Here some suggested organisations that offer expert advice on SN.
I'm in tears I need some help(63 Posts)
I just can't cope with DD any more. When she was 4yo, her paed said she's on the autistic spectrum, threw some leaflets at me and left me to get on with it. Can't get official dx as school refusing to back me because if they do, they would actually have to help me.
DD has been a school refuser since school nursery (tbh even pre-school). Schools have never cared because I've got her there, on time. They see no problems with her (ha fucking ha, they do, but will never admit that they are 'official') I wiush they could live through a ,morning in my house. I just can't fiucking do it any more.
No oine but noone will help me. I can't get the children with disabilities team at SS to offer help because she 'doesn't have PHYSICAL disabilities'. They refer me to Child protection which will just get all my dc took away. CP never offer any practical help. I can't leave DD alone in a room with any of her siblings in case she hits or kicks or punches them (which is not normal in a 13yo, I don't care what people say, 13yo's don't take out frustrations on an 8mo baby FFS) I can't get any housework done.
I spoke to the HV who said she'd refer to homestart. Two weeks ago heard nothing. She also said that she waoould refer to SWAN about how small my house is (HA house, 2.5 bed when I need a 4bed). Heard nothing. Only ASD support group is over an hours bus ride away and I can't afford the £10 it costs to get there. Can't get DLA for DD bcause none will help get an 'official' dx - even tho it says on all her paed records that she is somewhere on the spectrum, it's not official by ADOS test.
I am fucking falling apart here and noone will help. DS2 also has asd - again, 'slightly' more official, buyt still blank refusal by school to back me and get ADOS test done. Even though paed, S&L threrapist OT and phgysio all say he's on the spectrum. NADA. Scuse shit typing I'm at my wits end.
DD keeps telling DS1 that she hates him, wishes he hadn't been born, wishes he was dead, doesn't want him in HER house, hits him, I can't keep him safe, he is getting fucked up emotionally by the shit DD is telling him, I want my fucking life back. DS2 is in his own world, is nearly 8yo, still can't fucking write properly.I'm ready to just phone SS and walk away.
PLEASE can someone talk to me, help me, I can't even cook dinner because I can't leave DS3 alone, I don't know what to do.
you need to go back to your paed and get him/ her to initiate appropriate referrals and write to the lea.
what problems are they having at school specifically? what support do they need in school? call the school and ask for a meeting with the senco, the ht, the class teachers. if this is not forthcoming, call the chair of governors and and ask for a meeting with him/ her and the sn governor. explain you feel that your children are being let down by the school.
chase the homestart referral.
you can apply for dla without a diagnosis. it is dependent on need, not on dx. if you have reports from paed, slt, pt, ot stating that 1 or both of the children is on the spectrum, apply. and include all relevant reports. the form is very comprehensive and will require you to explain in minute detail how they differ from their peers. no dx required.
children with disabilities teams are always massively oversubscribed - and support is allocated by need. dd2 has cerebral palsy and we have never been referred to children with disabilities - we are a 2 parent family and have no other complicating factors such as alcoholism/ drugs etc. unfortunately it's a very small pot of money and if you can manage, you have to get on with it.
take a deep breath. have a cup of tea.
write yourself a list and get on with it. sometimes life seems overwhelming.
you are going to have to keep on at people for the referrals - they have loads of kids to worry about and yours will inevitably not be top priority. so keep on.
go to your gp and break down in tears. discuss some ad's if you feel you need a boost to enable you to get things done. if you are not interested in ad's, then get them to contact homestart on your behalf. ask for a cahms referral for dd because of her violence.
unfortunately, as you know, no-one ever offers you anything on a plate as an sn parent - you have to keep on and on until you get some support.
chin up. take five minutes out and then get back into the fight.
chip shop tonight? where's near? then get them all in bed and start working out your plan.
first things first - how are you going to get through the weekend? neighbours? family? do you have dp?
the rest of this stuff is going to have to be planned out for monday.
You poor thing, you've really got it hard atm.
Firstly, you don't need a DX for DLA, so get those forms filled out!
Have you spoke to GP? You need referred to paed again to get the oficial DX.
Sorry I am not much help, hopefully someone who knows a bit more will be along to help.
or get the small children in the kitchen with you 'helping' - and get the baby in the highchair where you can see. put the tv on for everyone else whilst you sort food. the priority is the next hour, and then you can give up for a bit.
you can do this.
so sorry lifes so hardfor you.
