Monday, 13 September 2010

Sleep Deprivation

Sleep deprivation has been used in wars and terrorism as a form of torture to force victims to disclose information. Sleep is a stronger basic need than food and water. Simply, the human body cannot do without sleep.

Unless you are C.

C’s life is an endless wave of transformation and I never know what’s coming next.

C has never been a long sleeper. 4 hours if I am lucky. But for nearly 6 months now when home he has not been sleeping AT ALL

Apparently there is a connection between lack of sleep and the following characteristics in some autistic people. But I think this list explains me and my sleep deprivation! I can’t see any difference in C.

• aggression
• depression
• hyperactivity
• increased behavioural problems
• irritability
• poor learning and cognitive performance

I feel my brain has been kidnapped. I feel desperately tired, lonely and often totally emotionally overwhelmed, a loss of identity as he uses me as an object.
Not knowing which level of consciousness or planet I am on especially around the 3am void on the 3rd night
Like the universe I need some Duct tape to hold me together.

So for understanding (and C enlightenment!) I research. But sometimes I have to accept I won’t always find answers.
Here are some of the things I have looked into over the years and more recently..
Medication side effects
Health issues
White Noise
Black out blinds
Lots of exercise
Diet i.e. cut out any stimulants later in the day (but the logic of healthy eating for me when tired goes out the window!!)
Colour therapy = colour of his bedroom
Lighting
Good routine – established over years
Aromatherapy bath
Massage
Weighted blanket
Looked at his bed as he was throwing his mattress down the stairs
ie Beds for autism
Or Water beds!
Bed socks!
Personalised Hypnotherapy CD

I looked at Cs environment from both his and my point of view, to make his room safe for my peace of mind. Soft play walls, easy clean floor. Bullet proof windows.

And recently I have pulled up the stair carpet and painted a stair runner as in the words of Mason the Chimp from Madagascar who says it so eloquently. It wasn’t just the mattress that was being flung down the stairs.

I tried supplements like Melatonin, herbal and homeopathic remedies. Badger balm to Camomile tea (cooled and squash added) etc.. but no affect.

I had to rethink.

So if none of this works and as all behaviour is for a reason....

It usually boils down to one of these
Attention
Escape from demand
Escape from attention
Tangible
Sensory

As not being able to speak does not mean C has nothing to say.
So what is he trying to tell me??

“If you want to change the other persons' behaviour, a good beginning might be to start seeing things from their perspective”

C is 21. 21 year olds go out clubbing all night. OK so they then sleep all day and Cs not doing that.

It’s his choice!? Who am I to say he HAS to sleep?!

We often wrongly assume others needs are the same as ours.

So I have to put aside my own needs and expectations of my ultimate desire of a night’s sleep as I realise after months – this is not Cs goal.

Or another theory

When C’s away he’s worked hard at making sense of chaotic sensory experiences and then can’t switch off when he comes home. He needs the down time to process and doesn’t sleep instead he is engrossed in repetitive behaviour (which I won’t go into) lowering his stress levels and exerting control. This has now become a cycle - an unstoppable loop.

So I need to look at ways to change the routine and break the loop.

I bring him home by different routes. I change what and when he eats, what he is watching etc These things don’t work

I use Cs repetitive behaviour to ‘talk’ to him. I copy him so I’m not overloading him with my stuff, I am validating C as a person in his own right. I am trying to get him to engage with me and not just himself. I stim, sharing sensory sensations, I squeak, orienteering myself to our common language, I talk Shyriiwook (the neighbours must think there is a Wookiee convention!)
Every movement, flick, tap, hit, rhythm, sound is an expression of feeling, letting me glimpse into C’s inner world. Deepening trust, reducing anxiety and gaining self confidence. Relating.

This is the behaviour I changed – mine.
I stopped doing this in the evening. I stopped engaging – talking to him, looking at him. And its working - slowly (hope I’m not speaking too soon!). He’s stopped exerting his control over me by literally physically holding me hostage. He’s still not sleeping mind you but happily babbles to himself which I can sort of doze through. Only the odd thing flies down the stairs. And I can try and catch up on my sleep when he is not there!

