AIBU to sometime be extremely jealous of parents with NT kids

[Studyinghell]

Just tht really, not that I’d wish his personality away or anything like that. But when things are hard Im so jealous of parents with NT kids and kids with no medical conditions

But definitely look at PECS. You may be able to access it through portage but if you can do the 2 day workshop do anyway.

Unfortunately the only workshop near me isn’t until April next year. I could possibly stay with my sister and attend one in London, but lumping my DH on his own with the twins might be tricky (we don’t really do that unless it’s unavoidable - in fact I’ve never been away from them for more than a work day). Will talk to him and see what he thinks.

Yes we use PECS its fat easier for ds than makaton or signalong as it is in my town they introduced it about a year ago for him .

It would be better if both you and DH could go together (I know that childcare may make that impossible - that’s just a ‘in an ideal world’ scenario).

Maybe ask portage whether they can introduce it? A lot of portage workers are PECS trained now.

These sorts of (contrived) videos are great as well
Sorry YouTube didn’t really exist in my PECS days but googling PECS phases and watching videos may be enough to get you going

You have to start with something the child really wants. Some places try to be sniffy about food but if the only thing the child is interested in is food you have to start with that. We started with chocolate buttons broken to crumbs

PECS was brilliant for my DS, but we only started it when he was 3. Earlier would have been better. He took to it really well and the SALT at his special preschool filmed him for training purposes. (Proud!)

It worked for him because he found language and signing too abstract and also too fleeting. Using the cards with photos or symbols on was much more concrete. He would ask for a favourite toy or biscuit etc by passing you a card with its picture on, initially. Got him to realise that communication was useful. Before that he just didn't see the point of asking for something. If he didn't get what he wanted he'd just get upset. It might have been that he just thought I knew what he wanted and couldn't understand why I wasn't complying. Once he got into the swing of passing a card to me and getting the item, he realised that he needed to communicate his wants and desires, if you see what I mean.

I would speak his words for him. I'd offer him a choice of maybe 2 things with their picture (and words) on 2 cards. Maybe a crisp and a small piece of biscuit. Hand over hand I'd get him to pass me or my OH the card with a biscuit on and I'd say, 'I want biscuit.' Once I had the card from him I'd give him a small piece of biscuit. Same again with crisps. Once he got the hang of it he could choose the biscuit or crisp card and pass it too me, me saying 'I want crisp' etc.

I made lots of cards of pictures of his favourite toys next and gave him choices. It really was a turning point for his communication.

That's just a very simple idea to try initially. The whole PECS system is in more depth and has proper rules to follow but hopefully you'll get an idea of how it might help.

My DS2 is 18 now and speaks well, but still chooses not to interact much, but he's happy and doing well.

Massive cross post with JimJams!

There are apps these days you can get to help your child communicate somone i know whose child didnt get along with PECS or siign is dping really with an app , that is depndent on wether your child is interested in phones and tablets (mine isnt).

I have an 18 year old in nappies. I know how you feel. The emotional aspect of this is crushing. The "what happens when DH and I die?" keeps me awake most nights.

My son used an app as well - (LAMP) although things have currently gone backwards with that. It was a real insight into how his mind worked (for example I asked him why he kept taking the x ray style photos on the iPad and he said. ‘Because white is black and black is white’ - people who see him now struggle to believe he has that much going on inside.

You can get a PECS app as well (I have it - haven’t used it with ds1 yet but like the look of it). With the apps it’s always worth following them as they sometimes have half price days (that’s how I got the PECS app - ready for use....)

Another one here who feels your pain. I'm not jealous as such of other parents but wish from the bottom of my heart my little one could do the things other parents take for granted like being able to walk beside me without reins, understand simple instructions like stop, wait and come back instead of running off EVERY SINGLE TIME in to the road or making a bee-line straight for the most dangerous thing. I often feel more like a carer or a prison warden then a mum and this regularly makes me feel bad but I love my LO to bits and wouldn't change my LO for the world, but much of the time it is impossibly hard but we soldier through because we have no choice.

You are doing an absolutely brilliant job and your feelings are normal (and I imagine are shared from time to time by many of us).

@EwitsaHootman

" they'll be obliged to care for him when I get to an age where I can't.

Not so. I have made it 100% clear to NT DS that he has no obligation to his brother beyond that of friendly interest in his welfare (and possibly managing inheritance). The law in the UK specifies that the state is responsible for adults with additional needs, not siblings or indeed even parents.

I have said the same tp ds1 anout his brother maybe keep an eye on his welfare but i dont expect him to care for him., he has his own life

The law in the UK specifies that the state is responsible for adults with additional needs, not siblings or indeed even parents

If you child doesn’t have capacity as an adult then you have limited say over decisions unless you get deputyship. You are not the decision maker in any best interests decions (which can cover issues such as whether your child can be filmed - by you, where your child lives to what they eat) unless you pay your court fees and get personal welfare deputyship.