new here & worries about sleep patterns

[patrick w]

Hello, i did post here about a year ago, but am one of those go it alone types.... keep things that get me in the heart very close..getting better at being with the vunerability though..

 

I have a 13 /14 year old son who has Aspergers. He lives with me, (seperated from Mum), but has a good relationship with his mum (as do i).. ... He hasnt been to school for about 3 or 4 years..gave up on tutors about 3 years ago.. but he is absoultely grannite- like in his opinions...shockingly clever..basically school is off the menu.. I am sort of ok with this..he had a terrible time at school..mainstream and specialist, and it was too much pressure.... Most importantly , he is passionate about many things... What worries me at the moment is that he has developed a bad sleeping pattern..he stays up most of the night and gets up at lunchtime... and he got mugged about a year ago and doesnt go out much and never by himself..He says he is ok and feels as ok as normal, but it really worries me..does anyone recognise this pattern?

 

 

 

 

Patrick

Edited May 14, 2006 by patrick w

[rainbow queen]

hi there

just giving you a big welcome to the forum

lots of help and support here you will find <'> <'> <'>

 

my son is nearly 5 -so i have no advice for your probs at mo with your son being older but they will be others who will reply to u soon who have children of same age as you .

 

take care <'>

[barefoot wend]

patrick w

 

Can certainly empathise with parts of your post. My son is 14 and has been off school for 8 months as was struggling to cope with demands of education system. He also has erratic sleep patterns which have intensified in adolescence. I think this is a common problem- my Dad had AS and I remember as kids we often used to all get up in the night and have a communal tea-drinking session - I was pretty surprised as I grew up to discover that most households stayed in bed all night. I'm afraid I can't offer a miracle solution although I find my son does seem to be in a much better frame of mind if I allow him to determine his own body clock. Inevitably this means he is up much of the night - which I don't mind so long as he's quiet. Occasionally I ask him to go to bed if I happen to wake in the early hours and he's still up and he usually concurs. He sleeps in late and often has a nap during the day. It can be a pain sometimes but at least when he's around he's fairly bright, alert and communicative - which is better than before.

 

I know some children take melatonin to help with sleep - there are a few threads on here about this.

 

With regard to the outbursts, we now give my son risperidone (Risperdal) which helps. There are also lots of posts here on that if you want to read up on it. It's hard to be a sole carer.

 

Barefoot

[patrick w]

Thank you... I dont mind his sleep patterns..and in a simialr way, he does seem more settled... i just wanted to see if it was common (which i suspect it is), so i can relax a bit..... I dont mind the outburts..they are a thousand times better than they were when he became school phobic... and i understand their struture..(his mum used to call ambulances and i would have to try and get the whole thing calmed down as it freaked him out more).... he also has worked very well with it , he has told me how bad it feels to feel so angry, and often after an outburst will come through and say sorry and talk a bit... i dont know many adults who would do that.... me included probably.. i just worry for him of-course, like all of us..for his future and his happiness... feel i'm just making it up half the time... i had a bad history of depression (25 years) , which incredibly i have beaten...but somedays it is hard to keep bouncing back in a positive mannar.... letting go is so hard i find.

 

My experience of school situations is that it can work both ways.. For Felix it was a disaster from the begining of reception.. and personally i am glad he does not have to be put under such awful pressure..although others can handle it i am sure , and benefit from school..the structure, routine etc... I dont worry for his mind...it is amazing..i worry about his loneliness..he has 2 freinds , but only really sees one... he is older and is very patient and understanding of Felix's social blindness..still takes my constant brokering and mediating though...... He uses the internet as a main source of company..... really into his music and obscure horror films.... I think he would like to meet a like-minded and music-orientated friend though.. i have to like what he likes (of-course.. the "i'm a seperate person" stand is very well used in my home), and luckily we have tons of music, films and humour in common..but i'm his dad etc etc.

(Sorry , seemed to have gone of a bit there....actually, i realise that i never speak to anyone about this stuff, and i could suddenly talk all day!!!....but wont>>>)

Edited April 20, 2006 by patrick w

[barefoot wend]

Hey, go on as long as you like - we're good listeners.

