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smadams11

should my son have rules?(aspergers)

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hi,

my son (aged 8) 'rocks and rolls' which is a repetitive, violent, full bodied movement. he has broken 4 beds doing this so i bought him a cot mattress that he can lay on the floor and do it there. there are 2 rules for this-he can rock and roll ONLY on the mattress, nowhere else, and he must not fall asleep on the mattress. he doesn't follow these rules so quite often loses his mattress.

i asked for advice regarding this on a facebook support group. i received plenty of replies-all saying my son should not have rules at all, under any circumstances. i am very shocked by this reaction.

i could understand if my child had severe autism and simply couldn't understand/follow rules, but he is a very intelligent little boy with an incredible memory. he remembers the rules and i have explained why the rules are in place etc....

i'm asking you guys whether you think he should have rules or not?

i cannot imagine him not having rules-how would he know about danger? how will he react as an adult in a world full of laws that must be followed? i go easier on him than my other kids as i realize there are things he needs to do, i know he can be forgetful and he gets carried away, he rarely thinks of consequences before he does something..........but there must be some boundaries in life. aspergers is not a get out of jail free card-it doesn't mean he can do as he pleases, when he pleases with no regard for anyone/anything else.

i have books on autism and they support autistic children having rules and having 'costs' for breaking them.

so what do you think?

thank you

 

(i would like to add that i have dropped the 'cost' of taking away his mattress as i realize he needs it to rock and roll, however he still has other rules in place and consequences for breaking them)

Edited by smadams11

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Hi smadams11, and welcome. I firmly believe that children with AS should absolutely have rules, in the same way that all children need rules. Without rules any child, whether on the spectrum or not, would think anything goes and to let them get away with behaviours that are unacceptable would not be doing them any favours at all in the long-term. We all need to live by rules; we must not hurt people, we must not steal other peoples' things, etc., why should someone with AS be any different.

 

When it comes to the mattress, it seems like this is a good compromise. You feel he needs to do his rocking and the mattress is a safe place for him to do this when he needs to, and it sounds like it works well. Does he have another bed for sleeping in?, I was a bit confused by the 'must not fall asleep on it' rule, is this to keep it separate from the bed where he sleeps?

 

Anyway, in answer to your question, yes, I think people, including people with autism, need rules.

 

~ Mel ~

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Does he have another bed for sleeping in?, I was a bit confused by the 'must not fall asleep on it' rule, is this to keep it separate from the bed where he sleeps?

 

Anyway, in answer to your question, yes, I think people, including people with autism, need rules.

 

~ Mel ~

 

 

thank you so much for your positive reply. i absolutely believe my son should have some rules but the facebook group had me doubting myself (they said i clearly didn't understand autism).

 

yes, he has an ordinary bed, which is obviously for sitting or sleeping in, and a cot mattress (without a cot!) for rocking and rolling on the floor. the rule about him not sleeping on the mattress is because he isn't covered up on there, he has no pillow and what is the point of having a bed?!

someone suggested that i allow him to put the cot mattress on his bed, rock and roll on there and then it wouldn't matter if he fell asleep as he would technically be in bed. obviously this defeats the point of having the mattress. he cannot rock and roll on the bed as he breaks them, which is dangerous and costly.

 

anyway, thank you again. i feel much better knowing someone agrees with me! :)

Edited by smadams11

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You're very welcome. Sometimes you just have to go with what you know is right for you and your family. It is odd that people on the other group would say things like that, but some people can express very strong opinions about what others should and shouldn't do and if we don't happen to agree with them they come out with the 'oh, you obviously don't understand' line. Best ignored, imho. :)

 

The bed/mattress rule makes total sense to me. I should think it also means that he does his rocking in private rather than in inappropriate places or at times when it could cause problems, which could cause embarrassment for him and draw unwanted attention. Well done you for coming up with a solution that works for you all. Sometimes we can't 'cure' behaviours that our children might have but managing them goes a long way to meaning they are less of a problem for them, especially as they grow older, when behaving 'inappropriately' has more far-reaching consequences for them.

 

~ Mel ~

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Yes children with or without autism need rules.

