Lyndalou
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Posts posted by Lyndalou
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Yep, I'm an absolute control freak in so many ways. It took me a very long time to actually recognise that....one reason I started to see what a control freak I am was when I designed and printed out all my wedding invites (and there were quite a few) and when I checked them over and found the text to be off-centre by c2mm I completely freaked! My husband (to be) got a mouthful when he told me this was a disproportionate reaction but after I had redone everything and had calmed down I had to accept that I'd overreacted. After this, I started to realise more and more instances when I had to be completely in control and the reason for it is that it makes me feel valid and capable. As soon as I'm not 'in control' I have to fight feelings of inadequacy and of being incapable which I can't always control even though I know how irrational it is. A lot of it is to do with problems with organisation and sensory issues. If I know where everything is then I won't panic as much. If I know that I'm ahead of the housework then I'm not bombarded with looking around me and seeing mess as far as the eye can see.
The good thing about recognising it though, for me is that I have learned to 'let go' sometimes. Mostly though I'm wound as tight as a spring!
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It sounds like you are doing all you can for your little man and thinking about what is in his best interests now and in the future. Keep trying to get all the answers you can and support you can
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Well, it's snowing lightly here at the moment and the snow has been lying for more than a week around here. A few days ago it took me half an hour to de-ice the car but since then it's not been so cold, if that makes sense. I was out with the snow shovel a couple of days ago because the snow banks up at the bottom of our drive and compacts so I didn't want to be stuck. Both the kids now have their snowboots but it's proved a difficult task to find a snowsuit for my daughter!
Turned up at toddlers this morning and it was off. So, it's probably a problem into the countryside round about as the woman who runs the group calls off toddlers when the schools are closed and her kids go to a country school. By all accounts a blizzard is on the way.
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I think Trekster's set the ball rolling so here goes...
I'm a married mum of two with one ear on the baby monitor, a continuous supplier of drinks and snacks, the person who picks the Peppa Pig DVD's off the floor and cleans them off, housekeeper and nose wiper.
I've had a keen interest in mental health and in general how people 'tick' since my late teens. I gained a Fine Art Printmaking degree at the age of 22 and thought initially about becoming an Art Therapist but then followed a number of years of different jobs in different sectors; everything from a BT operator to a worker in an industrial laundry, a stint of nursing training and a PgDip in Heritage Management before I worked in an area close to using art as therapy. In my late 20's I eventually got a 'real' job when I worked for a mental health Social Enterprise as a Workshop Co-ordinator of first a paper workshop and then a picture framing workshop, the second dealing directly with the public. It is fair to say that this was probably the steepest learning curve of my life for many reasons! I then worked as an Advocacy Worker, advocating on behalf of older people with dementia and their families. It wasn't a good start when a senior Social Worker complained about me to my manager in my first week on the job saying that I had no idea that people with dementia had memory problems (insert indignation here).
I've been very lucky since I met my husband to be able to travel a bit. I love now seeing in the flesh what for many years I only saw in books. Highlights include Pompei and Barcelona and as a family we've gone to 'far flung' places like Yorkshire, Cornwall and Caithness.
Mostly though, I just watch CSI, Criminal Minds and Bones on telly, zombie flicks and I'm looking forward to the second series of 'This is Jinsy'.
I'm a self diagnosed Aspie with a high functioning autistic little boy and an apparently NT daughter. On paper, I'm officially autistic 'some of the time' (yep, makes perfect sense
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Thanx Lynda and SmileyK. Lynda what kind of special needs school is your son at if you dont mind me asking? I dont think there are any in my area that would suit my son. I know there is a language unit but its not like the one my son was in before we moved, its only for very severe speech delays which his is mild! And that school is 35-40 mins drive away. Wondering if mainstream is right for him at the moment. I had thought about him staying back a year, but im not sure about it....
We are very lucky to have this school locally for children who have a range of special needs. The school caters for children from nursery age to 18 yrs and the catchment area is quite wide and the LA provides transport by minibus to the school, even those who live in the town like my son.
The school is not ASD specific but there are a lot of children with autism, particularly in the younger age group. My son, as a result is in an autism specific class. He is one of six boys who have a teacher and 3 teaching assistants. In addition to this weekly he has one-to-one sessions with a speech therapist, 2 swimming lessons, gym class and access to a snoezelen room. He goes walks into town and also into the country on bus trips.
In the lead up to attending nursery, we had input from the Educational Therapist, Pysychologist and Paediatrician. The EP continued to provide input prior to my son being accepted into P1 (reception) at the Special Needs school. Everyone was in agreement - nursery teacher, EP and Speech Therapist (among others) that this was the best placement for him especially with regards to his level of understanding, his speech disorder and his sensory difficulties in particular.
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Its just a shame i didnt know that legally childeren dont have to start until they are 5, If i had known this i would have kept him out and in nursery an extra year so he was one of the oldest instead of youngest in his year. It would have given him time to catch up a bit. But obviously the worry is the new language and weather he can cope or not... so i will review at the end of the year and go from there. Be a shame to have him in a different school to his big brother, but not the end of the world!
Bear in mind that you may be able to request that he can repeat the year. You certainly can do this here and you may be able to do this in Wales. This could probably apply at the same school or at another school if you feel that this would be helpful for him. I've been told that this would be an option for my son if he moved from his Special Needs school into mainstream next year (although this is unlikely).
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That's very kind Jeanne - I think I'll need a bit of direction with the 'technical' side of things and it might take me a while to catch on with that as it's not my forte! Glad there's a few of us....that's what swung it for me
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Hi All
Hope I can fulfil the role as well as I can! Thanks Jeanne!
