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 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 , 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
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 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
You poor thing 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?
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.
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
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
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 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.
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.
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
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?
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 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 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 .
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
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 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.
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 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 When Ds runs he doesn't stop he just keeps going no matter what's in the way <like Forrest gump>
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
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
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