You would then think I would sleep for England but I don’t. My mental Tardis is on over drive and I can’t turn my radar ears off. So I am now using all the alternative stuff I tried on C to help myself so I can stock up on sleep before the next round.

Well that’s my theory! That’s my Duct tape – and I’m 'sticking' to it for now (with copious amounts of coffee!)

What have you tried?

41 comments:

Nicole said...

The CPAP machine (for people with sleep apnea) helped my husband get some quality sleep--even though neither of us probably get an optimal amount of sleep. The machine has made an amazing difference for my husband. Here in the US the state can revoke a person's driver's license if they have untreated or untreatable sleep apnea (severe sleep depravation)?

We have a 6 and a half yr old with non-verbal autism. Fortunately, melatonin works for him but I'd rather not give it to him long-term.

Ro said...

Wrapping ourselves around Aspie teen when he was little.
Heavy blankets, radio on barely above a whisper, sometimes letting him climb up the tree when he's raging,warm baths, hot chocolate, percussion therapy (patting his back gently) humming in a monotone,and a bajillion other things I can't remember now but anything that popped into our heads!

Maddy said...

I just keep seeing that '21' bit. I can only cope with these phases for the few days that they last [sometimes back to back for both the boys but more usually there's a gap inbetween]

I have a bottle of Melatonin ready for next time - hoping it's not too soon.

I can't even imagine existing for longer. [hugs]

Mrs. C said...

Ohhh... Casdok, I'm not sure how you do it. You're admirable for trying to see things from his perspective, but you're a person with needs as well.

Woodjie is three and sleeps a bit oddly. He falls asleep on the couch (refuses any other place), is brought upstairs to his toddler bed and sleeps there a bit. Then he climbs out of that with his blanket and pillow and Woodjie doll and into Emperor's bed. Sometimes in the night he will sneak around and find toys. He isn't eating toys anymore so that's not a safety issue so much.

Can C sort of tell time? Does this happen just before he needs to go back to the facility he lives in? Or when he first gets out? Or is it consistent every day?

I'm imagining you have a ton of stuff for him to do whilst you are dozing. I have safety gates all over even though Woodjie can climb them in a jump... they're just really "reminders" for him at this point.

Interested to see other comments...!

Green Girl in Wisconsin said...

sleep deprivation is a horrible thing--I can't imagine the stress you both experience, in different ways. I'm going to pray for you and thank God for good sleepers at my house.

Warty Mammal said...

You poor dear.

Is there anyone both you and C are comfortable with who can come and sit quietly now and then, so you can grab a couple of hours of sleep? I suppose that could stimulate him, though.

Akelamalu said...

You must be exhausted! I hope you find a solution soon for your health's sake. x

Shrinky said...

Sam would sleep, but wake up and roam at least once every hour at night - thankfully, he was easy enough to re-settle again, until the next hour passed. Hubby finally moved a mattress into his room, and slept there for several years (I had three other babies, two younger than him, to cope with). I doubt I would have survived without a supportive partner to share the load. Now he sleeps through the night completely (but gets up at 5am). I honestly have no idea how you cope - I hope things improve. (Hugs)

Julie L. said...

I like how you are communicating with him on his terms. You really do try to see the world through his twenty-one year old eyes...noting age and other things that might be going on in his mind.

It does sound like he might be still adjusting to his new living arrangement and he's probably still changing physically as well because men can develop into their twenties. Yep, they do tend to stay up at all hours at that age!!!

Wish we could tranfer some of C's energy to you. I can empathize with the lack of sleep because I seem to need a lot of it. I agree that it would be good if you could bring someone in to help you get some more rest, if C would accept it.

Looking for Blue Sky said...

I'm exhausted today after 3 difficult nights, so i have no idea how you are managing, or how you manage to think so clearly and compassionately on so little sleep. I do not understand how anyone can manage on no sleep at all, that shouldn't be possible. I hope that you find a solution soon for C or something that will help you to sleep when you can x

jazzygal said...