 

The only thing I would add is that this rocking and rolling could be a sensory thing. If it is sensory seeking then he maybe less able to 'control' it. Simply because he 'needs' to do it. And the reasons for that need could be many. In the same way that we need to open our eyes to see. It could as basic a need as that, to self calm, to get feedback from his core muscles/bones. He may need to rock and roll in order to get to sleep and that is why he is falling asleep on the mattress on the floor - because the rocking and rolling calms him to enable him to sleep.

 

Has he ever been assessed by an occupational therapist for Sensory Processing Disorder? Does he often seek movement, or like to be squashed etc?

 

My son has alot of OT input in school. I also have things at home that he can use to get the sensory input he needs ie. punching bag, trampette, peanut ball to sit and bounce on in his bedroom. He uses them. And he needs to use them. It helps him control his anxiety, it helps him get the sensory input he needs.

 

Previously he has broken his bed. He has also chipped off large areas of plaster on his bedroom wall because he was hitting the wall with things to get the 'sensory feedback' from hitting a solid object such as a wall. Obviously that is unacceptable. But you can find out ways that he can carry out the things he 'needs' to do. There is a difference. If it is just being naughty, then he would not use something 'appropriate' that you gave him to get the same sensory input. But my son is using the things given to him, and is using them appropriately, and no longer damaging household furniture. I suspect your son maybe the same. And get an Occupational Therapist assessment for SPD.

Edited by Sally44

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I as a child also did the "rock and roll" thing.

 

not to the extent I broke beds,

 

....but I had a definite frequent tendency to just want to shake my head from side to side. etc.

 

even now when I sometimes am half way between sleep and awake I find myself doing it.

 

(which is very embarrassing if I'm sharing my bed with someone else)

 

when I was a kid though it was much more of a problem.

 

I had to share a bedroom with my brother, and he hated me doing it.

 

so I was constantly being ordered by him to not do it.

 

he used to run downstairs and tell mum and dad "he's doing it again." & dad used to come up and beat me to make me stop :-(

 

I can tell you right now for free, it's a trait of Asperger's/ autism (my shrink a few years back said it's a classic trait.)

 

it is not something your child can control, of that I give you my word.

 

i know you've said you lads really good at rules, etc. but i promise you, with that one there's nothing he can do about it.

 

(just like it wasn't something I could control.)

 

i agree with rules in a lot of other areas of a child's up bring, but that behaviour is not going to go away.

 

it's good you folks have realised that, and have suggested ideas to fit in with his needs,

 

(whilst also saving you having to buy him new beds every three months :-)

 

I'm sure your lad would rather have that money spent on outings and treats for him, than having to keep replacing beds.

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Yes children with or without autism need rules.

 

The only thing I would add is that this rocking and rolling could be a sensory thing. If it is sensory seeking then he maybe less able to 'control' it. Simply because he 'needs' to do it. And the reasons for that need could be many. In the same way that we need to open our eyes to see. It could as basic a need as that, to self calm, to get feedback from his core muscles/bones. He may need to rock and roll in order to get to sleep and that is why he is falling asleep on the mattress on the floor - because the rocking and rolling calms him to enable him to sleep.

thank you so much for this. i realize he needs to do his rocking and rolling and your suggestions have been very helpful. i had wondered if the rocking was putting him to sleep, and as you feel the same i will definitely lay off him for sleeping on the mattress and praise him when he makes it to bed!

i will also do my best to find other items to stimulate his senses-so thanks again!

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I as a child also did the "rock and roll" thing.

 

not to the extent I broke beds,

 

....but I had a definite frequent tendency to just want to shake my head from side to side. etc.

 

even now when I sometimes am half way between sleep and awake I find myself doing it.

 

(which is very embarrassing if I'm sharing my bed with someone else)

 

when I was a kid though it was much more of a problem.

 

I had to share a bedroom with my brother, and he hated me doing it.

 

so I was constantly being ordered by him to not do it.

 

he used to run downstairs and tell mum and dad "he's doing it again." & dad used to come up and beat me to make me stop :-(

 

I can tell you right now for free, it's a trait of Asperger's/ autism (my shrink a few years back said it's a classic trait.)

 

it is not something your child can control, of that I give you my word.

 

i know you've said you lads really good at rules, etc. but i promise you, with that one there's nothing he can do about it.

 

(just like it wasn't something I could control.)

 

i agree with rules in a lot of other areas of a child's up bring, but that behaviour is not going to go away.

