I;m not coping, but what choice do I have?

[EileenGrimshaw]

My son is 7.5 yrs old, with severe and profound learning difficulties. He has no speech and I am lone parenting.
I have got to the stage where I don like my son anymore.The constant noise, demands and destruction have bought me to the end of my tether. I am severely depressed, have my own health problems and have tried GP, SS/SW for help, but got nowhere.
I get three hours respite a week, I used to get six when I wasn't on my own.
I can't reason with my son, he is mentally about 18 months, but the size and strength of a 9/10 year old.
I feel as though I am a machine here just for his needs and if he wern't here I would be nothing as I have gradually lost my identity over the last 6 years. My GP says I am very run down, no kidding and I feel as though there is nothing left for me.
I would put son into care, but his Dad and my family would be horrified.
Mental torture, physical and emotional exhaustion, is this my only choice?

[CristinaTheAstonishing]

I'm so sorry, EG. 7 year old boys can be difficult and demanding of time & energy, more so when there are other problems too. It sounds mad that you had more respite when you weren't on your own, is there nothing that SS can do to help with this? Has the GP suggested anything for the depression?

[mamazon]

your situation does not sound too infamiliar unfortunatly.

If you are getting respite already then i guess you have a SW already. can yo not speak to them again and ask if they can increase your hours?

does his dad ever take him from you for a while? i think you need to force those who claim to care to prove it.

i went through this phase as well and ui hated myself for feeling the way i did which just made things worse.

i dont do hugs but if i did i would send you some, you sound as though you need some.

[FlightAttendant]

Poor thing EG You, I mean. I really hate to think you are going through this. I am on my own which is demanding enough with a four year old but a child your son's age without the skills to match must be hugely difficult to cope with.
I hope there is someone on MN with a similar experience behind them, who can best advise you. I'm sorry not to be much use, but we all are listening and here for you.

FWIW I would not condemn you for wanting to place him somewhere he would get professional attention...you are his mum, not superhuman and you only want what is best for him...if you are falling apart it isn't going to do him any favours keeping at it. I think most of us would be hard pushed not to crack under such pressure. You have done well to manage all these years.

[ConnorTraceptive]

It's all very well that his dad would be "horrified" at the prospect of putting him in care but he needs to shoulder half the burden for you.

You need to speak to your ex and loay it on the line. It's his responsibility too.

Can totally understand why you feel the way you do. I really hope you get the help you need

[callmeovercautious]

It is quiet here on a Saturday so I thought I would post to give you a Bump up the listings again.

I'm sorry you are feeling so desperate. I agree that you need to get others more involved in his care. You will be no help to him at all if you crack.

Someone else may know of Charities that can help with additional respite care?

[EileenGrimshaw]

Thanks Mamazon.

I have asked sw for 1 more hour per week, but was turned down.
Xroads used to do three hours, but have no staff available atm. xmas holiday scheme consists of 3 hours on the 1st December, which is pointless.
I am on ad's and have recently doubled the dose, but it's not working.
DS dad is abroad and wont be able to come back until xmas. My parents are just getting too old.
I know there are a lot of people who are worse of than me, but just thought their experiences and opinions might help me.sorry if I sound whingy, just feel so sh**e

[colditz]

You need to issue the ultimatum to his dad, because frankly unless he is up against the military police, he needs to get his arse back here now. You need help. His dad has no place to be horrified at anything you do to survive unless he is prepared to do what he expects you to do.

Ring him. Demand he comes back now or you are going to start ringing round social workers. If care is not good enough for his child, he needs to do something about it and come back now!

[yurt1]

Your son sounds like mine. Mine is 8, no speech, severe learning difficulties, challenging behaviours. I sympathise- I'm exhausted with a husband & a supportive and young mother to help out, so I can fully understand how you must feel. This morning I couldn't bear the constant tap running (don't ask) anymore so popped out for a few hours. It does make a difference.

