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.

Bollocks.

Bobo you don't realise what is at stake here, you are just going too far. There is no empathy in your posts and that is a shame.

Bobochick Your posts on this thread are quite exceptionally horrid. You come across like you don't want anyone who is disabled spoiling your perfect little world. Everyone on this thread has been supportive towards a mother doing her very best in an extremely difficult situation. Except you.

Living I am so sorry you have had to read these posts. FWIW I think your family are behaving extremely badly towards you and your son and for his cousins to ignore him and go upstairs is unacceptable.

Enough with the disablist crap now BoboChic. Seriously. Enough now.

On the contrary, my posts are full of empathy because they are suggesting constructive ways through your issues.

I'm not sure at what point your DS' behaviour crosses the invisible line where it becomes socially inacceptable for him to be out and about.

Boho, is ^ this an example of you being full of empathy and offering constructive ways through OP's *issues?
*

Bobochick You really think it is constructive to suggest the OP considers keeping her son in the house in case he upsets other people. Jesus wept.

The OP comes across as thoughtful, intelligent and reflective. Do you really think if it was so straightforward to improve her situation she wouldn't have figured it out herself. You do realise that lots of disabled children and their parents lead increasingly difficult lives in this era of cutbacks. Or matbe that is news to you. And the reason why she is thinking about other people's behaviour is because one of the issues is her family. That is what the thread is about.

Yes, of course I realise. But she isn't going to change her family by getting angrier and angrier with them. She needs to accept she cannot change their attitude.

So what should she do Bobo?

Bobo I am going to believe you mean well….but you have to appreciate that you really don't understand what is at stake here. I am not trying to put you down by saying this, I read a lot of other posts on here about really sensitive situations which I have no first hand knowledge or expertise in, and I often refrain from posting because I am aware that I am out of my depth and may make things worse. I don't know why you don't feel the same restraint on this thread and why you are so careless about my feelings, why you are not listening to other posters here.

She needs to stop banging her head against a brick wall about people failing to adapt to what she would like. She'll have far less of a headache and will be able to think more constructively about real possibilities.

I give up now. Goodnight all.

Bobo your an insensitive prat!

Real possibilities?
Constructively?

You've no idea!!

Bobo you need to stop. Shut down your computer and go and do something else.

Living, you have mail.

Hang in there. Not everyone is a dickhead.

Oh goodness just read the last few posts. Op my heart goes out to you as life with a child who has difficulties whether mental and/or physical can sometimes be soul destroying. I can sympathise as I'm dealing with a not entirely different situation. Have you thought about behavioural therapy? A family member is a therapist and they can do marvellous life changing work. Look up behaviour therapists in your area maybe, you're doing a great job.

Bobo, apart from anything else you seem to have no idea what you're talking about with regard to the doctor's receptionist. The duty of patient confidentiality is such that the receptionist has no right to demand to be told the reason why she wants the appointment, let alone in a public venue. No receptionist is qualified to decide whether a medical issue is or is not urgent. OP, I suggest you raise this with the Practice Manager.

I'm really sorry to hear about the possible redundancy. Have you checked whether you and your son are getting all the disability, mobility and carers' benefits that you're entitled to?

Thank you all who have offered support on here. I have read all your posts and considered everything you have suggested, and will look for all available support. I WILL be OK, whatever impression I may have given I am not despairing & if only for DS sake I will find a way through.

I am not sure if DFamily are able to change their way of doing things to address DS needs but it is a major step for me to challenge it and there is the risk it won't end well. I don't think IABU to expect DS needs to be prioritised.

You are absolutely not BU. You are just asking for your ds to be treated with respect and not marginalised within his own family.

My only suggestion would be to try to challenge your family in a way that focuses on a positive outcome eg make some suggestions for family gatherings that would suit your ds, offer dates etc.

Did you have any luck with the GP?

No news as yet from GP….I will chase.

That is good advice Robertaquimby, I think I have to spell out to them what DS needs are and how family events can be organised to accommodate him. At the moment family members arrange events for all of us & then invite us along…...I am the last to hear about them.