[oracle]

Hi Patrick

 

I hope this reply actually makes it onto the group my last attempt went AWOL

 

My son David now 18, crashed out of the system, literally as he was hit by a car, when he was 11. We did have a tutor for a short time but he became so distressed by her that he ran upstairs to get out of her way and broke his arm We gave up and home educated. A great deal of your post sound soooo much like my David. David's sleep pattern has been shot to pieces since he was 11 years old. We tried everything and then gave up. As we now home ed both David and our youngest Matthew 9 and also autistic we have adopted a lifestyle, which suits us. It's a bit like? it suits the wear and not the starer? If it?s OK for you and not disrupting your life too much then why worry? David hates to sleep while everyone else is asleep. He feels that there is no one left in control. Hope that makes sense? But he can change his routine when he needs to so I try not to worry too much.

 

There are a great many positives in your post that I would personally nurture. His cartoons could end up making him mega bucks and you don?t need to work in an office to draw them. Likewise his music abilities. He could teach guitar from his own sitting room or workspace. My son like yours is very clever, with David it?s computers, but sadly he now has yet another dx ? not related to the autism- which is probably going to result in a double cornea transplant.

 

David also has the social life, which is right for him. He often goes out with his brother now and it?s just as acceptable for Dad?s and Lad?s to have a night out. But it does look strange when a big lad has a night out with his Mum. So you have an advantage there to.

 

I suspect that we are the Tom and Barbara Good of the Autism World as in we grew our own lifestyle ? but it works for us.

 

Carole

[annie]

Hi Patrick,

 

My son Alex, who is 16 now, sounds very similar to your son. Alex has never fitted into school from day one. At the moment he is receiving Education Other Than At School, which is working out very well.

 

Alex has never slept well. We have been down the medication route and even tried a sleep study, but sleeping in still a problem. It doesn't matter what time he goes to bed, he will still not go to sleep until about 2am. Just recently he has started waking up earlier in the morning (9.30am), which for him is brilliant. It used to be any time between 11 and 1 in the afternoon. Alex will stay in his room and watch a DVD, play PS2, more or less do what he wants, but the rule is that he has to stay in his room. Like Carole has said, it's not really disrupting us, so why worry.

 

As for the lashing out, Alex still has a huge hole in his bedroom wall, which is covered over with a poster. I have to say though, that since taking him out of school, we haven't had anything else broken through anger. His bedroom door did fall off recently, but that was because he is very heavy handed.

 

One thing that was suggested to Alex to help him off-load his anger, was to write raps. He's into music in a big way too. I feel that this has helped Alex a lot. Perhaps your son, could express himself through writing lyrics about his feelings.

 

Annie

<'>

[Tez]

Hi Patrick,

 

I'm another one with a teenage son with the same problems, he's 14. A usually goes to sleep about 6 in the morning and wakes up about lunch time. This is fine with me, since we have allowed him to develop his own sleep pattern and taken him out of school (did this a year ago) his tics have completely disappeared as have the bleeding sores that he used to have on his body caused by scratching his eczema, the eczema has gone as well. Had an appointment with his Consultant today and she agreed if his natural sleep pattern is 6 in the morning to mid day then let it happen and work around it (it's not broke so don't fix it), it's no longer a 9 to 5 world.

 

A spends most of his time in his bedroom playing on his computer or play station. He's built his own web site and forum and he trains new recruits in the games that he plays. He's happy like this and doesn't need to interact with the world on any terms other than his own, which is currently arms length via the computer. I am a little concerned that he never willingly goes beyond our front door but I haven't seen him this happy and well in years so I'm certainly not going to force him into a situation he doesn't feel able to cope with, he measures himself and I know when he wants to do more he will. I know others worry about him being socially isolated, but he does have some good friends who visit him, but often he doesn't even want their company, he's not lonely, he's only lonely when he's forced into situations where he's expected to socialise like school.

 

I suppose what I'm saying is that your son's situation is remarkably similiar to ours and many others. If you're happy, and he's happy that's all that matters, even if it is a life style that's others don't understand and frown upon.

[Mummy21]

Hi Patrick, Welcome......... I wouldn't worry about rambling the more we know the more we can help........ or at least try too.

 

My son is 8 and we are waiting for DX for Asperger's, his sleep pattern is poor he will stay up to 10-11pm and be up at 6.30am most mornings, he doesn't seem to need much sleep at all.... I don't mind him being awake as long as he is resting...... he lays in bed light off telling stories to his teddies.........

 

What I was thinking reading all the posts is that the children who are staying up till early hours are not at school at the moment, do you think they are staying up that late because their logic would be its not vital for them to be up early......... if J is up i say try to sleep you have school, or at weekends we might be going somewhere early, but if its a day where we are going nowhere he just says why have I got to sleep I am not going anywhere tomorrow........

