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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:
Bafflingthird · 31/03/2020 01:54

Gosh yes! He’s 9 going on 6! His twin is the opposite and is hyperlexic and is only really happy chatting to adults.

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Bafflingthird · 31/03/2020 01:57

SE13mummy yes he’s y4. I’ll do some sort of social story with him, that’s a good idea. That said, I think he somehow assigns personality to objects and there for it’s like losing something alive if we throw things out. (He also assigns gender and personality to numbers too.)

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Bafflingthird · 31/03/2020 01:58

Blackeyedsusan I’ve got the toolkit open and am now lying in bed, shaking.

OP posts:

Interested in this thread?

Then you might like threads about these subjects:

BlackeyedSusan · 31/03/2020 01:59

Try the Sen boards. Lots of different experiences, though you have a family of them of your own. My two are so opposite in their autism. Hence not spotting the oldest ones autism initially.

BlackeyedSusan · 31/03/2020 02:04

Yeah, scary isn't it?

I remember researching autism in girls... For DD, but oh my god did it answer lots of questions... I am on the waiting list.

I found the toolkit after I was diagnosed with HSD. But yeah, reading it linked more stuff in.

Knowing helps. Me anyway. I no longer thing of myself as lazy, nope fatigue. Or rude/ stupid/ immature, nope probably autistic.

Bafflingthird · 31/03/2020 02:05

Thanks, I will. I’m very good at the legal side of Sen, but clearly I suck at what the bloody hell is going on under my nose. Sad

Re EDS, I remember clearly having dislocations and subluxations as a child, mainly my knees and one shoulder. I completely dislocated a knee in my teens when I knocked it at a weird angle. EDS was never mentioned, just arthritis, with which I suffer badly.

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BlackeyedSusan · 31/03/2020 02:05

Sorry to drop it on you...

( Refers back to possibly autistic and only opening mouth to change feet syndrome)

Bafflingthird · 31/03/2020 02:05

What’s HSD?

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Bafflingthird · 31/03/2020 02:06

No no no don’t apologise!!! I can’t thank you enough! This was EXACTLY what I meant - I was looking for a steer and I knew it would probably be obvious to someone else but not me!

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BlackeyedSusan · 31/03/2020 02:08

Me too. Obvious when reading it, but it is all normal to you. You get used to their ways and unconsciously adapt to make life easier, so they show fewer difficulties. Also if you have a condition, you are likely to be adapting for you and this have a better environment for similar kids conditions.

No shame in not noticing. You don't see it til you see it.

Bafflingthird · 31/03/2020 02:09

Ah hypermobility spectrum disorders

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BlackeyedSusan · 31/03/2020 02:11

HSD= hypermobility syndrome disorder.

I think DD subluxes, but can't prove it, pops back on examination by a Dr or before we are seen. DD being autistic didn't say anything...

Bafflingthird · 31/03/2020 02:13

Well there’s tomorrow’s research sorted! Crikey, the stuff about the mast cell activation is fascinating. A has IgE mediated allergies as do I, and we both have dermographism. And I have v low blood pressure.

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BlackeyedSusan · 31/03/2020 02:14

Fucked up connective tissue.

Apparently there are lots of types of connective tissue. Lots of genes (?) involved and the most common, least bad type (3) has not got a test/ known gene/ known type of connective tissue...

I have read but don't understand all of the information as it is very academic and I am missing some of the background knowledge.

Bafflingthird · 31/03/2020 02:15

“ DD being autistic didn't say anything...”

I suppose you just think it’s normal. I remember being astonished that other people’s knees didn’t pop out.

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Bafflingthird · 31/03/2020 02:16

Is it related to NF1? We are all covered in Cafe Au Lait spots, but apparently negative for NF.

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BlackeyedSusan · 31/03/2020 02:18

Ah, the fun of writing on the skin.... not as spectacular as some.

Mines not bad. Thank God.

Oh look out for vitamin D deficiency. Apparently that is common.

We are not even going there with Mast cells, though there are signs as an armchair researcher!

Another weird thing is the bumps on the side of my feet...

Bafflingthird · 31/03/2020 02:19

I have just read about piezogenic papules!!!!! I’ve got a cracker on my right foot! Omg!

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BlackeyedSusan · 31/03/2020 02:20

Only one cafe au lait spot between us I think. Need to check I have got the right thing.

We are nowhere near as bad as we could be. I am worse than mum. DD is worse than me.

Ex is the weird one with non bendy fingers.

BlackeyedSusan · 31/03/2020 02:21

But is very aspie.

Bafflingthird · 31/03/2020 02:23

God this is enlightening.

I should say, in all other ways we are healthy and happy and every day I think how lucky we are to have them.

Are your girls happier off school? Mine are happier than piglets in muck, and are mostly half dressed, doing their own thing.

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BlackeyedSusan · 31/03/2020 02:23

I tried taking photos of my joints to see if I could see the bend from the side, oh the contortions to get a good photo...

Bafflingthird · 31/03/2020 02:24

Ha! In the next life we can be acrobats!

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BlackeyedSusan · 31/03/2020 02:26

Oldest DD, happy enough in the right environment, but main school is a bit much for her. She manages and is very academic.

Ds is more sociable with his friends from primary (now Y7) and seems not to struggle. Saves it all for home. Masking. Pop bottle syndrome.

Will not do homework, so you can imagine we are not doing to well with the home schooling lark.

BlackeyedSusan · 31/03/2020 02:28

He is happier not doing school work but is not excercising so is less well regulated.