Sleep deprivation has nearly killed me off.....

[JaysMum]

37 nights now with very disturbed sleep has now taken it's toll on my poor old saggy body.
During the past two weeks I have had 5 nights where I havent even made it too bed. My little man is surviving on about 4 hours kip a night....I've tried everything to get him to sleep more....but nothing is working.

Three nights ago I was crashed out on the sofa and all of a sudden I woke with the most horrific pain in my leg....I thought I had got cramp because I had curled myself up in the most peculiar position.

The next morning when I was in the shower I discovered a huge bruise on my calf, just where the cramp pain had been. My leg was swollen and I thought maybe J had given me a kick the day before and I hadn't noticed....that's how often I get a bashing...I don't notice the bruises and scratches anymore!!!

Last night I crawled into my bed at 3.45am. I woke at 4.50 with the most horrific pain again in my leg only this time the pain was 10 times worse and wouldn't go away.

By 5.30 I was rolling around on the floor and hubby was on the phone to emergency GP. My leg was so swollen and really bruised.

To cut a very long story short....I have spent the day in hospital because I have got a DVT in my leg.

I should be tucked up in the hospital bed right now....but J had a major meltdown when Hubby told him Mom is in hospital...he was screaming the house down, peed himself and stopped talking.

I couldn't stay in the hospital....it would take me months to get J back to where he is now. We have come on in leaps and bounds since we took him out of school and I don't want to risk losing him again to his silent world.

Doc has agreed for me to come home but I have to inject myself with Heprin and keep a very close eye on the leg and my breathing.

Doc is sure that my DVT has been caused by sleep deprivation and my body not getting enough rest.

Hubby collected me with J tonight and J was melting faster than a snowman in the Sahara. Just as we were leaving the hospital the Paed saw us and came over to say hello.....this was the first time he has ever seen J having a meltdown....he is now referring us as a matter of great urgency for J's ASD assessment and is going to try and sort out some help at home with J's sleep problems. He has said we might be able to get a Night Carer to come and stay at the house whilst we sleep...Has anyone else here heard of this service happening before?????Just one night a week where I know I can sleep all night long without having to worry J has gone down stairs and messed around with the fire/cooker would be paradise!!!!

I'm just so very gald to be back home and have plans to do nothing for the next few days but rest and sleep and give my old lumpy bumpy body a bit of a pamper.

I'm just so lucky that the DVT didnt travel....thats just to scarey to think about!!!!

Dear Jaysmum

Sorry to hear the tent isn't working. Are there other things you can try to make bed more inviting? I've got a friend whose son slept in her bed forever (she's a single mum and at the time no bf so didn't mind) but she got him a bunk bed and the problem was solved overnight. Not saying you should change his bed every 3 nights but maybe try to think ahead to the next problem night and a repertoire of things you could try to make the bed more inviting, e.g. character bedding etc. Did you try melatonin? I can't remember.
I don't want to be preachy or insensitive but I do think you would really benefit from some very strong behavioural methods. On the ODD thread you said that he doesn't understand reward for good behaviour, but that is something that he needs to be taught. You can't let a child, whatever their disorder/condition, run your lives like this, now you have been ill it shows that it can't just go on. Is there any support locally from the CDC or behavioural psychologist? I really, really, think you should look into it. It would be harder at first but if you see it throught it would be well worth it in the long run. It is for his own good too, how can he hope to function as he gets older if he controls everthing and everyone by getting upset?
Sorry if saying this pisses you off, you've got more than enough on your plate, but I just can't see how you can carry on with things as they are. Even medication for the short term would be worth investigating (for him, not you!).

Sorry to hear about the DVT, Jaysmum- sounds really scary. Jay's sleep situation sounds utterly desperate too. I do agree with Davros that a behavioural psychologist might be able to help. Sounds like he might need a very structured, last resort type programme to help you all get a good night's sleep. Have you read this book? Might be worth a look as it has some excellent ideas, IMO. Sometimes the input of someone like a behavioural psychologist or psychological social worker can help when you're looking at setting up sleep programmes though. I know I would need help if I were in your situation, for example, because I find introducing routines/structure into my kids' lives (and my own life!) really tough. Hope things improve for you one way or another and asap.