Firstly, if the paed says she's on the spectrum, why do you say she doesn't have a dx? That sounds like a dx.
Apply for DLA for both kids. Put in it you can't leave her alone for a minute. You should get it.
You also need to apply for a statement for both kids. Parent partnership might be able to help you.
Do you have a carers support group nearer to you? My council runs one....
Tried DLA, got refused. Appeal refused too. GP refuses to refer - all done through schools here. School not interested unless child is disruptive in class. Often not even then. No family help. Friends not asble to cope with DD so can't leave her with anyone for a break. Lone parent. DD's dad 600+ miles away, and only recently back in contact after 13yrs. No chip shop. No money for takeaway. DD about yrs behind educationally, on SA+, tried for statement, refused as not 4 yrs behind. tried fighting - impossible without EP report. Can't get school to allocate any EP hours to DD, can't afford private E|P. Asked ofr referral to CAHMS. School did CAF form - got Child protection telling me that if I didn't keep DS1 safe from DD they would remove all dc from me so now frighteneed to ask for help again. No referral to CAHMS forthcoming as DD not violent at school. Been fighting for 13 yrs. Can't do it any more. Need a break. Haven't had a night with no dc in 13 years. No-one will look after DD or DS2 - DS2 goes to his dad's one noght a fortnight, but Ex-P won't look after DD he can't manage her (not his dc anyway).
Just fucking dog-tired and noone wants to give any PRACTICAL help.
Contact your local parent partnership and arrrange a meeting with the senco of the school. Gather all your reports together that is saying she is somewhere on the spectrum and apply for statements for both your DCS yourself. Easy to start off there is a draft letter on the IPSEA website.
In the meantime march your DD down to the GP when she is at her worst and beg to be seen. Let him see her as she is and cry yourself if needs be. Tell him to refer your DD to cahms and the pead again and get the ball rolling.
Take Monday morning as a new starting point. Ignore the past and plan as if you are just at the beginning of the road. Be adamant in keeping on asking for help and dont give up. When you have made the first phone call on monday give yourself a pat on the back.
You are a brilliant mum in a very difficult situation x
Because it's not a dx through ADOS - and I can't get any actual HELP without an ADOS dx. No parent partnership offiucer for last 3 years in my part of Essex. No carers support group. No statement because she isn't far enoguh academically behind by my LEA's illegal balnket rules. Haven't got money or energy to fight LEA any more. Know LEA breaking law but not strong enough to fix it. DS3 only 8mo, trying to walk keeps falling over hitting his head can't be everywhere at once. Also have epilepsy myhself stress making it worse.
No parent partnership officer for 3 years. School useless. Not only me who has problems with this school. No other schools with spaces.
Just need a BREAK. This is breaking me. I'm normally so strong, always the one people look to to lknow what to do about dc with SN, feel like a fraud cos I'm falling to fucking bits.
Have you phoned cahms yourself? From a family point of view first? Try it that way. Express the huge problems you are having with DD at home rather than school. Once in there you can expand to the other issues at hand.
Failing this I would say MOVE and start again in another school that are more inclusive and concerned about SN.
Can't move - no local council connection to any other area of UK plus got court orders banning me from leaving the town I live in until DS1 (9yo) is 18yo. How do you phone CAHMS yourself?
sometimes the local NAS volunteer will do a home visit for a family in crisis - have you spoken to anyone specifically about this? i realise it is difficutl to get to the support group.
it's friday night. it's perfectly natural for this to be the most stressful part of the week. but you need to start kicking, screaming and crying on monday. for now, do what you need to do to get the kids fed and into bed.
it'll be a bit brighter when you can hear yourself think. and get your plan of action written down.
if the stress if triggering more szs etc, you can use this as a bargaining tool with your doctor.
Last time I tried the GP, he contacted Child protection, who said the best solution was for me to put the dc into voluntalry care, they would rather take the dc away from me than give me ANY support to cope myself.
