Here some suggested organisations that offer expert advice on SN.

I cant do this anymore

(43 Posts)

I am waiting on a final decision on Ds 4.5 on what he has ( they are just waiting for nursery report) .
We saw the specialist last month & he said he was pretty certain that he has Asd/Adhd & Ocd sad but can not confirm until he has spoken to nursery & will then confirm at his next appointment in September & take the necessary steps to helping me & Ds .

Ds does not sleep he can manage on 2 hours & it doesn't bother him hmm , he often does all nighters & can not be left to fend for or amuse himself as he is uncontrollable so im also doing all nighters with him at least 3 times a week , he doesn't sleep through the day either .
I just can't do this anymore , im so tired & his behaviour is beyond a joke , constantly punching me & swearing at me sad

Its not that he is distracted by anything in his room etc that is keeping him awake , he just isn't tired , he even does 4 days full time nursery 8.30-3.45 & even this doesn't tire him out , nor does running round in circles persistently for 2 hours confused I just can't tire him out .
The specialist said that if he was still having sleep problems then he will prescribe him some Melatonin.

I can't do this til September though I can barely manage another minute of it , surely their is something I can do , I need sleep

Anybody ?

I'm by no means an expert, but I'll just get ds2 on the boob and offer some serious sympathy.

NatashaBee Sat 15-Jun-13 18:55:02

You poor thing sad sleep deprivation is truly horrible. When do you go back to see the specialist? I would definitely push to get the melatonin ASAP. Where I live you can buy it over the counter, is that not the case in the UK?

Nerfmother Sat 15-Jun-13 19:01:55

Ok, there are different ways to achieving what you need ( sleep!) so apply for dla ASAP. Ring your social service disabled children's team and ask for an assessment for ds and a carers assessment for you . This might lead to respite ( doesn't have to be overnight, to could sleep anytime) . Obviously you will be entering into formal contact with outside agencies so read up on this to make sure you are comfortable with it.

mrsmindcontrol Sat 15-Jun-13 19:14:42

Sorry to be a doomsayer as I have been in exactly your position but melatonin is not necessarily the answer to your prayers. My now 7yr old DS has taken it for a couple of years & it's effects are very hit & miss. If he's very hyper, it will often have no effect at all.
I think you definitely need to pursue the DLA/respite angle you poor love x

TotallyBursar Sat 15-Jun-13 19:14:43

We used melatonin with asd db who didn't sleep more than 2 hours at a stretch.
It wasn't a miracle cure but the first night of 6 hours sleep I nearly wept with relief.
It helped him drop off alongside all the things you probably already do (dark, no stimulus) but also kept him asleep for much longer than anything else we had tried. It also had a knock on effect on his behaviour as he was not chronically sleep deprived.
To the point he went from non verbal to having 6 words combined with his signs.
He had leaky gut so was intolerant to wheat and dairy - removing those prompted another jump forward & it is prevalent (unsure if officially a co-morbidity) with children with asd.

Yy to great advice above and I'm so sorry you are having to cope with this with so little help sad

TotallyBursar Sat 15-Jun-13 19:16:23

Interesting x post there. Unfortunately just shows how individual treatments have to be.

I agree with Nerf - get a DLA form. If you phone 0800 88 22 00 on Monday, they will send you a form stamped 17th June. You will then have 6 weeks to send it back and payments will be backdated.

I don't post often on the Special needs: children section of Talk, but there are some very kind and knowledgeable folk over there

This page offers a sleep service. Have a browse of Cerebra's whole website, there is some great stuff there.

If you work, can you get signed off work so you can sleep? Your situation is extremely stressful. You are right in thinking you cannot go on like this. Our DD1 has just been diagnosed with Aspergers, and we have been reliably informed that she will grow out of the tantrums and hitting. Don't feel you have to wait for a formal dx before accessing help.

Here is an article on sleep from the National Autistic Society website.

Whilst reading articles is not going to solve your problems, I think that realising you are not alone is of some comfort.

