I fear for DS future and I am afraid that I am not a person

[Livingtothefull]

Today I took my DS out for the day, I wanted him to have fun. He is 14 and in a wheelchair, has cerebral palsy and severe learning difficulties.

I walked across town to do an errand then took him to the restaurant of his choice. He asked for a 'train map' so I took him to the railway station to pick one up. Then I took him for lunch at a restaurant of his choice (DH wasn't feeling well & didn't come with us).

At the end of the meal DS managed to lose his train map. I don't know how, the waitress may have taken it away with the food leftovers or DS may have dropped it somewhere.

DS had a meltdown because he didn't have his map….swore at me a lot. Apparently and unbeknownst to me I am a 'stupid f--ing bitch'. This is after I have bent over backwards to give him a nice day.

I had to go to the bank afterwards which was open, to pay credit card bill. DS picked up piles of leaflets and threw them on the floor, also knocked over the displays and swore at the staff. There was an elderly woman customer there who was shocked, stared tightlipped at me.

I left bank and told DS I was disgusted at his behaviour and while he behaved in that way he would get nothing. DS lashed out at passers by calling them 'f--ing idiots' including small children. I had to dodge passers by whilst walking him home as I was scared of what he might say.

I managed to get him home and told DH what he had done. I told DH I didn't want to be with DS after the way he had behaved, and left DH to talk to him….DH told me to leave as he knew I had had enough. I came back shortly after and DH made DS apologise to me.

Later DH said that I should have talked to DS and tried to understand how he was feeling. I told DH that I understood the point he was trying to make, but I felt that DS should know how much he had upset me.

I now feel extremely guilty for reacting the way I did. DH is a teenager, he is growing up and it is not unusual for teenagers to lash out I believe? And he is stuck there in that wheelchair, is it any wonder he gets angry and lashes out the way he does?

Anyway I don't know why I am posting here. I am having a rant because I am sick of things being so hard. DS behaviour is bad, but it is so so understandable…but I need to find a way to get him to control it. I just can't have him swearing at passers by the way he does when he has a meltdown.

I also feel that I am not really a person. When I try to broach the subject of how hard it is to deal with DS and how potentially socially isolating it is, I can see people's eyes glaze over; they really don't want anything to do with any of this. I feel isolated from my own family because of this, nobody knows what to say to me. I don't blame anyone if eyebrows are raised at this, I am used to not fitting in anywhere.

'never actively mistreat him'

I just can't help but feel that by hiding upstairs where they know he cannot go - is really awful behaviour, but even more so because their parents aren't telling them to come down and spend some time with their cousin.

It reminds me of my wonderful SIL telling my DM that she didn't like DS visiting them in case he fell on the baby.

Just because it is indirect isn't the same as it not happening at all, and your son must know that he is a pink elephant in the room when your family get together.

Although you may think that your family are doing the best they can - it still upsets you how they are with him, and with you, or else you would not have mentioned it on this thread. Just because they "don't mean" to behave in this way does not make your feelings any less valid. They are valid. Your family should be the people that you and your DS should be able to spend time with and not feel judged.

I'm not sure why giving birth to the boy means that you must be able to cope when others can see quite plainly how difficult it must be to do it day in, day out - and to go to work, and be a wife and keep a home. Sure, it is amazing what a person can cope with when they have no other choice - but it doesn't mean that its easy - I think that you need to make your family see, make them understand just how their attitude is not helping you.

I'm not sure what you have in place already, and I know that you said that budget cuts have meant a cut to some services, but please do contact your local authority and see what support services are available to you. We have a group that arranges days out for disabled children in our local area which means that DS goes out around once a month doing "fun stuff" and I get a day to myself. It makes a huge difference.

Thanks littleredhen, & I am sorry you have experienced attitudes like these from 'D'family members towards your DS, it is very hurtful.

It is really hard to accept that there is 'something wanting' in my own family & how they are with DS. Just a gut feeling which, as you say, must be coming from somewhere in the way there are with him or I would not have mentioned it.

But there is no overtly bad behaviour I can call them out on.....just a very vague feeling that DS is tolerated rather than completely embraced by the family. But I feel sure that they would deny this if I put this to them, and there is no specific evidence for it. As far as anyone is concerned we are a loving, mutually supportive family.

BoboChic, I couldn't really say what (if any) would be an appropriate solution to this case as you describe it....this would depend on the very specific circumstance involved. However I have to point out that I travel regularly on the bus & I frequently witness seriously anti-social behaviour from 'regular' non-disabled passengers. Nobody suggests that these people should be removed from the community and quarantined.

In our bus there isn't any anti social behaviour (apart from this) - which is why I can consider letting DD take the bus on her own. Obviously if it were a generally risky environment I wouldn't consider it.

The point is - how great are the allowances that the general population can make for behaviour that would not be tolerated from people without SN? Where do we draw the line?

Bobo the things you have been posting are outside 'limits that are acceptable to others'. Take your own advice and stop. Probably stay in your house at all times just to be sure.

Or does it only apply to people with disabilities?