Oh good God Casdok! I don't know how you do it. I'm like a bear when I miss one night's sleep. When WiiBoy was younger I didn't sleep much for about 5 years. I'm lucky, he eventually did start sleeping throught the night. It tooke me another 2 years to change my sleep patterns back!

I was fascinated how you analysed the situation with C and changed your behaviours.

I do hope you get to stock up on your sleep.

xx Jazzy

TherExtras said...

You about covered it - nothing more known to me. Looks like you are almost there. Barbara

Ron said...

You amaze me, dear lady...TOTALLY amaze me!

And of all this you figured out on your own!

"I use Cs repetitive behaviour to ‘talk’ to him. I copy him so I’m not overloading him with my stuff, I am validating C as a person in his own right."

Brilliant!

I bet one day you'll be teaching other parents all the things you're learning for yourself and C.

Bless you dear lady!

Much X to you and C!

Leslie: said...

Gee, it's been a while, hasn't it? I'm so glad you popped over as now I can "follow" you again. My old laptop crashed and I lost almost everyone!
I just can't imagine how you cope. Lorne can't sleep because of his chemo, but he sleeps in another room now (I snore, too) so he can catch a few winks if he can. But I can't sleep, either, because of the stress and I know how that affects ME! I'm sure C is overtired at times and that also contributes to poor sleep patterns, but it sounds like you're onto some good ideas. When does he go back to school?

Cheri said...

C probably has the same problem getting sleep when he visits as you have when he leaves. I agree with Julie that he is still adjusting to the changes in his life. My son continues to struggle with sleep - sometimes getting too little and sometimes getting too much. Either way he can be hard to get along with. Of course when I don't get enough sleep I'm no joy either! ;)

Tanya @ TeenAutism said...

Oh, my dear, I feel for you. Sleep deprivation is the worst. Nigel used to be a poor sleeper when he was younger, but I am very blessed that as a teen he is needing more sleep. Thinking of you and hoping you (and C) get some relief soon! xo

Debs said...

I can't begin to imagine how exhausted and drained you must be. I can do with fairly little sleep, but one night (yes, only the one, last night) with my dog being sick every hour has left me feeling what I thought was exhausted. Having now read your post, I realize I'm merely a little tired.

Hugs to you. I'd love to be able to offer some useful words.

Casdok said...

Mrs C
C's body clock is usualy spot on! And its every day.

Warty Mammal
Thought about this but wouldnt work.

Looking for blue sky
11 days is the world record!

Thank you Ron :)

Leslie
Its been 2 years now since C left school!

farmwifetwo said...

We use the melatonin - one 3mg tablet - to get our 8yr old to sleep. Just calms the stim enough. If it's before 4am I try a second which sometimes works, sometimes not. After 4am it's the computer or Nintendo in their school/playroom and I dose on the sofa.

You can fix his bed before midnight... don't go near him after it or he'll wake up.

starrlife said...

I know I can't sleep for at least two nights adjusting to new beds and surroundings (even if familiar). I wonder if he's so happy to see you he won't let you out of his sight? I agree with the you're brilliant part.

r.b. said...

You changed, and things got better. That's a good pattern to follow...in my heart I always knew that I was part of the problem for so many "behaviors" for Ben. When I changed, like a miracle, he got better.

More than likely, I think Ben picked up on my anxiety.

"C" loves you, and is probably picking up on yours.

Maybe if YOU relaxed, he would too.

Just a guess...

PS---Ben always did need less sleep than I did, from about age 8.

r.b. said...

I just want to make sure you know...I "ain't" judging you.

Please, please let us know when you figure it out, because it sounds like you are on the way there!

Casdok said...

No worrie r.b. Your very right, C does pick up on both staff and my anxieties. I learnt this sometime ago and feel i can hide this from C, but as his staff are still fairly new they are still learning.
In time will get there - and when/if i do figure it out i will let you know :)

Maggie May said...

Nothing worse than a sleepless night.
I find listening to talk radio lulls me to sleep. I do seem to wake early though and cannot get back to sleep.

It must be awful for C not to be able to communicate properly.You sound like such a wonderful mum doing everything to help him in every way.
Maggie X

Nuts in May

Paulene Angela said...

