Aloof, alone, own company..lonely??

[Juney]

Hi

I just read a post about playdates...and it made me think.. My DS is 11years old.HFA. He has also found groups of children and social events hard to cope with..he once nearly got run over as he did a bolt from a busy playground ( pre-diagnosis) He isn't at all sociable, when he is with other kids -he seems to tolerate rather than enjoy their company. He had a couple of friends but doesn't see then often during the hols. He has a sibling who he plays with sometimes. Well, I think that if he is happy like this I shouldnt force him to be sociable..is this a cop out. I tend to give him the option of attending family functions..and usually he says no. He likes to have lots of notice to do anything.. I've just suggested I cut his hair this afternoon and the answer is no as he needs a few days notice!! He is also very difficult to get out during the hols. I am planning a day trip tomorrow. He just seems to be getting more rigid in everything just lately.. I wonder is this is because he is getting anxious about starting secondary school.

 

this is all a bit mixed up - I am just feeling a bit confused - the more I seem to try and understand, the more confused I seem to get.

 

Juney

[oxgirl]

I know what you mean, Juney, my lad is just the same. Sometimes I feel like it is easier for him to be on his own, not necessarily that he doesn't want to have friends or mix, because he does, but just that it is so very difficult for him that he opts out almost. I take him along to all sorts of things and he enjoys the activities and events but doesn't interract with the other children at all, he just doesn't know what to say and is afraid of saying something wrong so he ends up saying nothing at all.

 

Has your DS said much about starting his new school? Could be that it is playing on his mind and making him feel anxious. Are there any other kids that he knows going to this school?

 

It's really difficult to know what is best to do, isn't it. I'm trying to persuade my lad to join an Aspie youth group, but he asked me 'why would I want to do that'. When I replied that it was to have fun with other lads and make some friends he looked at me as if I was suggesting he go to the Moon or something!

 

Good luck with the new school and I hope that your lad makes some friends there. <'>

 

~ Mel ~

[jb1964]

Hi Juney,

 

Know how you feel - our daughter is a loner....she hasn't been out once during the summer leave - except for one week when we went on holidays. Everything is an effort - even if it's to brush her hair....socialising is a complete no-no for her - only last week my hubbie told me I have to lower my expectations because I wanted us to have one family day out on my last few days leave from work.

 

She too has become more stressed this past week and I've wondered is it subconsciously thinking about the new school term.....I've been hanging back on the shoe and uniform run (even trying them on in the house is such hard work) - although I'm going to have to mention it this weekend.

 

Take care,

Jb

Edited August 21, 2007 by jb1964

[Juney]

thanks for your replies. Its good to hear from people in similar positions. I aim to go out twice a week during the hols. Last week, he did go to the cinema with his friend for his friend's birthday. then a couple of days later we went to nearby museum for 90minutes - he said to me " why do we have to go out so much?" lol!! Tomorrow we are going swimming. He does manage to control himself when we are out much more nowadays..but when he says its time to go...its time to go.. I am grateful though that he can verbalize this rather than having a meltdown. but it does mean our "day" trips are more rather "morning-if you're lucky" trips. In June I went on a good Supporting Siblings seminar by NAS - it was good, and I have managed to take my neuro-typical DS out on a trip which his brother wouldnt have managed ( York Dungeons) It was embarrasing at the weekend my other son had his friend round, and my AS son after a while said " When is he going?" when they went out to the park he yelled after them " And don't come back!" At least he can tolerate this lad, some children seem to switch on some sort of light in his head and somehow cause some bizarre behaviour!

 

he doesnt say anything at all about moving up to secondary school! he gets quite irritated if I mention it! He does have a friend that is going up to the same school. He specialist teacher said to me that he won't see 'friendship' in the same why I do. I am going to do him a laminated timetable, and we will change it every evening. he's got his uniform and have washed it. and he has practiced with his new more grown up lunch box.

 

he did go to an AS specific after school club for a while, but like your son Mel, doesnt interact - he won't go now, but I have his name down at another one - its a year wait for a place at least - but I know his response would be " Why would I want to go there"

 

hope you manage a family day out jb, have you tried doing a sort of social story beforehand, I usually do - and it gives me a better chance of successI've got a few strategies now - we always go early, and our trips are usually to quiet places like english heritage castles, countryside walks etc. As for the cinema we always go to the earliest showing of the day as we've had numerous cinema problems over the years!! The amount of uniform I've had to buy and then take back coz it doesnt fit etc is amazing. Good luck with getting it sorted at the weekend.