Bobo - Just because the SN means that there is an explanation as to why the behaviour occurs, does not mean that the behaviour is OK. I would be contacting the school that the boy attends. Either the behaviour stops or they arrange alternative transport for him to get to school. You and I both know that the behaviour should not be excused because of the boy's SN.

BoboChic - that reads like 'if it wasn't for this disabled person spoiling things everything would be fine in our world'. You have to follow your own judgment on behalf of your DD about what is safe for her, taking all risks into account. There are no guarantees that you will not encounter anti social behaviour on public transport.

I deal with 'unacceptable behaviour' (whatever that is) most days of my life much of it in the form of poor attitudes towards my DS. Mostly I just have to suck it up, that's life.

And no I don't think that it is appropriate to accept the same standards of behaviour from SN people as for everyone else. You draw the line at what is safe.

I think, LivingToTheFull, that you are tying yourself up in knots wanting people to embrace your DS and feeling hurt that they don't. Please, please don't take this as anything other than compassion for your situation - I really feel for you. But I think that the maxim "you can't change other people" applies here. You can't make your family make your DS the centre of attention when they visit and going on hoping they will is just setting yourself up for more hurt.

Bobo, I am sure you mean well but what you seem to be saying is that I should just accept that nobody wants to be near my DS, that the general public don't like him being around and my family are never going to truly embrace him either....and that these attitudes should never change & I should just accept that reality. I don't think much could be more hurtful than that.

All the compassion towards my situation in the world won't make it less hurtful, as the compassion isn't doing me & DS any good is it?

It is normal that you would like a lot of understanding and flexibility from others. Of course it is! But, if it isn't forthcoming, to what extent does it help you to keep on wanting it? Does it help your DS?

Well Bobo we all live in a community and are interdependent with each other, so I don't think that understanding and flexibility from others is too big an ask. My DS will rely on others all his life & I won't be around forever so he won't have much of a life at all unless he has these things. I will have to keep asking for & expecting DS to be accepted because it is essential for his survival & quality of life.

Seems an appropriate time to link to this is my child
Peace and love

Thanks Olivia for the link.

No matter how hard I try I end up where I started. It is impossible not to feel alienated.

I think you are a fantastic mum who has understandably been ground down with having to be all things to your son and your husband. The meltdown tho could be him being a teenager or over stimulation. One day you might well laugh about it. My mum does on the various ones I put her through I'm ashamed to say I was 13 year old by the time I had my last public tantrum. And I'm deaf and adult now with my own child. My mum didn't give up but I'm sure she wanted to! Often. Try and carve out some time for yourself get some support somewhere or you'll crack.

Thanks polos and I hope I live to see the day when I can laugh about this. It may happen but it is a long way off, everything is tough now & i see no time when it will get easier.

DH is home from work & has gone to sleep, he is upset about the news he has just had. I wanted to go out & have an early meal, drink etc as a treat as I think we deserve one…but looks as though that is not going to happen.

I tried to call my GP to get an appointment. Went to the surgery & had the following conversation with the receptionist:

'I would like to see my GP asap please. Today if possible.'

'I'm afraid there are no appointments today. The earliest I can do is next Tuesday.'

'That's too late, I need to see the doctor before that. Can't I get an earlier appointment?'

'If you want to see the doctor earlier it will have to be an emergency appointment. Can you tell me what the emergency is?'

'I can't tell you what the reason is but it is an emergency'.

'Unless you tell me what the reason is I can't arrange the appointment'.

'I don't want to tell you what the reason is, it's a long story & I can't discuss it here at reception. Can't you just arrange the appointment & I will explain it to the GP.'

'I can't arrange the appointment unless you tell us what it is for and confirm it is an emergency'.

Gave up & walked out. Sobbed outside the surgery for 5 mins then went home.

But, LivingToTheFull - what was wrong with what the receptionist at the GP asked you? Why are you sobbing?

There are rules and everyone has to play by them...

OK Bobo, whatever.

Are you serious, Bobo?

The op doesn't want to explain herself in the surgery to the receptionist because on top of all her problems she is worried that the other people in the queue are listening and judging her like you are. And it is none of their business. If it comes to that, it is none of the receptionist's business either.

Normally I just lurk. Felt very strongly about this though. Keep strong Living, I am sorry things are so tough for you.

If she is physically in the surgery and doesn't want to be overheard, she can write a note.

Hi living, sorry u had that experience with receptionist, Shouldn't happen! Hope it doesn't put u off asking for help. Go back and get that next appointment! Or phone?

Ok Bobo you've confirmed you're disablist, ignorant and completely devoid of empathy. Well done. Would you like a shiny star?

What exactly ARE your motives for posting on this thread, part from making someone's life worse? Entirely needlessly.

This thread is in AIBU and, tbh, I think the OP has lost sight of other people and is being a bit unreasonable. I understand that she has a lot of things to deal with but, by getting angry with other people for not making all sorts of exceptions for her, she isn't making anything any better for her or her DS. She needs to find better ways of improving her life rather than focusing on wanting other people to change.