Does C have an excess of physical or mental energy or both? Would he enjoy a static bike or a running machine? Why am I now thinking of that great movie Forest Gump.

Great post, I feel for you as I really need my sleep otherwise it's a morning with bad bear syndrome.
Px

Donnell Allan said...

I'm so glad that you stopped by my blog so that I could find yours. You are an inspiration to me! I hope you quickly find a way to meet the needs of both C and your precious self. He is very blessed to have you! (As you are to have him, I'm sure.)

DJ Kirkby said...

Goodness. I've never been a good sleeper either and am back to 4 hours a night at the most again. The only time I slept well was when I was first started on my blood pressure tablets 4 months ago, then I spet through the night, every night, for a couple of months. It was wodnerful!I hope C goes back to getting some sleep soon.

Hammie aka lisadom said...

Well they say that Margaret Thatcher only slept for 4 hours per night! (sorry !)

Grace was the same, wouldn't let me let go of her or lie down until she was 6 or 7. I had a Barker lounge so I could eventually ease backwards into it and then slowly recline if I managed to get her to sleep. We would both sleep then in the chair.
On the few occasions I got a night off I would waken like you to every noise- the mummy tiger must protect her cave!

it was behaviour meds with a sleepy side affect that got me my first bit of Kip. And I reckon a lot of the persistent wakers are in the hyper end of the spectrum too. We give respiradal late at night so she sleeps through. we had used melatonin of course but that only turns on the sleep clock it doesn't keep them asleep (we had the 4am fiesta with Grace) and they can fight it off the way a teenager fights off sleep on New Years Eve so they can keep partying.

Change the meds (as we did recently) and the side affects are lost - back to the sleep deprivation drawing board.

I have to say that Liam does not need much sleep, he goes down early now (10:30 pm!) but wakens first and in a lovely humor. Many's the morning when I have had to drag myself awake to go down stairs and clean up a litre of milk and a kilo of rice crispies. Independence has it's price!

Neither child is affected academically by their sleep patterns. They miss school if I am too tired to drive them the 60 kms - I will never take that risk. But their scores are never affected. As you say they are just wired differently and it doesn't bother them.

All I can think of for C is the fact that he always functioned on 4 hours and now he is at the end of a growth phase, he no longer needs it. My teenage nephew could stay up all hours and then sleep for Australia but on my last trip he was appearing earlier in the day, but still staying up at night. ??

Goes without saying that I send you all my empathy xx

trydefyinggravity said...

wow. My heart is with you. I've had four sleepless years (some nights better than others) and melatonin was our answer. Not the complete answer, but solved most of the night waking problems.
I'd say I don't know how you do it, but then again, I don't know how many of us do any of what we are asked to do everyday.
It's clear by the abundance of comments here that in cyberspace you aren't alone, and I hope you have this level of support in person too.
I looked at your other blog - the pictures - and it's just breathtaking. You are an amazing woman.
Stock up on duct tape, coffee and lots of love from us all.
Alysia

SeaThreePeeO said...

I understand exactly how you feel. Ana has always suffered from odd sleeping patterns.

She used to sleep trhough the night from the age of 6 weeks until 18 months. Then the sleep deprivation started and boy was it a shock. Ana has periods of time when she sleeps and can be impossible to wake and then not sleep at all.

kathleen said...

Firstly, I'm sorry for your sleep deprivation..I am close enough to the time when we were living through it to remember it well..the absolute cloudy headidness that we felt..the feeling helpless at 3 a.m. and wanting nothing more than a few solid hours..to complete one dream was an achievement..My boys would stay up for 36 hour stretches and then only take a 2 or 3 hour nap in between..my life at the time seemed endless..
I love what you said about looking at what he needs-rather than basing his needs on your own. We did something similar-after of course researching meds...tapes mood lighting..paint colors.Hell, I think that at one time we even placed crystals in their rooms!Then we found melatonin..

But-What I realize after reading this post and thinking about it was this-Night time is quiet. Really and totally quiet. All day long they are made to be in a world that at times was too noisy too stimulating...too everything.AND they are made to participate in it. At night they could finally just be.