I hope things begin to improve for you soon.

I had no idea I would be entitled to any outside help/dla , how would I go about doing this confused
This won't get SS envolved & make them think im completely useless will it confused

I didnt think I would be entitled to anything without an official diagnosis

mother thanks , no im not working as im off due to my own MH , but even the days he is at nursery im spending my time cleaning up the complete disaster of a home he leaves behind every day

I am pretty sure that claiming DLA does not trigger SS. However, if you need some respite, then you will have to bite the bullet. The page I linked to the National Autistic Society gives details of how to do this.

I am in the process of filling in a DLA form for DD1, and it is quite clear that no formal dx is required. Presuming you get some, you could put it towards a cleaner!

You are doing the very best you can for your son. No one is going to accuse you of being useless.

Nerfmother Sat 15-Jun-13 19:39:33

Applying for dla will not trigger any social services involvement ( unless I guess you put something like you lock him on a cupboard all day!)
Disabled children's services is entirely separate from child protection. So if you ring social services you'd be looking at child in need assessments - google this.

Id lock him in a cupboard if I had one grin

Thanks for all the help I will ring Dla first thing Monday & hopefully it will get the ball rolling .
I did apply on the Cerebra website for an assessment/some advice which I know may not happen , will have a read through everything Monday as I won't get a minutes peace until then
thanks thanks

mindfulmum Sat 15-Jun-13 21:59:25

Message withdrawn at poster's request.

Nerfmother Sat 15-Jun-13 22:09:10

Can you do anything like parks or soft play just to get a few minutes sitting quietly? Is there any way also to enjoy each others company target than just grimly getting through each day? Swimming? Cycling? Playing catch? Board game? Just so you don't lose sight of the loving him bit?

Maryz Sat 15-Jun-13 22:19:36

You have to approach this from various angles and look for short term and long term solutions.

Firstly and in the short term, look after yourself. You have to get some sleep - so you need to pull in help. Where is his dad? Because if you could guarantee two nights a week where you slept solidly for 8 hours and someone else looked after him you could cope during the week. Failing help from his father, can you rope in another relative to take at least a night a week.

Secondly look for longer term help - applying for DLA and respite. And ultimately if you need to get social services help, do. They won't think you are useless, they will admire you for realising that you need help.

Thirdly, you need to make his room safe. Make sure there are locks on the doors, shutters instead of curtains or blinds. Reduce the number of things he has in his room (and in fact around the house). I know that with a child like this the temptation is to buy "stuff" to try to occupy him, but in fact that can be counter-productive as you just spend most of your time trying to organise the random stuff.

If things are really bad and don't look like getting better it is possible to apply for grants for "safe spaces", so you can make a bedroom suitable for him to be left for periods of time while you get some rest.

Finally keep a diary - I know you are probably exhausted, and even thinking about keeping a record will be just another thing you have to do, but it really is worth it. A contemporary diary with facts about when he sleeps, what he does, how little rest you get is very worth having when you try to get people to really listen to you.

Best of luck - the only consolation is that for the vast majority of children they do get a bit better as they get older.

And you should also post on the SN section here - if you contact mnhq they will move this thread - as there are some fantastic people there who have been through all of this and can advise you exactly what to do.

My family have tried to help but they can't handle him sad
My Dp works ft & tries to help as much as poss but he has to sleep so he can work .
I can't handle soft play as he does one of two things which is either punch/curse me or he has a complete melt down & I end up having to climb to wherever he is & get him down sad
Id love to be able to take him to the park or swimming but he is a 'runner' & the first sign of freedom he is off & he can move like lightening , on top of that he has no sense of danger he will quite happily run in the road/jump in a pond .

I will start with a diary Monday .

Also I have removed all the toys etc from the home including DVDs etc & stopped tv time but it made no difference at all (I tried it for a month) its not that stuff is distracting him he just literally can't sleep x

Maryz Sat 15-Jun-13 22:41:17

You need a plan.

