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.

Glad your DH is ok, and that he brought flowers for you!

The things your family said were very hurtful, and yes, I think that lots of people can't imagine the disruption of caring for a child with a disability - and also don't want to take any responsibility for disability in the extended family. It's not uncommon for members of the extended family to feel that somehow you CHOSE to have a disabled child, and that it's not fair on them to be expected to deal with it in any way (e.g. by offering respite, or just including the disabled child in family events).

But your life ISN'T irretrievably ruined - it's harder than many people's lives, and there are challenges that many people will never face, but it's YOUR life with YOUR son. I'm sure he loves you very much (even though, like most 14 year-old, he sometimes says terrible things). Knowing that you're loved - by your son and by your DH - can sometimes help a bit. And also having control over some things - like planning for the future - can help a bit.

And I think you're right about work - acting as-if can be very helpful in getting you through.

Are you involved in any parenting groups for people with children who have CP? They can be very useful for sharing strategies and coping mechanisms, or even just having a moan about how difficult things are. It's so important to feel you're not alone, especially if your family is less than forthcoming. Finding the time is hard, but it can help a lot (my son has ASD rather than CP, and I've found it very helpful to talk to other parents). Or you can talk to people in the SN forums on Mumsnet.

You're doing a really great job in incredibly difficult circumstances, and you deserve a lot of praise for your determination and for the love you show!

I don't have any answers or advice. And I'm not glazing over, in typing this through tears for you. You're amazing. That's all, really.

Thanks Adjustable, I feel disloyal even talking this way, articulating these thoughts…. I know it is anonymous but all the same….I truly believe they mean well but I am trying to understand what is wrong/missing.

This all happened a long time ago, I should be over it by now but I find myself revisiting it. What I find remarkable is that nobody ever said to me that these comments were wrong or mistaken…..it was as though I had to be persuaded (albeit gently and lovingly) to their way of thinking. My own unendorsed opinion is never quite good enough.

Yes we meet other parents of disabled DC, we are active in a local disabled children's charity. I meet other families going through really tough times & we try to support each other.

Thank you for your praise of me. I get very little of this in rl…

Thank you Francoitalian, I am so touched by your post.

I think that the fact I appoint myself 'Mrs Empathy' in dealing with disagreements or disputes…..find myself over and over in the role of peacemaker. Because I so often understand exactly where people are coming from, put myself in their shoes. I am not saying that I am more sensitive/aware than other people, just that it has become a habit to think this way.

There I was trying to act as a go between to patch things up between my DH & dfamily, WHY did I feel I had to take that on when I had a desperately ill DS, was ill & recovering myself? You would think people would have wanted to tiptoe around me…..but that is not what I remember at all.

I think excessive empathy has a lot to do with the problems I have with assertiveness…I really do understand the other person's position, mostly it is a reasonable position that makes sense to them. It is almost as though I am standing in their shoes myself. So no sooner do they explain their position to me than I cave…..empathy can be such a curse

Well it was confirmed recently that DH is looking at redundancy. Without going into detail the redundancy situation is directly related to govt cutbacks. DS & I have already lost benefits because of these.

I am feeling a bit crabby & bitter towards anyone who voted for this govt....that includes some family members, I am trying not to hold it against them. But did they ever think about what it might mean for people like us when they voted? I know that there are others far far worse off than us who are really suffering now.

Dfamily have invited me out for the day in a couple of weeks' time.....or rather they arranged the day & then called me up to ask whether I wanted to come along (it feels like a summons rather than an invitation....they do this a lot....but as I say I am feeling bitter at the moment so maybe IABU). They said it is an 'adults only' occasion, DH not invited either....I would genuinely love to see them but it is no small thing to leave DS and expect DH to look after him. He would willingly do it - but it is still a fairly big ask.

As I say, I might be unfair towards my Dfamily, to give them their dues they have been extremely generous in the past. I never ask them for anything though and don't think they realise just what is involved with DS care. How could they though?

Livingtothefull - I am extremely sorry for your situation, which is incredibly difficult.

However, had I been the elderly lady in the bank witnessing your DS's bad behaviour, I would have expected you to reprimand him in front of me and I would have expected copious apologies from you. How otherwise will your DS learn to behave better in public?

Oh sorry - just saw that this is an old thread. Please ignore previous post.

BoboChic - I can assure you that DS was reprimanded by me though there is a limit to what I can do with a teenage boy having a meltdown and hitting/kicking me while I am trying to restrain him from doing it to anyone else.

Fair enough. 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.

Well as far as I am concerned he has as much right to be out and about as anyone....it's a shame if people are upset by him but I can't let that be our problem. I am not prepared to hide him away.

Bobo - what utter drivel. Thanks.

Who are these 'others' who determine what is acceptable and what is not? We regularly have to put up with attitudes towards DS that we find unacceptable but would never suggest that the people who display them should not be out & about/should stay home. We all have a right to be out and about including my DS.

BoboChic what utter bullshit, he is a teenage boy with health issues struggling to deal with the world around him, what is your excuse for being so socially inacceptable

People with opinions like yours is part of what makes the world so difficult for some people. They should not have to hide away, you should be less judgemental.

I won't be hiding him away any time soon so if anyone finds him hard to cope with then tough.

We will need strategies for dealing with meltdowns when they happen (though most of the time he is fine) but they will NOT involve keeping him permanently at home. I am proud of him & want to show him off, it is other people's problem if they can't see the good in him.

