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Anna Van Der Post

Parents' Isolation

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I am particularly interested in whether most parents of children with Aspergers feel isolated.

 

Until recently I felt very isolated because, firstly I am a single-parent so I have to work (part-time) and look after my son. This means that I am constantly exhausted and do not have time or energy to socialise. I also feel isolated at social events. If we go anywhere I have to prepare my son, prepare the host and then spend the whole occasion anxiously watching my son. Finally, when people talk to me their lives bear absoultely no resemblance to my life, their problems seem so trivial (I wish I had their problems) and because autism is my life, I have nothing else of interest to talk about. If people ask me about my life and I tell, they usually make an excuse to escape or worse still tell me what I am doing wrong!

 

Due to my isolation, I tried to find books etc that echoed my experience but all I could find were stories of success which bore no resemblance to my situation. As I am a research psychologist by training I decided to find out if others felt like me. I placed various adverts and over 200 families responded. Isolation was a recurring theme, as was problems with finding an approipriate education and feelings of being judged. I would be interested to hear from anyone else who has felt alone (even when surrounded by family and friends) because their lives are so different from the norm. I have now nearly completed the a book which consists of six families honest accounts of what it is really like to raise a child with extremely challenging behaviour and complex needs and what they really think of their children (many of us have some quite complex and uncomfortable emotions). Does this ring a bell with you?

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I think this will ring a bell with many people, Anna.

I certainly feel very isolated, increasingly so as the years have passed. It began when my lad started at primary school. As he had no friends, I was not able to 'get in' with all those parents who were busily organizing sleepovers, parties and play dates with the mums of their childrens' friends. Pretty soon, I was standing alone in the playground amongst huddled groups of parents, feeling more and more on the outside. The few friends that I had and met up with when my lad was a toddler gradually grouped up with other parents of children just like theirs and we drifted apart, leaving me friendless, just like my son. I lost more and more confidence over the years and now my only friend is my husband. I spend most days not saying a word to a single soul.

With family members the feelings of isolation are the most painful. Visiting DH's family has gotten harder and harder as our lad has grown older (he's now 15). They have withdrawn more and more from him (and us) and are unable to deal with the embarrassment of his existance. They feel by now he really should have pulled himself together and be like everyone else. When he displays difficult behaviour in their presence they shy away from it and don't know where to look, there are awkward silences and we are left to deal with it with no help. This brings home to us just how alone we are with it really and we always come away feeling more isolated and more desperately lonely than ever.

 

~ Mel ~

Edited by oxgirl

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I think this will ring a bell with many people, Anna.

I certainly feel very isolated, increasingly so as the years have passed. It began when my lad started at primary school. As he had no friends, I was not able to 'get in' with all those parents who were busily organizing sleepovers, parties and play dates with the mums of their childrens' friends. Pretty soon, I was standing alone in the playground amongst huddled groups of parents, feeling more and more on the outside. The few friends that I had and met up with when my lad was a toddler gradually grouped up with other parents of children just like theirs and we drifted apart, leaving me friendless, just like my son. I lost more and more confidence over the years and now my only friend is my husband. I spend most days not saying a word to a single soul.

With family members the feelings of isolation are the most painful. Visiting DH's family has gotten harder and harder as our lad has grown older (he's now 15). They have withdrawn more and more from him (and us) and are unable to deal with the embarrassment of his existance. They feel by now he really should have pulled himself together and be like everyone else. When he displays difficult bhaviour in ther presence they shy away from it and don't know where to look, there are awkward silences and we are left to deal with it with no help. This brings home to us just how alone we are with it really and we always come away feeling more isolated and more desperately lonely than ever.

 

~ Mel ~

 

 

This is eaxctly what I am hearing again and again and it never fails to move me. Parental isolation has not been properly addressed by anyone yet,and you made an important point which no one else has - that we often make friends when our children are young through their friendships, so if our children fail to make friends we become socially excluded too. Being expected to 'grow out of the behaviour' is also common and so many parents (myself included) feel judged, extremely hurt and angry.

 

Anna

 

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I found our local autism support group a lifeline when JP was little. We'd meet up at the local sensory play place on a regular basis & everyone knew that no explanation was needed of our childrens behaviour. I still meet up with a friend I met there more than a decade ago. Sometimes we go out on our own (we are like Trinny & Susannah when we hit the shops :lol: ) but our boys are the sameish age (19/20) so we go out with them as well, yomping over the moors, letting them roam in front of us so we can have an uninterrupted conversation. I've just been really lucky that I met someone who shared the same interestes & our boys got on well too.

