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.

I agree that it is hard for my DS and I want him to have support. To cut a long long story drastically short, there is very much less available for DS than there was a few years ago and such support as we have is in jeopardy, so we are trying to source more privately. I have finally managed to get a job after months of trying so hopefully will be easier to fund this.

I emphatically can cope with everything I have on my plate, but that is what is so awful about it...if I couldn't cope, could break down, if only..... but as it is I can get on and deal with everything. Being strong is both a blessing and a horrible horrible curse. I heartily wish I could fall apart but for DS sake I just can't.

I'm shocked at how unsupportive your family sound. That must be very lonely.

You sound lovely and grounded and dealing with it as best you can.

Yes I do feel very lonely. My DFamily pick days to meet up when they know DS won't be around, they find DS hard to cope with now. My family on the whole find it painful to be around DS, although a few of them do try.

When was your most recent carer's assessment?
Speak to the Children with Disabilities team and his social worker and ask specifically what services exist for teens in your area. There are often befriending services and such that you can transition towards, away from respite, so that your ds gets the chance to learn more about social interaction and hang out pseudo-socially with someone other than his mum (my NT almost 13yo isn't too interested in hanging with me...)

Some areas also have specific youth clubs or activities, even pool time and some sporting activities. I only know the ones available in my local area (we campaigned for many years and eventually set them up). Try SKinUK for ideas - they also have meet ups and camps where you would definitely not be the only family in this situation.

It's another transition piece - just like when he started school. If he is in a specialist setting, they may be able to provide a list of extra-curriculars or know of services that other youth are accessing. MIND are also a good point of contact (in our area MIND also ran pan-disability programs).

As ever with kids with CP, sometimes they are infuriatingly NT!! I am seeing the effects of hormones on dd2 (almost 12 so not too bad yet, but definitely stirring) and it does remind me of when she was little, trying to work out whether 'this' or 'that' was a cp thing, or a toddler thing...

Well done for keeping it together, you are doing a great job. If you have recognised that you are now struggling to keep it together, it's time to also get some counselling for yourself. It's a good time to take stock and give yourself permission to fall apart a bit, and get some help to get through transition planning etc. no weakness in needing some support yourself.

How awful that they do that - I'm sorry. It would be nice if they could put your and your son first sometimes.

Yes madwoman good tip I will pick up 2 copies in future. Although I don't want DS to get the idea that abominable behaviour will get DS what he wants. Yes I want him to get used to socialising with others.

Will follow up re his care as you suggest. He only seems to kick off with us, he obviously knows what he can get away with.

Sally - it grieves me to state it but my DFamily are happier when DS is not ther because then things can be 'normal'.

Livingtothefull I am so sorry your day was crap.

I am not in your position. I do have kids and one is rather non-NT although we do not know for sure but she may be on the AS or have ADHD, she is very dyslexic and is 10. We also have an adopted son who is 4, very bright but sometimes very emotional too.

In the past I was very dedicated to my dd, when she was young, and had very little social life to myself. I joined the NCT but everything revolved around dd. Then one day someone suggested a pub night out, it was near Christmas and they organised a Christmas dinner out. After that I began to make time for my own social life without my dd, and now my dd and ds. We do not do a lot but I have one or two groups of semi-ovelapping friends and we go out to coffee shops, pubs and the occasional spa weekend. We still do things with the kids but we also make time for us. I do think it is so important.

I've also changed how I think about spending money on me. Me and dh have very little spare cash so I got used to cheap shampoo and second hand clothes. A few years ago I just realised that life was too short and I started buying some nicer luxury items and making the most of the things I enjoyed like a nice bubble bath or a new outfit.

I'm also a Christian and involved in a church, I get to do things like help on the outreach, making lists and meeting meeting new people, we have committee meetings and sometimes it is just nice to go out in the evening, sit and drink coffee and eat cake and chat about things in a meeting while dh puts the kids to bed!

I've also taken up a sport, which I enjoy.

All these things help me to feel like me, instead of just feeling like a 'mum'.

In your shoes I think I would suggest to dh that in future you will not take your son out alone for the day, unless the behaviour stabilises. Just an idea.

I would look for support from others who have been in your shoes. In adoption circles we have a kind of adoption 'mate' who we can call on to chat through things about adoption with. There is also ongoing training and at all of these we meet others in our own shoes. Because the friendships and connections are two way, we can give support to each other, it seems to work better than talking to non-adopters who just do not understand some of the issues. I wonder if there is any such support in your area, or if you could get something started? Local special needs schools would be a place to start to make contacts etc. You don't need to hire rooms or anything, you can just go out for coffees together and build up contacts that way.

Lastly, in your shoes I would be approaching any charities or organisations which run any kind of therapy or behavioural work with children like your son, ways to help him express how he feels and enable him to process those emotions.

I really hope I have not said anything offensive, or wrong. I don;t know your situation and I can;t really understand how it feels. But I do care and you are 100% a person in your own right who deserves respect and fun.

You are an extremely important person, actually. You sound flipping amazing. Your family is very bloody lucky to have you!

I don't have anything concrete to offer, but I wish I lived nearby so I could come and take you out for a lovely lunch, or help you with your son, or...just something.

You are fab.

Your family are arses of the highest order.

Your DS is a teenager. Mine are horrid often at times too.

You though are a person. An amazing person .

You are amazing. You most certainly are a person. An amazing one.

I don't think your dh should be telling you, you haven't dealt with it well. It's sounds like you did. Even if you didn't, you did the best you could do in situation.