I need to find a way to say 'I love you and enjoy spending time with you but the way we do things at the moment is really difficult for me & my boy. I feel that DS disability is the 'elephant in the room' that nobody speaks of; but I am finding it hard to cope with and I need your help. Please work with me to help me make DS a part of the family. And to be a part of it the reality is that he has to be at the very centre; the first and last consideration. It all has to work around his needs now'.

God it sounds so much that IABU when I write this; that DS can't be part of the family unless he is at the very heart of it. He can't be 'just another family member'.

Little update…..I had a work review which is all positive & my boss said I am doing fine. However one thing she remarked on is that she thinks, and has had feedback that corroborates, that I am not direct enough in the way I communicate with others; the way she put it is 'when you are communicating information it is sometimes not clear what you are getting at; you talk round a subject rather than being upfront. It is as though you are scared of upsetting people by giving difficult information. Perhaps you were brought up to be overly concerned about hurting people's feelings'.

That is quite insightful. I don't know why but I find myself so concerned about everyone else's feelings, about not letting others down. Empathy is my enemy. It is like a compulsion. I need to be prioritising DS and then DH and me.

Yet I am getting stressed out again because Xmas is coming up and I know what the expectations are - that we spend the day with my family. I know that dfamily will be seriously hurt if I don't go. I know that DH is unenthusiastic about going, he doesn't feel they prioritise DS enough, and I will be fretting about keeping everyone happy. I feel really torn because I feel no sense that they really want to see DS…surely I would recognise it if they really cared about him, wanted to see him not just me? But I just don't feel that & it makes me sad.

I have read the thread livingtothefull I am sorry that I have no practical advice but can see that the fab mumsnetters have helped in that way.

I just wanted to say (through tears) that I think you are amazing. I am angry on your behalf that your support has been cut. Keep doing what you are doing. Ignore the troll on here and focus on the positive comments as I can see that so many people agree that you are a wonderful person who is doing the upmost for her precious son and husband. X

Really interesting comments from your manager. I think many women of our generation (well l am in my forties, guessing you might be too) have been brought up to please others and find it hard to be assertive and direct in difficult situations.

It is absolutely reasonable for your ds' needs to be a priority in the planning of the family Christmas. You need to keep telling yourself this because it is true. Many families plan Christmas with a particular individual in mind to make sure they can join in eg an elderly family member.

I think you need to make a list of what needs to happen to ensure your ds has a good Christmas. Is it about an accessible location? Asking the cousins to spend some time with him? Particular activities that he would enjoy? List as many as you can then pick the three most important. I would suggest you then email your family, explaining, as you have done so well on this thread, your perspective on the situation and the three or four things you need to ensure your ds has a good Christmas.

Good luck.

Thank you both.

I am trying not to feel bitter Thingsthatmakeugo about services being cut for DS. It is ironic, this government claims to support working people. Isn't that what DH are? Yet things are just being taken away from DS & us, these days we have a lot less than just a few years ago.

Yet we are doing OK….we both have jobs and a decent income, no big money worries. We personally know people far far worse off than us.

I want to try to put into words Roberta what things we need from Dfamily to support us. Ultimately I just want them to care for DS, at the moment I am not convinced they do. That's not something I can prescribe/insist upon, it is either there or it is not. It would be lovely to get messages beforehand like 'is there anything you need us to arrange for you to make things easier with DS?' It would be lovely if, on turning up, DS was scooped up & entertained by his relatives, so glad they would be to see him.

So this is my difficulty in asking them to support us, it would boil down to me asking them 'Love my DS'. As we all know, love is not something to be demanded.

We took DS out again and arranged an Xmas pant for him in the new year. He is really excited…..but when DS is excited he gets hysterical, & that is what he has been. Rocking to & fro, and shrieking at the top of his voice. DH was tired & had a nap, so I dealt with it.

This evening DS (who was incontinent) did a massive poo & soiled all his clothes, it took ages to clear up. I got angry & frustrated and had a go at DH as I had had to do most of the work today - not quite fair, DH does his fair share usually just not today I love DS but not all the work that goes with him.

I have to go to work tomorrow and I am really nervous, I have so little self belief. I feel like an imposter and at the moment I feel that it is all so thankless. I feel that I am everyone's convenient punch bag. I wish that fear would just stop.