Can I quietly sneak in and join you all in here?

(23 Posts)
lowcrabdiet Tue 26-Apr-16 19:35:56

I've been lurking for some time.

I've written and then scrapped quite a few posts. I want to join in your discussions and ask my own questions too. But I sometimes feel so overwhelmed by the situation, that I just can't bring myself to write down our story.

I feel like I have spent so much time this year explaining things to teachers, doctors, CYPS, relatives, friends, colleagues, managers, hr staff etc etc that I don't have it in me to tell our tale again.

But I have gained so much from your posts already. And I'm having a bloody rotten week, and this feels like such a safe space that I thought I'd say hi and then maybe later I'd get up the guts and energy to put it all down.

In bullet points (so as not to be completely vague!) it's Ds 4yrs, suspected hfa/aspergers, aggressive meltdowns, no friends and today a mother of a classmate complained to the teacher about Ds frightening her son with his behaviour. I feel heartbroken sad

OP’s posts: |
PolterGoose Tue 26-Apr-16 20:06:43

Message withdrawn at poster's request.

enterthedragon Tue 26-Apr-16 20:11:50

Hello, sounds like you could do with some friendly ears to bend. It took me a while to pluck up the courage to post too, I mostly post on SN chat but pop in here every so often.

My son is now 15 but I remember the days when he frightened his classmates, had uncontrollable meltdowns, aggressive behaviour, the running away, hiding under desks etc and the worst thing about it all was the ignorance and judging from other adults who should have known better. I often felt heartbroken as well as excluded because I have a son who is different.

I have never told our whole story here and you don't have to either. Please do ask questions, seek advice and you won't feel so alone.

Marshmallow09er Tue 26-Apr-16 20:14:04


Welcome - I lurked for a very long time too (and still do!)
You are definitely not alone.
We have had our fair share of complaints about DS - it is heartbreaking.
But it can also open doors - in our case it was only after other parents complained that school took my requests for support for DS seriously.
You are never alone in these boards. flowers

zzzzz Tue 26-Apr-16 20:20:34

Message withdrawn at poster's request.

lowcrabdiet Tue 26-Apr-16 20:30:46

Thank you all so much!

I am crying again (for about the millionth time today) But this time it's happy tears of relief.

I know it sounds dreadful, because I really wouldn't wish this on anyone, but it is so good to know that other people's kids can be aggressive too.

I know 3 people irl whose children have already been diagnosed with asd, but none of those children are aggressive. So on bad days i can't help but worry that maybe my Ds is just a spoilt brat and I'm a crappy over indulgent mother...

But then I remember that if I was indulging him, I might have far fewer slaps round the face (the most recent ones came when he was told he could only have 1 pack of sweets not 2 - obviously he ended up with none - and then when he was stopped from climbing on top of the ball machine at a bowling alley)

Could you lovely people tell me happy stories about your kids to pull me out of my misery hole (only if you want to of course!)

I am trying to make sure that I always record at least 3 positives alongside all the negatives in his home-school diary each day. I'm hoping the teacher begins to learn from my example wink

Oh and thank you for the bunny ears, they were very cheering grin

OP’s posts: |
Ineedmorepatience Tue 26-Apr-16 20:37:47

Hi Low and welcome to the board.

Marshmallow09er Tue 26-Apr-16 21:19:25

Well my DS (7) often makes me laugh by observing things that no one else would possible observe ('I think you wear perfume when you go out mummy because we're used to your smell and don't mind it, but other people might' shock

He can be absolutely delightful and so engaging when he's happy and relaxed.

We've found the strategies from The Explosive Child by Ross Greene really good for managing him at home (but I have say it prob wouldn't have worked so well when he was 4 - easier now he's 7).
Also PDA strategies do really work too - reducing demands / phrasing things in a way that don't feel like demands etc. Exhausting, yes - but they do really help.

It's hard when your child is explosive and aggressive, but seeing it as an expression of extreme anxiety (which it honestly is), does really help.

Marshmallow09er Tue 26-Apr-16 21:22:03

Oh and we had a really negative teacher last year who didn't 'get' DS at all.
This year his teacher is fantastic. It can make all the difference (he still hates school and it's a big struggle, but she focuses on the positive and appreciates his positives, and for me it's made a huge difference. I massively struggled to cope and keep me head above water last year)

lowcrabdiet Wed 27-Apr-16 07:08:55

Marshmallow your son sounds great grin

What are PDA strategies? I think i will get The Explosive Child book. Ds may be too young for it, but it might help us think about what we can do to help him.

One of the things that has been particularly hard this year was that DS's nursery teacher and nursery nurse both went on long term sick leave at Xmas.