 

juney

[jo4themo]

Hi Juney

I know how you feel - my daughter has Aspergers and until she went to special school she had no real friends outside the family. At home she gets on quite well most of the time with her younger sister and brother and her sister is good with her. My friend has two daughters and we see a lot of them and Niamh gets on well with both of them and will interact with the oldest one very well - it's handy they both like books and Dr Who!

However, at large family occasions - parties etc - she tends to not interact unless she has to and tends to find somewhere comfy and/or quiet to sit and read her book.

When we go out anywhere we try to avoid very busy places, so we tend to visit zoos, farms etc out of season otherwise she just reads her book - or get anxious if she has no book.

If we go to the park there are few things she can go on due to her physical disability so she might go on the slide a few times and then she tends to sit with me and read - as you might have agthered, books are one of her interests.

Emma

[loulou]

Hi Juney,

 

Welcome to the forum <'> . My son has just turned 9 and he is very similar. All we've managed to do so far these holidays is go to the cinema once. Most days he wants to stay in his PJs all day and indulge in his latest obsession (Avatar The Legend of Aang). We went to Wales for a week, which he loved, but he wouldn't go on any trips anywhere. All he wanted to do was go in the sea and watch seagulls (another of his obsessions) .

At least it was sunny, so i didn't really mind.

 

We've now been in the house for 9 days and i'm starting to go crazy. Today he wanted to go to the woods for a walk, but it was pouring with rain so we couldn't.

 

He only has one friend whom he doesn't see very often. He tells me he wants some friends, but he never seems to make any, as everything has to be on his terms, so they soon get fed up with him. It breaks my heart as i think he's lonely.

 

I'm dreading the start of term, as it will be very stressful for him. New shoes, haircut, new teacher, change in routine again. Aaarrgggghhhh!!!

 

Loulou xx

[Juney]

Hi LouLou

Thanks for the reply. Hope your week is going well - have you managed to get to the woods yet? We had a successful swimming trip yesterday, but it hit home to me my DS's difficulties as I had to run an errand to a relative. My DS's cousins were there, so he wouldnt come in the house ( it is a house he knows) , would only stand by the front door. gradually edging back to the car. I managed a swift cup of tea before we left. At least I have learnt .. a few years ago I would've been trying to force him into the house!!

 

Juney

[ASue67]

Hi LouLou

Thanks for the reply. Hope your week is going well - have you managed to get to the woods yet? We had a successful swimming trip yesterday, but it hit home to me my DS's difficulties as I had to run an errand to a relative. My DS's cousins were there, so he wouldnt come in the house ( it is a house he knows) , would only stand by the front door. gradually edging back to the car. I managed a swift cup of tea before we left. At least I have learnt .. a few years ago I would've been trying to force him into the house!!

 

Juney

 

That sounds like my son! If we go to someone's house (that he knows) but he doesn't want to be there or go in then he sits in the car outside. Won't even go to the front door! I can manage a very quick cuppa if I am lucky and then we have to go. I too have learnt that I no longer try to force him to go in somewhere!

[Juney]

Hi Sue,

 

Its nice to hear from people in the same situation - ( sometimes you feel like the only one!!) the worst thing is feeling as if I am leaving him out of things - there we all are having a cuppa and a chat, and there he is stood in the garden looking anxious. I never know if I should be exposing him to these sort of situations more or not. Having said that I am pleased with how yesterday went... previous situations like this have ended in huge meltdowns.

[ASue67]

I am torn between keeping the peace (not going somewhere) and doing something so he knows that he may not like it but it is something that I have to do!

 

I hate it when he is sat out in the car on his own and feel very guilty about it but at the same time there are things that I need to do that he just has to accept. It is just a balancing act all the time and like you say trying to avoid the meltdowns!!!!