Your dp has to work, but not seven days a week, so you have to make it clear that you need at least one day and one night (preferably two nights) where you can get time to yourself, and a decent stretch of sleep.

If necessary, you go to bed at 8 on a Friday and Saturday, sleep til 5 am, get up and let your dp sleep.

You have to remember to look after yourself, because if you crack up, no-one will be able to look after your ds. So you must prioritise (in the short term) getting some sleep. If necessary, make a decision that on a Tuesday and Thursday when he is at nursery you will just go to bed.

ds1 was a runner - I solved it with reins (or a rope tied to the back of his dungarees). I got some very hmm looks, but for me it made the difference between being able to go out and not.

I found that open spaces (we have a ginormous open park near us, with miles and miles of "space") worked better than playground type parks. I could just let ds run. The beach was another good place, as long as the sea was calm.

Rope that just made me laugh grin

Unfortunately Dp does work seven days a week & he does take Ds to let me sleep but he can't control him no matter how hard he tries sad
I have a little life back pack which I have used since he was one but if I go shopping or in to town etc I have to use a pram which has several attachments to stop him from breaking out hmm
When Ds runs he doesn't stop he just keeps going no matter what's in the way <like Forrest gump>

Maryz Sat 15-Jun-13 23:00:25

I sympathise with that.

I had to take my mum to a shopping centre to prove a point once. I put ds down inside the door and he just started running. He went the whole way through and out the other door (of a very big shopping centre) with us chasing him, leaving enough of a gap for me to prove to mum he would never look around. Eventually I did a sprint to stop him going into the other car park.

ds2 (ADHD) is still very bitter about the time we went on a boat trip and I tied him with a rope to the seat, as he wouldn't stop climbing up the sides.

It is tough, it really is, but you need sleep. I think you are going to have to prioritise sleep when he is in nursery.

Someone once likened it to the instructions airline staff give you about looking after children when the oxygen masks come down in a plane. You have to put your own mask on first, before tending to your children. Because if you don't you might pass out and both of you will die.

In your situation you have to prioritise keeping yourself healthy and sane (and sleeping). That isn't selfishness, that is survival. Don't feel guilty about it. The housework doesn't matter. What other people think doesn't matter. Make sure you can cope until you can get a longer term plan (respite, melatonin, whatever) into place. And by the way, your dp can cope - you just think he can't. Honestly, if you dropped dead, he would cope. He just hasn't had to. Same with your family. You need to let them, so that they realise they can (go out, be uncontactable, they will learn, just as you did, if they have to).

It's harsh advice, but believe me, sometimes you have to resort to desperate measures.

Oh im not fussed at leaving him with family etc , Its that he smashes everything in sight etc .
Dp gets scared when watching him as he is unbelievably bad he can manage an hour/two at the most but by then they need to be sepersted

Maryz Sat 15-Jun-13 23:16:50

You need to make your house safe. Or at least a couple of rooms.

I used to dread taking ds to other people's houses, but pretty much everything in mine was child-safe.

In fact the kids laugh at me now as we had so much in the way of plastic plates/mugs etc that we are still using them (and the kids are 19, 16 and 15 and well past the smashing stage).

Do look after yourself, won't you? It's exhausting, and you need to be happy and healthy to be able to help him.

I haven't been to anybody elses home since he became mobile at 7 months .
He has plastic plates etc though he can & does break them .
His windows are nailed shut & I have locks on the outside of most doors , bathroom,bedrooms <except his> , kitchen , dining room , porch etc its like living in a jail sad

I have just spoke to my Dm she is going to come over this week to help with the housework so I can get some sleep yay
Thanks for letting me talk to you Mary & listening it means alot

Where in the country are you op? In some areas there are amazing charities that arrange (well staffed) activity sessions where ds would get well looked after and you could get a rest!