Have you tried asking for direct payments? I get hours than you're getting- 6 hours a week during school terms, 15 hours a week during school holidays. I don't get that much time away from ds1 with that (do get some) but I can employ help with the other children etc. DP's are not the total answer but they may be a way of buyng you more space at your convenience.

The other thing I have found that has helped has been of all things,working. It means I'm guaranteed my own space- I've chosen carefully and haven't taken on too much work pressure (and of course there is then the whole carers allowance thing to be careful of), but just getting time to be away from learning disabilities etc has been a break. It's also in an area completely away from parenting so I don;t have to spend my time surrounded by normal kids, or 'normal' parents. Without work it would have been hard to get non-mother friendships going iyswim.

AD's probably aren't going to be the answer when your situation is so exhausting. How much sleep do you get? And how much time alone in the evening? I know that when ds1 is in a refusing to go to bed until midnight stage I find things much harder than when he's asleep by 9pm and I've got a couple of clear hours away from being a 'machine to provide foor his needs'. (I recognise that desccription)

The other thing I found really helped was having 6 months counselling from someone very familiar with learning difficulties (would have been pointless having it with someone who didn't have that experience I think, as it does make life so different).

[Saturn74]

Agree with Colditz.

You need to make it explicitly clear to the father of your child that you are at the end of your tether.

He is in no position to be "horrified", and needs to step up to his responsibilities.

Three hours respite a week is nothing.

You don't sounds whingy, Eileen, you sound exhausted, frightened, and depressed.

As any of us would be in a similar situation.

Can your GP help you access any more support?

[EileenGrimshaw]

I have told his Dad that he needs to come home, but he say's he is away to enable us to have a better life.
A better life? when? when I am in a mental hospital with a breakdown? I have begged him to come home but he will not.
I am looking for work, but I live in a rural community and don't drive, so it's a bit limited to local town, bus ride away jobs.
I have applied to a local charity who have agreed a donation for some extra care, but I can't find anyone willing to help with DS.
Councelling looks a good idea. I know the waiting lists are long, but will give GP a call next week and enquire.
DS sleeping ok atm, as he has been drugged up, not good I know), but it won't work forever. The depression is making me very tired and sleepy.

[jamila169]

Is there no health care respite facilities in your area? in ours we have both SS and NHS , the nhs ones tend to do the weekend respites and SS do home based support all part of CLDT just different provision. I'd definately try for direct payments. as for his Dad -what better life? seems he's got one and you're hanging on by your fingernails. Who does dad work for, if it's a multinational or the forces there are welfare schemes for dependants usually.
Lisa x

[yurt1]

Respite is hopeless in most towns. There is none available for children in my city now (unless you buy it privately from dp's). It's crap.

Finding willing people is hard if you're in a rurual area. Do you have a UNiversity remotely near you? If you can get to Pscyhology students they're usually very keen to come and work with children with LD's (they need experience if they want to stay in Psychology) - I've employed a number- very mature and reliable and with the energy to engage ds1.

[shiny1]

snap,he sounds just like my 13 yr old dd,but i have ahusband and 4 other kids at home to give me some help.im on ad and am so tired,i sometimes just wish for a normal life.Please tell your gp how you fell,you must be entitled to more help,sending you hugs.

[needmorecoffee]

if his dad and family would be horrified by you putting your son into care, then why don't they look after him? That sounds abit blunt. Money isn't everything. I made my dh give up work to help care for our dd (quad cp and lots of screaming).
Other things I can suggest are tackling SS again. You probably want to bang your head againt a brick wall but hassling can help. I now get 12 hoursa week respite (9 are a KIDS worker and 3 are direct payments). Someone I know gets 43 hours per week (!!!!!) because she made it clear if SS didn't provide the DP for that much her son was going into residential care (CP and severe LD) and she started looking at various places. Of course, thats much more expensive.
Other options are residential school. I don't know how you find one or get your son into one but I've heard of people who have done that. Charities that deal with LD might be able to help there. Some respite places offer 3 or 4 days break and seem to be word of mouth cos SS and the NHS keep them secret for some bizarre readson.
But firstly his dad needs some realism. He sounds like he's running away and putting money/work before his family. He needs to shoulder his share of this.
Sorry can't be any practical help.