I am not surprised that you want to rant. I think that you handled it the only way that you could. I think that you need more support and more time to yourself to recharge your batteries. Hopefully getting the job will give you some of this in addition to the extra money.
Unfortunately I am not a lot of help - I just didn't want to ignore your thread. I would say that you are an amazing person to have handled it so well for all these years with an unsupportive family.

Wow thank you so much for all the wonderful support, I so so appreciate it.
And so many suggestions/insights that may be of practical help to me. Just to respond to some of your points:

Yes I do need to carve out time for and prioritise myself. It is hard though because DS is just so disabled he can't be left alone, there is limited respite available and it has been cut back rather than added to recently so we won't get more. Also if I don't do it then DH has to....he runs around like a headless chicken as it is & has long term health concerns.

I think DH was trying to be helpful though it did feel like criticism.

I agree that DS may need professional support/counselling to help him manage his frustrations...we won't get this provided so will have to do it ourselves. The support & therapies DS has are provided through his special school, and DS never kicks off with them or anyone else except DH & me, I suppose he feels safe doing it with us. This tells me he can control his anger if he wants to.

I honestly think my family mean well, they are kind people. But I feel that sometimes they do not see what is staring them in the face. It is as though the issues with DS are just so enormous they can't handle them and would rather pretend they are not there. I really don't blame them, I feel like that sometimes.

It is little things like always being available to meet up on days when they know DS won't be there. But maybe they see it as giving me respite/fun time, and to be fair they are always really generous to me, treat me to lunch etc.

Then before the election some of them said they were going to vote for the current government. I said 'you do realise that a vote for this government is a vote for austerity which will directly affect DS? DS will have as good a life as his country is prepared to give him'. They said that of course they said that nobody wants cutbacks for disabled children, I said that they won't get to pick & choose where the axe falls. Anyway, I accept that it is everyone's right to vote as they choose so I haven't said any more.

DS is very attached to his cousins, they seem very ambivalent towards him. I have always given the benefit of doubt and accepted it may be difficult and awkward for him to handle his disability, but the older they all get the more it looks like plain old indifference (they all around the same age btw).

I was upset when we visited them at Xmas, the DNs did not come down to greet DS or us or wish him a happy Xmas, they stayed upstairs where he could not access and only came down when dinner was on the table. And recently I organised a family get together for an anniversary and booked a table at a restaurant. DS was really looking forward to seeing his cousins but when DFamily turned up DNs were not there. One of them (the oldest) apparently decided at the last minute that he didn't want to come after all and the others then followed suit. So no real reason.

DH family are reasonably supportive but live abroad.

This is turning into a rant. If I sound bitter it is because I am and I am itnot proud of it. Maybe nobody wants to spend time with us because we are not good company. I do feel sorry for those around me, I feel I need to be treated with kid gloves & nothing less will do

....difficult and awkward for THEM to handle his disability

Yes maybe I have to face up to the fact that I can't handle DS on my own now he is growing up. Just the physical aspect of pushing him in the wheelchair is getting hard now he is bigger. It does make me sad though as this was supposed to be our special time together. I feel I could have handled yesterday better, I just wound him up some more.

You are a person ,, a good one by sounds of it.

I am so lucky (I know this) that the most my children seem to have had was dyslexia (though awaiting ADHD diagnosis on one) , and I don#t want to sound patronising (not my intent) but I truly admire women (and men) like you who have so much to cope with .. I think God chooses strong Mums for these children .. Good Luck OP , but you sound like you are doing all you can already for your son ..

I think you sound amazing actually.

I know some people who would just give UP!

Please say if you think I am being over sensitive & unfair, it is hard to get perspective on this.

How is his behaviour at school OP? Are they working with you to help with this issue? If he is at special school, they are usually very good at supporting parents with this kind of problem.

Thank you so much, I think I am just being a normal parent in that it is not an option for me to give up on our DC.

I can totally identify with how you feel, OP.

There are days when my DS (who is autistic and has severe behavioural issues) behaves so appallingly towards me, despite my best efforts to love and support him, that I feel broken by it. And very few people can really understand unless they have experienced it. I am currently sporting doe beautiful purple bruises from where he attacked me during a meltdown last week .

Being a parent and carer is very hard work and can be extremely isolating. I think thats the thing you need to address here. Is there any respite at all for you? Any little part of your week where you get to just be YOU, or get some support for yourself? You matter, too. You have needs. You can't just give, give, give with nothing back from other parts of your life.

Sending you much love, anyway. You ARE a person - a good hearted person dealing with difficult circumstances the best you can. x

I know what you mean but I think some people would think 'oh, my DS is disabled and that's why he lashes out' - you see that but are actually trying to raise him and to instil a sense of right and wrong in him.

You're trying to make his days good. You're seeing things from his point of view and understanding that but not making excuses for him either.

You're amazing :)

I think you are doing an incredible job and it's a terribly hard situation. Your son is bound to be furious at times, I have seen some absolutely foul teenage behaviour (from teens without your sons difficulties) and I can say they have turned into some very lovely adults! I would find your dn behaviour very hurtful on your son's behalf (actually I would be furious), but again teenagers can behave very badly, it sounds like their parents should talk to then about the importance of including your son. What seems unmanageable and awful today may look very different tomorrow. You should be entitled to all the help in the world, it's so unfair you are seeing cutbacks. Which area of the country are you in? I wish I could do something to help

His behaviour is OK at school Shakirasma, this is the problem as they have never witnessed it so it is hard for them to advise. He only behaves like this when out with DH or me, it is as though he feels safe doing it with us. This makes it seem a conscious choice on his part and something he can control, I don't want him getting the idea this behaviour is acceptable.