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Original poster

I cant do this anymore

42 replies

crazydrunkevilhamster · 15/06/2013 17:03

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

OP posts:
Original poster
crazydrunkevilhamster · 15/06/2013 18:49

Anybody ?

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motherofsnortpigs · 15/06/2013 18:54

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

NatashaBee · 15/06/2013 18:55

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Nerfmother · 15/06/2013 19:01

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 · 15/06/2013 19:14

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 · 15/06/2013 19:14

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 · 15/06/2013 19:16

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

motherofsnortpigs · 15/06/2013 19:24

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.

Original poster
crazydrunkevilhamster · 15/06/2013 19:24

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

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Original poster
crazydrunkevilhamster · 15/06/2013 19:27

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

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motherofsnortpigs · 15/06/2013 19:39

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 · 15/06/2013 19:39

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.

Original poster
crazydrunkevilhamster · 15/06/2013 20:01

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

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mindfulmum · 15/06/2013 21:59

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Nerfmother · 15/06/2013 22:09

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 · 15/06/2013 22:19

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Original poster
crazydrunkevilhamster · 15/06/2013 22:35

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 .

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Original poster
crazydrunkevilhamster · 15/06/2013 22:38

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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Maryz · 15/06/2013 22:41

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Original poster
crazydrunkevilhamster · 15/06/2013 22:46

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

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Maryz · 15/06/2013 23:00

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Original poster
crazydrunkevilhamster · 15/06/2013 23:06

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

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Maryz · 15/06/2013 23:16

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Original poster
crazydrunkevilhamster · 15/06/2013 23:29

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 , 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

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ATruthUniversallyAcknowledged · 15/06/2013 23:39

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!