Finding equilibrium - how to protect

[call me jaded]

My children are young. We do nothing as a family which is not autism friendly, or indeed baby friendly. My children are cocooned. We need to broaden our horizons.

 

I re-read the Digby Tantum AWARES paper yesterday. Here is what he wrote on Social Marginalisation:

 

People with Asperger syndrome experience the grossest kind of bullying, and may sometimes pay that back by retaliatory bullying of their own.  Despite a growing public awareness of this, schools still seem paralysed by the problem.  Many people with AS, like other adolescents, feel ashamed of being victims and do not therefore report bullying which increases the school?s difficulties.

 

Paradoxically, many people with Asperger syndrome are also marginalized by being indulged. Carers who are only too aware of the distress of having this condition are sometimes willing to allow uncaring or exploitative behaviour by the person with Asperger syndrome thinking that they are in some way making up for other people?s uncaring or exploitative behaviour to the person with AS.

 

It is rarely the case that this helps.  Often, the consequence is that the person with AS becomes even more confused about social consequences, but all too ready to put their own interests first, and those of others second.  One painful lesson that we all learn in adolescence is that we generally get back what we receive.  So being thoughtless is usually a recipe for social isolation and rejection rather than social success.

 

If we want to cure Asperger syndrome, as of course we all do, we must accept that a complete cure is beyond us but we can do a lot to ameliorate it in later life.  This means tackling the twin problems of bullying and over-indulgence. The only way to do this is to treat a person with AS with respect, and to enhance their experience of themselves as agents, who have the power to make a difference to their own fate. 

 

This means more awareness of bullying, and better means of dealing with it.  But it also means more awareness of special indulgence for the person with Asperger syndrome.  I do not mean special measures to help someome with Asperger syndrome get round their cognitive difficulties, but that kind of emotional indulgence that we might extend to an overtired child. 

 

Here, too, counselling can help as can support groups.  But we also need a change in the culture.  People with Asperger syndrome have a right to be understood and valued, like all of us, but we should not assume that they need our pity or our indulgence because treating someone that way, far from curing them, simply enhances their difference and their incapacity

 

 

We as a family are marginalised socially through choice. You could say it's our indulgence. It's now time to dip our toes into the Big Pond of socialisation. Let's hope the water's warm.

 

First hurdle. What are we going to do?

 

Suggestions for a non-verbal 11 year-old, please...

[Suze]

Hi jaded that quote was really interesting...gave me a lot to think about.We find ourselves in a similar position, ie as a family there are some things my daughter would love to do , but my ASD son would hate....so we don,t do them.I,ve found as they get older we do things seperately so everyones needs are catered for.My son is indulged I,ll admit that, we give him , more time, more encouragement, more help,......and I feel really guilty for admitting this.But managing my sons behaviour is so tenuous that we do our best to avoid anything which makes his ASD worse. He has struggled to do the things my other 2 kids find easy and I really feel for him.Perhaps I need to take a long hard look at our situation,and re-evaluate.Interested to hear what others think.

[call me jaded]

Yes, I've been mulling this over for about a month. We definitely avoid stressful situations as much as we can.

[sarahjane]

I was discusing this with our group I am on the help course with at the present, and realised that we usually divide as a family and therefore H rarly goes out to the shops etc or anywhere unless he wants to- and usually he is more than happy to stay at home and either dad or me go out with our other child. For the first time I had to take H out and he was awful- worse than before. I think i am going to make an effort to take him out for short structured periods of time and not always take the easy route- but you do feel mean taking him into a situation you know will distress him.

[Noetic]

A local or regional support group sounds like a good start, depending on whether or not they offer activities. There might also be more general groups for children with disabilities and their parents, I have found such environments tend to be more tolerant and approachable than trying to socialise 'in the big world' without a specific context.