I'm in Lancashire on the Fylde Coast

Maryz Sun 16-Jun-13 09:20:02

It's good your mum is coming smile. I think the hardest thing to do at the very beginning of having a challenging child is admitting you can't cope. It's sort of embarrassing, so we all cling on desperately trying to keep all the balls in the air and pretending it's all ok. Once you admit you can't manage and start asking for assistance that's half the battle.

Of course admitting it brings along another whole raft of emotions - guilt, regret, feelings of uselessness etc, but these are wasted emotions. You are coping well with a difficult child. Which makes you a very good mum. It's easy to cope well with an easy child hmm and you have probably forgotten that.

You really should start a thread in SN - it doesn't matter whether your son has or ever gets a diagnosis, what matters is his behaviour and how it affects your family. There are many who have been there and know the system, so can at least point you in the right direction for help.

I'm not in the UK, so I don't know what to advise you, but they would know.

This is the safe space website I referred to above (obviously this would be a last resort). It is entirely likely that your son will become much easier to manage as he gets older - either through medication if he has ADHD, or through developing interests, or simply by growing through the terrible twos (terrible twos plus ASD = disaster ime), in which case you won't need anything so extreme. But they do exist, so you mustn't think you are going to spend the rest of your life watching him 24/7, things will get better.

Thankyou Mary x

CatherineHMumsnet (MNHQ) Sun 16-Jun-13 12:27:19

Hi - we're about to move this over to the Special Needs section where more people should see it and be able to respond.

Hi crazy. I hope you'll get some more good advice here. Maryz is pretty fantastic, though. smile

My DS2 has ASD but wasn't anything like as challenging as your DS. He needed little sleep but always slept for at least 6 hours, so I'm not going to be much help on that score.

One thing to remember is that if he does get an ASD DX, his emotional age (not his cognitive age) will be roughly 2/3rds his actual age, so at 4.5 he's more like a just turned 3yo. So yo could easily still be in the midst of terrible twos.

What's his communication like? Is some of his behaviour due to frustration at not getting his needs/wants across? Is his nursery a SN one?

A good piece of advice I have heard is that it won't do your DC any harm to assume they do have ASD and/or ADHD and to start treating them as if they did. Parenting a DC with challenging SN is much harder (obviously) than a NT DC and there's no shame in asking for help with respite or strategies.

A DLA application sounds like a good idea. The cerebra guide to filling it out is excellent. Your DC needing close supervision for much of the night should help you get a reasonable rate. Don't be surprised if you get turned down at first or given a lower rate, it almost seems to be a hurdle you have to jump.

As MaryZ says, things will change, it won't be like this forever, there is light at the end of the tunnel.

Ellen he can talk very well though he does stammer when he is stressed which the speach specialist didnt pick up on as he wasn't stressed .

At first he was in a state nursery & although they were a fantastic nursery , they didnt have a set timetable so he wasn't coping with it so last October I enrolled him in the local preparatory nursery for 4 full days a week as its more like reception with a set timetable & he has settled extremely well & loves it their though it does leave me struggling due to the fees but their is no other choice , luckily they are a free school from September so he doesn't have to go to a different school thank god
School don't notice anything wrong with him apart from how his behaviour changes immediately when he gets collected from school so he goes from quiet to jumping up & down screaming while running off hmm & also he washes his hands alot & runs & hides when spoken to directly

Sorry for rambling

Interesting that he can hold it together at school. That seems to be fairly common with ASD (but not in my personal experience!) but does mean that school don't always appreciate the problem. I guess the fact that he can be calmer at school means that he has some level of control, which may mean the ADHD is a less likely DX? Not sure about that, though. It may also be that the strain of behaving at school means that he's been bottling it all up and has to release it at home, making home life even harder?

The free school, that's one of the new ones, an independent state school? What is their admissions process like, are you guaranteed a place? You may need to be thinking about requesting statutory assessment for a statement if his ability to access the curriculum will be affected.

