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.

You’re not being unreasonable at all. Is there a Carers group locally to you? Perhaps some peer support with people who truly get it would help?

Definitely not being unreasonable. Never feel you’re not normal or your face doesn’t fit....keep fighting. You really sound like you could do with some real life support, someone else that’s going through the same. I hope you never feel like this again, I’m sorry that you do xx

Gosh YANBU in the slightest. Unless you are directly affected then I don’t think many people understand just how many obstacles there are for people with disabilities and how much harder the ‘simple’ things can be. And you’re utterly right, it’s really not good enough that so many services lack basic accessibility.

I’m afraid I don’t have any practical advice unfortunately but are there are support groups or similar which may be able to help, or at least understand better?

Bank account: my severely disabled DNiece, now adult and living in (wonderful) supported accommodation, has a prepay bank card. Her parents manage her finances and put money on the card. Her carers help her use it as required.

Scope provides some pretty nice supported accommodation and it is possible to arrange a package that includes transport home at weekends. As your DS is now adult you may wish to look at options.

Happy New Year.

As a parent of a disabled son, I am sending you a virtual hug. I can tell you love your son so much. Keep going:)

Thank you all so very much. I will keep going and fighting, and I know I am not really the only one dealing with this. I know that giving up is not an option and so I will keep going albeit kicking if not screaming (or at least not screaming very much).

I have sought out support groups and I know there are not alone. There are many types and degrees of special needs, I am aware that there are many who have it tougher than us.

Thank you makingmammaries for sharing the support in place for your niece. The prepaid bank card is something I will look into. I want DS to have the freedom to buy himself little treats whenever he wants to, without risking him frittering the money away on things he doesn't really want, running up an overdraft or (worse) any unscrupulous person getting hold of his cash.

I am glad your dniece supported accommodation is wonderful. I hope for that for my DS, he is at a college for special needs adults at the moment and doing well but we need to plan for him when that ends.

I want to find the right residential arrangement for him, hopefully somewhere with other young adults where he can have lots of good times and laughs and be cared for and loved. I hope the right place is there for him; of course I would have him at home in a heartbeat but I don't think that long term that would the best option FOR HIM.

You are not unreasonable at all. My situation is not the same - both my parents are disabled - but I do understand that this country is not built for disabled people or wheelchairs.

We are constantly told to accept all manner of minority groups and make accommodations for them, yet for those who are disadvantaged through physical limitations rather than lifestyle choice, they are still up against constant obstacles in daily life.

I have to make all phone calls and arrangements for both parents and every time without fail I am told I can’t do this without them speaking to the call handler first... well that’s a nice idea except neither of them can talk, hence why I am making the call.

Pavements are diabolical. Disabled parking is blatantly abused everywhere (even at the hospital) people barge in front, push past, don’t hold doors open, look at you blankly if you ask for help.

The world is not built for people who are not able bodied or able minded. That is for sure. I don’t know how to change this or have any helpful suggestions other than to tell you you aren’t alone in facing this struggle x

Thank you Sadie. Yes I find it frustrating that the disabled appear to be the only minority group that it seems to be OK to routinely discriminate against. I don't know why...maybe there is a perception that they get showered with benefits already and are enough of a burden on the taxpayer, so the disabled ABU to expect anything else by way of accommodation for them.

I completely get how frustrating it is, whenever I ask for any essential support for my DS, to be advised they can't disclose anything about him as he is an adult and insisting on speaking to him or having him visit in person (the latter may be logistically not possible eg if the building he would need to visit is inaccessible). DS has a mental age of about 4 so good luck with discussing the matter with him.

I get that especially in the light of GDPR, there is a need for safeguards re confidentiality - but are these situations so outlandish that there couldn't be a strategy in place for dealing with them when implementing GDPR last year?

There is a separate AIBU going on at the moment about the disabled on public transport...in brief, the carer of a disabled person kicked off when denied access to a bus. I haven't posted on that thread because tbh I don't have the heart, the obtuseness of some posters on that thread is so dispiriting. I have experienced what public transport what be like for the disabled and trust me, much of it isn't good due to the attitudes of too many members of the public. Although I don't condone being abusive I will say that my being nice and reasonable was ignored, and being respectfully assertive was generally ignored too....so I can quite see how somebody could lose it.

I really admire those with first hand experience of this (ie their own or family members' disability) who have posted on that thread to try to educate those who lack this but can't stop pontificating about what we should do.