[yurt1]

To find a residential school you can start phoning people (the haeds, the ed psych etc). It's often funded between SS and the LEA. nmc is right that because of the expense you may be offered a better deal in respite if you start the ball rolling about residential care. Find the most expensive school you can, and start making interested noises.

[colditz]

The only person who is getting a better life by your son's dad being away is your son's dad. Furthermore, I'd put money on him knowing this already, hence his refusal to return home and face his responsibilities.

[FeelingOld]

I don't know if this is any help but if you can get a donation from a charity to provide some extra care have you thought about a childminder? I am an 'inclusive' childminder which means I have been given extra training and have been approved by social services to provide respite care.

You have to get some rest and unfortunately if this means that your son has to go into some kind of residential care then you have to do this. You will be of no use to him if you get burnt out and have a breakdown.

[missyhissey]

Poor you, wish there was something I could do to help. I definitely agree with those who say that dp and family are in no position to be'horrified' at any decision you make regarding your son. They should be helping you an awful lot more.

[EileenGrimshaw]

I feel guilty about not coping, guilty that I can't be bothered to attempt to engage with him, ASD makes him so insular until he wants something. He has 2 tv's on atm, both with 'finding nemo' on the, both at full blast.
I sit in kitchen, on MN and wait 'til bedtime to enter other room and survey deswtruction.
My parents are too old to cope with his demands and not strong enough, they do help as much as they can, but it can't go on.
I just want to switch off, take a deep breath and run away.
All I get from SS is that lack of facilities for children his age and how they have to provide for others with more complex medical needs. I do understand that there are children with more needs, but I seem to be at the bottom of the heap atm.

[EileenGrimshaw]

I feel like sending this thread to son's Dad and let him read it.

[colditz]

Do so, send him the thread. Don't feel guilty, you are doing your best. There is only so much a human being can do in the face of no rewards!

I think a lot of the sn crowd comeone later in the evening too, as it is the first opportunity they get, so keep this bumped for more advice on squeezing some more help out of the social workers.

I am assuming he is at school - can you talk to them about the way you are feeling? I am sure they would understand if anyone would!

[needmorecoffee]

Don't feel guilty about not coping. We've all been there. I had major breakdowns and became screeching hell-harridan and I've only been doing this 3 and a half years plus my daughter is totally immobile so can't destroy things. I have friends with mobile children who have severe LD and they go through hell.
If it were me, I'd call social services and tell them I can't cope anymore and need residential respite right now. Its a fine line of course cos you don't want them thinking your child is 'at risk' but taking him to the office can work a treat. It depends on how pushy you are.
Where in the country are you? Maybe there's a MN group and someone could advocate for you or go see the SW with you.

[EileenGrimshaw]

My son's teacher has been fantastic, she actually said the other day at a multi disciplinary meeting the she didn't know how I coped, as he is hard work. I thanked her. I don't have too much contact with school as my son goes by transport, but I know he is doing well and happy there.
I can understand when mothers of toddlers find it so hard and soul destroying, my 'toddler' is still going 6 years on.
His Dads advice for today? take him out on the bus. I took him out on Thursday and he kicked off big time and I was close to tears and had to come home. Thats the only time we have been out this week, not good.

[colditz]

bump

[yurt1]

Eillen- I sat in one room unable to walk into the kitchen to survey the destruciton at one stage today. I so know how you feel.

We've just 'tried' a trip to fireworks- for the first time ever. We're home - left ds2 and ds3 up there with granny and grandad. Impossible & ds1 likes firewords. The problem is hainv gother people around. Don't know what we were thinking of. I would NEVER take ds1 on the bus. It would be an absolute impossibility. It sounds as if his father has NO idea. Zero. Does he ever look after him alone?