He has already been accepted for a place as he was enrolled at the nursery it guaranteed him a place .
They have made sure that he was placed in a class with all his friends & a teacher he knows really well .
I did explain to his teacher everything & she did agree with me so hopefully what she says to the consultant will help

That's great that the school seems to be on board. Do you think he'll need any extra support at school?

I'm not sure tbh its not even something I have even thought about

Perhaps you could meet with the school's SENCo (special educational needs coordinator, every state school has one) discuss your DS's probable DX and find out if they have any plans to support him?

Maybe have a read up about statutory assessments?

I will look in to it thanks Ellen

magso Sun 16-Jun-13 17:47:45

Hi, I don't think I can offer much advice, as others have done this well. my son (now a teenager) has ASD with ADHD (and also LD) and I can empathise with the issues you are living with. However there are many things I did not know when ds was 4 that would have made life much easier had I known. One of them was seeing ds as having additional needs rather than thinking I was a useless parent who could not run fast enough!!

I do think it helps to see yourself as a parent who has to have super parenting skills in order to meet the needs of your child. To have super skills you need to be well - well rested and cared for yourself. The need to be on high alert all the time is exhausting, especially with minimal sleep. I too used a pushchair with multiple harnesses till past age five and a car for everything I could (Dh was often away so I had the car).

A local store gave me a child and family car badge (past age 5) which was really helpful, but I don't know if they do that now, and I frequented a further away branch just because there was a corner family parking space which if I parked a certain way round, made it tricky for Ds to get away until he was secured. If the pram is getting too small but you still need it, a pushchair style wheelchair may help, so you will need to approach the disabled children team to get a wheelchair/ mobility assessment. Others will know how to do this. I did not, and cobbled together my own!!

As others have said apply for disabled living allowance. If you have a child that runs off or refuses to walk where you need him to go (ds used to just sit sack of potato like- in the middle of the road if he fancied it, he had a way of making himself extra heavy and unpickupable I swear) he may get the mobility element as well although you have to wait till 5 for the lower rate. You may want to apply for a blue badge if you have a car although that can be tricky with a child. It is however automatic to grant a blue badge if the child gets high rate mobility DLA - again children who can walk but who have no ability to do as asked (and follow instructions) should in theory get HRmob but rarely do so its a bit hit and miss. There are people who can help you with the forms which are complex - here we have the money advice unit. DLA is not income dependant. It is to help with the extra costs incurred. Ds was 9 before I applied for it, but the extra money was helpful for all those extra things. Special needs harness (crelling), sensory fiddle toys etc)

Finding a safe place to play (our local park had a well fenced play area) so ds could run and I relax just a tiny bit was helpful.

The other thing I would say is that Ds starting nursery and school were some of the hardest times of my and ds life, due to the difficulties of adapting to school, poor sleep and the speed of his impulses. It has got easier. He just saw the world and society differently. Ds got separated from us at 10 and actually noticed and stood somewhere he thought we could find him!! At 13 he no longer runs away ( except in panic if very distraught).

WaitingIsWhatIDo Sun 16-Jun-13 18:35:06

Hi I'm really sorry, I just replied on your other thread but reading this one, I can see how difficult it is for you. I didn't have the sleep probs when my won was younger though he's not so great now. Get all the help you can, buy it in if you have to. I could have made life easier for myself a few years ago but I was in. Too much of a fog to see it.

waiting if I only I could afford to pay for help , hoping to be able to get a cleaner once a week when Ds starts school so that should help smile

AgnesDiPesto Sun 16-Jun-13 19:39:49

I would contact Social services for assessment and also ask for them to refer you to the OT to make the bedroom safe / sort out some harnesses for car etc. They should provide equipment for free. You can apply for a disabled facilities grant to adapt the house / for safe space etc but they will try various things before they offer anything expensive eg we were advised to clear everything out the room except the bed and put a gate on. My friend paid herself to line the walls with soft play foam. But really this sort of thing should be provided.

Thanks Agnes I will try & make contact with them this week

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