Is anyone her a completely LONE parent? no ex, no family support, notheing at all? just you and DC?

[marjproops]

Every lone or single parent seem to have SOMEONE around. (ex-partner/parent/aunty/sis or bro/friend) .Its literally just me and DC here.

i get scared if anything happens to me DC has NO ONE at all in the world for her.

friends dont want to commit as DC has such complex disabilities, (I understand) and we have no family or anyone else. DC would have to go into a home if i died.

seriously. us against the world.

anyone else? how do you cope?
what do you do?

how do you manage with NO respite EVER? (not that i mind, im devoted to DC and she needs 24 hour care) but how does anyone esle manage?

when you are ill or whatever?

[glitch]

I'm not as I do have a helpful ex but I wondered if you could try to get some respite from your local county council. Which area are you in?

It must be really hard work with no break. How old is your DC?

[marjproops]

DCs 12.

its just the thought and fear of something happening to me (i had a mild heart attack 2 years ago and im in my 40's) and DCS got no one at all.

when i was in hospital after the heart attack DC had to stay with me in hospital, they were going to put her in a home for a while but she freaked so much they left her with me (i was concious for 99.9% of the time). and i wouldnt have it anyway, i had to croak instructions to the hospital staff (who were lovely) about her needs and toileting care and stuff.

council respite? no, I love being with her, she can play in her room for a bit and give me 5 or 10 mins for a cuppa ( i can see her from the living room) and she freaks with other people.

and tbh in area i live no one speaks proper English and she finds accents difficult to understand. we are the only white people around, seriously! (dont have a prob with that, just DC and the accents).

but in all these years weve only ever had ONE weekend holiday when my gran (Now deceased) paid for a break for us.

[HerrenaHarridan]

Me! My closest family live 400 miles away, they would take her if I died but if I'm ill it's tough shit!

I think you do need to reach out and create a network of support, not specifically for respite but for socialisation and emotional support

Cab will be able to advise you of organisations in you area.

[marjproops]

Thanx.

I do have friends but they just cant understand or cope with DC. I hope theyd be there in an emergency...werent there for the heart attack but hey ho.

Im having Camhs appointments at the mo for DC so they may know someone or something?

[glitch]

My DS goes to a club for disabled children for 3 hrs a week and loves it. He gets a break from me, I get a break.from him and he has 1:1 support. I was looking recently at our local carers info and they can provide a grant for a respite break if your health is suffering.
There is also the family fund and the 3H fund who can help with holidays. Sounds like you are in need

[marjproops]

Thanx. thing is i WAS looking into local clubs etc but we are having to move cos of the bedroom tax (we are underoccupying) and so dont want to settle DC somewhere if we dont know where we're going to end up, nothings come up yet for a move, will just have to wait till then.

Ive tried family fund but get nowhere with it.

Id love to take Dc to Jersey or Guernsey or somewhere quiet but scenic.

[HerrenaHarridan]

Is there a charity specific to you dc disability? They will be able to help you fill in forms for family fund and they will understand better than anyone else can.

Before you move you should apply for a discretionary for you hb.

[marjproops]

Thing is DC has so many things these people can never find the right 'box' for hher and so we get passed from pillar to post and then forgotten!

shes got a CAMHS appointment this week so ill ask there if theres anything. thanx.

[theredhen]

Poor you!

I was a single parent for 6 years and I also had/have no family.

I did have an ex, albeit an unreliable one who I was far too subservient with for fear he might give up on ds too.

I still feel sad at birthdays and Xmas when I see my step children having a big family all wanting to see them.

I remember being desperate for adult company and then being invited out by some mums from school and then not being able to go because of lack of babysitters. One mum simply said "can you not get your family to have him". She couldn't believe I had no family.

I also remember ds aged 5 asking me if I could teach him to drive now. When I asked why he said he wanted to drive so he could get to asda if I died. He thought he'd starve without me.

Having a disabled child 24/7 must be incredibly hard. Are you definitely getting all the support you can from the relevant authorities?

[Scruffalo]

YY to people not understanding why I can't 'just get a babysitter' especially when most other lone parents I know have great social lives EOW when the DC go to their dad. Despite living close by, DM will only have them if it was for something she considered to be important, but so far that hasn't included being unwell or in hospital and would never be just for going out with friends. Hence the fact I have now lost touch with most friends I had pre-DC and even less people around to help out when I need it.

[marjproops]

theredhen Bless your 5 YO and the story of the car! and thanx all for posting.

scruffalo, I had 1 friend who took DC out for an hour once but was the whole hour virtually on the phone to me asking me this and that about her, and said after she couldnt cope with DCs needs. I retorted ''well, that was 1 hour of your entire life, THIS is 24/7 forever with me, ''.

needless to say, i thanked her for at least offering in the 1st place and trying but it really peed me that no other suggestions or offers were made.

we had an appointment this afternoon at one of the childrens services so ive made clear what help exactly would be appreciated. dont know if it will do any good, been fighting for 12 years already for help .

