell by the level of tolerance and acceptance that exudes from posts sometimes! I’d say I’m good with DD but sometimes she experiences the snappiness that comes from DS issues.

Jabberwocky I think that your coping mechanisms seem a lot better than mine. Rather than sorting out the house I would probably flop on the sofa watching rubbish telly and eating crisps. I hope that this week brings better news and that the SW gets their act together.

Ahna that's tough. I wouldn't say that I keep my cool if DS is doing something dangerous. DS used to be quite bad at bolting off but this has improved. I used to use wrist strapped reins for a while. The best thing with DS is to turn it into a game and so he will normally respond to meeting shouting 'freeze' and our walks take a long time if DS is the one shouting freeze. However, if DS sees something he is really interested in he will hyperfocus on that thing/person and I think that he really doesn't hear me and would run onto the road/towards another danger without any thought. I try to keep an eye out for these allurements so that I am physically close enough to grab DS if needed.

How are you feeling Jaberwockky, have you managed to speak to the caseworker today?

Ahna the wrist strap reins might be good to try. It must be tricky when you’ve got two dc though. How did the talk with work go?

Things are ok here, ds has had a good couple of mornings at school. It’s too hot though!

I totally, 100%, matter of fact, have absolutely, given up with ds school. (I’m trying to emphasise how fed up of them I am) 🤣

He went back last Monday, (week yesterday) I’ve had 6 emails and 3 phone calls since the start of term.

6 school days!! 👀

I’ve told them I’m going to be stopping his adhd medication and today have had the cheek to complain. (I haven’t stopped anything yet, he has a CAMHS appointment in a fortnight)

HIS SCHOOL HAVE BEEN COMPLAINING THAT MUCH WHEN HES ON MAXIMUM DOSE !!!!! So how can they complain I’m planning to take him off it ? Why am I going to keep him on a medication when they give me that much shit when he’s on the fucker!

Every email now they are copying the headteacher into it, they’ve never done that before, they are starting a paper trail and I’m not stupid as to why.

I never even used to get this much agg from his mainstream school (who definitely weren’t equipped to deal with him)

Oh dear @danni0509 , just what you need! Can you jump the gun and ask teacher how they plan on helping himto regulate?
Hugs @Jaberwockky and @Ahna65 , sounds v difficult.
We are not great in the heat!! V hot where we are and flaking out! Sat in the garden a few night ago for a bit ive and now got a ton of insect bites too. Cat keep bringing in mice and birds at all hours!
DS finds it harder to regulate in the heat but he's doing well. Had a great few days at school last week apparently but then got his hair pulled by another child,so was v upset and was quite emotional at the weekend. They're off on a trip tomorrow. I think we're both counting down the weeks until the summer hols now, but not looking forward to the hot weather!

danni are you planning to take him off it because school are still calling about issues so much or some other reason? I’m sorry they are being so unreasonable.

Moomin I hope the trip goes well tomorrow.

I was planning to take him off it open as it doesn’t seem to be effective / working.

It wasn’t working at the smaller dose and it’s definitely not working at the higher dose, (he’s maxed out for his weight now, so couldn’t go up on it anymore) he’s been on 4 different types of medication now, have been trialing for 2 full years now and I’m just completely fed up of it all.

He had a period of about 3 months were he settled down a bit at school, not so many messages and they were happier with his progress. He was a little easier / more settled at home during this time, but not overwhelmingly so. Just took the edge off ‘ds’ iyswim.

I don’t even know what is what with ds anymore, what behaviour is from what disability. He’s got that many pissing diagnosis’

he’s complex in that he has so many different things going on, it’s hard to separate what is what.

He’s completely defiant. Looks for trouble all the time. CAMHS did diagnose him with ODD a couple of years ago, I never really take note of that diagnosis though tbh. No one ever mentions it, just bang on about his autism and adhd.

Just wants a reaction all of the time, he can be awake 15/16 hours searching for trouble, it’s draining.

He’s got serious pda traits, very controlling and demanding, severe adhd, moderate autism, moderate learning disability, severe anxiety. ODD. Can’t be told what to do, no matter how it’s phrased, even in a friendly chat type of way he knows what you’re doing then he turns violent, sometimes he’s violent just for the sake of it.

Each condition has a different way of parenting it, some contradict each other, all I know is he’s so fucking difficult to parent. And some days I’m sick of doing it and couldn’t imagine doing this a day longer.

ODD being strict is what is recommended, rewards and sanctions etc, pda it’s the opposite advice, do you see what I mean about contradictions.

I’ve tried all sorts of strategies and just haven’t found anything really what works. Or if it does it’s for a day or an hour or something ridiculous.

Ive spoken to his school about all the above and it’s what they find at school too, so it’s not just me.

danni I can totally understand why you’d take him off the meds, and why you’re so fed up with school. If they can’t do anything about his behaviour what do they expect you to do?

Have you thought any more about respite? Though from reading some threads it seems hard to actually find carers even if you get it agreed.

Oh Danni that's tough. I feel similarly confused about what strategies to use and if I had a pound for every time DS was described as complex I would be a wealthy woman. One of my friends whose son is pretty explosive and also has a number of diagnoses has recently starting working with a psychologist at CAMHS (this is after years of getting nowhere with them apart from ADHD meds). Did you say that you had an appointment with them again soon ?

DS turns 10 tomorrow. How can this be?! Birthdays at ours are not fun - I would like to fast forward a few days. It came up in my photo memories the first birthday I celebrated with DS (his 2nd). I looked radiant with happiness - made me cry. I had better get a grip and get DS to bed.

Yes danni, can’t CAMHS try therapy of some sort with him?

dimples I do hope tomorrow goes better than you expect. What did he ask for?

CAMHS had mentioned CBT before, but deemed ds not appropriate for the treatment at that time, as he wouldn’t understand the techniques etc. That was about a year ago, I’m not so sure he’d be any more suitable now but I suppose I can ask.

He has seen their learning disability nurse and play therapist a few times, to lower his anxiety to get his blood pressure reading, they see him for 15 minutes before his main appointment, they play games with him to try and relax him, but (no offence) they were useless. It may work for other kids but nothing like that works with ds.

She told ds at one appointment ‘it doesn’t hurt, I promise, just a tight squeeze of your arm’ I said to her, now you’ve said a tight squeeze of your arm you’ve got no chance of him having it done, she made it worse by saying that, and really annoyed me when she didn’t think it through.

Then my blood pressure was raised (they always do mine to show ds it doesn’t hurt) then she made a fuss saying go to your dr etc, she was really fussing, I said that’s normal for me etc, but because of the fuss ds was saying is my mum going to die, will high blood pressure make my mums arm fall off etc etc, making his anxiety WORSE.

Just leave it to me for god sakes!

dimples happy 10th birthday to your ds for tomorrow xx

I got an email this evening, for once nothing negative.

Ds has been on a ‘well-being day out’ today, I had no idea this was happening, but he’s left the school with 2 members of the pastoral team, and gone for a walk to an old railway line and taken some photos, they were gone for 2 hours.

They sent me some photos of ds taking some photos and he looked like he was enjoying himself. He was reading some old station signs and finding out information.

Im not sure entirely why they did that today as it was nothing planned or mentioned to me, (I thought they were supposed to gain permission before a trip out from school? Not that I would decline if it was something to benefit ds)

Perhaps it was for a change, get him out of the classroom, not sure. I’ll ask when she next rings. With her saying a ‘well being day out’ maybe because they can see he’s having a difficult time lately.