As it turns out the supply teacher is fab and I think has managed the situation far better than the original teacher could have. So it's been a blessing in disguise, but Ds certainly hasn't appreciated the change confused

I'm gearing myself up to facing the parents at the nursery door today. I understand why they don't tell you who has complained, but it makes me feel a bit paranoid that I will be standing there, maybe right next to the person who has complained about him.

OP’s posts: |
Marshmallow09er Wed 27-Apr-16 10:18:37

PDA = pathalogical demand avoidance
It's increasingly being recognised as a diagnosis in its own right, although it's part of the autism spectrum - mainly because it has its own features that maybe present slightly differently to say, Aspergers.
It's not my DS's diagnosis - that's autism spectrum disorder, but when I read about PDA it was like reading his autobiography.
There a section on the national autistic website about PDA (sorry can't link on my phone) which might be worth a read.
Whether it's a primary diagnosis or not (most areas still diagnose autism primarily, which I think it the right thing to do), having those involved use the strategies has really worked for us.
My DS is massively demand avoidant - even a simply request can cause an explosion. Plus he has to feel 'in control' of everything.
So your DS wanting 2 packs of sweets instead of 1 really resonated with me!
Sometimes you have to relax into the PDA strategies as it can feel as its you are going against 'traditional' parenting. But if punishing never modifies behaviour (which it doesn't with us) then finding another way does help.
So for your sweets example I probably would have let him have 2 packs - but then tried to encourage him to save 1 for another time. So he feels like he's in control, but you are also retaining some control by not letting him have it straight away.
You often have to forget about what other people might think too. Strap on your virtual armour. They might think you are indulging him but they don't live with him all the time - you do! Pick your battles carefully - save the big ones for the important stuff and try and let the smaller stuff go (within reason).

I nearly had panic attacks doing the school run last year imagining what the parents where thinking - but I gradually took a few of the 'nicer' parents into my confidence and told them about DS which helped.
And now I really think if any parents are unsympathetic or complain about DS then I don't want them in my life or DS's life so they are not worth spending any energy worrying about.
Find the good ones and stick with them. I've become good friends with another mum whose DS has SEN as we both understand what it can be like and we can support each other when it gets tough at school. You'll work out which are the ones who are the complainers!

I also now accept DS doesn't have play dates etc, but he's fine with that, so I should be too. He adores his younger DD and they play together (when he's not trying to control her, that is!) and he's happy with that. As soon as I accepted that it was like a weight off my shoulders as I think for ages I was trying to fit into 'normal' expectations of what his childhood would be like - but I needed to adjust to the childhood he really wanted and needed.

This has been a bit of a ramble - but the main thing is you are not alone!

I still sometimes question myself over how I handle DS, but then give myself a reality check as by adopting the reduced demands approach definitely reduces aggression, so it does work (but I'm not perfect - he still pushes me to the edge sometimes and I loose my temper and just think 'gah just get in the bath when I ask you!!' But the times I do this just makes everything worse so I try not to! But I am only human!)

Marshmallow09er Wed 27-Apr-16 10:31:27

Oh another thing (see - I lurk around then occasionally come forward in a burst of activity!) to read up on is sensory processing disorder. There a big thread on SN children somewhere I think on this too.
We've recently had a private OT observation for DS and it's been invaluable in explaining so much of his behaviour.
I knew that busy environments (eg soft play, playgrounds) send him 'manic' but this explained why that was, and we now have lots of brilliant excercises to calm him down.
Similarly school are giving him sensory breaks too so that he isn't seeking sensory stimulation himself so much in the playground (eg touching, pulling, hitting other children). It's helped a lot.
As your DS is 4 you can still get an OT referral on the NHS for sensory issues (after 6 you can't, at least in our area). I would definitely recommend trying to do this if you can.

lowcrabdiet Wed 27-Apr-16 18:51:21

Thanks Marshmallow that's all really helpful. I will have a good Google.

Can PDA come and go? We had a period of 3 weeks where it could take up to an hour to get Ds to take his pull-up off in the morning. He seems to have accepted the routine now but only through us removing all signs of anger or 'demand' from our demeanour.

I feel like I role play a happy, cheerful, relaxed mother very well these days. But I do a lot of tearing my hair out behind his back.

There are days (usually several days at a time) where any request is met with refusal and anger. But then occasionally we have days (like today) when he is really agreeable and compliant.

The nurse we saw at CYPS discharged us saying that aspergers/hfa would present more consistently (school and swimming lessons are big flash points, but his childminder rarely sees any problems). But she did agree that we should continue to monitor Ds and consider a re-referal in 6 months if we are still concerned.