 

it's good you folks have realised that, and have suggested ideas to fit in with his needs,

 

(whilst also saving you having to buy him new beds every three months :-)

 

I'm sure your lad would rather have that money spent on outings and treats for him, than having to keep replacing beds.

its great to hear from someone who has/does rock and roll. my son has been violently shaking his head from side to side since birth (now his shoulders go with it as well!)-i tried it once, just to see what the fuss was about, and i found it to be relaxing but obviously i don't need to do it hereas my son does. i can understand why he does it.

im so sorry to hear of your fathers reaction to your needs. perhaps he didn't understand? or didn't know how to deal with it. i'm not perfect. i occasionally become overwhelmed and lose my temper but i would never beat my little boy. if he was born with a physical disability i would know that it couldn't be helped and i would see to his needs-aspergers is invisible but my reaction is the same. i feel for him.

my other son (aged 5) often runs downstairs to tell us my eldest is doing something that's against the rules, but he knows that his brother has permission to rock and roll among other things.

anyway, thank you again for taking the time to reply. your point of view has helped a lot :)

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I know it is hard to know or understand the 'cause' of many things our children with or without autism do. And we don't always get it right. But the fact that we try, means we are able to make adjustments if we need to.

 

I absolutely agree that there must be rules. But I think that we can get a 'gut' feeling about whether our child is being naughty or disobedient or not. My son is now 13, and I still don't always get it right. He really struggles to go to school because of the autism, because he also has severe dyslexia, because he also has OCD, because he also has dyspraxia, and because he also has sensory processing disorder. So on so many levels, going to school is sometimes something he just cannot do. And that is hard to take. Especially when many people are saying he just has to go QED. It isn't that simple.

 

I can see myself that he cannot do it. And when we make adjustments at home and in school he does agree to go in. And he has been given alot of control over when he goes on, and how long he stays. And some people who do not know him or the situation might say he is being given too much control. But when he has control he starts to slowly go back into school. He does want to be there. Currently his OCD is quite bad. And his anxiety is high. That causes his sensory issues to increase.

 

What I love about this forum is that people can come on and ask questions and get answers. Sometimes those answers are very different. But they have worked for those people, usually with their own children. I hope that the information posted by others is useful to you.

 

I found that as my son grew up, he became more able to talk to me and explain what his experiences are - just like dotmarsdot.com has done.

 

For example my son told me how anxious he gets going into school just thinking about what people might say to him. He finds that really hard to deal with. He is verbal, but he has a severe/profound speech and language disorder. The thought of what people will say, what will I have to answer, what will be expected of me, will I be understood, will I be believed, will people laugh at me, will I be able to find the words, what if I don't understand - the list goes on and on. And we just don't have those issues. We just take so much for granted that is so hard for our children.

 

I would love to be able to experience what my son does.

 

I do have some sensory issues myself so I think I do have some insight. I specifically have tactile sensitivity. And I remember as a child my mum used to make clothes for all of us. And I remember a number of those dresses, and how I refused to wear them. On one occasion I missed a party because I would not put it on. My mum thought I was being awkward and so said I would miss the party. But I could not wear that dress. It caused my physical pain. It was a synthetic fabric and synthetic lace. I felt like my skin was on fire. Labels and tags in clothes cause me physical pain, like a needle being stuck into my skin. I HAVE to cut them out. I cannot wear certain fabrics, and sometimes just touching me hurts - and the hurt sensation can stay, sometimes for minutes at a time. I have problems with socks, shoes, seams. I don't comb my hair EVER. But obviously what I did not know as a child was that my perception and sensory processing was DIFFERENT to other people.

 

I also have auditory processing disorder. In a crowded room, or with some types of background noise, I cannot hear what is being said. If the TV is on and I answer the phone I cannot hear the person on the phone. I often appear deaf and my family members have to touch me to help be 'zone in' to what is being said. In a crowded room my ears pick up different words from different conversations, so I get a mish mash of sound and words, but none of it makes sense.

 

Sensory Processing Disorder is complex. I think your son should be assessed by an occupational therapist. You will find it hard to get via the NHS, but not impossible. If you can afford it it might be worth getting an independent assessment. Some independent ASD specific schools have OT and SALT employed on site. And the OT should be qualified to deliver a sensory integration programme that really does make a different to the child.

