The worst thing about being a parent of an autistic child

[Lynden]

I really hate when he wakes up screaming in the middle of the night :-( Is he having night terrors? Is he crying with pain? Seems like he could be but if he is - where is the pain and how can I help make it better??

 

I feel so hopeless and helpless when that happens.

 

Lynne

 

PS - after about an hour of unconsolable crying he is sat next to me watching Ice Age happy as larry so we're up now prob for the day!

[Frangipani]

Posting this as I can see you're still on line.

 

<'> <'> <'>

 

Things will get better hun, over time. They say warm milk with vanilla essence calms the nerves and will help you both back to sleep, snuggle up together with soft volume on that movie, and hopefully soon you will be sleeping. Sleep is the key, maybe visit your GP many parents found "Melatonin' works for their kids. Check the links on meds.

 

 

Lynne, you're a wonderful mum <'> <'>

 

Hope this helps.

 

love

Fran

 

N.B. People may say 'Fran' your back 'no' just this once. Other priorities at present. But hello, and hugs to you all as always <'> <'> <'>

 

love

 

Fran xx

Edited March 21, 2008 by Frangipani

[Lynden]

Hi Fran

 

Thanks for the hugs - I appreciate you coming back just this once!

 

We've tried melatonin with no success unfortunately - next step was sedation and I dont want to go down that route because its drugging him so I can get sleep and not him as he obviously doesn't need it. We're just living in hope that he eventually we can still be in bed and he can be in his room doing his own thing!

 

Lynne x

[stressedmumto2]

Hi, I remember that feeling all too well and in our case melatonin did work a treat for us. Hopefully being in your bed you may off both drifted back off too sleep. Why don't you try the melatonin again, he may of needed a slightly higher dose to what you tried the first time around and it's so beneficial for you to be able to get a good night's sleep too.

 

Also have you looked into weighted blankets? my son has one and since the use of it we have cut down on his melatonin and it's been working a treat. I know it may not help with the night terrors if that's what's going on but it could be worth a try.

 

Take care and sending you hugs <'> <'>

[Kathrynh]

I'm very lucky cos B does now generally sleep very well. But he does sometimes wake up in a real state screaming and crying and I assume he is having a nightmare. He gets very violent towards me when this happens, biting, kicking and scratching. I just sort of wrap myself round him cuddling him using the quilt to help control his ams and legs a bit like wrapping a cat for the vet!! After a while he will calm down and go back to sleep and seems to have no memory of it happening.

[sesley]

can you get him to talk about his dreams? are there any particularly stressful challenges in the day, at school,nursery anything that he can't put into words and is dreaming of at night and getting even more stress?is this every night and is he putting the soothing strategedy of the video on reglular? The Iceberg vision is what Earlybird spoke of, on the surface there is a problem showing, so why? what is it? try to look under the surface and see what the big problem is causing so much stress on top.If you can?

[Lynden]

Thanks all

 

StressedMum - we tried various doses of melatonin with no success - I think because as a rule Logan has no problems getting to sleep, its staying asleep, which melatonin doesn't help with.

 

Sesley - can't get him to talk about his dreams as he's non verbal and not at the stage with PECS where he could communicate at even close to that level. He's not at anymore stress at school or home. Its not a regular thing thankfully - the early waking is, but the crying inconsolably isn't.

 

Because he has hypotonia and hypermobile joints, I do often wonder if he has pains in his legs as I know several older children who have to take painnkillers most nights for this.

 

Hopefully we'll have a better night tonight!

 

Lynne x

[Cariad]

Lynden T does this, we are very sleep deprived. We have gone back to melatonin and a sleep routine via the help from a psychologist which helps. He is still a sleep dodger and does get up anything from 6am even if he has taken hours to get himself to sleep.

[oxgirl]

Lynden, this must be so hard for you. <'> <'> <'>

 

~ Mel ~

[elun1]

Hi Lynne

sorry I'm so late in replying to this but havent been on here recently as we've been ill with horrible sick bug thing.

