I wish I had these worries...

[mm22bys]

I am sorry, I don't know if this is acceptable or not (and won't do it again if it isn't), but I am sure we all on here wish we just had these "worries"!

here

[PeachyCosmicExplosion]

Know what you mean Dino, I think ds1's violence / additional learning difficulties meant I've always needed some SN support thats not necessarily applicable to all kids with HFA, but I do feel more 'comfy' posting about ds3.

[Dinosaur]

I saw from the other thread that your DS3 recently said his own name, Peachy - congrats! That's great! Gives me hope for our DS3!

[PeachyCosmicExplosion]

Yep, he says 'arrelpea' for his anme now - thats fab . A puppet seems to be helping a lot, he can communicate far mroe effectively when using one than not- dont know if youve tried that? Might just be DS3!

[Dinosaur]

I hadn't thought of trying that! It's got to be worth a go, though.

DS3 can "sing" the Hello and Goodbye songs from Something Special, which is encouraging .

[PeachyCosmicExplosion]

Does he intonate them? That was very much the starting point for DS3 as well, helped loads- he adores intonating his songs, esp, those from the night garden.

[Dinosaur]

Well, he does it in an approximation of singing - is that the same as intonation?

[PeachyCosmicExplosion]

probably- like attempting the sounds rather than the words?

[Dinosaur]

Yes, apart from the hello and goodbye words where I think he is genuinely starting to get the meaning of the words.

[PeachyCosmicExplosion]

How old is he Dino? Am I right in thinking he's in Nursery year?

[Dinosaur]

He was 3 in August, Peachy - he's starting in the school nursery, mornings only, after Christmas. He's just started doing two afternoons a week at the Children's Centre (which is also attached to the school).

[PeachyCosmicExplosion]

You know what- sounds EXACTLY where ds3 was a year ago, he was 4 in July!!!!! DS3 in that time ahs gone from 'can he ever talk' to 'when will he talk properly'- he has new eords every day now, although he is still hard to understand and about 2 years behind his peers in every area. The language did come with total loss of continence though, whcih was sad.

[Dinosaur]

Interesting! We haven't done anything at all about even trying to potty-train DS3, so you managed it and then he lapsed again ?

[PeachyCosmicExplosion]

We ahd a few minor relapses, we got him trained about 3.4 I think, just before Nursery, he was fine for 6 months then had a few step abcks, was OK again, then lost urinary continence for ages and recently totally lost faecal continence and now seems totally unaware of when he is dirty- hated doing it but left him in one for a ittle bit ince to see if he would react- nada, nothing. if you ask him where poo goes he can let you know, but he just doesnt know he is doing it.

[Dinosaur]

Oh dear .

[PeachyCosmicExplosion]

If it emans he can communiate, which it sems to, tbh we'd rather change a nappy and have it this way! he says 'I love you' now- how great is that??? (actually he says I love you too as he hasnt quite got the structure but who cares!). Our next concern is t help him identify when he is ill or in pain as he cant seem to atm- again, much mroe important than nappies (but possibly linked to the knowing he is dirty / sensory as pect if it is sensory at all)

[needmorecoffee]

I rarely post about my 14 yo Dinosaur. He has Aspergers. When he was younger he did the spinning, hand flapping, under the table typ things but they have worn off to never going out, being superglued to the computer and tapping. Didn't know about MN back then (and we didn't have internet during the 3-9 years when he was at his worse,) DD with CP keeps me posting however.

[yurt1]

I think there are enough posters dealing with HFA/AS that you shoulod be able to post comfortably here. Surely it tends to be about the balance of posters rather than anything else? For example I don't feel comfortable talking about ds1 at the NAS groups at the moment (so I tend not to go) because all the people who go have children with AS/HFA. It's just the needs/problems are so different. I dont think it's so much to do with the level of functioning, more the problems. So in the group I've been to there are quite a few children taking GCSE's, so obviously there's a lot of talk devoted to that- which is completely irrelevent to us. Likewise the group I've just been to would have offered nothing to the NAS group because it was all about adult services for non-verbal (adults) which challenging behaviours.

I always think the answer is to get as many people involved as possible, to arrange as many different activities as possible and to make activitities specifically aimed at different 'types'.

BUt I would have thought on here there shouldn't be a problem posting about AS/HFA- there's a large contingent now.

[Dinosaur]

Peachy, I would definitely prioritise communication above rather a lot of other things, as far as DS3 is concerned! I think I am going to start a separate thread on tips for how to start potty-training with a non-verbal three year old, though.

Yurt, it's not that there is a problem specifically with posting on here about HFA/AS - I've always had terrific advice and support - it's more that I hate to think that I might inadvertently make some other mother's day even worse by posting about something which, compared to her child's needs, is just not a big deal.

[yurt1]

Oh no I don't think that happens at all. I think (armchair psychologist hat on for the moment) that after the velcro cows thread there was this mass assumption that that must be the case and that those of us with severely disabled kids must be seething with resentment at anyone with a child who was high functioning. I don't think that's true at all. Davros for example (just using her as an example as she started the thread) has posted on here before that the child she knows who has the same level of difficulty as her son has Aspergers.

The only place I regularly meet children with greater difficulties than ds1 is at his school, and some have such massive difficulties & limited life expectancies that even thinking about dealing with it makes my eyes water. It's such a different league to ds1's problems. But that doesn't make ds1's issues any less serious.

In the same way I've said on here before that whilst we have many problems with ds1 I am pleased that we probably won't have to deal with the severe depression that can go all too commonly with AS/HFA (hope that hasn't made anyone's day worse, it's just an eg). I think of the all these problems as different. Sometimes so different that the support that can meted out between different groups is limited. But I do think this idea that someone shouldnt post unless their child has...... doesn't actually exist.

[Dinosaur]

That's very reassuring yurt1 . Thank you.

It is lovely having you back on mn.

Righty-ho, off to start potty-training thread. Yurt, you got your DS1 clean and dry when he was just a nipper didn't you? Any tips?

[yurt1]

Hmm not quite- he was finally dry on the day he had to start reception. Do get the book about toilet training autistic kids- it's on my website, and another one that looks like the new version.

I thnk the only way is to repeatedly sit him on the toilet, bribe him to stay there and hope to 'catch' stuff. Don't bother teaching to ask for the toilet (I got myself tied up in knots trying to factor in that ds1 would have to ask).

Perhaps go straight to toilet plus seat, rather than potty, so you don't end up having to re-teach.

Davros trained her ds when he was tiny.

[PeachyCosmicExplosion]

Yurt- I dont seem able to find the link to your site and that book sounds like something we could benefit from (although- hurrah- OT appt finally through today!! We're on a run again, new SALT tomoroww / 2nd scan week after / OT week after that! All tuesdays for some reason LOL)- would appreciate it if you could post it, either here or on t'other place? ta

[yurt1]

scroll down to the bottom- both are listed there

[PeachyCosmicExplosion]

Ta

[deepbreath]

Apologies for coming to this thread a little late.

I read the post that mm22bys was referring to, and I thought the same as themildmanneredjanitor about the possibility of the child having Marfan Syndrome. Part of me wanted to say something, but I bottled out.

If the family are worried about this, I can fully understand why... my dh and dd have both got it, so I know the signs and symptoms. As it's fairly rare, I am at risk of "outing" myself now I've said that

Whilst something like this will seem trivial to some, we must remember that our worries are all relative. Somebody, somewhere will invariably feel the same about your problems because they are worse off than you.