Self-confessed ignorant person seeking insight

[Ifyoulike]

I know there are some highly emotive threads running atm and I have no wish to upset anyone, but this does concern a problem I have based on lack of understanding, so am just posting a warning to anyone feeling fragile.

So as not to drip-feed, let me say straight up that I was raised in a family with a mentally ill father (undiagnosed as refuses any medical involvement). He would randomly burn our toys in the fireplace believing they were possessed, and would go through episodes thinking I was evil and trying to manipulate the house against him (at around 8yrs old).

He was also extremely and unpredictably violent, flying into rages, and ultimately left me with permanent internal organ damage, brain damage, and a fractured back. We should have been taken into care but never were.

As a result, I have an intense fear of any unpredictable, invasive, or seemingly violent behaviours in other people.

This is by no means SN specific as I often see violent and unpredictable NT people who appear to be on drugs/alcohol etc. But the difference is that when this is the obvious cause, I feel justified in going out of my way to avoid them.

However, I do not feel it is fair of me to do this when the behaviour is apparently down to SN.

A couple examples (out of many):-

1st
I was on the bus when a young man with Down's syndrome sat next to me. He seemed happy and pleasant and there was no issue at all initially, he made a little small-talk which I was happy to engage in. However, he then began placing his hand on my leg and telling me he liked me. I tried removing his hand and he then kept trying to grip my hand and hold onto it. I'd ask him not to, but then within a minute his hand would be on my knee again.

I was hemmed in and felt trapped and resentful. If he didn't have obvious learning difficulties I would have yelled at him to fuck off and stop touching me. Is it patronising that I didn't? Should I have? What could I have done?

2nd
I noticed that a little girl walking in front of me with her mother(?) was behaving a little oddly and perhaps beginning to have a tantrum. Didn't think much of it until she dropped to the ground and began banging her head against the concrete (quite violently). She then attacked her mother when she tried to intervene, was thrashing around wildly and looked absolutely enraged (moreso than a normal tantrum), as well as appeared very strong as her mother was struggling (and taking quite a beating).

I desperately wanted to help or offer it, but stood rooted to the spot with my own fear. I eventually crossed the street when that fear won out, but I feel deeply ashamed of that day, and dread to think what that poor mother must have thought about the unhelpful stranger staring at her.

I am also ashamed to realise that I seem to be developing a general fear/avoidance of people with SN that exhibit unusual behaviours because it does appear so unpredictable to me.

I've been thinking about it, and thinking about it, and all I can conclude is that I simply don't know how to deal with behaviours like this when I encounter it, what the behaviour means, what to expect, or what is the most appropriate/helpful response I can give.

Thank you to anyone who's made it this far. If you can help me understand a bit more I'd be very grateful, or even if you have any pointers in a useful direction.

Don't beat yourself up so much. No-one can be perfect - including you. Maybe you can do better in time, but take it slowly. I suspect that if you ever do end up with someone close to you who has special needs, you will cope without even noticing (if that is partly what is worrying you). Things that happen in public with strangers are always more stressful / uncertain. I suspect panicking or fretting about it might just make it worse.

Hi ifyoulike, I'm sorry you were let down as a child.

One of the features of Down Syndrome is that the person has limited inhibitions. It's unlikely to have occurred to the young man that you wanted anything other than to be up close and personal. It would be fine to be a but firm in your voice and say 'don't touch me please' or even to move away if you needed to, as long as you do it in a friendly way.

The behaviour of the girl sounds like a melt down -it's a total loss of control by the child because of something that has happened. I find DD has super human strength at those times! Practically, there's nothing you can do but make sure they are safe and ride it out, anyway. Next time, you could say 'is there anything I can do?' wait to be told 'no, thank you' and then move on, knowing you offered.

Dear OP, Would you consider your own needs to be SN?