[oracle]

I suppose as a family we are more than guilty of indulging our two ASD sons. Yes I have kept David away from situations that I knew he could not handle and would find stressful - BUT - while doing that have worked hard at him being able to express his feelings and emotions. It has taken me years of this kind of education to be able to say that it has gotten us anywhere. But today I firmly believe that its has and maybe a little over protection is not such a bad thing, if it is coupled with an undertaking to help the child to be able to cope in situations that it would otherwise find difficult. I will however not be bullied by either of my sons.

 

If I may I will explain? When we were forced to remove David from his Educational setting, and we were forced, then I quite firmly pulled the shutters down around us as a family. I was told that I was doing everything wrong and yes indulging my son and allowing him to call the shots. We had times while David was still in school when I was physically dragging him down the stairs to make him go to school. Who was gaining from this situation? I believe no one. I believe as parents we should be testing the limits of our children and encouraging them to push at their barriers and restrictions that they often place on themselves. But I also believe it needs to be done slowly it can't be rushed. David was a total nightmare from the ages of 12 to 16 and it was uphill all of the way. I dreaded ever having to take him anywhere. However today he proved that given time and encouragement our young people could eventually overcome many of their fears phobias and dislikes and effectively communicate with us.

 

David went for his Eye Hospital Appointment today. This is something really big in David?s life right now. Yes he was stressed. Yes he paid several visits to the loo but he was able to tell me himself yesterday how he was feeling and what it was doing to him. He could not do that years ago, he would simply melt down, and I was left guessing and often getting it wrong. We were able for the first time ever to have a plan of action that David talked through and felt comfortable with and that included me doing the talking for him, because he knows that when he is stressed he stops listening and that means he often does not take in what has been said. Even though I had spoken to the Consultants Secretary about David she had not even written down that he has Aspergers Syndrome. So because we had discussed this I was able to tell the Consultant without me feeling that I was doing something wrong. I knew that David was happy for me to talk about him. It's taken years for us to have this kind of shared meaning and communication and I am so happy right now. And so proud of David. The worst time for David was always after he had been to an appointment as he always came home and then offloaded. Not this time. He is calm and going about life as normal. It has been a long time coming but it has finally arrived.

 

My own very personal belief is that some of our children do need time out before they can handle time in. If that makes any sense? I realise that this makes life very difficult for their NT siblings and that is why every family living with ASD should have a back-up system so that our NT kids do not always have to take a back seat or share their parents. Of course David is verbal and makes for a whole different ball game from having a non-verbal child or adult.

 

Years ago my husband wrote a poem which included the words. 'A little time from life to hide - where I may build my social side' I really do believe that some of our kids need that time.

 

Sorry Jaded for high jacking your thread and sorry Digby for sort of not agreeing with you.

 

Carole

Edited November 21, 2005 by carole

[bid]

Not much help, but I don't think the NT world is all that great anyway

 

Bid

[call me jaded]

Carole I read all your posts with interest. It's fairly obvious that you've done a great job re-building confidence and allowing time out to let wounds heal.

 

We do all the disability stuff. In fact our social circle is almost exclusively that. Now attempting to venture into the big bad world.

 

I'm wondering if we're doomed to failure sending him to something like Boy Scouts. His receptive language is good and he really, really wants to be part of a large group of boys. He will not follow instruction generally - his school and my husband and I can get his co-operation but other people struggle, even basic things like keeping his shoes on, sitting down. It would have to be planned, people trained.

 

I was hoping that people here were going to regale me with success stories...

Edited November 21, 2005 by call me jaded

[Kazzen161]

I believe that our children need to be pushed to go a little bit outside their comfort zone sometimes, BUT only when other aspects of their life are not causing them anxiety/stress, and only with preparation.

 

So if a child is having a bad time at school, it is not the time to push him to go to a birthday party.

 

If he is relatively relaxed, don't just suddenly decide to take him to a birthday party, without having done preparation before hand (telling him about it in advance, describing where it will be, what will happen, what will happen if he finds it too much, etc) - I am sure this is the sort of mistake we have all made once!