Thankfully Bobocic does not represent the majority!

Your DS sounds like a frustrated teen who is struggling to deal with his own feelings let alone how they impact others, that in my experience is something all teens go thru, he then has his additional health challenges to contend with, no wonder he lashes out.

Yes, he needs coping mechanisms and really you guys are the ones best placed to explore what would work for you and your DS. My dear friend's sister has Cerebal Palsy and used to get extremely angry and frustrated. One thing we did for her was we all made her a wooden board (it was our woodwork project at school which the teacher agreed to do to support our friend) and it had lots of letters on it, she could then use this to communicate how she felt with us (so if she was angry for example instead of screaming F Off she would spell it on the board), she also had a small cushion she would punch in frustration. This really worked with her (I am going back many years) and it meant she could vent her anger and frustration without upsetting passers by etc. Would something like that maybe help? She also got involved with the local Theatre group and again this helped massively.

Your son needs an outlet for his feelings, it's just finding one that works.

On another note, not everyone will be judging you, if I had seen your son like that I would have looked at you, tried to catch your eye and given you a "hang on in there" smile.

BoboChic, from reading your posts I don't think that you intended to be offensive, I don't think you are coming from a bad place - but please understand how this comes across. I do the very best I can to teach DS what is acceptable behaviour, given his learning difficulty sometimes he takes it on board and sometimes not. He has a mental age of around 4. So effectively a toddler in a teen's body which can present major challenges. When he has a bad day it is REALLY bad...but it is not every day.

I just can't and am not prepared to hide him away because his behaviour is deemed socially unacceptable by some. He does occasionally cross the line into what I consider unacceptable behaviour, and I deal with this the best I can and I think my best is OK. What I ask from others is that they deal with their own negative feelings about my DS when these incidents happen, and not expect me to make their feelings our problem. I ask that they accept that their few minutes' annoyance are a price worth paying for my DS right to have a place in the world.

Livingtothefull - I don't want to offend you and I think that the issue is incredibly complex. FWIW a similar situation, but from the "other side", is preoccupying me right now - there is a young boy with Down's Syndrome who regularly takes the bus we take. My DD is 10 and has just started taking the bus on her own and this has, unfortunately, coincided with the recurrence of some unacceptable behaviour by the boy (who is well known to all the regular passenger and drivers). I feel unable to let my DD take the bus at present. It's not always very straightforward to be understanding.

Hello Living - I've just had a read through the thread and wanted to say that you're doing so well for your DS and he is lucky to have you. The fact that you worry that you're not doing your best for him is a sure sign that you indeed are giving him the very best that he needs.

I'm really upset for you about your family. Their attitude is very poor. I would go to the gathering that they have organised for a set amount of time, and tell them how you've been feeling and how their attitude to DS has made you feel.

Their love for you should be enough to allow them to love your son no matter what his disability.

My family were awful about my DS (ADHD, possible ASD) as he's "naughty" all of the time but having a diagnosis did help with that - oh, and I had a huge rant - he shouldn't need a diagnosis to receive compassion from my family.

Your DS is not going to wake up one morning and be "normal" so your family need to change their attitude and suck it up.

You know what interests your DS has, what his personality is like - speak to them about that. They need to start seeing your son and not just his disability. Though their shortsightedness is their problem and their fault, not yours and not your DS's.

I must say that I'd rather not spend Christmas with your family either - seeing my boy being bullied by his nieces is not my idea of a good way to spend what should be such a special day.

Lots of for you - you're doing so well.

BoboChic, thanks for your post. I appreciate that you are concerned about your DD safety & wellbeing, although it is not clear from your post what the 'unacceptable' behaviour is - whether the boy you refer to is accompanied/supervised, whether his behaviour is directly intimidating or just unpleasant for other passengers, whether you feel there is a real risk to your DD. You don't need to reply to this if you don't want to, however a lot of factors like these would determine appropriate handling in this case.

Let me be quite clear that I don't believe anyone should be put at risk, but in our case I don't see why anyone could be threatened by my DS in his wheelchair, who is at all times accompanied. Having said that I think it is normal for children & young people to feel extra sensitive towards & threatened by people & things that might not bother us...in which case they should get whatever support & protection they need. But the answer is almost never to remove the 'offending' person...children need to learn & be given support in dealing with the diversity of people in the community.

Livingtothefull - this boy has a habit of masturbating quite visibly/audibly in the bus. I have managed to avoid DD seeing or hearing anything up until now by being with her.

Bobo you're wrong here. End of.

Thanks again for your posts. LisaD1 - those are really good strategies which might help D1 deal with his anger, I really like the idea of a 'punching' cushion! We try to support him and tell him that there is nothing wrong with being angry, that we all feel angry sometimes etc but he should tell us that he is feeling angry rather than lash out, so we can help.

His cousins never actively him littleredhen, just they don't really pay attention to or try to interact with him & I don't think it is something we can force. I just don't know if IABU or expecting to much of my family, in wanting DS to be put at the very heart of things. Eg they could call me & say 'we want to arrange a family get together, what/when/where should we arrange it to make it easy for you & DS to be there?'

Do you really think their attitude is poor? I think in their way they are trying to be supportive & they would say that they were. But as DS gets older and grows up it is as though a big chasm of understanding is opening up between us. I could tell them when I see them how it makes me feel but our get togethers are all about us being 'a happy family having a good time together'; if I were to explain what I was unhappy about it would put a huge spanner in the works. Not impossible to do but it would be a huge step for me.