[mylilangel2]

oh God I feel for you, I am going through a similar situation. I am a new single parent as my fiancée decided to "be a christian" without me ( haha its a very long and complicated story). I have a 23 month old son, even though he is very healthy he is also very active and driving me crazy. I have no family here, no right to work in this country at the moment, they will probably cut my benefits as it was through my partner that we were entitled to anything, I have no friends at all!! My family doesn't know what I am going through, I go for days barely speaking to anybody, just enough money to feed my son, haven't really eaten for weeks, and ive developed a night anxiety ever since this happen! The only thing is that my ex does want to be involved in our sons life so I guess that makes it easier. Friday will be the first time for him to have him over night, I am looking forward to that as I need a break but I don't know where to go from here, I want to have a job so bad I am almost obsessing over it, I have made a few applications for a nursing course and I am only left with the desire to keep my sanity and hope that I will see better days. Sorry for the long post but do try to keep your faith and know things will get better and nothing bad will happen to you and your child.

[mylilangel2]

just to add, I am sorry if my post was to much about me and too little about you.What I wanted to say is that hopefully you will live a long and happy life but if something does happen to you just know the world is not so bad and your daughter will be looked after and someone will love her. I realize that we live in a world that everybody is concerned about themselves and nothing else but then again if you live in fear and you don't find your peace then no matter the amount of help people give you, you will still feel lonely. I've worked with young adults with disabilities in different care homes, some had no family while others did, but I wanted to say that in the small private homes I found the people looking after them being very caring and loving and providing them with everything they needed to have an independent and healthy life. But I do pray that wont happen to you.

[marjproops]

Thank you and dont worry about your post thats what its here for, to share similar stories.


things are slowly but surely getting worse for us in our circumstances. social services are around, (they came this week to see us and could see im trying my best) but thyre taking foever to START to help.

i do hope you get some help too, i cant believe you cant find a job, you sound so eager to.CANT work as DCs disabled, well shes my fulltime job anyway!

but i know, its hard to find the finances to feed and clothe. my internets paid for by a good friend and my pc was given to me (even tho its a million years old!) and this good friend keeps sedning me cash gifts to gelp me out, but she doesnt live in this country so cant be near.

[decaffwithcream]

Ask social services about home help so your daughter could gradually get used to a regular carer who could take her out. If social services fail to help in a practical way try applying through a public health nurse.

[marjproops]

decaff been fighting for this all DCs life....absolutly f**all.

i wish someone would, mainly for DCs sake, not mine, i love being with her, but they really have been no help at all, ive been to hell and not even back from hall banging head against brick walls about stuff.

in special needs site too, others get same probs!

[decaffwithcream]

I'm in the same position, same age child too. Finally got home help 2 years ago. Social worker failed to arrange it for almost a year of specifically asking for that. Public health nurse applied and we had it within 2 weeks.

I know how frustrating it is, there are obviously services your daughter and you are entitled to and someone fails to do their job as gatekeeper for those services you miss out and they just sort of drift on and drop your case because it hasn't been solved simply. If your child's needs are less complex they fit in services better and it's easier to get help. It's all very wrong. I applied left right and centre and eventually found help unexpectedly through the public health nurse system. Most organisations took all the details and never got back to me...

[marjproops]

glad you got the help. its so simple isnt it? hello. child needs help. help.

[decaffwithcream]

The services seem designed for a child with very straightforward needs at a particular level. And even though I know accessing them is not easy. But they seem designed for the average special needs child as if such a child existed and you only strike lucky if someone with a wider mind wanders into the frame.

[equinox]

Well my situation isn't quite as bad as yours Marjproops however I have no family support whatsoever (parents deceased and no siblings) and have never had bar chats to a very elderly aunt who could literally die tomorrow and lives far far away.

My ex lives 100 miles away and only sees our 8 year old boy for c 6 days and nights every halfterm/school hols. It is only in the summer hols that I get maybe 9 days twice over the summer hols if I am lucky but that is not set in stone.

It is really difficult as invariably this means I simply cannot earn enough money to even have a semblance of social life nor any real savings for e.g. a holiday. It often feels there is simply nothing special to look forward to and every other single parent has it way easier than myself. However for all I know they might envy me for e.g. owning my own home, having a nice piano etc. who knows!

It is also noticeably hard to get out and meet sufficient friends to build up a social network owing to a sheer lack of money and equally finding a normal boyfriend as they don't want to know when they
hear I am trapped indoors night on night with no childcare for free. Although I have found a teenager recently for £2 an hour even that I can scarcely utilise as a form of support owing to endless bills despite stringent budgeting ....!