 

But yes, with ordinary mums, it was pretty much a non starter.

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I've just been really lucky that I met someone who shared the same interestes & our boys got on well too.

 

I think quite a lot of it is down to luck to some extent. If you find another child similar to your own and they get on and you get on with the parent and you live nearby it must be wonderful. I've not come across anyone like that yet. I used to go to our autism support group playdays and would come away feeling even more lonely as a lot of times people stayed in their own family group just exchanging the odd shy smile and making polite noises but never felt I could get close to anyone or that anyone was that interested really. All the children were so different and varying in needs and interests that I just never found another child who clicked with mine either. Still looking though. :rolleyes:

 

~ Mel ~

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This might be an unpopular opinion, but it is just a personal observation and not a generalisation or about all parents of ASD kiddies.

 

Some parents of ASD kiddies can be, to use Pearl's word (I think - apologies if I'm mis-quoting :unsure:), quite spectrumy themselves and so may find it harder to instigate and follow through on opportunities for social interaction. Therefore an already difficult and distancing situation built on others' prejudices possibly becomes further intensified.

 

But that's just an opinion and I'm not saying anything about anyone before you all jump on me and start arguing. :fight:

 

*runs away*

 

 

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My own experiences are very mixed. When my kids were all at the same school and Bill was very little I made a couple of parent friends though was never part of the general group. I keep in touch with one of these and she's become a very good friend. I also have friends who I've known since school and we are very close (more like family). When we moved and my boys were at a different school to my dd, then it was a different story. I didn't ever really get to know anyone and stood outside the school feeling like a bit of a twit next to all the gaggle of other women. I'm not sure whether that's anything to do with ASD or if the other parents were just bit a cliquey (we live in a village!). Having said that I always manage to get to know people and make friends in other ways other than school, usually those who are a bit different too (different in a good way of course...ie a bit eccentric and off the beaten track). I do think though that in comparison to other more mainstream families (for want of a better way of putting it) we are quite isolated but then again having moved around a lot it's hardly surprising.

 

Flora

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I'm quite fortunate (if that's the right word) because there are a high number of ASD children in our village, and consequently I've found some very good friends. However, there are a significant number of people in the village who I used to be friends with before I had my second son (my eldest is NT). Now I've found that they have distanced themselves from me, which was very upsetting at first. Now I've realised that my true friends are the ones who have stayed close, and as far as the others are concerned, it's their loss!!

 

Nicky x

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Absolutely, Anna!

 

When my DS was growing up I used to feel we lived a sort of parallel existence.

 

I could never identify with the 'success' books...people like Jackie Jackson just made me feel utterly inadequate :(

 

Bid :)

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The feeling if isolation ended for me when we decided to home educate our sons. It was a great relief for 'me' not to have to stand in the school yard with the other Mums who I had nothing in common with. I had not realised just how competitive parents were with each other and how much they talked about what 'Johnny' could do better than 'Joey' until I found myself with two autistic sons. I was probably just as bad as these parents with my eldest none autistic son but I did feel totally isolated. It brought it home to me that if 'I' was feeling this way how must my sons feel :tearful: Not having to try to 'fit in' with the other Mums stopped me from feeling so down about everything.

 

I did manage to keep a couple of my long-time friends but I also had nothing in common with most of my other friends and so we did drift apart. It is not as if I wanted to spend all day talking about autism, it was just that the autism tends to rule your life and what you can and can not do like it or not, including having friends in your home. My best friend understood or at least made an effort to understand but other friends said things like 'well all kids are like that' which made me want to :angry:

 

So I made new friends. I opened a support group and made some of the best friends that I have ever had in my life. We support each other through thick and thin and also have some really good nights out :band::cheers::eat::gather: I decided that I either sat and here feeling isolated or did something about it so I did something about it. Life changes for ever but it does not have to be bad - just different and different can be good :thumbs:

 

Cat

 

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Ive lived here 7 years n have one mate...wouldn't class her as a friend but she is someone il stop n chat too. Hate the school gates and avoid them if possible by walking the dog down(you have to stay a certain way from the gates incae of poop etc).....just got nothing at all in common with any of the parents n they dont understand bout aspergers etc.

