Minxygal

The Maze is a support / drop in service for parents, grandparents and carers of children on the autistic specrum. Based in Arnold Nottingham at present we meet twice a week, but we've just been given our own office and will be going 5 days a week really soon. We can offer support and information and help talking to schools and we will be shortly be able to offer training for parents but more importantly we offer a safe place to meet other parents like you and talk. We meet Mondays 10-12 and Fridays 1.00 til 3.00 Behind the Arnold Methodist Church, entrance Next to the Post office If you need any further information feel free to PM me

There seems to be very little information around to help parents who children show signs of PDA so working with an excellent special school in our area we put together a leaflet for parents about supporting a child with PDA (Pathalogical demand avoidance) I thought I'd put it here incase it can be helpful for anyone else. Children with PDA often present very challenging behaviour and many of the strategies that would prove helpful for a child with Aspergers Syndrome or autism will only work for a limited time or even prove totally ineffective. For a child with PDA control is really important and understanding this and the reasons for this need for control will make it much easier for you to work out strategies that will allow both you and your child to handle new situations. A lack of control for these children brings about extreme anxiety. Many of them will look at a situation and build around it a multitude of fears and stresses based on what potentially could happen to them while in a particular situation. Many children will create a 'worse case scenario' and it will be this that will convince them that they do not want to, or are unable to participate. Children often create this 'worse case scenario' when challenged to complete tasks that are within their capabilities. Often poor self esteem and low expectations of themselves will cause them to 'switch off' or create an avoidance. Not having control of a situation brings will it a whole host of new anxieties. "If I don't have control then who does? "Who's going to keep me safe?" Letting your child know that when they don't feel as if they have total control, you do, can help to reassure them. "Whatever I ask him to do he does the opposite or just flatly refuses or says that he can't" Doing what you want them to do is often really difficult for your child. If they are doing exactly what you want them to do they are giving you control and of course that brings with it all those dreaded anxieties. It is often much more effective to try and find a way of getting them to do what you want them to do but in a way that allows them to feel that the decision has been theirs and therefore they still have control over what they are doing. Obviously it's important that your child does what you need them to do so maybe giving them options and allowing them to make their own decision may help. This is where you have to learn to be cunning and makes sure that both options will get them doing what you want them to do. Children with PDA often struggle with authority as they just don't see that there is a difference between parent and child, teacher and pupil and unfortunately because of this confrontation often results in aggression, both verbal and if not de-escalated effectively, physical. Giving a PDA child responsibilities can be a really effective way of helping them cope with new situations because not only are you providing them structures, you are also giving them a certain amount of control that may well be enough to help them cope with a situation. This might include giving them the responsibility for a younger child on a day out. It may be that this strategy will help them cope much better with a new situation. "How do I help him cope with all this anxiety?" Again trying to make sure that your child has an element of control in a situation is a very positive move. Ensuring that tasks that they find difficult have a beginning, a middle and an end so that they know that although they might struggle at some point it will all be over can help them cope. Children with PDA often respond well to personal praise and often reminding them how grown up they are or are behaving can be beneficial. "I really thought he wanted to go. He said he did." Be aware that some children have a real fear of confrontation which means often they can feel forced into doing things that they don?t really want to do because they have real anxieties around what will happen if they say no. Unfortunately for parents this often means that after the event there is often an angry outburst that lets them know quite clearly how difficult it was for them. The more you learn to understand PDA and the effect it has on your child the easier it will become for you to predict the sort of situations your child might struggle with and you will then have more chance of putting support into place for them. That said there will be times where no matter how much planning you put into place to support your child they will have difficulty coping. When this happens you shouldn't blame yourself. When your child is extremely anxious and feels that they have lost control they will often need to know that you are in control. You can reassure them of this by talking to them calmly and quietly. If they see that you are not feeling threatened it will help them feel safe. "He's really angry I don't want to make the situation worse" Try not to be confrontational. Trying to make a point at the time they are finding it difficult to cope is not a good idea as this will only add to their anxieties. Set strict boundaries and stand by them. It may sound strange but part of the reassurance for your child that you have the ability to keep them safe is often measurable by whether you mean what you say when you say it. For many children your backing down, although you mean well by it, can often be interpreted as a sign of weakness and with weakness come anxiety. Humour is often effective in defusing a potentially aggressive situation, but make sure that the child understands that you are joking with them, if they don't it can increase their anxieties. The child also needs to be interested in you as a person of potential authority in their lives, it is important that you stay calm and detached in heated situations and don't allow things to become personal. You need to re-enforce 'the rule' which of course applies to everyone and therefore out of your control. This removes any personal element to the situation and it may be possible for you to sympathise with the child, after all we all have to adhere to rules that we don't necessarily agree with, doesn't mean we get away with not following them. "I don't understand why he gets so angry" Remember that the behaviours you are seeing come from anxiety. If your child is aggressive or destructive or verbally abusive it is not because they hate you it is because they are afraid or confused and feel like they have lost control. When they are calmer and feel more in control remember that many children feel embarrassed and guilty about the way they have behaved. You need to able to deal with what has to be dealt with, but it's important you learn the ability to draw a line under what has happened, let it go, get back to normality as soon as possible, with no recriminations. Failing to do this may well take away the control your child has regained and the situation may escalate once again. In a school environment, where all students are encouraged to accept the consequences of their actions, provided 'the rule' is in place, and applies to everyone, it is not usually necessary to labour the point with the student, most often they don?t need to be reminded of whatever sanctions are the norm and doing so will increase anxiety. As parents, it's important to separate the behaviour we don't like, and don't want to reward at the time but our love for them is a separate issue. We love them unconditionally and we need to keep telling them that. � The Maze 2006