 

That is why it is so important to get the educational placement right - how can you expect the child to take on the world outside, when he has already had 6 hours of misery at school?

 

I think parents learn to read their children - to know when they can risk pushing them a little bit and when it is time to "cosset" them, but we can all make mistakes both ways.

 

Karen

[Kathryn]

I agree with Kazzen and identify with a lot of Carole's situation. I don't think parents can force the pace, and preparation is so important. Children need to feel safe before they can step out.

 

My daughter spent most of the past 15 months in virtual isolation - barely leaving the house, let alone meeting other people. We could not have made her do anything remotely adventurous during this time, she needed complete protection. She emerged from this at her own pace and it really is all credit to her as she had NO professional help. By September she was bored and desperate to do something new. She is now in her third week at college finding her feet again and trying different experiences. She used to go into meltdown if anyone knocked on the door. Last week she went for a pub lunch with the people on her course and is talking with enthusiasm about the Christmas meal they are going to have there (she's already chosen her courses from the menu!) She is getting a lot of support but I would never have believed this possible last year. She is doing this well because she is ready to re-engage with the world on her terms: there are still problems but a lot of the old fears have gone and she feels more in control.

 

Jaded, Scouts could work as your son really wants to try it, but it would depend on the sensitivity and adaptability of your local group - you'd obviously have to set it up carefully. If it's any encouragement I know of a boy with AS in our area who has joined the sea cadets and is loving it!

[call me jaded]

He'll love it, it's me that's going outside my comfort zone

[elainem]

I am not sure if I am on the right track here but here goes. Our twin ds are now 5 one has ASD, not been placed on the specturm by Psych but not deemed to be HFA - I would say somewhere around the mild to middle of the functioning end if such a thing exists.

 

We got dx at 4.5 and had know ourselves some time before. However even before our own awareness we always know something and I always had a sense that it was important to give my ds as many experiences as I could, because I felt that he needed the experience to know these things were ok. Not making lot of sense.

 

Ok, for instance last year we went to the Xmas market in Manchester - loads of sensory input esp noise and smell. My ds was distraught - but my other ds was distraught at the thought of going home. So we walked round and I held ds close and reassured him. Only helped a bit. We then walked up the road to Exchange square where there was hige ferris wheel. Ds could not walk past it or even look at it. This year he asked to do it all again, so we did. The marker was still a bit scary for him but much better and he WENT ON the ferris wheel and had a great time.

 

Sometimes I wonder if I am doing the right thing because I do push him out of his comfort zone, not too far and I am always there to reassure. In every instance I have done this it has paid dividends, maybe not straight away. I firmly beleive my ds has to be challenged to some extent, if he wasn't he would be in his safe little cocoon at home.

 

Not sure if this is the sort of thing you meant

 

Elaine

[elainem]

sorry about the typos didn't know how to edit

[call me jaded]

I was discussing this a couple of weeks ago at a support group. Because our other children are aged 6, 4 and 2 it takes three adults for us all to go anywhere successfully. Having gathered three adults we don't waste this by going to the supermarket. We go to Chessington and still manage to lose our autistic son (twice).

 

Right, I'm going to start this weekend. Whilst number two son is at his party, number one son and I will go somewhere a bit challenging.

[nellie]

My two sons are now adults, 27 and 25. The eldest was diagnosed with autism at 19 the youngest was diagnosed with AS at 24.

 

Although I didn?t know they were autistic when they were younger, I did have a rough idea of what their needs were. What I didn?t know was that I couldn?t normalise them. I would try again and again to get them to do the things that other kids do, but without a lot of success. Now they are adults they can tell me what their comfort zones are, they can tell me what they are and what they are not prepared to do. I now realise they probably knew what their comfort zones were, they were just unable to express it. Me, I made the mistake of thinking I knew best!!

 

I now allow my sons to take the lead, at their own pace, in their own time. I try to give them respect and acknowledge their wishes. I try not to put too much pressure on them and give them support to make their own decisions.