Depends how well he is able to cope with money but you may well be able to apply through court of protection for deputyship of his affairs now he is 18. The fees are income based so you may not have to pay. www.gov.uk/become-deputy

I was in your situation for 22 years although sadly my DD died 3 years ago. I just considered myself to have a different 'normal' to my friends whose DCs didn't have disabilities but I also had many friends with disabled DCs and when I was with them my life was normal when compared to theirs.

We also had inaccessible railway stations (in one direction) but there is no appetite to do anything about it. It doesn't just affect wheelchair users though it affects parents with buggys, elderly people, people with large suitcases or bikes. Society is sadly geared up to deal with the majority not the minority. As is often said on MN you just have to pick you battles and not channel your energy into things you can't change (or at least can't change quickly).

Thanks for that link Discustard I will look into it - need to find a solution that works for us, now DS is an adult this has become a pertinent issue.

Thank you for posting bigbluebus, I am so sorry for your loss.

I know there are many others affected and agree I have to pick my battles. I know that inaccessibility of public transport causes difficulties for many including those you mention...I do really want things to change in terms of people's attitudes so think this is one battle worth fighting though it is really draining to have to fight it.

For example I have had issues since DS was little, with buggy users claiming the wheelchair space. In the meantime those peoples' DC have grown up and they don't need the buggy space, but I am still having to fight to defend that space against the next generation of buggy users.

So I get that public transport is inconvenient for buggy users...but they will only have a few short years of inconvenience, my DS will be in his wheelchair for life. He shouldn't have to rely on the goodwill of those around him to access public transport that everyone else takes for granted...in too many cases that goodwill simply isn't there.

I know I use the 'I' word a lot though this is a place where I offload. I know that using the 'I' word a lot is a sign of self-centredness; I am not sure whether it is true and if that is something I am guilty of.

The 'selfish' charge has been levelled at me before - by some very close to me. But I want my sweet DS to matter to those around him, to not have his rights trampled on.

And I want to matter too; that is selfish. But I can handle being disapproved of if the worst to be said about me is that I am 'a deeply self-centred person who nonetheless values and wants the best for her beloved DS'. I think I can live with being a selfish and contemptible person provided I know I am doing the right thing by my boy. A 'bad person who loves her DS'.

Trying to get the bad and broken sentiment out of the way, in order to get to a better place for my DS sake. I feel the crushing crushing pressure (it's saying 'shhh' to my soul but it won't work). I am broken; I don't know how and why I am still standing here.

You're not being unreasonable and I'm so sorry it's so hard I can't imagine having the strength you must have.

Thank you so much amber763. I am venting here, it is hard but irl I just get on with it. If I only knew that my adorable DS would always be cared for and happy, that he will always be looked after, I would have peace of mind.

It is really hard to express how much I love my darling DS but how alone I feel right now. Talking into a void again....I just want to know my DS will always be cared for, when I am no longer here.

Bloody hell. Who are the 4% who think you are being unreasonable?

You are perfectly entitled to have a pity party.

Is having a joint account with you an option?

Can he go into respite care to give you a break?

I do know why I am here really....I am here for my dear darling boy. So, no suicide for me. Also, I do love life (even though it doesn't love me back) and I love my DH and DS (who do).

I am sick however of talking into the void even though, true to form, it is empty and has nothing to say to me. I am sick of everything around me being so being so hard, on a spectrum between indifferent and hostile; although will get on with caring for my DS regardless.

Thank you for responding to me.

Thank you Ginfordinner, we do get some respite for DS and it is that which gives us hope. There are some wonderful respite carers who are really good with him.

It is hard to say but pretty much everyone has forsaken us. Most don't want to be associated with us. Family, friends, the lot. I have had a comprehensive emotional pummelling, I kid you not.

Op, I have a DD who's in supported living and.currently going through transition to adult services with my son too. It's an emotional time.

With DD I have full control of her.money. She has two bank accounts. One which all her benefits are paid into and I have this card.

Out of this account £120 a week is paid towards her care costs.

And £120 goes into a savings account which DD has the card for. So gives her some autonomy. She goes to the bank and withdraws this money with her carers each week. £30 pays her bills, £30 goes on her food shopping and the £60 left is for her activities in the week.

I have control of the remainder which goes on boring stuff that she'd refuse to buy herself. Such as the duvets and covers she chews to bits, underwear, clothes and household stuff / money for holidays. It means I can just order online for it and send it straight to her home.

So an extra 1% think IABU. I find it hard to understand what I have done to deserve that.

Op. A lot are probably pressing as they scroll, it's easy done.

And if they've done it on purpose they really aren't worth wasting headspace on