When my kids get home from their day...I let them be. I say hi, give them a snack..and don't force conversation. One of them usually goes right onto the computer..and stims..eeeing and flapping while playing one of his games-The other rides his bike. It calms and centers them..by night time they are able to relax enough to sleep. So now I'm wondering if it has been a combination of both things that got them to sleep..or not. It has been a few years now-
and we have established a sleep pattern for both of the boys-we rarely use melatonin anymore..but we continue to let them just be-when they get home from their days...

Claire Hayes said...

Oh my...my heart goes out to you. We had a similar situation with my ASD daughter when she hit 15...all those wonderful suggestions that can work (like melatonin), had no effect whatsoever...Finally, what sorted it was a diagnosis of almost constant partial seizures that came in with hormonal changes...when she got the seizure medecine, she began to sleep again. So my question is- you have tried so much- could there be a medical reason associated with his age (boys developing later than girls) that might be responsible? Keep us informed....with very best wishes

Ellee Seymour said...

My heart is with you too. Sleep deprivation is so difficult to cope with. One night I might manage, but more that leaves me feeling like a zombie.

Kristina Hughes said...

Lots of respect to you, Casdok. Sleep deprivation is torture and I really hope you and C find a solution. You sound like an amazing mum - I'm sure you never signed up for sainthood and all the difficulties and joys that come with it, but you certainly seem to be doing a wonderful job.

Remember YOU, though - if at all possible xx

kathleen said...

Hi-I tagged you in a blogpost. :) As one of my favorite bloggers.

The author said...

It's interesting that my lack of anything like a normal sleep pattern that was no doubt the bane of my mum's life when I was small, became a blessing in disguise eventually as I had no problem being up in the night, when she too slept little because of her impairments and needed attention during the night.

I have recorded myself as having gone 30 hours without sleep before, and maybe longer when I was younger, that's not bad going considering it is supposed to be so bad for you, but then maybe it is only bad for people who do have regular rythms, those of us who do not have never really been investigated.

Donnell Allan said...

The Author, your comment reminded me of this Ted talk I watched recently:http://www.ted.com/talks/jessa_gamble_how_to_sleep.html

Very eye-opening. (Couldn't resist the pun.) It's made me re-evaluate who is "normal" in our family and who is not.

okasaneko said...

I completely empathize. Alphonse has been getting a lot of bad nights of late and even with his usual medications, seems to shrug off drowsiness with ease. (We never used to have problems with sleep.) His parents, however, are a wreck on the nights when he can't sleep. We dont't have stuff flying down stairs but he does like to roam the house, raid the refrigerator at 3 am, or rip books he finds lying around. I wish I could sleep through his wakeful episodes but I am forever mindful he will get into some nasty scrape, hurt himself, or destroy something umportant.
The good thing is he does respond to lots of exercise (lots!) and when he is tired, is more open to the suggestion of sleep. Each night he sleeps is a blessing, and for the nights he doesn't, well, let's just say 24-hour cable tv is a blessing.

frogpondsrock said...

You know Casdok, yours was one of the first blogs I started reading 3 years ago and I learned a lot about autism from you.I never thought that I would be dealing with austism within my own family. The Ehlers Danlos Syndrome was enough for me to cope with. I enjoyed reading your blog because it gave me an insight and empathy for my friends with autistic children.
Now my 4 year old grand daughter has Aspergers and it looks like my 20 month old grandson is autistic as well.
So this post resonates loudly with me. Thankyou

Mistress B said...

Sleep deprivation is a very cruel form of torture. I hope you get it sorted soon (hugs)

Kelley @ magnetoboldtoo said...

Boo goes through stages of sleeplessness. I think it may be hormonal.

God help me when he hits puberty!

I think we are lucky that I realised early on that he was going to be a non sleeper and I was able to set the rules early before the behaivours were ingrained. He is allowed to stay awake but he MUST stay in his room unless he needs to use the toilet. And he pretty much sticks to it. At least then I can get a light sleep as his room is next to mine.

Sorry I haven't been around much babe.