 

My husband has AS, he says yes, he can be persuaded to try doing something outside his comfort zone, and he may be successful but it doesn?t mean to say that the experience is now in his comfort zone. The next time that situation arises he will be back at square one and have to be supported again. The alternative is to remain within his comfort zone which is his preferred option.

 

If I had to do it all again? I would take my family out of their comfort zone, but as soon as it became obvious that is was too much for them, I would stop, not carry on hoping it would get better. From experience, trying to 'normalise' them has proved to be detrimental to their well being.

 

 

Nellie xx

[sue1957]

Jaded,

 

When my son was 4 one of his many problems was he didn?t want to go outside. If we managed to coax him out into the garden to play, somehow within minutes there would be meltdown. Someone had said something, this was wrong, that was wrong. No matter how comfortable we tried to make it, he would always finish up back inside.

 

Within days of removing fluoride, he said to me �Mummy I?m going outside to play.� For a moment I was speechless (but not for long! ) but off he went, looking at things in the garden, quietly exploring at his own pace. I watched him from the window and He came back in within a few minutes, but it was the start. For a long time afterwards, fluoride has been the great evil, but it was only the start of our ongoing journey.

 

The only way I can describe it is that in order for him to reach out into the big wide world, I make sure that nothing -literally -�gets on his nerves� at home. If I can manipulate his environment at home, he doesn?t need us as a family to manipulate our own behaviour to help him function. If his nervous system isn?t being bombarded at home, he can recover enough inside the home to step outside his comfort zone with less stress.

 

We use no air fresheners, fabric softeners, or anything chemical we can do without. We use non-toxic toiletries, soap powders etc. Everything that he breathes in at home, or that touches his skin needs to either be �real� or at least as non-toxic as possible. It?s the same with food, no artificial anything, what he sees, tastes, smells, and touches is what he gets (and he is no longer food phobic). Being at home gives his nervous system a complete rest.

 

We have extended the system into other areas, calm coloured walls, better lighting, etc. When his nervous system is under-aroused, he becomes restless and bored and will look �out there� again, with our support. By the same token when it is looking like everything �out there� is starting to get too much for him, he can take a breather at home until he feels better, and if necessary we will batten down the hatches at home for a while.

[Suze]

My son has tried, tae kwon do, swimming, beavers, cubs, cross country running,choir singing, , and quite a few more.He has always expressed an interest, so we,ve given it a go.........cub camp , etc.He,s tried it but never really enjoyed it and always packed it in after a few weeks or months. ......I feel sad for him in a way but he does,nt feel he,s missing out, he knows what he enjoys ,......which is usually building stuff in the garage.......making a ramp for his bmx......but I,m really glad he gave everything a go.....just a shame he did,nt love it.

[call me jaded]

The final two years of my son's primary (special) education were (frankly) a bit of a waste of time. Not the school's fault, but he was alone in his needs amongst his peers. They tried hard, but didn't have the resources. I spent a great deal of every weekend calming and de-stressing only to have the same problem by Tuesday. Fortunately he has been in a more suitable environment since September. We have been more or less stress free since the end of July, except for transport but it's me that's stressed about that.

 

We do quite an extended GFCF diet and, like Sue, no additives or chemicals. It really makes a difference. So it's time to step out. I think I'm going to make him come for a coffee with me.

[Suze]

Hi Jaded, sounds like now might be the right time to spread his wings a bit.....hope that coffee goes well .Glad he,s less stressed, just shows what the rght environment can do .

[Kathryn]

He'll love it, it's me that's going outside my comfort zone

Know what you mean. Although my daughter has done loads of things in the past couple of weeks we never thought she was capable of, like going into town, to garden centres and pubs (at this crowded time of year) it will be a long time before we as a family are able to do these things with her again. I just feel really stressed when I'm out with her - it sounds silly but I feel everyone is staring and she can be quite on the edge sometmes - it feels like having an unexploded bomb with you. I find myself constantly scanning for signs of possible trouble. It's exhausting, so hardly surprising that we just end up staying in.