 

Joanne xxx

[Suze]

Just wanted to say hello and I really like the name Felix .Please take some time out for yourself Patrick, don,t get to swallowed up by the autism/aspergers .Sounds like your a great dad <'> .Suzex

[justamom]

What I was thinking reading all the posts is that the children who are staying up till early hours are not at school at the moment, do you think they are staying up that late because their logic would be its not vital for them to be up early......... if J is up i say try to sleep you have school, or at weekends we might be going somewhere early, but if its a day where we are going nowhere he just says why have I got to sleep I am not going anywhere tomorrow........

 

Joanne xxx

 

 

Hi there, Mummy21 - my son is at school and he goes to bed really late at night. Sometimes i cant even tell you what time he does eventually drop off, sometimes its around 1.30. But on week-ends he does stay up even longer knowing that he does not have to get up early for school.

 

We also have the rule that if he cant sleep and is playing playstation/watching dvd's then he must stay in his room.

 

Justamom

[Kathryn]

Hi Patrick and welcome You can talk as much as you like here!

 

My daughter (17) has a very similar sleep pattern. Left to her own devices she'll stay awake till 2 or 3 am (sometimes longer) and wake up any time between 12 and 2 pm. She goes to college 3 days a week and on those days she has to get up at 7 in order to be ready for 9. I must admit, college mornings are a nightmare as far as getting ready goes, although she enjoys it when she's there.

 

I used to fight the sleep pattern but I'm resigned to it now - it's just the way she is. To be honest, I would have a very similar pattern myself if I was allowed to sleep in late.

 

Your son sounds as though he has a rich and stimulating life with all his talents and interests - he's obviously managing to fit a lot into his day whenever it begins and ends!

 

Kathryn

[Elouise]

I have a Nathan (16) aka Kevin the autistic teenager.

 

Sorry but you still have to parent adolescence on top of ASD. I also have a Sam (almost 10) who is rigid thinking personified. Reading your post it sounds like you have a young Goth on your hands, he seems to have the mindset.

My home appears to be filled with ASD and off beat young Goths who settle here to watch films nick my CDs and eat everything in the fridge.

 

Nathan has been mugged so often he now dislikes going out on his own as he cannot tell who is a friend and who simply wants to nick his stuff off him.

 

The sleep pattern is typical teenage boy. Nathan is bouncy at midnight and a complete immoveable slug in the morning. This is the boy who would choose to sleep around the clock if I let him before puberty hit.

 

If he is managing to vent his frustration on things rather than people well good for him. I have not a door or doorframe that has not had to be hammered and glued back together or replaced but that's one heck of an improvement on coming straight at me!

 

Melotonin only nudged Sam up to 4 hours sleep in 24 from 2 hours and in adolescence the production of melatonin appears to occur at a different time of day than for little kids.

Nathan takes Risperdral but he also has severe anxiety disorder and it does not stop teenage aggressive outbursts, it damps down the anxiety that can set some of them off.

 

You sound like your doing a fantastic parenting job.

[patrick w]

Gosh..Thank you so for much for your lovely replies... Actually, i am pretty content with the situation personally (am a bit of an odd ball myself); it is just that i feel like i am making it up half the time,, and really wanted to confirm that i wasnt worsening Felix's position (not that he would let me do anything about it mind you..bit of a spectator sport my parenting at times )..As said, and reiterated by your posts, he does seem much happier than before.... ...Thank you for for the reassurance you have given me, i needed that. (and yes, he is a bit of a goth....dyed his hair black....backcombed.... listens to The Cramps and The Birthday Party and Gunclub..is trying to start his own band called "fear of Jesus"..good idea about lyric writing).... i think he is brilliant ..just tough work and super -high mainteneance........This is a weird thing to say...but does anyone feel that their AS kids (or young adults) dont really get that the main carer is a seperate person..not literally , but in a way i cant quite find the words to describe... I swear Felix sees me as just an extension of him sometimes.. He's always been so frustrated when i dont feel things like him; like the same foods or tv programes, or dont undersatnd what he's saying, or dont jump to his immediate beck and call... I know some of that is just average, but it has always been quite extreme and claustrophobic at times.. Am i making any sense at all or should i shut up now...

Anyway, thank you all again..that's great.

[Jill]

Hi Patrick! My lad is only 4 so no advice based on my experiences, but I have read elsewhere that it is quite common for someone on the spectrum to expect you to know what they want / are feeling etc.

 

Sounds like you're doing a grand job BTW!