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In our area a lot of the friendships are formed during the toddler years, mainly through local toddler groups. It's impossible to sit round talking and drinking coffee though when you are busy extracting your child from the toilets (obsessions with flushing them), acting as a human barrier to stop them climbing up the toy shelves and launching themselves off them repeatedly, or just following your child around the room hoping to prevent the next meltdown. You either do all of those things and just not speak to anyone or you just stay at home and see no-one.

 

During the school years it gets even harder to relate to other parents. Their worries and concerns are a world away from your own. Their hope is that their child will do well academically and be popular. Your own hope is that your child will make it through the day without harming either themselves or anyone else. :whistle:

 

It's not as easy to find a babysitter for a child with autism and so you end up becoming a hermit.

 

So yes I think it can be easy to feel isolated from people around you. It helps when you can find other families in similar situations but obviously that won't always be possible.

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I think this will ring a bell with many people, Anna.

I certainly feel very isolated, increasingly so as the years have passed. It began when my lad started at primary school. As he had no friends, I was not able to 'get in' with all those parents who were busily organizing sleepovers, parties and play dates with the mums of their childrens' friends. Pretty soon, I was standing alone in the playground amongst huddled groups of parents, feeling more and more on the outside. The few friends that I had and met up with when my lad was a toddler gradually grouped up with other parents of children just like theirs and we drifted apart, leaving me friendless, just like my son.

 

~ Mel ~

 

 

I could have wrote this myself Mel

 

SPECTRUMY Mumble not heard this word before ..it sounds good.

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Is there not a place on the forum where we could put Like to meet other parents eg .County Durham or even as specific as

town name??

 

At the moment there isn't a specific place for that, although if there's a demand for it we could think about that. In the meantime there's nothing to stop people starting a thread in Off Topic and saying where they live and asking to meet others who live nearby. :) Obviously the usual precautions should apply when giving out personal information on the public forum.

 

K x

 

 

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I am particularly interested in whether most parents of children with Aspergers feel isolated.

 

Until recently I felt very isolated because, firstly I am a single-parent so I have to work (part-time) and look after my son. This means that I am constantly exhausted and do not have time or energy to socialise. I also feel isolated at social events. If we go anywhere I have to prepare my son, prepare the host and then spend the whole occasion anxiously watching my son. Finally, when people talk to me their lives bear absoultely no resemblance to my life, their problems seem so trivial (I wish I had their problems) and because autism is my life, I have nothing else of interest to talk about. If people ask me about my life and I tell, they usually make an excuse to escape or worse still tell me what I am doing wrong!

 

Due to my isolation, I tried to find books etc that echoed my experience but all I could find were stories of success which bore no resemblance to my situation. As I am a research psychologist by training I decided to find out if others felt like me. I placed various adverts and over 200 families responded. Isolation was a recurring theme, as was problems with finding an approipriate education and feelings of being judged. I would be interested to hear from anyone else who has felt alone (even when surrounded by family and friends) because their lives are so different from the norm. I have now nearly completed the a book which consists of six families honest accounts of what it is really like to raise a child with extremely challenging behaviour and complex needs and what they really think of their children (many of us have some quite complex and uncomfortable emotions). Does this ring a bell with you?

 

Yes I am aware I have become socially isolated. I am also aware that my social skills have suffered, as I dont use them. Therefore if I do find myself in social situations, I dont enjoy them. I find it hard to make small talk and I am aware I just go on about our difficulties. I also find it difficult to ask others for help because of this. I constantly feel I am putting on people if I ask them to fetch R from school or whatever. I cant often reciprocate ... well you can imagine adding another child to our lot would just be madness. I dont know what the answer is, unless you have someone with a similar ASD child living nearby. I have found a nice lady through our school who doesnt have ASD in her family but has suffered difficulties with her own children and she seems to be the best listener, but once again I am careful not to put on her.

 

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Absolutely, Anna!

 

When my DS was growing up I used to feel we lived a sort of parallel existence.

 

I could never identify with the 'success' books...people like Jackie Jackson just made me feel utterly inadequate :(

 

Bid :)

 

Bid,

 

Like you, the Jacksons made me feel totally inadequate. I always felt that they were self-serving and not being exactly truthful. In my book I and the other contributors have said some horrendous things about what we feel because lying is not helpful to anyone. All I, and the other contributors want to do is to support each other and find out what are the key issues that we need to campaign on in order to make things better. We are all so powerless on our own and frankly too tired to fight but together we can change things and I intend to do so.

 

Your parallel existence brought a smile to my face this is how so many of us feel.