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I know it is hard to know or understand the 'cause' of many things our children with or without autism do. And we don't always get it right. But the fact that we try, means we are able to make adjustments if we need to.

 

I absolutely agree that there must be rules. But I think that we can get a 'gut' feeling about whether our child is being naughty or disobedient or not.

 

thank you for explaining to me how your sensory issues feel. it is difficult for me to understand how a certain fabric can make someone feel as though their skin is on fire, but whether or not i understand doesn't matter much-the fact is that it does make you feel that way and that is the way i try to view my sons needs. my understanding doesn't make a jot of difference to the fact that he feels a certain way or experiences something in a way other to me.

this sounds strange but i hate when someone scratches carpet with their nails and even worse is when someone bites wool-just seeing it happen literally makes my teeth hurt. its obviously not a burning pain but my teeth and gums itch and there is definite pain! so if its something like that then i guess i can understand (even though it makes no sense-there is no reason for my teeth to hurt!)

 

my son is home educated as the school weren't supportive of his needs. the kids would walk through the 'big' playground at lunch to get to the cafeteria-mostly my son would run back to the classroom and hide under the teachers desk with his hands over his ears but he would also bolt for the gates (they stayed open on the big playground). rather than having someone hold his hand or watch him more carefully etc, they chose to ban him from having lunch at school which i struggled with as i had a toddler and new born to care for, walking to and from school so often a day was too much. so i snuck a packed lunch into my sons backpack and didn't go to pick him up. the headmaster called me in and told me that my son would one day get out of the gates and 'he is not our responsibility when he is off school property' and 'we can't do anything to help him'. so i immediately began home education.

i'm glad to hear that things are getting better for your son. he should hold control since he is the one trying to make it through a difficult world. he is very lucky that he has your support, especially as you understand some of what he goes through.

 

thank you again. you have really helped my understanding and i will try to see an occupational therapist and continue learning about aspergers and my childs needs.

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Children definitely need rules the same as children not on the spectrum. Your in the best position to decide what these rules need to be and how to enforce them. The matress for rocking is a very good ideal and having that one place will be of comfort for him I can understand that but all other rules should be followed but constant moderation should be employed as severe stress and anxiets about a situation could instigate a meltdown that will not help the situation. I think your doing fine going by what you said.

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I definately think your son needs assessing for a sensory processing disorder. He shows so many signs, including the rocking and covering his ears to noise.

 

Once you get the concept that your child maybe experiencing things differently to you, then you are on the path of discovery.

 

With my son he was really surprised when I told him that other people do not see, hear, smell, taste, experience tough as he does. He obviously assumed everyone was the same, but for some reason other kids could do the things he could not. That made him label himself as stupid, weird, a loser etc, which does nothing for self esteem.

 

I believe that with most, if not all, autistic "behaviour", there is a reason for it.

 

Here is a link to a woman called Amanda Baggs. This video is very powerful as your perception of her ability to function is greatly reduced in the first half of the video, and then she uses the computer to speak [as she is totally non-verbal], and you realise how intelligent she is. Makes you think about how we judge the functioning ability of individuals.

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Everyone should have rukes phrased according to their level of understanding.

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i just want to thank you all for your input on this issue.

my surprise was that ALL the replies on facebook were against me-this from people with children on the autistic spectrum-i just couldn't fathom it! a life without rules?!! ridiculous! clearly they 'understand' less than they imagine.

anyway, thank you all so much for restoring my faith in myself as a parent :)

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Yes, very strange. Maybe they let their kids decide to stay up until 3am if they choose, get up at mid-day and eat chocolate cake for breakfast?! Weird!

 

~ Mel ~

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Yes, very strange. Maybe they let their kids decide to stay up until 3am if they choose, get up at mid-day and eat chocolate cake for breakfast?! Weird!

 

~ Mel ~

haha-exactly what i was thinking! also, 'hey, sure you can play with the kettle! yup, go ahead and stick that knife in the toaster!' so maybe not the best idea :)

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facebook is just a "kids toy" smadams11.

 

it's the equivalent of going to the nearest kiddie play centre, and asking a 5 year old kid in the coloured ball swimming pit what they think?

 

facebook was never meant to be anymore than a child's experiment,

 

(I believe the people that designed it were just university students?)

 

it's always best to get the low down from more customised specialised forums.