[badonkadonk]

Hiya Juney,

 

I think it is like Sue mentioned, finding a balance is a good start. While I'm the first to say that you shouldn't try to force your kids to interact and feel bad for them (or negatively towards them) fo not wanting to go outside and make friends becomming a complete hermit, ultimately, can have negative effects. If you think about it logically so too can going out all the time and being contstantly, socially active. It's about balance. I find it very difficult to want to go outisde, I much prefer to stay in the comfort of my own home doing what I want to do and engaging in my obsessions/spending time with my boyfriend. But, being 24 I also know that I have to go outside to do certain things (go for job interviews and ultimately go to work, complete tasks and errands at banks and post offices, do the weekly shopping etc) and I know that often although I dread the weekly shop, getting outside for a bit can be a nice break at times.

 

While I think it is important to recognise that your children might be unhappy in certain social situations (going into people's houses to chit-chat, going to family functions etc) and I encourage giving children the option in this instant, I do also think that you need to not let them get into a routine of saying no to going out all the time. Don't drag them on every shopping trip and every time you run errands, but take them with you a few times. We can cope and sometimes even enjoy being outside and doing things in public as it's not always about what we are doing but what the external influences are when we are doing something. Being at home is best because there are few external influences. Out and about it's less predictable, more noisy and far more overwhelming. But with good understanding (you and your children) and some effective coping mechanisms (such as verbalising when they are feeling distressed, using strategies for coping with sensory overloading, giving your children a task to give them focus) there is no reason why your kids can't go out and about with you sometimes.

 

The reason I say this, and I know it might seem surprising coming from a self-confessed hermit Aspie, is that if it is allowed to happen that children shun doing things they don't want to do then those behaviours become learned and ingrained and hard to break. By including them in some errand runs etc they are not only exposing themselves to change (and experiencing dealing with it) but they are also learning valuable things which they will need to know to be an independant adult. Leave them at home for the social chit-chat events by all means, if you can't leave them at home leave them in the car with their favourite book to read/game to play on (plan in advance or keep an activity in the car for them to do). Whenever my mum went visiting family and friends I would always prefer to stay in the car because that kind of situation is horrendous for me.

 

I think sometimes the worries about asd kids getting independence when they grow up is focussed on the wrong area. A lot of the time people worry about their inability to make friends and yet they don't need friends to be independent. What they do need is life skills and the ability to communicate to get done what they need to do and to give others the information they might need in order to do this. They need to know how to apply for driving licences, how to send an item from the post office, how to pay money into a bank account, how to do the weekly shopping etc etc. All this stuff is really important and yet I get the impression a lot of the time that it is this stuff that the kids are excused from and the more social stuff they are 'dragged' along to. Now you might be saying but my child hates doing this stuff and doesn't understand why he has to do it...I get it, I hated it to but it's part and parcel of being a flipping kid and learning that in life you have to do things that you might not like to do. I used to get very frustrated with my parents because often they would tell me we had to do things (errands) and when I questioned why I had to do them if it was things they had to do I would get told 'because'. It didn't occur to my parents to stick the brakes on a minute and explain to me why we had to do these things, how long it might take and in what order we were going to do them. I don't know what they thought, perhaps they assumed I wasn't old enough to understand, perhaps they thought they didn't have enough time to explain it to me. I wish they had told me what we were doing and why, even if it is just 'we have to do so and so because these are the dull things we have to do in life.' Adding to that I wish they had gotten me involved in the duties because I could have probably organised things a bit better and enjoyed being out a bit more. If I had to take an asd child out and about to run errands I would put them in charge of making a list of what we had to do, organising what we were going to do first (while giving them the information they need to work this out) I might draw them a map of where we were going in town and allow them to plan a route that way. I would ask them to create the shopping list while shouting out items that I need, I would then ask them to be in charge of this instore. I would show them how we paid money into a bank account and if needs be give them the paying in slip/book and let them hand it to the cashier so that they are involved and active and don't have time to become aware of things that might lead to a sensory overload. I know it means spending extra time sorting things out in advance and I know it means taking extra time to explain the situation to kids who might not get it and who might still say 'so what' but it's worth a go if it means you can get your jobs done somehow and they learn valuable life skills.

