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Original poster

I need MN like never before.

63 replies

TheOriginalFAB · 19/04/2011 17:47

I have to post and run as my cat is due at the vet and this will be long but need to tell you everything. If you know me in RL please don't out me but send me a PM.

My son is a surviving twin after I lost his twin while pregnant. He had cranial osteopath treatment and was told by the man things he couldn't have known if he wasn't getting them from DS. He had shut his body down and wasn't hearing/reacting to noise due to the stress of losing his twin and the birth which was also traumatic.

DS has issues, he is very loving and likes to be close physically, sits near me always touching/stroking me arm for example. He doesn't yet understand about personal space but we are working in that.

He has had several hearing tests, some failed, some passed.

He has just had treatment from a different osteopath who sensed a closedness about him and a sadness. Physically there are issues but he will be fine as he grows. I will be talking to her in 2 weeks about taking him back.

His siblings know he had a twin but we haven't told ds2 yet. He is 5 and he is emotional and tbh I think he wouldn't understand and he would be really sad. He cried when he heard I had had a needle in my back to have ds1 and also when I told him I had fallen over. I thought I was giving them a laugh. He is very affectionate, emotional and caring. The osteopath said I need to tell him, and we will, but when and how? DH and I feel he is too young, it is too soon.

Any advice at all would be great.

Back later after the vet trip, hopefully with my cat.

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Original poster
TheOriginalFAB · 20/04/2011 18:12

He hasn't had any development checks since he was 6 weeks old. The health visitor disappeared when I got very ill and now that he is at school they don't want to know.

I have felt for a long time that he isn't right in that he has been affected by his experiences and loss but when I mentioned some of what had happened at the cranial osteopath to a private doctor testing his hearing he just looked at me like the CO and I were mad.

I know that DH would dismiss instantly any thought that DS2 might be on any kind of spectrum but how would I go about it? He is having difficulties at school and is meant to be getting extra support but it isn't really working as they are leaving it up to ds to decide whether to go or not.

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Danthe4th · 20/04/2011 18:15

A friend of mine took her sn son to a co and I can remember her telling me that he took her son back through the birth and he actually moved on the table. It helped them so much as a family cope with him and his needs. Not really relevant to you but I definately believe the experience you have had with the co.

Artichokes · 20/04/2011 18:17

I know it's hard to imagine it coming up in conversation. But say he asks a question about pregnancy, you could answer it and then open it up to talking about how some pregnancies involve one baby, others two etc. Then you could mention that when you were very first pregnant with him you had two babies in your tummy but one of the little babies got ill and went to heaven (or wherever you believe) but he stayed in your tummy and grew into a lovely little boy.

Original poster
TheOriginalFAB · 20/04/2011 18:17

Thank you for that.

When DS had his treatment yesterday he had 2 really deep breaths in and out and his stomach did a ~ movement as he exhaled. I had exactly the same experience when I had some treatment months ago.

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ArthurPewty · 20/04/2011 18:18

This reply has been deleted

Message withdrawn at poster's request.

PeachyAndTheArghoNauts · 20/04/2011 18:20

OK, well it's best to ask for your GP to refer to the CDC or child development team, and just take it from there, Different areas have different systems but bgenerally that is the procedure.

If you want to PM me your email I am more than happy to send you some of my uni powerpoints on diagnosis and what ASD actually is (doing MA in ASD). But IME the easiest way to decide whether it needs doing is to have a look at the triad of imapirments. It's diagnostic but does form the basis of it and is easy to get your head around i think (actual diagnostic criteria is laid out with the DSM- IV criteria).

And don;t panic; even if he got a dx that in no way means limited life chances. Heck ds1 is as severe Asperger's as you can get (behaviourally) and he is head of school council, vice chair of his house and has a thriving hobby as jewellery designer with which he intends to make his millions! Grin. But it may explain some things for you.

PeachyAndTheArghoNauts · 20/04/2011 18:24

Oh and we took ds4 to a CO when he was about 3 months and wouldn;t even be put down without screaming; I was exhausted. He'd had a rapid birth (35 mins start to finish- all hail planned HBs coz it'd have been a tesco car park delivery otherwise!) and the CO showed us how he moved as if he was in pain in his neck. The Co didn't solve everything and ds4 has been referred for ASD (I'm somewhere between being convinced it's that or a different anxirty issue today but there's definitely something) but the CO helped enormously and made an impossible to placate baby far easier and my life much nicer!

I am, at uni, the Queen of peer reviewed science but aI am also at home very pro CO LOL!

Original poster
TheOriginalFAB · 20/04/2011 18:29

I just feel like crying as I mentioned that ds might have ASD and he said nothing.

I will PM you, thank you.

Can anyone tell me how to get rid of the bloody annoying drop down thing as it has no x to delete and it is making me want to give up on MN tbh.

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Danthe4th · 20/04/2011 18:39

cross where it says 'hide the bar' at the end of the bar, drove me nuts as well!!

Original poster
TheOriginalFAB · 20/04/2011 18:43

I can't find it

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EvenLessNarkyPuffin · 20/04/2011 18:43

I know you feel that the CO is helping, but would it hurt to get some other advice as well?

As far as what the CO knew, the vast majority of babies are twins to start off with, with one being reabsorbed - I know this isn't what happened in your case - and few births are 'easy'. If they 'knew' that your DS lost a twin and had a difficult birth it wouldn't be that surprising.