Davros...Thanks for your concerns.....Hubby and I are both very "firm" in our approaches to J. We totally understand that routine and firm boundaries are essential in the lives of a child with ASD. At no time at all do we allow J's behaviour to be gotten away with...we can tell the difference between real "naughty" behaviour, which we know is a learned behaviour, and his behaviours related to his ASD.
We have a really good CPN who comes out to the house to see us and even she is at her wits end with trying to help us solve J's sleeping problems.
J just does not "get" the idea of a star chart...he is not excited about being rewarded for his good behaviour by getting a shiny star put on the wall in the kitchen...however he does look forward to his Friday night treat....watching his favourite DVD....so that's what we use as a bargaining ploy and as a reward for good behaviour....also removing his right to the DVD for "naughty" behaviour.
On the medication front.....Melatonin just doesn't work anymore....J has an adverse reaction to Pheregen and similar drugs which are used to induce sleep...he becomes Hyper...the same with a GA.
We are seeing the doc next week about attending a Sleep Clinic....this is where they measure the brain activity at night and can hopefully sort out what is making J have such unsettled nights. He finally collapsed in a heap at 3.25am this morning and slept through til 8.30am.
The worst thing is that he apologises for waking up and gets in such a tizz about it....I know I'm not the only Mom out there who is having this problem...a friends son, with Aspergers, is now 12 and he survives on about 4 hours sleep a night.
I know that when the summer comes it will be a different story. J always sleeps right through the night then. I really think he wakes and because of the dark mornings he is unsure what time of the day it is. I have tried drawing a picture of a clock showing the time in the morning when he should get up, so he can "see" when it's morning, by matching the picture to his clock on the wall. Only problem is that when its 7.30 pm he matches the picture and says it's morning...so thinks he shouldn't be in bed!!!!
I'll get there in the end.

This is probably a bit facile but you couldn't have some kind of electric timer to switch the light on in the morning could you? They must exist because people use them to deter burglars. It's just what you said about Jay sleeping in the summer- could he learn that the light coming on means it's time to wake up but if it's dark he stays in bed, do you think? Maybe one of those lights that are used to simulate daylight for people with SAD even?

Well Jaysmum, you're well ahead on all the things that you could do. One idea I use and a friend thinks is good and is going to try, use a digital clock in the bedroom. We have one from Habitat that is very simple, just large numbers that can been seen in the dark. It is set to 24hr clock so it only says, for instance "7" in the morning. I was going to photograph it for DS to learn to match to the right number but he seems to have got it and gets up almost always around 7am. If I have to go in at night I just say "its too early to get up, wait for 7". I am going to change it by an hour at the weekends so he still looks for 7 but its really 8!
Did you think about looking into Risperidone? I ask mostly because its main function is to reduce anxiety and maybe he does have some anxiety? The great side effect is better sleep as I said before. It seems to be quite commonly used now.
I know what you mean with star charts, DS isn't remotely interested in a sticker at the dentist etc. DVD or anything else he likes is more effective then but its hard not to spoil their enjoyment of something by associating it with conditions, a tricky path to tread!
Good luck with the things you have planned and let us know how it all goes. Sorry to have tried to teach you to suck eggs!

Davros....please don't think your teaching me to suck eggs...you have always been a great help to me and I appreciate it so much...I am going to talk with the GP about the Risperidone...I think it would help J a lot as he is very anxious about many things...people thinking he is different, sleep (obviously) and leaving the house!!!This is something that is causing me concern because since we took him out of school he is becoming so very dependant on me....he told my neighbour (who incidently works for NAS at one of their residential units) that I am the only person in the whole world who really understands him....nice to know that he trusts me, but I am getting worried about how dependant he is becoming on me being around 24/7....hence my inability to stay at the hospital!!!!
J really does not like going out anywhere...if he could stay in the confines of our home forever he would be happy....this obviously can not and will not happen because I want my son to grow into an independent adult who is socially accepted.Trying to get J to leave the house is a battle in itself....but I work hard at making sure he experiences life to the full and has access to as many different life situations as possible. I will not allow ASD to be his prison.

What a good idea Tamum...I have got a timer....so will use it tonight in his room....he has a Sensory Light that he has on to help with the falling asleep....maybe I could set the timer to switch it on and tell him that when the light comes back on it's time to get up....anything is worth a try.

S Mummy....I read that book about 12 months ago....I'll get it out of the library again and have another read.Thanks for reminding me of it.

Thanks for your ideas they are always very welcome.

Whether you decide to try Risperidone or not, it seems that maybe the anxiety is a key factor. He sounds very like a friend of mine's DS, very capable with good language (tho not communication), quite clever etc but it got harder and harder to get him to school. He just wanted to stay at home with his mum and his computer and pretty much did that for ages.
Hope all goes well with the Drs appt and sleep clinic etc.

Tried the timer last night and again he slept right through.....Bliss.
I will crack this sleep routine.
Hubby spent two hours down on the beach yesterday afternoon with J and when they came home he was exhausted....will do the same again today and use the light timer....fingers crossed.