 

I personally don't use facebook, except to discuss what coloured socks everyone is wearing :-)

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I'm a bit slow arriving here, but I'd agree with the others. We all need rules to live by, even if they're our own rules. The most important rule of all must surely be never to deliberately cause harm to others.

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isn't the point that special needs folks don't comprehend the world the way NT's do?

 

if you explain a rule that makes perfect sense to a NT to them...

 

it will just mean nothing!

 

if you say, don't stick your hand in the fire, they just simply aren't listening...

 

(they might at that moment be absorbed with thinking about lining up their toy cars the way they want?

 

to them "our" advice is like a natt buzzing in their ears.

 

I think smadams11 started this thread by trying to help his kid stop wrecking beds,

 

and smadams11 was concerned that his son was not listening to him after he'd laid down some rules to save the expensive of new beds?

 

(cause what father can afford new beds every 3 months!

 

these days it's hard for a lot of fathers to even provide food for their kids, let alone pay for broken beds every three months!)

 

I'm not sure we should extend that original conversation to universally include the more global "are rules good or bad" thing?

 

I think with special needs younglings,

 

we should exchange hints and tips to help them to do *what is safe for them* but also at the same time affordable for us parents,

 

without what we say seeming as rules?

 

every special needs youngling is different. they have their particular needs and wants, and we have to tap into that, and use that to get the result that means they are safe.

 

exerting "rules" in an authoritarian sense to a special needs kid serves no purpose. it will fail.

Edited by dotmarsdotcom

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re: the most important rule of all is to never harm others (nihaela)

 

I know very few who have applied that rule when dealing with me,

 

(with the exception of this website.. which is cool.)

 

but I agree .that is the dream isn't it. that everyone, what ever their capability and function, can understand and tolerant others and never harm them (intentionally)

 

I try to apply that thought to every living moment of my existence that I will never harm another person...

 

...but I always end up upsetting them anyway :-( LOL :-( :-( :-(

 

it's like I said in my other thread.. I think without intention there is no crime?

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I think without intention there is no crime?

Absolutely!

And we all need understanding to realise and accept this, whether individuals, the legal system or the mass media. We still have a long way to go before we can truly call ourselves civilised. :(

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human beans?

 

civilised?

 

i saw this show on TV earlier.

 

called "googlebox".

 

more correctly, i wasn't watching it. i was just passing through the room and noticed "them" watching it....

 

it's basically about what people say when they watch TV.

 

there is no hope! if that is the culmination of 10,000 years of human NT's trying to evolve.

 

i weep :-(

Edited by dotmarsdotcom

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Sally44, that video is one of the most amazing things I have ever seen. It raises some very interesting points, such as that while the behaviours of an autistic individual may make no sense to an NT observer, most NT behaviour makes no sense to autistic people! Gossiping about last night's TOWIE? See, that makes no sense to me whatsoever. This world is very biased towards a certain type of person, I think, with little room for those of us who are "different". The video you linked should be shown to every single pupil in every single school in the country to highlight the fact that we should not all strive to be the same, rather that we should accept and respect each other's differences.

 

Back to the original topic, I totally agree with the previous posters that rules are essential for any kid, whether they be neurotypical, Aspergers or anything else. Children are by nature quite selfish and if they are allowed to do whatever they want with no rules, chances are they will grow up to be selfish, uncaring narcissists. The celebrity world is already full of people like this and every day, people try to emulate those celebrities. You don't want that happening to your son. He will be a much more well-rounded man when he grows up if he has rules to follow

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I agree completely, Laddo.

 

This world is very biased towards a certain type of person, I think, with little room for those of us who are "different".

 

True, and that certain type are characterised by hypocrisy, dishonesty, irrationality, selfishness, greed, superficial thinking, social status, power over others, etc. yet these people call themselves 'normal'. NT society suffers from hysteria, paranoia and delusions of many kinds. In individuals these dysfunctional traits would be seen as signs of mental illness, but collectively they're rarely even questioned. The mainstream media is a classic example of this. There's clearly something radically amiss with the usual NT view of this 'normality', which assumes it's right, acceptable, healthy and good (i.e. not a problem).

 

The celebrity world is already full of people like this and every day, people try to emulate those celebrities.

 

A perfect example of a highly dysfunctional society.

Edited by Mihaela

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