Aw that is so sweet, bless him xx

Does anyone know where I can download a copy of the screening test used by the Peads for autism and aspergers? Got a parent in need and can't find it anywhere. Most grateful....Mandxx

I totally agree and also what schools often interpret as 'normal play' can often be interpretted in a totally different way. For example a lot of the imaginitive play that they observe is often role play with the child acting out the latest episode of sponge bob or something like that. I remember being told that my son was observed playing games in the school yard. When I asked what game that was I was told the EP had observed my son playing tag. Well tag to many kids like ours can also be interpretted differently. In my sons case tag is 'I don't know what the hell to do here so I'll run round frantically and hit people' It worries me that people who are not trained are able to make assumptions about our children and these are taken as evidence by medical proffessionals who really should know better. I remember an occasion when my son was taken to the park and when he came back they reported that he'd had a lovely afternoon playing with the other children. As it happened he'd been pushed off the roundabout and had felt very threatened by the other children. On asking the teacher the next day what basis her assumptions that he was having a good time were based she said "Well he was smiling all afternoon" You know with the number of DLA applications that are being turned down based on school reports made by teachers who have no idea about autism and also stories like the ones in this thread it really worries me that when more changes come about, as they will when the shake up with social services and the rest of them occur too much power will be given to schools with no clue about our kids. The importance of finding a 'good' school will be all the more of a priority.

I have a very stressed out teen here today. It's one of the first time someone has died that my youngest can somehow relate to. It's gonna be a day of 20 questions

My boys are really striking too, makes it all the more difficult when we are out and about as now they are teens I can see girls heads turning and it really makes the boys feel uncomfortable it they think people are looking at them. It's that age old problem though isn't it?......The more normal they look the less tolerant people seem to be. I'm still resisting the urge to tattoo bog off on their heads.

Wooo....Congratulations sweetie!

A few years ago I had real concerns about my own sons after going upstairs and finding them sitting beside each other with their pants down and it was obvious that my elder son had been 'exploring'. It really concerned me but I am convinced now that it was a sensory thing, after all we seem to have the ability to know that sensations feel the same to all of us, but for our kids they don't and I think my son was curious to see if his brothers felt the same as his own, if you know what I mean. It only happened the once, I suppose once his curiosity was satisfied there was no need to do it again, but of course we took steps to make sure that supervision was stepped up, especially as both of them are on the spectrum. My son has PDA as part of his autism and definitely targets his brother constantly. His brother is also on the spectrum so he doesn't understand to keep away and almost invites the agression. It makes life difficult and managing it is hard. This situation is made easier now by the fact that my son is now housed downstairs which makes upstairs a safe space for his siblings. By adapting the environment around us it has helped us manage the situation better.