OP’s posts: |
shazzarooney99 Wed 27-Apr-16 20:04:35

Hugs and hello, xxxxxxxxxxxxxxxx

Marshmallow09er Wed 27-Apr-16 20:34:09

I don't think it comes and goes, but when anxiety is lower then DS is much more compliant (so by making the nappy removal less of a demand might have done that?)

Also knowing what to expect can help a lot too. Also there may be some irrational (to us) fear he's working through underlying (my DS used to be terrified of any poster with a face on - but that has passed now).

My DS coped at his childminders until Year 1 (age 6), but then she found him increasingly challenging - I think the stress of school just become too much for him and spilled over everywhere.

There can be 'masking' too when a child seemingly copes in a certain setting but then explodes when they feel comfortable - a fair few people experience this when their DC go to school so school think they are coping, but the parents get the fall out at home. It can make getting support very hard for them.

I'd advise to start keeping a diary of all his behaviours now so that you have something to show if / when you might need to go back to CYPS in the future.

DS is very 'Jekyll and Hyde' for sure - for ages a lot of people couldn't 'see it' with him - however we were lucky to be under a very experienced development peadtrician - plus as he has got older his autism has become much more obvious. A nurse might not be experienced enough to pick up on more atypical autism. Plus every child is different - my DS can be utterly charming and compliant 1-2-1 with a healthcare professional - but he's massively explosive at school (and at home, it out and about) when he finds it all stressful.

MeirAya Thu 28-Apr-16 00:42:08

The nurse we saw at CYPS discharged us saying that aspergers/hfa would present more consistently (his childminder rarely sees any problems)

MeirAya Thu 28-Apr-16 00:42:37

That sort of ignorant dismissive twaddle gives me the rage

StarlightMcKenzee Fri 29-Apr-16 16:06:45

Gives me the rage too! Welcome OP.

Laoise9 Mon 02-May-16 09:14:55

Hi I am from Ireland so hope ok to join .

I have three children three boys who are my world my youngest is six my next lad 10 and the oldest 14. My younger two have special needs but it is my 10 year old I am most concerned about . He has been diagnosed with Dyspraxia since age 7 and ADH d since 9 . He has always Had problems with emotion disregulation but it is getting worse . We are linked I'n with Cahms 3,years now and have told them he needs help with this but they just keep repeating same thing .boundaries consequences less technology we have done all this but it makes no difference . Once he has any disappointment refusal or even has to wait he loses it . But last night scared me . He came in looking for dinner it was not ready he repeatedly kicked the door and then used a lot of language . When he asked me later to stay over In a
Friends house , I of course said no .
He literally went mad he threw all chairs on ground threw clothes horse down . Knocked key rack off wall .got all their medals was flinging them . I Said if he continued I would call the police thinking he would stop . Bad move he went outside abs literally got this piece of wood and banged it against wall . We have external insulation done so its Like fibre glass he got through to the insulation . My 14,year old eventually calmed Him down and we all helped tidy . But this really scares me I am not getting support . The school say he is great even though he has refused to go to school three times this term .
Can any one help . I suffer from migraines and finding it really hard xx

MeirAya Mon 02-May-16 16:50:58

Some dc just can't cope with our failure to immediately meet their (often quite unreasonable) expectations.

It feels personal- but it isn't really- it's just that you're constantly coming up against extreme fixated rigidity, and this flips them from anxiety into mega-angry-outburst.

MeirAya Mon 02-May-16 16:51:33

This book is good

lowcrabdiet Sat 07-May-16 14:04:11

Thanks everyone for your replies. I kept intending to come back and reply, but last week was so hard I just buried my head in fanfiction at the end of each day, anything, to stop thinking/over thinking DS's every move.

I will get The Explosive Child. I've seen it recommended on so many threads smile

OP’s posts: |
Imaginosity Sun 08-May-16 22:37:04

I also now accept DS doesn't have play dates etc, but he's fine with that, so I should be too. He adores his younger DD and they play together (when he's not trying to control her, that is!) and he's happy with that. As soon as I accepted that it was like a weight off my shoulders as I think for ages I was trying to fit into 'normal' expectations of what his childhood would be like - but I needed to adjust to the childhood he really wanted and needed.

I've done the same thing this year. Kind of come to terms with the fact that we won't be doing playdates, football etc and that if he's lucky he might make a couple of friends with some children on his wavelength. I felt really depressed last year as I could see the other children all engaging and I just wanted DS to fit in.

He and DS2 get on really well and spend most of their time together playing games. DS1 is very happy in himself. I just hope he'll be ok in school as he might be a bit alone.

I'm trying to embrace him and his aspergers. He loves science so I've got him books and he's planning on making a laboratory in his bedroom. He hates football so I'm not bothering anymore trying to make him interested as he says it's not his thing.

He's happy with his life so I have to be happy with it too .

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