I don't like not being normal. Here is some emotional diarrhea.

[Livingtothefull]

I feel I am not normal because I don't live a normal life. My DS has severe physical and learning disabilities, daily I am reminded that we live in an environment and culture that is really not designed for him.

Example. My DS can't get himself around safely, when I am out with him I push him in a wheelchair, because of his learning difficulties he can't get himself around. It is physically strenuous to push him especially uphil when the pavement is uneven. Feel the shock my DS feels when we hit a rut in the pavement which grinds to a halt - it hurts my hands too.

It is much easier to push DS on the road as it is smoother and designed for wheels - but we can't use that safely either, we get honked at & have to move back onto the uneven pavement.

Another example. I am trying to open a bank account for DS, as he has just turned 18 I think as an adult he should have access to his own money (which we have been saving for him for years) but as a person with severe learning difficulties he needs protection.

How to reconcile this? I want a bespoke bank account which is set up with his needs in mind. But I have approached several banks and it seems that accommodating him isn't so straightforward. Has this situation never occurred before, is it really so outlandish?

Example 3. DS has never been able to use the train station in his home town where he has lived all his life, because there were no lifts to the platforms. The station has now been rebuilt and as part of that, lifts are being installed. The station has been pronounced 'open' but the lifts aren't working yet so to us it isn't open. I complained to the effect that 'if a place isn't open for the disabled, it is effectively isn't open so you have no business claiming that it is'. My complaint was ignored of course.

Where the emotional diarrhoea kicks in: here. I am so so tired of being ignored. I feel it is hard for anyone to understand where I am coming from, how hard this all is. I feel really insignificant; I don't know what normal is but I am not it, and I feel emotional upset at knowing my face doesn't fit. Because my life is not normal and the pressures I face are just overwhelming, what I have to deal with just takes my breath away. Also, I feel stifled as if nobody is interested in what I have to say.

I am tired of suffering and worrying about my DS future. My DS will have as good a life as his country is willing to give him. I have to do what I need to do for my DS and I need have some critical distance from my emotional upsets. I wish I could know it would be OK.

Sorry to hear that things haven't been good for you @Livingtothefull I know it probably won't help, but I believe in you. You are far, far more capable than you think you are. You have coped, and continue to cope wjth many things that most of us never have to consider. Of course you are not perfect - who is - but try to think about some of the things you have coped with and overcome, rather than focusing on things that haven't gone so well. I am sure there are lots more of the former, but it sounds like you are your own worst critic and are judging yourself pretty harshly. I bet those around you have a higher opinion of you than you do of yourself.
I don't know if this will help you, but I find it good when I feel overwhelmed by things sometimes. I find it easy to get into a state where it feels like I have so much on my plate that I don't know where to start and get caught up in a spiral of negative thoughts and end up doing nothing. What I do then is write down in a notebook just 2 or 3 practical things that I can do, and focus on achieving them. So, in your case you might put something like, make sure DH books a doctor's appointment, look at 3 bank or building society websites that you haven't already tried for an account for DS and do something for yourself to relax. I was going to suggest going for a walk, but maybe not a good idea this weekend. But anything where you focus on your own well being, even a soak in the bath with some nice bubbles. Make sure your list consists of small, achievable tasks rather than anything where you are setting yourself up to fail. What's the saying....you have to eat an elephant one bite at a time.
I find writing a do-able list and taking a couple of bites of the elephant really helps me get out of the spiral of anxiety that it is so easy to fall into when you have big concerns that overwhelm. Also you can then look back and remind yourself on all the positive things you have achieved.
As I say, I understand it might not work for you, but I find my notebook full of little lists very good at calming me down, so maybe give it a try. Just writing stuff down helps get it out of my head - mine lives by my bed for when I can't sleep.
Hope that makes sense, its a bit garbled I know ( just had some strong painkillers sorry ). Keep takingthings one day at a time and don't forget to make some time for yourself.