[sue1957]

Does anyone else have a problem with the timing of an activity? My son?s only regular activity outside of school is a half hour swimming lesson, on a Monday evening. He was water phobic at 4, so having lessons at all is a big step forward. Having nearly drowned myself as a child, I think it?s an important life skill, and I also wanted him to have a head start with swimming before he did it with the school. It has been worth it, he has more self-confidence when going with the school, because he can already swim. He?s done it in his own time before he �needed� to learn it at school. My daughter learned to swim until she reached a certain level, and then was allowed to drop it. He knows he can do the same. I thought he wasn?t keen on swimming, and on a Monday evening it?s a problem getting him there, although once there he is fine. Now he is doing it with the school he?s telling me the night before that he?s got swimming and will need his kit. No problem whatsoever. It seems it isn?t the swimming.

 

I wonder if its because at school he does swimming in the morning, and the timing just suits him better. He is less keen to go out in the evening. Maybe after a day at school he just needs to �batten down the hatches� himself. He has never shown much interest in after school clubs, joining cubs or anything, and perhaps that is the reason. He only gets one lot of homework a week, and he does that on a Saturday morning usually, after school onwards is not a good time.

 

Maybe he thinks he has to do enough at school. Occasionally now he will ask if his friend (similar gentle personality) can come for tea. He does go to birthday parties now, but for his own he had his friend round for a birthday tea, and then on the Sunday the family went to Longleat. I think that?s just his style. He will step into the world now, although for unexpected invitations at short notice he will often say no, but that is fine by me. At infants he used to hate homework that meant reading aloud, but with speech problems that?s understandable. It put him off reading for pleasure. I don?t make him do it at all now, he has enough of that at school. Now he is often seen with his head in a Harry Potter book, or reading a comic. He's getting there, and he is definately more relaxed.

 

A really positive experience this year though is that in September my husband and I had the chance to go to Spain for a few days, but we couldn?t take the children. We hummed and hahd about whether we could go, talked it over with the children, and it was OK by them to go. They went to stay with my eldest son and his (teacher which helps!) fianc�e. He?s got a better computer consul and different games, bigger tv etc so my youngest son chose that rather than his brother coming to stay here. Maybe it was having the choice, the preparation work took a lot of time, but he stepped out of his comfort zone big time. They went to school as usual, and we were on the end of a phone if they needed to speak to us, (and they didn?t!) and we emailed.

 

Four years ago there was no way we saw that as ever being possible. Its like a huge great weight is finally being taken off our shoulders. Good luck Jaded with putting your toe in the water, let us know how you get on. <'>

[Kathryn]

Maybe after a day at school he just needs to �batten down the hatches� himself. He has never shown much interest in after school clubs, joining cubs or anything, and perhaps that is the reason.

I can identify with this. Once my daughter went to juniors she didn't want to do anything after school either, except come home and read: unlike her peers who were doing various clubs nearly every day. I think she was using up all her resources to cope with school- it must be rather like being in a foreign country and trying to understand the language and customs all day long.

[Guest hallyscomet]

Hi,

 

I can identify with you all. Some things that have been suggested to me are that our AS children don't work well in team situations. So try and get them involved in activities, hobbies or exercise where they are only competing against themselves.

 

Like golf, and golf driving range. Swimming, ring the pool and see if there are times that are quiet, not many people there. Anything in this sense, that is stress free.

 

Weight resistance training, walking, is there somewhere they feel okay on quiet times. Is there a kind friend that would go along with them.

 

Hope some ot this helps. The important thing is not to push to hard and criticise as they will only regress if you do this. Let them lead the way, but keep planting some ideas there where possible. Going for a drive together somewhere scenic, indulge in icecream. Rewards Good luck, be gentle.

 

Regards

Hailey