 

I can't say this will work, I've never tried it, but as an adult Aspie this is my take on the situation and what I would have wanted when I was younger. I'm glad in a way I was exposed to wedding and birthday parties because at least I know what to expect at these things. Doesn't mean I enjoy them but at least I don't have such a big fear of the unknown because I have some information about them. Again though there is a balance to address, I wish I had been dragged to less social occassions so it's half of one half the other (or whatever the saying is). Me and my boyfriend Neil are perfect examples in a way of growing up in opposite extremes. We are both Aspies but our social abilities are at the opposite ends of the scale. Neil was brought up in quite a small family with not much in the way of an extended family. Because of certain circumstances and because of where he was from and the differing attitudes to how things are done he was very much taught how to cope, survive and exist. He didn't do much socialising, playing and family things as a kid because that's just how Neil grew up and as a result Neil is able to work full time, deal with running errands and making things work and it shows because he is successful in his career, has his own house and is 'coping'. I on the other hand was very much sheltered from doing adult things like running errands and figuring out how to do things and instead i grew up in a big family with a big extended family. I was constantly thrown into situations where I had to socialise, be with others and we did lots of playing and being kids and lots of family together time. Because of this I am able to cope with social situations a lot better and sometimes even enjoy it because I've had enough experience of it now to get out of it what I want. I'm still fairly rubbish at meeting new people and would much prefer to be by myself but I can cope and it's not always an entirely horrible experience. I'm rubbish at being assertive and confident though when it comes to dealing with people and getting things done. I hate using the phone, hate having to go to the bank or anywhere like that because I never quite know what I'm doing and worry constantly about getting it wrong (that whole Aspie perfectionist thing). Similarly Neil is really awkward in most social sitiuations, is unaware of how to get the best out of these situations and often finds them quite painful and hardwork. Even though he is working full time and is able to earn a wage he finds it hard to stick up for himself at work and instead burys his head, copes and survives, blotting out his needs and how it is affecting his happiness etc. He has had periods of his life when he has become completely cut off socially and he is only just beginning to get to grips with doing out of the ordinary things that might make him happy, instead of just focussing on what needs doing and what he is used to doing. Since getting together Neil has experienced a carwash for the first time, eats wholegrain mustard and jumped headfirst into decorating for the first time being allowed to do it himself and make mistakes if needs be. He's 33, he should be confident to explore and take risks and pursue happiness and feel ok with exposing himself to new things. Slowly we are working on this and he is making big progress We are also working on me getting better at being independent, at not burying my head with the mundane tasks that need doing (getting to the doctors before my prescription runs out, sounds stupidly simple and yet before I would dread it so much I would run out, succumb to stress and anxiety and miserableness and eventually get a repeat prescription. Now I am organised and make a doctors appointment well in time to get more tablets before I run out.) I'm also establishing good routines (getting up at the same time each morning and going to bed at similar times each night is having a massive, positive impact on my ability to sleep.) eating healthily and putting effort into planning ahead meal wise so that I don't become despondent about making a decision of what to eat (something I struggle with) and then I don't get stupidly hungry and binge on something quick like chocolate or crisps. I'm taking steps to get back into work and using the phone and communicating with people to do this. I'm also getting there, slowly

 

I realise that this has gone off into a bit of a tangent about me and my boyfriend but I just wanted to give you this information as just hearing other people's experiences can often help and lead to you developing your own ideas and things to do.

 

Sorry for the ramble,

 

Emily

xxx

[Bard]

I think sometimes the worries about asd kids getting independence when they grow up is focussed on the wrong area. A lot of the time people worry about their inability to make friends and yet they don't need friends to be independent. What they do need is life skills and the ability to communicate to get done what they need to do and to give others the information they might need in order to do this.

 

I agree that this is exactly what B needs, and it's one of the areas that we work on. He hasn't got friends, but he does have good manners. He knows when to say please, thank you and excuse me. He doesn't integrate with the world, but he is learning some of the social skills that he will need to function in our society.

 

If I had to take an asd child out and about to run errands I would put them in charge of making a list of what we had to do, organising what we were going to do first (while giving them the information they need to work this out) I might draw them a map of where we were going in town and allow them to plan a route that way. I would ask them to create the shopping list while shouting out items that I need, I would then ask them to be in charge of this instore. I would show them how we paid money into a bank account and if needs be give them the paying in slip/book and let them hand it to the cashier so that they are involved and active and don't have time to become aware of things that might lead to a sensory overload.