Thank you so much MAFIL for your post. That is really good advice....it is strange, I rely at work on lists of things to do, to ensure that I keep on top of responsibilities and things don't get missed, but I hadn't thought of carrying it over into everyday life.

My life isn't all gloom and doom by any means; though anyone who has read this may get that impression it isn't so. Anxiety is not depression. I just adore DS and having him has made life more complex and difficult...but also richer in the subtlest ways. DH said today that he 'loved and esteemed me'. I have had bad experiences at work in the past but touch wood, my job is going well and I have had good feedback.

Nothing is guaranteed though and I fear what the future holds for my DS. Although I am doing OK, I can't be proud of myself because I can never be a good enough parent to DS. I can't give him a secure future, I can't forgive myself for that.

Here I sit; as I have sat often, trying to prolong today in order to put off tomorrow.

I have done this for years because I am so scared of what the future will bring to my DS. I am pretty much past caring what happens to me any more as I can take care of myself, but I wish I just knew that my DS would be all right and surrounded by people to love and care for him, when I can't care for him any more.

It is a terrible thing for a parent, to fear that their DC won't have a future....my DC deserves a future like anyone else but whether he has a future, is dependent on whether my country decides to be a civilised country. I wait with baited breath on that. A civilised country cares for its most vulnerable.

My dear sweet boy was planning to go on a skating trip today; he does this on a Saturday, it is an organised trip where he is pushed around the park in his wheelchair by a volunteer on roller skates. But his wheelchair wasn't working so he couldn't go because it wasn't safe for him. My poor sweet boy, losing out for the umpteenth time, yet again. We had to explain that to him; he took it so well, he is so ridiculously happy.

I don't count only more, only my DS counts. I am just a suffering thing that is anxious for my DS to have a future.

Only two things that wish for now:

I want to be heard;

More importantly, I want my wonderful DS to be valued and be cared for to the end of his days.

Just wanted to send you a virtual hug.

I'm sorry about his skate park trip today and tgat his wheelchair can be fixed soon.

Also bumping in case anyone else can help.

For the bank account, look up Deputyship under Court of Protection

Thank you scattercushion17 for your post, it means a lot. We are getting his wheelchair fixed through through his school so fingers crossed it will be sorted out shortly, we just cant allow him to go skating until then because one of the wheels is wobbly & it isn't safe for him.

Thank you Gingernaut, I am following up on that.

Bless you, OP. I grew up with my severely learning disabled sister. It was so hard and tiring for my parents. She lives a lovely shared house now and is very well cared for. I'm sure your DC will be too. Try to get as much support as you can xxx

Sorry to hear all you're going through

I don't want to add anything else to your list of stuff to sort out, but you said
Another example. I am trying to open a bank account for DS, as he has just turned 18 I think as an adult he should have access to his own money (which we have been saving for him for years)

Please get financial advice before you do this, there is a way of "protecting" or ring-fencing a disabled child's money.
Otherwise, if you open a bank account in his name and deposit more than the threshold for any means-tested benefits he can claim, those benefits may be affected. See the link below and please obtain advice before you bank anything in his own name.

More importantly, I want my wonderful DS to be valued and be cared for to the end of his days
Mencap have a scheme called a Discretionary Trust which you may wish to investigate and see if it's suitable for your son.
www.mencaptrust.org.uk/advice-and-support/services-you-can-count/mencap-trust-company

Otherwise you can consult with a solicitor under the STEP scheme to create your own Discretionary Trust, the ones I approached said they would charge more for a private arrangement than they would under the Mencap scheme.
www.step.org/for-the-public

Hi OP
I may be entirely incorrect, but I sense a great deal of grief in your tone. Do you think perhaps you are still grieving for a life that ‘could have’ been (for your ds and you) if your ds weren’t disabled?

Do you think you would benefit from speaking to a counsellor, to be able to offload and learn some more strategies to deal with your feelings?

Do you feel like you are still holding on to this idea of a normal life that you and your son will never have the chance to experience?