 

Anna

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The feeling if isolation ended for me when we decided to home educate our sons. It was a great relief for 'me' not to have to stand in the school yard with the other Mums who I had nothing in common with. I had not realised just how competitive parents were with each other and how much they talked about what 'Johnny' could do better than 'Joey' until I found myself with two autistic sons. I was probably just as bad as these parents with my eldest none autistic son but I did feel totally isolated. It brought it home to me that if 'I' was feeling this way how must my sons feel :tearful: Not having to try to 'fit in' with the other Mums stopped me from feeling so down about everything.

 

I did manage to keep a couple of my long-time friends but I also had nothing in common with most of my other friends and so we did drift apart. It is not as if I wanted to spend all day talking about autism, it was just that the autism tends to rule your life and what you can and can not do like it or not, including having friends in your home. My best friend understood or at least made an effort to understand but other friends said things like 'well all kids are like that' which made me want to :angry:

 

So I made new friends. I opened a support group and made some of the best friends that I have ever had in my life. We support each other through thick and thin and also have some really good nights out :band::cheers::eat::gather: I decided that I either sat and here feeling isolated or did something about it so I did something about it. Life changes for ever but it does not have to be bad - just different and different can be good :thumbs:

 

 

Cat,

 

I home educated too and I was lucky to find one family with two boys whom my son and I both got on.

 

I describe many of my old friends as dormant. I feel terribly let down by a lot of people but at least I now know who ate my real friends and who are not.

 

I have been reading through everyone's posting in this section and can relate to almost everything being said.

 

Anna

 

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Like you, the Jacksons made me feel totally inadequate. I always felt that they were self-serving and not being exactly truthful. In my book I and the other contributors have said some horrendous things about what we feel because lying is not helpful to anyone.

 

:thumbs: Here here. My Dad would call it being economical with the truth. I think that it is important that parents in our situation are not ever made to feel that they are failing because they can not be like. shall we say, 'other families' We had some really dark days with our eldest, were on suicide watch on more than one occasion, but we did make it through and things are now so much better for our son and so because of that better for us. I would never paint a picture of my son which was not accurate because that would help no one at all.

 

All I, and the other contributors want to do is to support each other and find out what are the key issues that we need to campaign on in order to make things better. We are all so powerless on our own and frankly too tired to fight but together we can change things and I intend to do so.

 

Well things certainly need changing and I think that support in probably the key to either sinking or swimming for some of us.

 

Cat

Edited by Cat

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One thing I feel very isolated in and that is my fear for the future. I'm sure it's a common fear but it is sometimes very frightening. I tend to veneer over it and try to live life as normally as possible, but I also wonder if I was less debilated by AS personally then I would be more able to prepare for my childrens' future. Sometimes I feel completely useless and that I should be doing more of 'something' to prepare for 'something' in the future... unfortunately I don't know what either of those 'somethings' are!

 

Flora

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Hi Anna, where can i get a copy of your book, is it a book? i can identify with everything you say. All other families (regular or 'high functioning) seem to want to do, is brag.. Which is off putting in itself

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hi i def feel very isolated as in my closest freind lives 1and a half hrs drive away and i dont drive boohooo

 

think we do end up very spectrumy as parents with asd children........

 

it wud b gr8 to meet up with other parents for a cuppa and chat

 

love donnaxxxxxxx

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I can so relate to the whole ''isolation'' thing...we have found that in the last 7 months that hubby's family are keeping their distance away from Jay.

 

hubbys mum just doesnt offer to have him there anymore and she only sees him when we take him there. and one time back in summer, we were down there, hubs sister was there with her ''perfect'' family and jay went off on one as he always does..and she took herself off to do the ironing and looked a few times but hardly said anything...then when we left it was a look of ''thankgod for that, we can have peace now''

 

We dont go out either, we have been called anti social by family members, but they simply wont accpet that jay cant handle social situations, it is us locking ourselves away apparently. :wallbash:

as for friends, when jay got diagnosed it took me around 18 months to come to terms with it, and even now im not sure i have...anyway she said to me one day when i got teary..''have him adopted if you dont like it'' i was horrified that wasnt at all what i was thinking and i thought omg!

 

however when her daughter may have had to of worn glasses when she was 4, she creid before she took her to the opticians as she said she didnt want her daughter picked on and how horrible is it for child to wear glasses...