That's what we do, every day that we are out and about. I also explain clearly if he asks me a question about anything when we're out, although he understands the hand gesture that means 'Not now, I'll tell you later!'

It works well, and B is very adventurous about new places and new situations if I am there with him, because he feels that he has a great deal of control over things and events. He is developing a huge range of life skills, as long as it doesn't involve too much unstructured interaction with other people.

 

I can't say this will work, I've never tried it

I have, it does for us. It's the only way that I can see that helps him build his life skills to the point that he will be able to manage without me at some time in the future...the distant future I hope, but who knows.

 

I've only got one major worry now, and it's about me.

Am I becoming a Badonkadonk groupie?

[elun1]

The advice given by Emily is really good for AS children but I struggle with the 'independence' thing with O. He is severely autistic with severe learning difficulties and doesn't understand the concept of maps or shopping lists and will never know what a bank accout is. And yet he still needs some life skills. Where do you start with children at the severe end of the spectrum? I haven't a clue and 4yrs after diagnosis I stll don't really know where to begin with this. We can't even walk along a pavement at the moment as he hops and jumps along covering his hands with his ears. He has NO concept of danger or even that the road is different to the pavement. I mean, where do you start with an issue like this? Any ideas really welcome!

Elun xx

[Juney]

Thanks Emily -reading about your experiences has been really helpful, your advice and suggestions are really good, and that is I think the balance that I am trying to achieve, I haven't quite got the balance right as I tend to do a lot of shopping of the net, and so shopping trips are limited, and do need addressing, and I do tend to go on my own. When we do go we do need to take a list. I have been know to try and go in a shop that's not on the list... you can imagine the response that gets. he gets the chance about family occasions, I can't remember the last time he went on one, he didn't attend a wedding in 2004. He does spend weekends with his Grandma though.

I will definately print of this thread to refer to as there's a lot of good points and tips.

 

He will be using the bus to get to secondary next week - he's good with using buses except for saying "40p please" I think he will end up just having to give the money over. He will have his older DS for support.

 

Will get thinking elun. how old is your DS?

 

juney

Edited August 24, 2007 by Juney

[elun1]

Thanks, he is 6. Do take him out and about with us as I also have a 7yr old who will himself be starting assessments in Sept as I think he is A.S. I try and do loads with them in the hols but it gets harder as O gets bigger and stronger

xx

[Juney]

Have you looked into doing a basic social story type thing with pictures of the walk that you are going to do. I make a lot of my own story boards/visual aids and they seem to help. I was thinking earlier today that I wish I had done them when he was younger, but I thought that he would learn by just exposure alone - I dont think this was the case - I am thinking safety rules when out walking etc. I think if I had done a simple story board it might have helped.

 

juney

 

PS. I read this thread before I went out so said to DS do you want to come to the petshop with me - he said No, so I've said maybe you will come next time then. I think I do let him opt out too much!!

[elun1]

Hi Juney

Thanks, have tried using very simple social stories with incontinence issues but don't think he really gets it. Although he's six developmentally they reckon he's about 12 to 18mths with receptive and expressive language. Think I just feel down at the moment as I know he's never going to gain independence and I worry whay will happen to him when we can't care for him anymore. It's so worrying

Elun xx

[loulou]

Hi Juney,

 

Hope things are going well. We still haven't managed to get to the woods as it's not stopped raining here .

 

Kai would never go into anyone's house either, unless it was my parents' house or a good friend and he knew well in advance. If there was someone else at the house when we got there, he definatley wouldn't go in.

 

Today however, i was very impressed with Kai as he actually showed our new rabbits to one of the neighbours' little girls. We were in the front garden and she asked to see our rabbits and Kai took her through the house to see the rabbits. I nearly fell over backwards with shock! Then he ran off and left her standing there, but at least he made an attempt .

 

Tomorrow we're going to look at a new house, so that will be fun trying to persuade him to 1) get in the car and 2) get out of the car and go into the house . I've tried enticing him by telling him it's got a huge garden, so fingers crossed he'll comply.

 

Loulou xx

Edited August 24, 2007 by loulou