So yes it does feel really hard as I can't build up a social life based on every 6 weeks having a few nights to myself lol....

The only thing to do is for me to keep working at my earnings so I can slowly go out more and more and hope that these long hard 8 years alone with no decent social life/boyfriend come to a close sometime!

I hope this is of some comfort to you Marjproops although your situation does sound really hard - is there a support group in the area for parents and carers of disabled children where you could meet even monthly for support and mutual sharing at all?

[aliciaflorrick]

Me. EX DH is in the UK after leaving me and the DCs in a different country. DC1 has special needs which can be exhausting at times. I do have friends here, but they like to go back to the UK regularly, or they follow the work so are not around all the time.

I don't find caring for the DCs exhausting, but it's the constant worrying about money, keeping things going that wears me down. Today something has gone wrong with the car, I really need my car, the only money I have is the money I saved up for spends for our holiday next month. I need to get the car fixed because we live in the back of beyond. It's worrying about this sort of stuff that wears me out, and also what happens to the DCs if anything happens to me, because I know for certain EX DH wouldn't get himself on the first flight to care for them.

[marjproops]

equinox thats an awful situation and i soooo understand, i dont have a social life at all....i dont mond as DCs my life and i love being with her but i have no money for anything either. bloody government and their tax hikes to the vulnerable.

however, what doesnt help is that DC and I have social phobia on top of evertything else so were qite insular. bar a few friends!

Alicia yes DC is exhsausting but rewarding too, Im the same as you with the money worries. and i was the same with iour car. a neccessity but it failed the mot and service and i had to fork out £8oo to fix. thankfully friends lent me the money and im slowly paying them back.

but i was saving that for 1- a break which weve never had and 2- a new neighbours moved in and is so bloody noisy and im trying to soundproof so trying to save for that too!

its just frustrating isnt it that even though the most important thing is beingin a good loving relationship its also the financial/practical help too thats missing, plus protection as DC and I are extrememly vulnerable.

Love being DCs mum, love our close relationship but HATE being without a partner.

[BlogOnTheTyne]

My situation is similar but my starting point may be different as I chose to have DCs alone. No help ever from the v start and one DC has Asperger's. They're twins and 12 now. Absolutely no respite in all that time and although it gets easier in some ways, it gets harder in others.

I too am freaked at the thought of something happening to me and the DCs having no one. Just next week, I'm compelled to work away for long days, at a moment's notice and unsure what to do with last minute arrangements for DCs. Although 12 might appear to be quite old now, because of the one with SN and the fact that they've never done much at all for themselves, there's not easy solution if I'm not there to do school runs either side of the day.

I will call in help from a friend, in an emergency - but few people want to have my DC with Asps. as he doesn't fit well with other children. Also, I hate being beholden to others when I can't easily reciprocate.

I feel I just have to stay strong ALL the time, until they're old enough to be independent. Whenever I've been really ill - thankfully not needing hospitalisation - I've 'managed' them from my bed but still had to drag self out to do school runs and buy them food, even when barely able to crawl around.

It's tough. I adore them and wouldn't be without them but I actually find it harder now than when they were little, as their needs are more complex and after 12 years, with no breaks, I feel exhausted.

It's also difficult to build up a social network as all I ever do is work or look after DCs whilst so many other parents get occasional hours off or even whole days off, whilst a relative or OH takes over.

I don't wish for a partner but I do wish for a few other adults in our lives to shoulder the responsibility sometimes or just take one of them out - or better still - both of them.

So I do understand how you're feeling and I've also had horrendous neighbour problem in the past too! Sometimes I wish I could 'hire' a man to scare off neighbours/ exploitative workmen/ people taking advantage of a woman alone eg at the garage!

[marjproops]

Blog wow thats almost word for word exactly (apart from choosing LP) my situation.and im fulltime for DC.

especially your last 2 bits there.

[BlogOnTheTyne]

Yes. I was actually wishing the other day that I was a man! when being patronised and exploited by some workmen I had in for house repairs. I pride myself on being a strong, independent woman but in the face of a gang of builders putting you down, it's hard to remain tough! Same with horrible neighbours.

I've noticed that being a single woman, as opposed to being one of a couple or even, say, with a mum or friend in tow - I get treated in a particular way. I don't think a single man would be treated the same.

If I stick up for myself, it's considered rude or stroppy in a woman whereas in a man, it'd just be interpreted as giving a subtle 'warning' to back off. If I 'play the game' of smiling, appeasing little woman', it sometimes helps (yuk!) but I absolutely HATE doing this and it can also backfired, as you get even more patronised.

I need a nice male friend - platonic - who I can call on at times like this to give me the backing I need. But I really hate the fact that I think I need this and hate that society still seems to look down on a single woman in a way that it doesn't on a single man.