at breaking point.. can anyone help sort any of this mountain of problems out

[oililymad]

ok this is going to be long but i see no other way.

ds1 has as and has growth hormone therapy he is nearly 13 and his behaviour is up the wall
so problem number 1 is his anger. he just control it at all and has recently climbed out of his bedroom window and hit me very very hard,

ds2(4) has probable fg syndrome, has very severe pain in his feet we think down to a tethered spinal cord due for mri next week, we have no mobilty aid yet but have just approved funding to get one and should have it in 2 weeks, which seems like a lifetime, as we are currently housebound as he is bascally unable to walk even short distances. he aslo is being evaluated for asd but the waiting list for the full proper assesment is about a year.

dd1 has school issues
well they are medical issues that are not being addressed by school. she has asthma and is not given her meds on time when i request it.
she has oxygen at school for when she gets sleepy( only has o2 at night and when asleep or just about to go to sleep) i have to go on school trips with her and and i am just not convinced that it is safe for her to be at school without someone there who can react in the venet she needs the o2. Having said that 99%of the time she should be ok its the other that worries me.

this is the biggest dilemma. she goes to a private nursery same as ds2 they accepted her knowing her health problems but am worried that if ikick up too much of a stink about school trips etc that they simply ask her to leave and she loves it there.
she is only 2 3/4 but loves going to school with her brother who is in the same nusery class.

she doesnt have SEN as such her needs are medical. if i approach the lea to try and get some support for her then they will say its health and health will say its education.
it really is only a problem if she gets sleepy, but it is serious if her o2 levels go too low ( obviously)
she is also having some episodes that we think are seizures where her o2 levels drop when she is awake but at the moment these ones are infrequent. although she is having absences too. (EEG soon)

to top this off have just seperated from hubby, am totally overwhelmed cant see the wood for the trees.

each problem with each child seems manageable until you put them all together then its unbearable.

any suggestion to deal with any of this welcome?...

olilymad,i have no suggestions for you but just wanted to send my sympathies and think you are amazing to deal with so much.
loads of hugs to you

I think you need to ask SOMEONE for help. You can't be told to go to LEA by Health or vice versa as they should all be "super" chlidren's departments now that deal with Education/Health/Social Care. I think I would speak to LEA or maybe Social Services. There should also be, or soon be, a key worker system.... Not much help, sorry but hope you can get somewhere. In fact, if your GP is any good maybe go there first?

Gp useless good idea though also my health visitor is on long term sick
the only person who is vaguely useful is the consultant at the hospital and he is nearly as busy as me

Do you have a Social Worker? If not, contact them asap and tell them the WHOLE situation, let them decide what is "their dept" and what is not. I always tell everyone everythign and let them sort it out!

no social worker!!!

Oily, try contacting your ss dept, ask for the disabled child's team, each child is entitled to an assessment & you are entitled to a carers assessment although they will look at each child as an individual they will assess your role as a carer to 3 children with sn's & all the additional needs you are trying to cater for.
Like Davros says let them do the work.

Oilily, I just had an idea about your ds2. Have you got a Freecycle group in your area? You might be able to get a sturdy pushchair or wheelchair for free to tide you over until he gets his own equipment.

For your dd1, could you get in to see the headteacher? If not, would a stiff letter help, detailing why dd needs oxygen and when to give it. If it's there, it should be a major clue for them though
It is possible to hallucinate and more when your oxygen level drops.

I have had another bang my head against the wall day
I called the lea only to be told its a health matter and I need to talk to by gp who hardly ever sees dd and wouldn't have a clue what's going on other than letters from the consultant

I am going to phone wheelchair services tomorrow to see if they will lend us something

Dd is at home at the moment I don't feel the school have enough grasp of her medical condition to manage it and dd does have a lot if apneas too and with the seizure thing it makes the likelihood of her falling asleep even higher

Thanks for all your advice
I need a good day tried to escape it all to the zoo but my season tucker had expired and then had to apply again for the free carer entry thing for each child then dd had a seizure like episode and had to leg I'd back to the car for the o2 which was empty
I an struggling to keep on top of all this stuff

And I just had to buy a new sats monitor wire which was 240 pounds ( long story)

Tomorrow must be better

have you rang social services?

If not ring them tommorrow. Look in your yellow pages and at the front it has your local number. When you go through their switchboard ask for 'childrens disability team' and you will be put through to a duty social worker, if not ask for one. Then cry down the phone and say if they dont come out sharpish you are going to put your head in the oven.

I am really sorry your gp is so crap but you need help woman.

CAB sometimes have people who can help and adcise you

and you shouldnt have to buy a sats montior either, thats bloody disgusting

have you got a sepcial needs project close? (we have snaap but I think thats just local to me) but people like that are useful to get involved in

have you got a child development centre local? they usually have special needs health visitors etc and contacts. They cant let you carry on like this

fwiw(but i might be wrong so will stand corrected)that a statement of special educational needs can be produced for a child with medical needs(and no obvious learning problems)as the school/pre-school setting have a duty of care towards your child and without the extra support(provided from your childs statement) how would they provide it?
please contact wwwipsea for impartial advice

Oily, don't let the LEA fob you off, they HAVE to make reasonable adjustments to enable a child to access the curriculum. It is not purely a health issue, it is an education issue too.

I'm sure a wiser mnetter can quote you the legislation to quote at them. Keep fighting but get yourself some support, phone s services.