O is 6 now, 7 in April and he sounds quite similar to Logan in lots of ways. I think Logan is about 5 and a half. Well at that age O was very similar. Often went to sleep late although no terrible settling problems. An average nights sleep would be about 11pm til 4/5 am (on a decent night) At other times (he seemed to go through cycles of this) he's fall asleep about the same time but wake screaming at any time between 1am and 4am. He rarely slept again that night and I'd be up from then too. Barnardos have given us overnight respite and this has made a huge difference to my ability to cope (sometimes!) and to my other childs life as O often wakes him. He is VERY noisy!! dh works a lot of night shifts so isnt here much. Anyway, from around Logan's age he has very very gradually improved. An average nights sleep is now settling anytime between 9pm and 11pm (usually somewhere in between) and he will wake anytime between 4am and 6am. It isnt great but it's bearable. I also let him play on his laptop for an hour within my earshot which I suppose isnt recommended parenting but most of the people who wrote those books havent been sleep deprived for 6 years!! It's a matter of survival!

Good luck - I know how hard it is, like you say he doesnt actually have a sleep problem as he has had sleep but YOU need more. Do you get chance for a sleep in the day ever? Im a teacher 3 days a week but on the days I'm not at school I often grab an hours sleep and that can really help

Take care, Elun xxx <'>

[jb1964]

I really hate when he wakes up screaming in the middle of the night :-( Is he having night terrors? Is he crying with pain? Seems like he could be but if he is - where is the pain and how can I help make it better??

 

Hi Lynne,

 

Only just read this - I know it's so difficult to help when you don't know what's wrong... although I just wondered when you say he wakes up crying is he alert to you? - if you know what I mean (I know you say he's non-verbal) - my daughter used to wake up lots in the night crying out but I could never get her to look at me or communicate with me and eventually after about an hour she'd settle back down to sleep - I always thought she was having some sort of nightmare but not so sure now...

 

Take care,

Jb

Edited March 23, 2008 by jb1964

[LizK]

<'> <'> <'>

 

That sounds so hard. Adam wakes more at night now often in a state and even though he's verbal can still be difficult to fathom out what the problem is especially if it's a bad dream. Even if I do it can be something that would never have crossed my mind. He's currently scared of the "dark in his eyes" and all the night lights in the world won't help it stop being dark when he closes his eyes

 

Anyway enough of me! Hope you are having a few better ones. If he's in pain does dosing him with ibuprofen or paracetamol help?

 

Lx

[ellisisamazing]

I feel the same way as you do, Lynden.....Ellis also being non verbal means I am constantly trying to guess what the problems and upsets are about and nine times out of ten I have no idea and no way of finding out.....very upsetting as a Mum and I do feel terrible about the communication barrier..but it's one them things you just have to deal with isn't it....I'd do anything for Ellis to speak, I would love to hear his voice...

 

One Day hopefully! For you and me both!

Edited March 24, 2008 by ellisisamazing

[JsMum]

Are you using any picture communication? also have you thought about looking into sleep clinics that can look at his routine and maybe observe him to determin what it is that wakes him out of his sleep. they may also have further advice with ways to help your son in the night communicate.

 

J gets nighterrors the most and looking back I know Js were really bad when he started to really start to use his imagination that went wild with monsters ect... may be the picture cards could have something that could be the reason he is screaming, its a monster mummy or I am scared mummy, just so he can begin to communicate with you, another reason J would get distress was growing pains, his really hurt him, that much he cries, so maybe it could be this.

 

Looking into how to treat nighterrors also may help too, the sleep clinic will have more information on this.

 

May be look into playtherapy too, as this will help him express his feelings, and maybe some activities that doesnt rely on verbal, so dancing, music, drama, so he is getting the opportunity to be expressive in other areas.

 

It sounds like nightterrors from Js experience and they are very scarey, add on not been able to communicate and the intensity will be very intence and a total panic so thats why I thinking of other ways for him to communicate and express add on the sleep deprevation and it will be very difficult to keep things in control, J is verbal but he doesnt express very well, his language is effected and if he is upset or in pain this will be even worse.

 

Sleep clinincs are around the country and a GPs referral is needed.

 

Good luck, I know that for us Melatonin was the beginning for us because we where able to get some sleep and that has made a difference, that is when he takes it.

 

JsMum