Your situation sounds really difficult. Sending you my thoughts and a virtual hug

Dear Cocomobile, I know I am grieving, I have learned though that 'what could have been' mustn't exist. For my own sanity it can't, it really just can't. To keep things on an even and sane footing, I have to narrow my focus to dealing with 'what is'.

What is, is wonderful in many respects but I feel that it demands all of me. Take today for example. I came home from my demanding full time job as my DH came home from his. We planned to celebrate Valentines Day and have DS at the centre of these plans. We cooked a meal for us and DS; but DS found it too much to handle and, rather than tell us that he couldn't eat it all, chose to spit it out so it went everywhere; on the floor, under the furniture etc.

So, instead of the relaxing evening we had envisaged, DH had to clear up the mess while I got DS ready for bed (not an easy process). At the end of this I felt cheated of the Valentines evening I had anticipated, of gentle celebration. It was most people's idea of a travesty of a Valentine's day.

I wanted someone to be to blame for how I felt; neither DS nor DH can be held directly responsible, but I wanted someone to be to blame so I could sulk. Sulk I did regardless; until DH said 'You will know how stressed I am when I'm dead. How will you cope then?'

The 'bad human being' factor crops up in the most incongruous places. Here is one of them; simultaneously with being heartsick and afraid for DH wellbeing, I actually feel irritated, that DH health concerns are a big inconvenience. I don't want to deal with all of this alone, I don't know if I can.

Here is a rant. I am stoic but still more upset than I know:

DS got on the bus with his carer, when he got on there was a woman in the wheelchair space who refused to move for his wheelchair. The driver insisted she move, refused to move the bus until she moved, said he would call the police if she didn't move but she wouldn't. The other passengers on the bus shouted at her and told her to move so they could get on with her journey but she still wouldn't. In the end the passengers got off the bus to get another one, and the carer realised it wasn't going to end well so had to get off with DS wheelchair.

I am upset that we have no redress. To me this is a hate crime; denying a disabled person a place on public transport that they are legally entitled to. The woman should have faced real consequences, be prosecuted and pay a fine.

If any other person with a protected characteristic were denied their right to access a public service there would be hell to pay. But it seems that the disabled are fair game.

Just one post on here, then I think I need to stop. But I don't know what more to say. I am so scared that I am unworthy of DS. I have to keep fighting and carrying on for DS; however gruellingly hard it is, the gates of despair are closed and sealed shut for me.

I'm nearly done. If there is no more to say then I am gone as well as done.

I'm listening.

I was a family carer for 20 years, 24 hours a day (waking night, fully hoisted, no independent movement.) Now even though it's mostly over, I will always know these things about the world, about other people and society and what happens to you, really, when things go wrong. I know what you mean about not being normal. And the struggle. Oh the struggle. It's so so hard my darling and I hear you and see you.

I won't pretend I can help you because I always found that so galling myself. All I can say is I believe you - it's true! It's all true! But we must go on anyway. I'm sorry. Good luck. x

But you don't know what it is like to have your heart - if not broken exactly - at least effectively split in half. That is plenty painful enough.

To have that relentless fear for the future is torture - what will my DS do when we are no longer hear or able to care for him? And on the other hand; my boy is so wonderful, so loveable and I have such pride in him. How I want that to be enough to secure his future. My DS (like all of us) needs the right environment in order to thrive.

Hello OP, we're so sorry to hear you are feeling this way - it sounds like things are really difficult.

We hope you don't mind, but when these threads are flagged up to us we usually add a link to our Mental Health resources. You can also go to the Samaritans website, or email them on [email protected]. Support from other Mumsnetters is great and we really hope you will be able to take some comfort from your fellow posters, but as other MNers will tell you, it's really a good idea to seek RL help and support as well.

We'll move this to Mental Health now, which we feel is a more appropriate topic.

Wishing you all the best OP and hope you can access the support you need.

Thank you dear hokolo. I will keep going because despair is (and has to remain, for sanity's sake....whatever sanity is) a foreign terrain. Nowhere to go except forward and no direction to go except up. Or sort of uppish.