Could it be that because it's a different launguage it makes it easier for him to block it out and concentrate on the pictures? We recently went abroad and I anticipated my boys having a real problem with the mix of languages around them. I was wrong, in fact they seemed to find it much more comfortabe not having to attempt to understand at all and they were much more relaxed in rooms that at home would be too crowded. Maybe it;s the pictures that interest him most and by changing the language he eliminates the need to concentrate on both

I am glad everything turned out ok in the end Viper. I know how this feels. I have an elderly aunt who lives alone and she is awful for forgetting to put the phone down properly so the engaged signal can go on for days. It drives me mad, I know shes probably done it again each time but I couldn't live with myself if she'd not and there was something wrong. Each time I drive down there and put the phone on the hook and told her off but she keeps doing it. I'd like her to carry a mobile phone, that would help in situations like this but being 78 she thinks they are the invention of the devil and won't even concider the idea. Mandxx

I agree. I was a governor for 6 years and a Chair of Governors for 3. I feel passionately about every childs right to the best education possible and certainly I was the sort of Chair that wasn't afraid to challenge the headteacher or his collegues over decisions and policies that I felt were not in the best interests of the children, which is a problem that occurs all too often in too many schools in my opinion. Too many governing bodies rubberstamp the decisions of the headteacher, decisions that should be made as a body and which, in all too many cases are made by the headteacher before meetings with the governors are even scheduled. Too many governing bodies are afraid to challenge decisions and this, in my opinion, makes the option for parents to take complaints and grievences to their school governing bodies, ineffective and a total waste of time and energy. In the end I resigned as Chair of Governors, having felt that I was no longer able to continue putting my signiture to policies that as a parent of a child with special needs I knew were ineffective and not worth the paper they were written on.

All teachers that use the terms "Must be a home problem" or " We never see that sort of behaviour in school" should be forced to babysit for said child in their own homes, straight after school for a period of no less than one week.

I agree. I think the thing is we live such structured, such routined lifestyles that we often find ourselves getting irritable when people aren't punctual and that sort of thing. Also for many of us we live such issolated lives and we suffer so many confidence knocks is it any wonder that we often feel out of our depth in social situations and feel threatened in new places. I also think that as parents, we learn to accept that it's ok to be different and perhaps from that we learn to allow ourselves to be a little more individual and ourselves more. I suppose this could be interpreted as us being 'different'. My life is definitely different to the lifestyles of many of the people who live around me. If you asked me have I got autistic traits I would say yes, but as our kids learn from us in some cases we learn from them as we learn to live with the same routines. Yes I have what could be perceived as autistic traits, but these are learned behaviours, learned from spending 24/7 with two autistic children. Minxygal Your situation seems different from mine in that I was much more 'Autistic' when growing up but I have learned to deal with/understand things in adulthood that many 'NT' people seemed to grasp in their teens, which seems the reverse of what you describe. Some parents may develop Autistic Traits as a learned behaviour, but my Autistic Traits were there in force before I had children or knew Autism existed. I accept that there are self-diagnosed Aspies who simply have traits, but I agree with Tez that we have to be careful we don't make unwarranted assumptions about people who may well be on the spectrum. As she rightly points out, almost all of the parents on this forum went through the school system at a time when Aspergers/HFA was not diagnosed/understood. For example, I started school in 1970, my eldest son (AS) in 2001, a lot changed in that time. Had my son started school when I did he would have been labelled as 'difficult' and dealt with accordingly, I am not sure how hard people would have looked for an underlying cause. Simon I'm sorry. I didn't want to give the impression that I thought everyone who was self diagnosing didn't have AS, the point I was trying to make is that sometimes when we live the lifestyle we do it's easy to see ourselves as becoming autistic. When I was a girl in the junior school there was a boy who used to run around the class with his PE shorts on his head. Lokking at what I know about ASD and remembering the way he struggled to fit into our classroom I often wonder if he had AS.

I agree. I think the thing is we live such structured, such routined lifestyles that we often find ourselves getting irritable when people aren't punctual and that sort of thing. Also for many of us we live such issolated lives and we suffer so many confidence knocks is it any wonder that we often feel out of our depth in social situations and feel threatened in new places. I also think that as parents, we learn to accept that it's ok to be different and perhaps from that we learn to allow ourselves to be a little more individual and ourselves more. I suppose this could be interpreted as us being 'different'. My life is definitely different to the lifestyles of many of the people who live around me. If you asked me have I got autistic traits I would say yes, but as our kids learn from us in some cases we learn from them as we learn to live with the same routines. Yes I have what could be perceived as autistic traits, but these are learned behaviours, learned from spending 24/7 with two autistic children.