 

well if all i had to worry about was whether my child was wearing glasses i would be a happy bunny...instead i have a severley disabled lower functioning spectrum child who will never leave home, but im not allowed to be upset!

 

so yes i know all about isolation...

 

hugs to all >:D<<'> >:D< >:D<<'> >:D< >:D<<'> >:D<

 

love Julieanne xx

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:thumbs: Here here. My Dad would call it being economical with the truth. I think that it is important that parents in our situation are not ever made to feel that they are failing because they can not be like. shall we say, 'other families' We had some really dark days with our eldest, were on suicide watch on more than one occasion, but we did make it through and things are now so much better for our son and so because of that better for us. I would never paint a picture of my son which was not accurate because that would help no one at all.

 

 

 

Well things certainly need changing and I think that support in probably the key to either sinking or swimming for some of us.

 

Cat

 

Cat,

 

Now suicide, don't get me started!! In the book one mother tells the horrendous story of her poor son who committed suicide(I am still upset by this one). It is becoming very apparent that the psychiatric services DO NOT understand Aspergers and frequrntly offer so-called care which is likely to exacerbate the problem. The care also seems to have a punitive element to it. One of the things (there are so many) we want to do is ensure that psychiatric staff (and the police - inappropriate criminalisation is another problem) have received training in Aspergers. From the parents I spoke to there also seemed to be a high incidence of suicidal thoughts - parents often feel overwhelmed, exhausted, isolated and feel that there is no where of any use to turn. Support is the key but not the judgemental support that is all too frequently offered.

 

If anyone has any thoughts about key areas to research/campaign eg. criminalisation, please let us know on www.asteens.co.uk (we are not properly up and running yet but will be soon). After Christmas I want to start desigining questionnaires so that we can find out what people really need us to change. I can't change everything but promise I will die trying!!

 

Anna

 

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Hi Anna, where can i get a copy of your book, is it a book? i can identify with everything you say. All other families (regular or 'high functioning) seem to want to do, is brag.. Which is off putting in itself

 

 

Lisac,

 

I don't suppose that I should give out the book's details because it may appear as blatant publicity but www.asteens.co.uk will have details when it is out. If you (or anyone else) do buy the book PLEASE let me know whether it reduced your sense of isolation (and for many guilt and inadequacy). When I started out researching for this book I was genuinely so low that I had nearly given up and most people who had children with Aspergers seemed to be upbeat and positive about their children which just intensified my feelings of being alone and useless. The book is also intended to gift to family, friends and professionals who just fail to 'get it', believe me after reading this one they will be shocked! I want as many people to have access to the book as possible so please ask your library to stock it. I have been on a low income for years and I don't want people on a budget to be denied the support that we all deserve. I could rarely afford the books which I needed to read and the library was my saviour. The book is our chance to band together via the website and collectively change the things which are wrong (education is a big one)

 

I cannot tell you how many people have mentioned how insensitive other parents can be. We live a life on a different level to most people and it is not based on normal social values, Aspergers strips away the rubbish, the competitiveness and we are left with the bare bones of existence - we are left with what matters.

 

Anna

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One thing I feel very isolated in and that is my fear for the future. I'm sure it's a common fear but it is sometimes very frightening. I tend to veneer over it and try to live life as normally as possible, but I also wonder if I was less debilated by AS personally then I would be more able to prepare for my childrens' future. Sometimes I feel completely useless and that I should be doing more of 'something' to prepare for 'something' in the future... unfortunately I don't know what either of those 'somethings' are!

 

Flora

 

 

Flora,

 

You are not alone in fear of the future and we are right to have concerns. Most of us spend so much of our children's lives fighting for them and we somehow naively think that when they grow up everything will be normal and it isn't. We all need to plan for our futures and our children's futures. I would love to know what sort of accommodation etc parent's would like for their children. I fancy a small community where we all have our own flats, houses etc but where there are communal areas too eg. a shared vegetable garden, maybe even a cattery or kennels etc to offer employment opportunities. It woud be so nice to live somewhere where oddities are the norm and where I could die safe in the knowledge that my child was safe, happy, accepted and protected. Anyone got a spare million?!! I fully understand how you feel and it is the very fact that we don't know what to do or how to do it that makes us feel like failures.

 

Anna

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I can so relate to the whole ''isolation'' thing...we have found that in the last 7 months that hubby's family are keeping their distance away from Jay.