Tried local NAS - they said they couldn't offer any help until ADOS was done.
they aren't going to take your kids away. but sometimes threatening that you will leave the kids with them can suddenly mean they find you some support.
where is the baby's father? can he remove the baby from the house for the weekend so you can get yourself together with the older ones?
i assume ds1's dad is the reason you aren't allowed to move - so he must be close. get him to pull his weight and take his child off your hands for a day or two. what does your custody agreement/ do your custody agreements say?
you have to fight for this, hunty. you can;t just give up.
i know it seems overwhelming, but you can;t just lie down and take no for an answer.
are you getting maintenance for any/ all of these children?
it's most unlike nas to refuse help to any parent with even the slightest suspicion of as/asd. get back to them. you might have stumbled on someone having abad day. explain you need helpt GETTING a dx. and fighting for ados.
have you spoken to the Chair of governors of the school? to the sen governor? when was the last time you had a meeting with the senco? you need to write to them ALL, enclosing copies of the reports saying the children are on the spectrum, and formally request assessment.
formally. in writing. so that it is traceable, and you have the proof.
DS1 does spend some time away at his dads - but hios stepbrother has ADHD and his dad and stepmum are also struggling - small house, many dc, DS1 gets no sleep there as stepbrother wakes him 4-5 times a night. DS1 is there for weekend - but he is usually most helpful, not here to help.
Baby is bf bottle refuser, so ex-p can't take him. Ex-p also useless with him - doesn't cope with baby, will probably not be able to cope with overnight until DS3 is walking/talking/potty trained. (Ex-P needs his mums help to cope with DS2 nearly 8yo for ONE NIGHT A FORTNIGHT).
Last time I tried that, threatening to leave dc with SS, I had to go to court to be allowed to have them back - backfired muchly.
if you feel completely unable to do any of this, you might find some voluntary support at the citizen's advice bureau. they might be able to help you figure out a plan to make life easier.
can i make a sugestion? if dd hits any of the dcs call the police. i know it's hard thing to do (dd won't be arrested) if police are called they have to refer paperwork over to social services, gp, etc... this will make them sit up and listen. the ss school, gp, etc have to act. hth you get help for you and dd
Don't get to see SenCo at DD's secondary - only one of the higher LSA's. SenCo in school with 2000+ pupils has no time to see parents. would have to get copies of files from paed - they discharge at 11 here.
Maintenance - £50 a MONTH for DD. £1.36 a week for DS1 (until Jan when it will be zero). £55 a week for DS2 & DS3. Bus fares to get DS1 & DS2 to school are £48 a week. Live 2.9 miles as crow flies from school - free travel only after 3 miles. DS2 also has Hypermobility syndrome, Hypotonia and chronic asthma - can't walk that far.
Just had to give up my job after 2 weeks as SEN CM gave DD notice on first day. So back to IS. Which isn't enough money to live off. More money going out than coming in.
ok. if you're still bfing and he's a bottle refuser (and i speak from long experience of the same) that's not going to be helping you fight the good fight. you're clearly knackered.
chase the homestart referral as a matter of urgency, and work out whether bf is your priority (it's fine if it is, but i found it emotionally and physically exhausting as ds1 was feeding every 2 hours, so decided to go cold turkey at 10mos) - if it is, you are probably going to have to let everything else wait.
homestart homestart homestart. and get yourself to the gp on a personal basis to check for pnd etc.
don't take the 'not good with babies/ children' crap from the ex's btw. he's his dad. so once you've got the bf thing out of the way, hand him over, and instil in him it is his responsibility to get himself organised as afather. whether he needs his mums help or not.
likewise - the chaos in the other house is a tempting reason for you not to send ds1 there, but it's really their problem, not yours. you can't solve everyone else's problems for them. and you need a hand. you need to get everyone else to start pulling their weight to relieve you of a little bit of your burdens.
CAB have no disability advisor- won't let me see normal advisor as 'they're not qualified to help you. Travel 35 miles to our nearest disability advisor if you need the help' Fat lot of good when you don't drive because you've got epilepsy.
If I phone police - SS have already threatened to take ALL my dc away (and have done once) if I can't keep DS1 safe. Would be stupid to phone them. SS don'#t WANT to help me. costs too much money.
Had a care assessment done on myself RE my epilepsy 4 fucking years ago - stated I needed help cooking anfd bathing dc's, occasional respite, plus wet room. Never actually GOT any of the help SS said I needed. Tried chasing up, got told will phone back. In the end I gave up I just don't have any more energy to fight for the help I need. Why is it so fucking hard - they say I need help, why the hell won't they just do it instead of leaving people to fall apart?
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