[Sojourned]

I wouldn't worry about it. I've always had.. unusual.. sleeping patterns (now approaching 19), usually I'll be up until 2-4 in the morning and wake up around 10. Even on the days I need to be up at 7 for college I only turn in by 1-2am.

 

I can emphasise with the lack of socialising, also. I didn't start spending time with other people much until I started going to college at 16, and even now I'm still selective as to who I spend time with and when. Generally I prefer being in my own company.

[Mummy21]

We also have the rule that if he cant sleep and is playing playstation/watching dvd's then he must stay in his room.

 

Justamom

 

 

J used to be up later than he is now when I used to let him play ps2 or watch a dvd, I have found since I put a time ban on ps2 (not after 5.30pm on a school night) and he can't watch dvd after 8pm) he settles a little quicker.......

 

Joanne xxx

[Mummy21]

I swear Felix sees me as just an extension of him sometimes.. He's always been so frustrated when i dont feel things like him; like the same foods or tv programes, or dont undersatnd what he's saying, or dont jump to his immediate beck and call... I know some of that is just average, but it has always been quite extreme and claustrophobic at times.. Am i making any sense at all or should i shut up now...

 

 

You are making perfect sense......... J is eight and he is exactly like that....... and i too feel claustrophobic at times....... He needs help amusing himself, needs me to think for him (try to guide him) into activities.......

 

Joanne xxx

[asereht]

Hi Patrick , my son was out of school for a while (long story ,he was under major stress) he goes to school one to one now,thats what he wants to do but I have told him that he can opt out anytime he wants,he is 15.The outbursts were major but are now minor as he is less stressed.

 

He gets up early when he is in school even though he goes to bed after midnight between 12:30 and 1:30 usually,but loves the weekends and holidays as he can then stay up till the early hours often 4 am and sleep until 12 or 1pm sometimes later.

Some people do not agree with this habit but it suits us and he is a lot calmer than if I insist he goes to bed.

 

 

He can stay in his room or the living room but no going to the kitchen and no noise. He shares a room with his older brother and says he only goes to bed at all because he has to when his brother goes( he doesn't really like being downstairs alone at night). If my older boy moves out K will probably never go to bed at night! But hey he's happy so we are happy.

Edited April 23, 2006 by asereht

[oracle]

When we relaxed about the sleep paterns in this house the house relaxed with us We still have some pretty explosive times - but maybe that's because we lives with it x2 and they don't always rub along well with each other. But we have some pretty fun times to. Last night we had a film night - held in David's room, where he had arranged the ice creams the popcorn the pop etc and we had a great time. All crammed into his room and watched 'Cheaper by the Dozen 2' Yes it can be quite claustrophobic at times living like this but now that David is 18 we can leave him at home and go out - in theory. But now Matthew does not like going out and about so we are stuck again

 

As I have said we decided to live the life that is right for us and not for other people. I gave up trying to be normal years ago

 

Oracle

[Tez]

When we relaxed about the sleep paterns in this house the house relaxed with us

 

I totally agree and judging from most other posts on this thread, this seems to be the case for most of us.

[littlenemo]

Just to give a long-term view on the sleep patterns, I've always had problems getting to sleep before 2 (and often later), but have developed a way of life that works well. Being a freelance designer, I can chose my own work hours, and have found that the 9pm - 3am shift is the best. No distractions (phone, kids, the outside world generally) so I can concentrate (especially when writing computer code). As someone said above, this is no longer a 9-5 world, but if a client gives me a job at 4pm and it's finished and attached to an email at 9 the next morning they don't go anywhere else for the next job.

As long as Felix' sleep pattern doesn't take too much out of you, I wouldn't worry about it.

 

keep up the good work

 

nemo

[patrick w]

Thank you all very much again. I really needed that reassurance.. It is effectively just me and i sometimes just feel small and childlike myself. My whole basic approach, as it is for anyone, is to hope that they are ok and aiming towards happiness for themselves in their lifes. If he feels comfortable staying up all night , then that's fine by me,+ he is a creative being and that fits the mould as well...

 

Thanks

 

Patrick

 

Felix's Dad

[asereht]

My son was back in school this morning for an hour 9-10 he got up at 8. He was watching a dvd last nght when I went to bed at 12:30 and when he got up ( when his alarm went off,no coaxing!) I asked him what time he'd gone to bed,he said 2am ,he was bright as a button this morning so it must work for him.Also the fact that I didn't make a fuss when he started watching the dvd when the rest of the household was going to bed helped. It just goes to show there is no point getting worked up about when they sleep.