 

 

 

hugs to all >:D<<'> >:D< >:D<<'> >:D< >:D<<'> >:D<

 

love Julieanne xx

 

Julieanne,

 

There are so many people who have been severely let down by family and friends. The ignorance and judgements we all face daily just compounds an already tough life.

 

I had a situation where I was having to do grotty cleaning jobs just to get by and meanwhile home educating my son, not sleeping, and managing some pretty horrendous behaviour and the person I cleaned for (large house, stables, large field, plenty of land etc.) who knew of my problems, told me that she was a bit down because the second pony that they had ordered was going to be a few weeks later than they had hoped - what can you say!!

 

anna

 

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Flora,

 

Most of us spend so much of our children's lives fighting for them and we somehow naively think that when they grow up everything will be normal and it isn't. We all need to plan for our futures and our children's futures. I would love to know what sort of accommodation etc parent's would like for their children. I fancy a small community where we all have our own flats, houses etc but where there are communal areas too eg. a shared vegetable garden, maybe even a cattery or kennels etc to offer employment opportunities. It woud be so nice to live somewhere where oddities are the norm and where I could die safe in the knowledge that my child was safe, happy, accepted and protected. Anyone got a spare million?!!

Anna

 

Nice dream. I think it would take a bit more that "a -- million".

 

I do think of the future, I will be an OAP when my son is 18, but don't dwell on it to much.

 

 

 

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I am particularly interested in whether most parents of children with Aspergers feel isolated.

 

Until recently I felt very isolated because, firstly I am a single-parent so I have to work (part-time) and look after my son. This means that I am constantly exhausted and do not have time or energy to socialise. I also feel isolated at social events. If we go anywhere I have to prepare my son, prepare the host and then spend the whole occasion anxiously watching my son. Finally, when people talk to me their lives bear absoultely no resemblance to my life, their problems seem so trivial (I wish I had their problems) and because autism is my life, I have nothing else of interest to talk about. If people ask me about my life and I tell, they usually make an excuse to escape or worse still tell me what I am doing wrong!

 

Due to my isolation, I tried to find books etc that echoed my experience but all I could find were stories of success which bore no resemblance to my situation. As I am a research psychologist by training I decided to find out if others felt like me. I placed various adverts and over 200 families responded. Isolation was a recurring theme, as was problems with finding an approipriate education and feelings of being judged. I would be interested to hear from anyone else who has felt alone (even when surrounded by family and friends) because their lives are so different from the norm. I have now nearly completed the a book which consists of six families honest accounts of what it is really like to raise a child with extremely challenging behaviour and complex needs and what they really think of their children (many of us have some quite complex and uncomfortable emotions). Does this ring a bell with you?

 

 

I don't socialize at all with other parents of autistics, his school is 40 miles away, his peers from all over, apart from Xmas concert (Tomorrow), that is the only time I will see them. Locally he gets on with most people, especially local shops who think he is lovely and spoil him a bit, because he is always smiling and polite. They help too in encouraging him to choose things and pay for them and they help him understand money changes and things, he even got a few cards from some of them ! We are deaf parents anyway so socializing is a moot point for us, but he knows his mother's deaf friends and he goes to the clubs with her and they make a fuss of him and accept him too. He is now at the teen age, and attending an all non disabled or autistic youth club, so we are crossing our fingers he can now establish some sort of relationship with them, which he has not been able to do up until now. I never worry what other people think, at the start I did, then thought if they have a problem, they need to sort it out ! I suppose in fairness my son is not the confrontational type, is more the passive autistic and quiet one. He behaves very well these days, that is down to his special school I think, he had little understanding from neighbours or their kids, we had to move, because they kept on ridiculing him. even attacked him at two points and threw things at him and us. Where we are now the neighbours are great and again tend to spoil my lad and give him things. They give him and us space, which is great. We are isolated to a degree, we manage it... the boy comes first.

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I fancy a small community where we all have our own flats, houses etc but where there are communal areas too eg. a shared vegetable garden, maybe even a cattery or kennels etc to offer employment opportunities. It woud be so nice to live somewhere where oddities are the norm and where I could die safe in the knowledge that my child was safe, happy, accepted and protected.

I'm afraid I have to disagree and the suggestion that something like this is 'right' for people with ASDs upsets me - I'm an individual and that's how I want to be treated and have my needs assessed. I want the opportunity to be as much a part of society as anyone else and being closed off in a separate community, whilst it may offer 'protection', is not a long term answer to increasing acceptance and allowing individuals to develop. Employment statistics for those with ASDs are woeful and the suggestion of particular 'employment opportunities' on-site as it were intensifies the widely held opinion that we're either not capable of work or that there are only particular things that we can do. As for 'oddities' being the norm, again, closing off means society continues to live in fear of difference (and it continues to be seen as right to segregate) as it is not exposed to the range of human behaviours which are a normal part of our (as in everyone's) existence.