Original poster
TheOriginalFAB · 20/04/2011 18:46

I am not against other advice at all. It is knowing what I need.

The point is the CO DID NOT know I had lost a twin and had a difficult birth.

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EvenLessNarkyPuffin · 20/04/2011 18:56

Fair enough. Peachy's advice sounds good. If he is checked out by the child development team it will flag up any physiological issues eg with hearing that might have been missed and let you know if he has other medical issues. It's easier to deal with things if you know what the problem is, and if you don't know I'm sure your mind is coming up with worst case scenarios.

thefirstMrsDeVere · 20/04/2011 18:58

Hello,

As you lost your twin at a very early stage I really do not think it is vital that you tell your DS now. It is something that he should know but when he is ready. You do not feel he is ready. Fair enough.

YOu could get some advice from a child bereavement organisation. I am sure they would treat your enquiry sympathetically. After all you are telling a child that their brother/sister died. But maybe this isnt the right time.

The hearing tests made me wonder if perhaps your DS has an auditory processing disorder. I am in NO WAY trying to diagnose him but children with APD present as having hearing problems but then have hearing tests that have conflicting results. It is not something that should panic you. If a child does have it, it is worth knowing about.

I know what you mean about the osteopathy. I am generally not one for alternative therapies. I gave it a go with DS because he had such a totally crap start in life. I did get some pretty suprising insights from the therapists. BUT they never said anything negative to me the way yours has and that worries me. Its a very negative and scary thing to say to you - he is' shutting down'.
Infact one of the main reasons I liked going there so much was because they were so kind and positive whilst DC was getting nothing but negativity from HCPs.

ArthurPewty · 20/04/2011 18:58

This reply has been deleted

Message withdrawn at poster's request.

Original poster
TheOriginalFAB · 20/04/2011 19:03

I hear what you are saying about the shutting down thing being negative but I saw it as him protecting himself.

This is huge to process and I need to think what I do next. I can't see dh agreeing but then I have been right and him wrong all the other times wrt the kids health.

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CarGirl · 20/04/2011 21:18

Hi Fab

I just wonder in terms of treatment and helping him how much neuro development delay therapy could help him. My births and pregnancies were far less traumatic but this really did help - my CO recommended it to me.

It also helps with auditoring processing, ASD, Aspergers, dyspraxia etc etc i was very sceptical and was very shocked at the progress the dds made!

www.inpp.org.uk/

there is an assessment questionnaire on there which is worth doing, also INPP is one institute that offers treatment there are others out there.

Original poster
TheOriginalFAB · 20/04/2011 21:27

I have had a look at the documents Peachy so kindly sent me and he doesn't have any of the traits listed as a symptom of autism and tbh he is the opposite. For example it said they don't express emotion at other peoples situation (rough description as head pounding) but ds2 is very loving and caring. I just don't know what to do and can't think straight. DH says he is fine.

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CarGirl · 20/04/2011 21:30

is he perhaps hypersensitive?

Mine actually had treatment for her inability to sleep (to much adrenalin) and the other affect was she learnt to run properly - she clearly had poor upper and lower body co-ordination.

She def doesn't have aspergers/autism anything like that

Other dd had treatment due to hearing issues.

thefirstMrsDeVere · 20/04/2011 21:32

My son has a dx of ASD and is a very caring boy. Very loving.
Its a very broad spectrum.

deemented · 20/04/2011 21:42

CarGirl - thanks so much for that link. Really really helpful.

PeachyAndTheArghoNauts · 21/04/2011 11:35

WRT to emapthy In personally don;t agree that people with ASD have none, research is gradually suggesting the same (hypersensitivity theory for example) and my own research will be on the same subject.

But go with your own gut.

And there could also be a sensory issue instead, hypersensitivity as someone said, or hypo which causes a child to crave deep cuddles etc and can make them seem closed if under stimulated.

thefirstMrsDeVere · 21/04/2011 11:41

peachy I think my boy has the hypo thing. He loves to lean and slide along things. He hits the deck when upset. BANG he is on the floor.

The more I find out the more confused I get tbh.

DS is empathetic but only to a point. But then children develop empathy as they grow whether NT or not. Some adults have never gained it.

Original poster
TheOriginalFAB · 21/04/2011 11:47

DD is easy in that we know what her problems are and are getting her treated.

DS2 has some physical issues I have only found out about this week but emotionally I am stumped.

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PeachyAndTheArghoNauts · 21/04/2011 11:57

ds3 is very hypo; at BIBIC they cleared the building then let off a proper klaxon next to him: not a jump!

MrsDV there's a theory about there being different typs of empathy and that some chidlren have an imbalance that competely explains both my two, albeit balanced diferently. Essentially you get CE and EE (cognitive empthay and emotional empathy), a chid with too much CE appears very amchiavellian and quite cold but does actually ahve soem empathy, it's just it's all very delibearelat managed; the other is a child like ds3 who has no intellectual empathy at all but is still loveingly empathic.

then there's the idea that some kids with ASD are so hyperempathic that they are forced to shut down to limit the effects on themselves; they feel everything too deeply.

I covered those better in an essay on aetiology of ASD if anyone ever wants it (although you'd need to be fairly masochistic!). I do think that empathy is a huge thing in ASD though, esp. after Baron-Cohen contributed to an article recently that linked ASD people to psychos and the root of evil. Hmm.