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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

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

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.

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

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.

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).

I will look in to it thanks Ellen

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? www.mumsnet.com/special-needs/education/statutory-assessments

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

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

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

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.

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

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.

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.

Thankyou Mary x

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.

I'm in Lancashire on the Fylde Coast

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 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

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.

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 23:00:25

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.

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 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.

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

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