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Do you have a child with SEN? Can you give me your opinion on this? DS9 v v upset

53 replies

Bafflingthird · 31/03/2020 01:09

I have three boys. They’re v close in age, one has high functioning autism, next one has ADHD and dyslexia/dyspraxia and the third, we had joked, was the normal one. (Obviously we never said that in front of them but you get the idea - this was the one with normal social skills, understood nuance, could focus etc)

Well the last 6 months or so, things have got increasingly difficult. We are very laid back in what we expect from them, so very few demands are placed on them. But even so, A (as I’ll call him) has become more and more resistant to pretty much everything. Utterly contrary, even to his own detriment, anxious, clingy, not wanting to go to school in case something happens to me, more and more sensory challenging, it’s almost like he’s “caught” autism!

He is a sunny little chap usually but if things don’t go to plan, he absolutely LOSES THE PLOT. For example we got a chippy tea the other week and somehow my husband’s drink had been missed out. A was furious and hysterical and wanted us to go back immediately and get it. No amount of reassurance that it didn’t matter, made any difference because to him, it did.

He can’t throw things away - he says that the memory is IN the item and goes loopy if we try and bin anything, even if it’s broken.

I gave him a little soft teddy for him to tell his problems to, thinking he would just give it a cuddle and go to sleep but he actually chats to it and says that teddy tells him what he should do when he’s upset. He says this straight faced - and he’s 9.

What’s prompted me to post is that tonight, fuelled by boredom, I started a craft project which is up cycling and decorating a piece of furniture. It is old and knackered and scratched and if this doesn’t improve it then it’s going to the tip. A saw what I was doing and went mad - hysterical crying, screaming, saying I had ruined his life, on and on. He’s been roaring for hours now and the only thing that quietens him is if I agree to sand off what I’ve done and return it to it’s former shit state, which I’m not prepared to do.

I don’t know what’s going on. I’m quite good at hearing about other people’s kids and thinking to myself “I bet that’s ADHD” etc but I’m at a loss as to what on earth is going on with my own child!

My husband thinks that the needs of the other two were so much more obvious and pressing, that we just haven’t been able to see this is how he has always been. But I don’t know what’s going on!

Any ideas? Give me your best armchair-psych Sen-mum thoughts.

OP posts:
MyOtherProfile · 31/03/2020 01:16

Is A the 3rd child, without a DX? Sorry if I missed that.

Bafflingthird · 31/03/2020 01:20

Completely undiagnosed. Quite hyper mobile. He’s got a bit of a lisp and when he met the speech therapist she asked when he had been diagnosed as there was clearly something going on, and I was like Shock WTF?

OP posts:
OntheWaves40 · 31/03/2020 01:21

Also wondering which child A is

Interested in this thread?

Then you might like threads about these subjects:

StealthBoaster · 31/03/2020 01:21

My first thought is, has anything else changed since he has? Could he be reacting to a loss or be feeling insecure due to a change in circumstances?

I have tried to stop thinking so much about diagnosis (DS is autistic) and instead just focus on the need. So for your DS, he clearly needs control - is he entering puberty? Do his siblings ever destroy his stuff? Why might he be feeling out of control?

I dunno, these are late night ramblings but I would start with approaching the school and see what they say.

Bafflingthird · 31/03/2020 01:22

I have a 10 year old (ASD) and A and his brother are twins, aged 9.

OP posts:
OntheWaves40 · 31/03/2020 01:22

Did you ask the speech therapist what they meant?

Has the school flagged anything up? Prior to CV

BlackeyedSusan · 31/03/2020 01:23

Autistic.

So many traits...

There may have been earlier traits but they were overshadowed by your other children whose needs were not so subtle, or quirky or explained away by circumstances.

Less able to cope as life has got more complicated.

Peers accelerate away socially and emotionally.

My so called NT child was doing echolalia in Asda. Should have bloody spotted it then, a bloody great big red flag. I didn't want to see it. Ds was much more obviously autistic.

So, which parent do they get it from?

Bafflingthird · 31/03/2020 01:23

Nothing has changed that we can pinpoint. Maybe the other two are more settled - EHCPs and support in place finally.

OP posts:
Bafflingthird · 31/03/2020 01:25

Blackeyedsusan they get it from their computery genius Dad.

That said, I’m quite nerdy.

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Bafflingthird · 31/03/2020 01:27

OnTneWaves yes I pressed the SLT and she said that she thought his behaviour was what other people would think of as rude, but she could tell he didn’t mean to be, he just wasn’t aware.

He also is very into a children’s program that is aimed at MUCH younger kids and he’s got very branded toy they ever made with this on it, and he went upstairs and got his entire collection and showed her, because he liked her.

OP posts:
BlackeyedSusan · 31/03/2020 01:27

More likely in hypermobile people. (7x?) See RCGP's Ehlers-Danlos toolkit.

