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I am not sure son will withstand the pressures from his body successfully

This discussion was created from comments split from: Hi, I'm Gill, I'm a PSHE Specialist.

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  • KareninWalesKareninWales Posts: 16Member Connected
    Hi Gill--I have a son who is just turning 11 and not yet experiencing puberty. He is quite profoundly disabled, nonverbal, and while he is not officially ASD (because he is good at social cues) his learning disabilities are a bit all over the place, and in some ways, especially socially, he's quite adept. But in other ways he's functioning on the level of a small child, with an interest in his bodily functions including his penis. We have it mostly under control and he seems to appreciate that showing it in public is not on, but once puberty hits I am not sure he will withstand the pressures from his body successfully. I appreciate that a lot of advice about sexuality is aimed at fairly high-functioning people whose position is very complex because of their abilities, but what sort of advice is available to parents or carers of lower or very mixed functioning people? In particular I would like to be consistent from an early stage so that he doesn't become a problem in public!
  • PSHEexpertPSHEexpert Posts: 168Volunteer community adviser Pioneering
    Hi Karen and thanks for your question. This is a very common issue and one that I really see a lot of. I hope that I will be able to reassure you, as I am usually meeting this issue either as puberty is in full swing (resulting in the full-on hormonal froth!!) or just simply as a young person is experiencing a period of real change and growth as they come to college (I work largely in 16-25 provision). Here at college we focus very clearly on public and private, and aim for a completely consistent message from all our LSAs, tutors and support staff, in line with messages from home so that everything is set out very clearly for the young person. I think that this is absolutely key and it sounds like you're giving strong, positive messages about that. What I usually do (using lots of visual cues), is to link public and private body parts, functions, places and activities and build on it bit by bit in a structured way, making sure that I link back each time to build on the information. So we start by working out what "public" and "private" mean - what are your family's definitions of these? Be mindful that they might change depending on what personal care needs your son has and what staff, etc, are providing those - as they change you will have to revisit the definition with him. I am always really specific that there are only really two private places (bedroom and bathroom/toilet); everywhere else is public. I find that this helps with things like gym changing rooms etc, as it helps to reinforce that even though you might be changing your clothes, there are still rules. Private body parts are of course genitals, bottoms, breasts/chest (potentially); we play games to identify what each body part does, and is it public or private? (I usually use some cut-out body parts or a nice clear diagram of the body; I recommend the FPA "Talking Together About" books, which you can find either easily online). Private body parts are only shown in the bedroom or in the bathroom, which are the only places that are really private. Then we look at activities - reading, playing football, going to the toilet, masturbating - anything where you have to touch your private parts is a private activity and therefore has to be done in a private place, which reinforces the message again and brings you back round to public and private places. It can be helpful to make a set of photos of places your son is familiar with - bedroom, kitchen, bathroom, car, minibus, classroom, cinema, shops, etc - and have him sort them into public and private. Here at college we do very well with this system but the key is to keep reinforcing it and prompt your son to move himself to a private place if he needs to do any private touching. You don't mention what sort of communication your son prefers, but here at college I've gone so far as to make cards with the PECS signs for "Public" and "Private" on them and carried them round, so that I can use non-verbal, visual cues for students if needs be. You could also put those on the doors for his bedroom and bathroom, for example, and make the connection that way. Please drop me another message if that wasn't helpful or specific enough!
    - Gill 
  • KareninWalesKareninWales Posts: 16Member Connected
    Gill, thanks so much for that--as I say, we're not yet at puberty, and Huw is coming on well at the moment with understanding speech (but more or less refuses to communicate himself, with pecs or otherwise, apart from very basic food/toilet requests) so I'm not sure where he will be by the time this really becomes an issue. But at the moment, he isn't really functional enough to understand public/private as concepts, I suspect. We could probably over time manage a list of where to and where to not do various things, but I'm curious as to what people do who have extremely low-functioning children or students? Do they just resort to clothing that can't easily be removed? Huw almóst toilets himself independently (does everything except wipe after a bowel movement, and has a slightly casual attitude towards washing his hands but then again a lot of children do!) so he wears ordinary clothing. As I say, it is difficult as in some areas (toileting) he is brilliant! Others not so much...
  • PSHEexpertPSHEexpert Posts: 168Volunteer community adviser Pioneering
    Hi again Karen! Yes, for some of our students we have found that it is useful to use a combination of tactics, so a firm "no", a modelled gesture or action with a simple instruction (ie "hands on knees" if that's appropriate ), a calm direction to a private place when possible, for example, can work when used consistently over time. With regards the concepts of public/private, again, for students who don't understand them as abstract ideas we can still reinforce appropriate behaviour with our responses, such as guiding students to a private place so that they associate the place/body part/activity. For one young lady who had a repetitive compulsive pattern of behaviour where she pulled her shirt/trousers up/down, we reinforced the tactics described above by encouraging her carers to select tops that had a higher/closer collar line while we were working on helping her to manage the behaviour. However I appreciate that this can be harder with trousers/bottoms, because of the toileting! One thing we are really clear on is avoiding giving it too much attention as that can often make difficult behaviour much more likely as it ensures the focus will be on the young person - we try to be firm but neutral and use distraction to get back to whatever we are doing as quickly as possible and with as little fuss as can be managed (not always easy, I have to admit!). What works for one may not work for another of course but the key is consistency and clarity; communication between everyone working with the young person is invaluable when trying to establish and reinforce behaviour. I hope that is helpful? Thank you so much for your questions!
    - Gill 
  • KareninWalesKareninWales Posts: 16Member Connected
    Yes thanks so much for the clips--I had thought that there must be something like that out there on the internet somewhere, but I hadn't found it, and these seem very good. And yes, I agree--whatever level of functioning is at issue, keeping it low-key is very important. I'm fortunate in that I'm not at all easily embarrassed by Huw's behaviour (after many many years....). Again thanks!
  • Kathy_BramleyKathy_Bramley Posts: 132Member Courageous
    The toilet and private makaton symbols can be quite lowkey if your son's good at social attention, and nobody else is looking. 
    Lucky unlucky
    Guess my diagnosis,
    It may help, but
    Don't guess my kids's
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