Take care.

Like mymatemax says, don't be fobbed off, I work in education and they are penny pinching gits when it comes to things people actually need. (I asked for another nappy bin in work and was told it wasn't in the budget. 12 new computers arrived today [hmm} Keep on and on at them. Shout loudly until you are heard.
All the best.

I have contacted the children consultant asking for him to sort some help out
Also about me paying for medical equipment that tv hospital should but don't provide ( they gave me an archaic sats monitor that had false alarms over 100 times a night and so I bought my ian decent one so I could sleep now every replacement part I have to buy and the monitor cost £2000

I have also asked him about the school thing

Ds2 has an MRI next week that us so important but I can't find anyone qualified enough to look after dd and can't afford to pay someone

Dd did get help from the complex needs nurses at the hospital for some respite when she was younger but this has now all stopped

Sorry for the whinging I just can't stop crying the last few days
thanks to everyone who has replied and read by wittering

have you been to the gp about yourself too, love? its not good for you to be so down all the time xx

Did you ring SS?

chatee is right though, you CAN get a statement of SEN for medical needs as my sister had one (she had CF)

Could the school nurse service help (ring them up)- I don't know if they cover nurseries?

hi everyone
i had a slightly better day!
gp says i am not depressed just kanackered and who wouldnt bge with al this lot to deal with.

dd is going back to school tomorrow. its round the corner from the hospital and they do have o2 .
they are going to record her absences and blue episodes and also how sleepy she gets (this is risky), so that i can use this is my fight to get her some support.

i am waiting for parent partnership to get back to me to tell me exactly where i stand and am seeing the consultant in a couple of weeks so i wil give the problem to him too!

ss here are worse than useless. but i am going to call them to see ehat they say. dont hold out much luck though they tld me last time it was a medical issue not a ss one so it was down to the nhs to provide the respite ( we got 3 hours a week some weeks then 20 the next depending on how many hours they had spare, but we never really on their list and not a priority)

i know i have a fight on and maybe thats the problem i havent enough energy for it at the moment. i just had to fight cs for the funding for the buggy.(and lost) bdf bought it in the end

thanks to all

socail services are coming tomorrow any advice?

i dont want to lie or exagerate things but i am desperate for help.
what could they offer it they felt so inclined?

Sorry, Oilily - no-one seems to have seen your alst post in advance of the social worker coming. (not that i would have been able to give real advice)

How did it go?

they made all sorts of promises. but i wont hold my breath.
it seems it would be easier if the all 3 of the childrens problesm were one childs problesm iyswim
the hard bit is finding which pot of money to tap into.
he said it was very complicated(really!)
said he would call statementing team re dd
sort some ot thing out re ds2 and said that the house was unsuitable ( but my ex's and in his name)
aslo said that if i so much as twisted an ankel then there would be enormous problems.

said he would chase ds1&2's dla (8 weeks and still waiting)ones a renewal one a new claim
also would try and get me some sleep some how!

well if he does half of that i wil be gob smacked.
but he did seem on the ball and will be back in 10 days!

WEll, let's hope he's as dynamic and helpful as he sounds!

Fingers crossed!

oilily, I really hope you are feeling more positive today. I think having a god private blub helps!...I also have a dd with O2 needs. I have looked out for another mum in my position, but have never found anyone yet (unitl now) ts just at awful feeling that nobody else just GETS IT!. I know how you are feeling and how it just gets you down. My dd (5) is in a private school too and although she only needs O2 at night, I do worry about her sats dropping at school and them not recognising it. Although I have told them all about her condition, next year she goes up to junior school where there will be more sport and I just don't where we stand in terms of their 'duty of care'.

You said your social worker was going to get her statemented. Did he say how that would help? I.m not sure the SS are the best people though. Don't you have a district nurse assigned to you? Ours just rings now and again to check we are ok and not going short of cannulas. (But I bought a sats monitor myself as well, it seemed easier than waiting for it to appear!) She contacts anyone we need and can contact a locoal respiratory nurse also.

hi microwave

i thought my dd was one of a kind too!
hvae they found the reason for your daughters o2 requirement?
we have all sorts of things offered to us as possible expalnations but the answer is really they dont know.
dd also has seizures that make her sleepy so i think she needs some support to kepp her safe.
atm she is at nursery ( will be 3 in july)
but the sw was adamant she needed a statement and is speaking to the statementing team.
feel free to contact me! privately it would be good to talk to someone that understood my fears about dd being left with people that were not really watching her closely. the repurcussions are huge.as you well know

Oilily can't seem to contact you via the envelope icon on your post, not sure how to do it! Would be more than happy to talk!

We are in the london area. Do you go to any of the larger london hospitals? the local ones tend to diagnose asthma when really you need a ct scan etc once you are on O2. We had a lung biopsy in the end which showed inflamation, but they don't know why which is so-o-o frustrating and is the scariest thing about it all.dd has had it since birth really, and the O2 obviously isn't a cure. It seems so rare. What is your diagnosis?

Poor you with seizures to deal with as well. I didn't realise i could get a statement for health reasons though, I thought it was just for special educational reasons. Hmm, do you think schools could refuse to take them though as they are scared of the responsibility? (that's my fear, being forced to take her away from school!!!)

microwave here is my email

[email protected]

if youe email me i willtry and expalin the statement thing i have the same concerns as you about schools btw!