It's just that given your post, I admire your concern but feel quite frankly that you have quite enough to contend with, without worrying about the sensitivites of parents/carers of people with SN, though it is great that you do.

My DS has ASD, a SN which makes unpredictable behaviour in others very frightening for him at times. Of course we teach him to be less sensitive to it and to develop coping strategies, however, for a very long time this will be about as much as we would expect to achieve. To monitor and control his behaviour and response to the extent that his reaction is more than coping is really not possible until he stops being so afraid iyswim.

I'm so sorry about what happened to you as a child.

Ifyoulike - I'm very sorry to hear about what happened to you as a child. I'm not sure whether you had any help in coming to terms with this, but if not it might be worth considering. I don't mean this as a response to your reactions when you have witnessed the behaviours that you've described, but merely to help you.

With regards to SN people. There are many different illnesses and conditions, some hidden and some not.

Personally when my ds is having a public meltdown, I prefer people to act as Polter describes. However, I cope (not always) but am not frightened by his behaviour because I know him and understand his behaviour. To others his behaviour may appear frightening, but to many I am immediately cast as a bad mother with a delinquent child. However, even as a mother of a child with an asd ds I sometimes find it hard to know what to do when I see another mother struggling in situations that I regularly find myself in. In the past I have generally asked the mother if she was ok and said that I understood. However, I recently had a situation at a weekly swimming lesson in the changing room where a child was screaming (I immediately recognised the behaviour as asd related). The mother was very embarrassed and turned round and said sorry and that her dd was aspergers. Another mother pulled a funny face at me as if the mother concerned should somehow be ridiculed. I was so upset for the mother that I went over and said that she shouldn't worry, that I understood and also had an asd child. (As we were all likely to be in the changing rooms for their ongoing swimming lessons on a weekly basis I had wanted to reassure her. Certainly since she has seen by DS behaving similarly.) However, the mother that i approached seemed to be angry that I had done this.

My DD was very regularly unwell for a number of years and had very brittle and difficult to control epilepsy. She also had a number of other illnesses which required regular trips to and stays in hospital. Whilst I could cope with my DDs condition I have a severe phobia of vomiting and therefore have great difficulty with hospitals. On several occasions I have had to leave the ward and struggled to get back in past a vomiting child and my behaviour did not go unnoticed by these childrens mothers.

Hence what I am trying to say is that even having an SN child does not provide you with knowledge of how to react in every situation and having a sick child does not enable me to cope with other childrens illness. Don't be hard on yourself for not knowing what to do and for your "freezing" when you come across situations that cause you anxiety.

The only reactions that upset me are the tutting, raised eyebrows and comments about his behaviour and my parenting skills.

Can't type very much just now, but wanted to thank you all for the very kind replies. Its very helpful to hear your perspectives, and I take my hat off to those of you who do have to deal with unhelpful public judgements (which I have also witnessed), it can't be easy.

Thank you for posting. It really helps to hear that sometimes good people are just involuntarily upset by the odd behaviour, and (underneath) they 'get it'.

FWIW, ds (who till recently had lots of very major, noisy, public meltdowns) can't cope with other people's SN and reacts much as you do. No-one blames him, he's just oversensitive to the unpredictability and it'll probably be a very long time till he gradually and gently learns to cope with it.

You reminded me of a similar incident I had with a young man who had down syndrome. I was sat on quite a long bus journey and there were only two seats one next to me and one behind. The young man sat next to me and his carer behind and at the time I had no experience of sn.

The young man kept saying I was very beautiful and looked like a angel and he kept stroking my hair. His carer offered to stop him but I said to leave him as he was happy. I am telling you this because I dont have your experiences and even though I let him stroke my hair I felt very uncomfortable and like my personal boundries were broken. I felt a instinct to pull away. So even without what you have been through it can sometimes be a little intimidating.

As for the second incident I would say as the parent of a autistic child who has regular meltdowns the best thing is to ignore. It shows that you actually do care as you started this thread.