I agree. Sometimes I look at my son and I do see the mild side of AS but never for very long. Often what I see is a very confused, mixed up child who needs a massive amount of support to help them function at their best. I think the 'label' that AS has as being mild can sometimes be the reason that our kids don't get the right support in school. The difficulties my youngest son has are not mild and the changes that we have had to make to our lives to accomodate him have not been mild either. Lindap, I respect your right to have your own opinion, however I do wonder if you'll still think Aspergers is mild when you've lived with it for as long as some of us have and watched the effect of it on both your child and the rest of your family.

While Mark was unable to cope with a shaver with the turning wheels the foil ones that are smooth he seems to cope with and they do seem to be the safest option. As has been already said it was somethng we thought about very early on so we've not really had too many problems although Mark does get cross sometimes when we remind him to shave. To be honest the facial growth alarmed him somewhat so getting him to shave it off was not really a problem. As someone already mentioned, we do have problems with him cutting 'other' hair off too, now that is much harder to cope with

I have IBS and Obsessive Compulsive Disorder, my OCD is worse when I am stressed.

I think you also have to concider the effects that this sort of drug would have on her ability to carry on her day to day routines. This time of year is particularly difficult for people on the spectrum, so many changes, so many different structures and so many more social expectations. She will need your help to get through it. I have to agree with everyone else here, the tranquilisers won't stop her having a meltdown and will have more of a sedative effect, much better to find out what she is having so much difficulty coping with and working on making the situation much more managable for her.

Maybe we're different, but we're still the same We all got the blood of Eden, running through our veins I know sometimes it's hard for you to see You come between just who you are and who you wanna be If you feel alone, and lost and need a friend Remember every new beginning, is some beginning's end [Chorus] Welcome to wherever you are This is your life, you made it this far Welcome, you gotta believe That right here right now, you're exactly where you're supposed to be Welcome, to wherever you are When everybody's in, and you're left out And you feel your drowning, in a shadow of a doubt Everyones a miracle in their own way Just listen to yourself, not what other people say When it seems you're lost, alone and feeling down Remember everybody's different Just take a look around [Chorus] Be who you want to, be who you are Everyones a hero, everyones a star When you wanna give up, and your hearts about to break Remember that you're perfect, God makes no mistakes Bon Jovi......Have a nice day. I just love the lyrics to this one

I've added a bit too. Hope it helps

Aw Helen, to me you come across as someone who loves their child dearly and is prepared to fight tooth and nail for their needs. I think you come across as very friendly and lovely. Not at all vindictive or nasty <'> <'>

lol.....Mine cottoned on to the fact that the tooth fairy brought money really fast. Problem was he then pulled a few teeth out that weren't even loose do she'd pay us another visit.

Fighting for my childen and learning what's needed to support them has taught me as much about myself as it has about the system and the children. I have learned not only my strengths, but also my limitations. It's quite a journey isn't it?!

Just read your post and I do know what you're going through. My son has major meltdowns, not actually sure if meltdown is the right term for the way he goes, when he goes. I've been hit, punched, pushed.....you name it! I have another son with Aspergers who doesn't understand that when big bro is like this he should run away so he very often finds himself in the middle of it all. I remember one Saturday afternoon both of them went together and I really couldn't cope. My husband tries hard but he also sometimes loses it and makes the situation worse. In the end I too rang the social services and begged for help. The woman on the phone could hear world war 3 going off in the background. Her advice????.........Take them to a family members house to give myself time to calm down.I'm not being funny but my boys would have distroyed any house I took them to and I wouldn't put them on anyone in that mood. She then asked me if I'd done anything to try and calm them down??....Doh!!!!! She then suggested we bear it and she would let a social worker from the disability team know we might be phoning on Monday. That was it, she hung up. I know I've not offered you any help here, but I hope I've helped you see that you're not on your own. I think the time of year has a lot to do with it. My eldest finds coping very difficult at this time of year.