 

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I'm afraid I have to disagree and the suggestion that something like this is 'right' for people with ASDs upsets me - I'm an individual and that's how I want to be treated and have my needs assessed. I want the opportunity to be as much a part of society as anyone else and being closed off in a separate community, whilst it may offer 'protection', is not a long term answer

 

Please do not think that I am suggesting that this is the answer for everybody. One of the things I have learnt is that we cannot offer blanket solutions for all. I am offering this as one model that would suit my son and me as I currently have to control every aspect of my life to meet my son's very complex sensory needs. My son has absoultely no desire to mix in a neural typical world which lays him open to bullying. He is totally true to himself and will not compromise to fit in which means that most people are intolereant of his more extreme qualities.

 

I agree that we need to encourage the acceptance of difference but in reality very many people do not seem to be able to understand something outside of their very 'average' perceptions. I have tried all my life to fight for the right to be different and I have only ever been tolerated.

 

Sorry if I offended you.

 

anna

Edited by Anna Van Der Post

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There should never be a blanket solution just as there should never be a blanket policy in operation. That is one of the things that I fight against most. We need a choice and as much as we might want to wrap a blanket around our children/adults then I do not believe that this does them any favours in the long term either. Having two sons with an ASD has taught me something very valuable and that is if you know one person with an ASD then you only know one person with an ASD. My two sons could not be more different although neither would like to live in a totally ASD community. My eldest has no desire to be like everyone else, never has done and never will do. But he also has no desire to have friends with AS like himself. He does not see himself as being anything other than himself and he has resisted any opportunities given to him to mix with others with AS. My youngest does want to be like everyone else. He wants to be in there amongst it like every other child his age and he does want to acquire the skills he will need to do this. He has NT friends and friends with ASD is happy to go to both sets of youth groups it makes no difference to him.

 

If we had communities where large numbers of people with disabilities were all living together I think that these communities would become targets for those who will never care about what they do or who they do it to. The vast majority of people are OK and those who are not would not be out off by the fact we were living as a community and were doing so because we wanted to feel protected.

 

When you start looking for solutions to problems, and there are so many problems that we face it would probably take us days to list them, we have to look at what is and would be possible and remember that we are all individuals and will therefore all have very unique needs. I also learnt early in the day that if you embark on a campaign whereby you campaign for your own kids needs people stop listening to you very quickly. I fight for the needs of every child to be met within school. I home educate.

 

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Hey Anna,

like everyone else, this topic is something I can really identify with- and not in a good way! When my eldest son (dx'd AS/ADHD) began displaying odd behaviours and reacting in a very untypical way to his peers.....(and anyone else, pretty much around him), we withdrew from the world around us to a huge degree.

To be brutally honest, at the time this was mainly because I was hugely embarrassed by my son's behaviour when we were out- people in the wider community have no idea how damaging their tuts or bold statements of disapproval can be.... :(

Yes, I knew my son probably had a condition, and was trying to access help for us...or get someone to take my concerns seriously, even..... but in all honesty we stopped in because I found the whole experience so emotionally and physically stressful that I felt ill and drained. I didn't like being stared at or have my son or my parenting skills judged by strangers, and I was also very embarrassed by the whole thing.... Not trying to say it was right of me to feel embarrassed, but I did, regardless. A lot of ugly emotions reared their heads around this time and it was not a nice experience....

 

We withdrew from what family we had for the same reason....even though about half of my family were understanding, it could be such a trial for Cal and me to participate in family events that we withdrew from them. (My doing, again...)

And I'm sorry to admit that, because of the stage of diagnosis we were at, and the stage of acceptance I was at, I did not enjoy seeing the other NT kids running around, being boringly average and predictable. At that point, I envied their parents, I felt sorry for my family and everything just seemed so bl###y unfair I could have screamed.

I could not go out to work because, as someone already said, there is no childcare availability for kids like ours out there. Even when Cal started school, I was constantly being called back to pick him up- 9.05am was the record, I was still in the playground!! :rolleyes: What employer would be able or willing to accomodate that?

And the playground mafia were dreadful- like the others, there were one or two other parents that would talk to me, the others preferred to talk about me.