Along with asthma, stomach issues, incontinence, allergies dyspraxia, joint pains, poor walking tolerance...

Fucking connective tissue!

BlackeyedSusan · 31/03/2020 01:28

Which parent is bendy?

Bafflingthird · 31/03/2020 01:31

Me, I’m very very bendy!!! A has allergies, poss asthma (under investigation) and isn’t dry at night and I know he’s trying so hard to be dry!

OP posts:
BlackeyedSusan · 31/03/2020 01:31

You are lucky they are boys. Fewer problems with hypermobility. Easier to diagnose with autism.

Bafflingthird · 31/03/2020 01:32

His twin was assessed for EDS and paed said he didn’t have it but noted he has that velvety stretchy skin.

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Bafflingthird · 31/03/2020 01:32

Why is hyper mobility easier in boys?

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caringcarer · 31/03/2020 01:33

Could he sense he gets a lot of attention when he acts up. Do you have to spend more time on first two because of their needs? Just wondering if A sees dc1 having for example sensory issues, and notices either consciously or unconsciously the attention he then gets to calm him. He then 'learns' how to get your attention. Also acting like this could just seem normal behaviour for him if older two dc model this type of behaviour. Does he mix with other children without specia needs much?

We have child with mild learnimg disability. When he started attending special school he started copying the behaviour of some of the other children who also attended. In particular he staryed screaming loudly and holding his breath. We mentioned it to teacher at parents evening and she told us another child in his class did it. She suggested our dc may be copying other child as he allowed to play to calm him down.

BlackeyedSusan · 31/03/2020 01:36

Look up the toolkit and ask for a referral. Do you while you are at it. Menopause really fucks with connective tissue...

If you can't connect the issues, think connective tissues.

Ask for help from Senco who can see issues, don't wait til they go to a school that denies a problem.

Bafflingthird · 31/03/2020 01:37

That’s a good question and we have thought a lot about it but what’s been pointed out is that he is like this with everyone, all the time. If he doesn’t want to join in with something he just won’t. Wont. That’s here at home or school or cubs (which he’s refusing to go to now) and he refuses all group activity unless he is in control of it or can walk away if he wants to.

So I don’t think it’s for attention coz he does it when no one is looking!

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BlackeyedSusan · 31/03/2020 01:40

Don't know why, suspect progesterone. Boys tend to improve with puberty, girls get worse, or suffer more difficulties.

Marco Castori, is one of the world experts and published lots of papers. Some are quite hard going. It is a long while since I had to study them, and I was a bit rubbish at it back then.

Bafflingthird · 31/03/2020 01:42

Blackeyedsusan Holy Shit. Shock

Ok that’s an amazing fit, for me and for A, although in different ways. Is it an accepted thing? If we went to the GP with this would they know this? Or is it not quite mainstream yet?

I cannot begin to thank you.

OP posts:
BlackeyedSusan · 31/03/2020 01:43

It is common for difficulties to become more apparent as peers grow away from them and they are still behaving at approx 2/3 chronological age.

SE13Mummy · 31/03/2020 01:47

I think I'd be inclined to agree with your husband. Maybe the needs of his brothers have somehow helped him to keep things in check but now they're more settled, he's feeling more anxious and uncertain. He definitely sounds as though he's struggling with things changing without his knowledge/agreement and I expect your upcycling project may become a sticking point because he doesn't understand why you would want to change it. Perhaps it's worth leaving the project for tomorrow and spending a bit of time with him to explain (maybe with stick figure cartoon strips to reinforce what you're saying?) that you felt Sad about all the scratches on the piece of furniture and thought you'd send it to the tip but then you had an idea and thought you'd feel happier Smile if you decorated it. Explain that you know he likes his furniture as it is and that you won't decorate his things but decorating your furniture makes you feel happy.

Is he in Y4? As a primary teacher I've often found Y4 to be the year that children's friendships and play change quite a bit. It could be that he's struggling to grasp the more sophisticated social rules that others operate by or that he's realising he doesn't have the same interests as them.

JudyCoolibar · 31/03/2020 01:51

Is the TV programme Thomas the Tank Engine, by any chance?

BlackeyedSusan · 31/03/2020 01:52

Best advice is look up Royal College of GPs toolkit on search engine. Go through it and write a list of how you each fit. Do the same for behaviour. Look up the signs of anything that might fit, (autism,ADHD)note which ones you/ your child fits. Present the lists to the GP asking for a referral as you/ they have these difficulties.

You don't have to have all the signs,

I say look up the signs because a lot of things are your normal and you don't recognise them as an issue/ sign. ( Oh and if you don't do eye contact you ain't going to notice your child not doing eye contact, hers is better than mine)

Try to remember historical signs too. Eg was always scared of... Never liked... Only will have the blue cup ...

School were adamant DD was not Autistic. Yeah right. She flapped, and clapped through the appointment. Oh and it became obvious about 8 or 9

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