I had a handful of close family and friend that I could confide in, but even they could not understand fully what was going on for us at the time, not having been there themselves....And I've never been that great at 'opening up' either....

Added to all the above was my ex's denial that there was something 'wrong' with his son, his inability to follow the suggested behavioural techniques suggested and the subsequent breakdown of our relationship. There are only so many fronts I can fight on at once!! :P

It was a wretched, lonely period for me, even though I loved and cherished my son dearly. I think, in a previous, similar thread, I said it's as if there's a great, whistling void between 'them' and 'us'- and how can you expect others to understand something they've got no experience of?

It didn't improve overnight, but things are better now in that we socialise a bit more. Cal will never 'get' clubs and suchlike, I don't think, and as things stand, he has no wish to join in things for the most part. It's still difficult going out because his behaviour is different to that of his peers, and while I'm no longer cringing when things go wrong, there's still that residual trepidation when trying new things....

But I think that feeling of isolation is something I'll never shake off, for the reasons many have already stated. And I find it galling, when I hear other parents go on and on about what they perceive to be a great difficulty or problem...

In fact, lately, my closest friend, who has, in fairness, been there every step of the way for us, has made some comments because I'm considering a residential secondary placement. It was dreadfully hurtful and I did try to convey that, but I can't seem to make her understand the importance of this choice......My feelings come second to doing what's best for Cal, and it feels like she thinks I'm considering this to make life easier for me......or that I don't care as much for my children as she does for hers, simply because I would consider this move and "there's no way (she) would dream of it!"

I just stood and looked at her, feeling the wind whistle down that void between us that I was talking about before.

 

But I come on here, and post my gut-wrenching switherings over what to do, and BINGO!!!!

I am surrounded by expressions of empathy and understanding of my predicament.

Even shared similar experiences!! Its like a bite of manna!

 

 

Have I spouted so much blibber-blabber again? Sorry, but that was a bit cathartic!!

Edited by pookie170

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Anna, the idea of a small community, would also be ideal for me and my son. The Autism Trust are starting to set up something like this. www.autismtrust.com. I think the founder has an autistic early teen. The only problem I see with it, is these things can be very 'cliquey' and selective, and I bet wont cater for the more challenging autistics or families with no money. ( its ok if you are high functioning and/or parents have money/donate/fund raise/lick ######) I hope im wrong, but I know how these things turn out.

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Pookie 170, i love your expression 'feeling the wind whistle down that void between us' it is SO true, what a fantastic description, dont mind if i steal that, as it says it all :clap:

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Is there not a place on the forum where we could put Like to meet other parents eg .County Durham or even as specific as

town name??

 

How about 'partners of' as well, bearing in mind the isolation which many of us partners feel too; I can certainly identify with lots of what's being written here (not just to do with having moved into a new area - see my 'feeling isolated' thread started the other day, a coincidence or what, AND I live in Co Durham!). I'm trying to set up an informal group for partners in this neck of the woods so will either add it to/start a thread or PM you in the first instance.

 

We're not alone, cue the extra-terrestrial music. :rolleyes:

 

Billabong

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Yes I feel very isolated, and like many of you have said hate the school gates where I have nothing in common with the other mums. My life is nothing like theirs. I have attended Earlybird and Earlybird plus and although I found them very very good I also felt very guilty expressing the way I feel and the problems I encounter as on both courses I have been the only parent with a child that is verbal and my life is a walk in the park compared to all the other parents I have met. we had two weeks of talking about our children and our lives, I missed the second week and when I went to lunch with one of the other mums whos story I had missed, I asked her about her life, I was humbled by what she told me.I felt ashamed that I had talked about ds and how sad I felt as I am very very lucky. So the isolation is there even with other parents that have autistic children, if that makes sence?

No one I know understands. I fear the future more than anything and just wish someone could tell me how things will pan out then at least I would know.

I am a single parent and find that quite isolating in itself, We don't do the "normal stuff" people keep asking if ds is excited about christmas and I tell them no he hates it due to the many changes it brings and is cross that some people say santa and some father christmas he is totally confussed.

I think it is also isolating being the mum that consantly has to complain at school, and I am an autism bore( self confessed!) I live and breath it as all of you do and I know I must be boring to talk to because my topic is always the current fight I am having with school or whatever is going on that ds needs not being met!

Infact the only place I do not feel isolated is on this forum :thumbs:

 

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