Lynda
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I'm sorry Sa Skimrande but I find this piece and the accompanying postings extremely uncomfortable to read. It is full of anger and vitriol and to my mind is the reason people can stop listening to sensible dialogue about autism. If I came across these parents I'd give them a very wide berth. If this is how they live their lives, on the defensive and on the attack then it's pretty clear that this will transfer to their children in turn and it's little wonder that they would 'play up' in public ahich may be more about their parent's attitudes and the examples they are being set than their autism in some cases.
Horrible horrible.
Yes, as a parent of a child with autism it can be a lonely place to be, especially being on the spectrum myself. People don't understand - that is very true - I've had the 'looks' and I speak to the people who think they know what it's all about when they don't. Yes, it makes me angry and upset and at times it makes me pretty depressed because I feel like I'm banging my head repeatedly off a wall but it wouldn't help my 'cause' one little bit to bawl people out in the street or scream at them that it's because my child has autism.
I love my children but they drive me mental as all children can. It is hard work being a parent but the only way we can teach our children with ASD is to try to set them as good an example as possible of how to treat others with respect even if it's not necessarily a two-way thing. I'd rather ignore the ignorant than mudsling in the dirt with them.
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@ noskca i would do whatever you personally feel is in your son's best interests and what you feel your son needs educationally as his mother what he would thrive be successful and positively benefit from such environment then have nothing to really lose as such! worth a try go for it! you know your son best as such! good luck with whatever you do decide to do for your son!
XKLX
I would echo what Smiley says but I would add to this that if you have concerns about the language barrier at school then it might be worthwhile looking into alternative options. My son has a speech disorder. He needs a degree of consistency in how he is spoken to using short sentences and often needs those sentences repeated a few times before he 'gets' it. I work on pronunciation with him, read books and as he interchanges 'she' for 'it' and will say his name for 'me' and 'my' and often says words out of order, he is spoken back to every time the way it makes sense and using the correct pronouns. It has got to the point it's second nature now. At school, he receives regular speech therapy in English. However, this is the spoken language in our area; in other areas in Scotland, Gaelic is spoken in schools so what you are describing would be an issue. I personally would feel that my son would be confused by a second language. I don't tend to say too much to my son in Scots although I was brought up using these words and can use them in other company that uses them.
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I've read that it is thought that children with ASD are in general around 2 years behind their peers as they grow up (higher functioning). Whether this is true or not I don't know but I would say that for certain, my 2 year old is almost on a par with my 5 year old in certain areas. She definitely understands a great deal of what I say, she has some grasp of emotional states and she is doing things like taking down zips and trying to pull them up and being very clear about what she wants with just a hint of manipulation creeping in there! I ask her to fetch things for me and she does it straight away and when I ask her to help me tidy up toys she obviously enjoys making me happy! Developmentally, she is way ahead of her brother. He has to be asked repeatedly to help tidy and to do basic things like take down his trousers he needs a lot of prompting. His basic understanding of emotion is definitely 'learned' as we have gone over sad, happy, angry, grumpy etc a lot and he does this at school.
I remember back to my own childhood and I was often quite frightened by children my own age; they always seemed more 'grown up' than me. I preferred to play with their younger brothers and sisters. Seemingly, this is quite common too, for children with ASD to play with younger children or be drawn to those well ahead of them in age. This definitely correlates with my own experience in my later teens when two of my good friends were around 15 years older than me and even now I can feel more comfortable in the company of people much older than me. I My own son does it. I can see it on his face quite often how apprehensive he can be around children his own age so he feels more comfortable with children around 2 years younger.
I wouldn't be too worried about chronological age v developmental age. The main issue is to help him learn and grow and make sense of the world at his own pace while he is young. Help him cope with all the difficulties he has and the problems he experiences processing instruction. The more you can understand about his problems, the more you can help him develop the skills he needs to relate to his peers.
As Justine says, there is also a 'spikey profile' element. My sons reading age and ability to understand music is ahead of his peers although he is not fully toilet trained and he can't dress himself.
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Absolutely loved Jessica Lange singing 'The Name Game' on 'American Horror Story - Asylum' - totally inspired and surreal
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I've had a good search and unfortunately I can't find it but some time ago Sa Skimrande posted an article called 'Aspergers Grows Up' (or some similar title). It was an amazing article which detailed the different ways that people with so-called 'higher functioning' forms of autistic disorder 'grow up'. It acknowledged that many people (adults) are unrecognised as having an autistic disorder by virtue of the fact that in general, experts and professionals do not really know how people with the condition learn, grow and adapt to become at times almost indistinguishable (on the outside) to everyone else. Those with higher IQ's are thought to be particularly adept at 'hiding' their autism.
I think that professionals place far too much emphasis on 'observable behaviour'. On this forum it is mentioned over and over that peope can 'learn' to maintain eye contact, they can 'mimic' other people's behaviour (sometimes the right people and sometimes the wrong people) and if this is done repeatedly it becomes more easy to do and many children at school try to blend in and go to all sorts of lengths to hide their differences.
I think it can be very misleading to blindly believe the 'experts'. Often they have their own agendas for conducting research and often they can be researching within very restricted perameters. I don't believe that experts 'understand' how the brain works for the most part. They don't understand just how amazing people can be and the difficulties people can overcome - autistics by nature work very very hard and this can go for appearing 'normal' too. I think experts still do not give people credit for their strengths and still expect to see stereotypes and when they don't see those stereotypes they think those people no longer are autistic! It's all quite back-to-front in my view!
If you look at programmes like 'Son Rise' in the US who claim that their children are 'cured' by undertaking their intensive therapy I would suggest this is the same thing; children who have worked darned hard to overcome their problems and focus on their strengths EVEN THOUGH they are autistic.
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Hi Ash
How old is your wee lad? The things you are describing are similar to things my son does and did from a young age; going to sit on stranger's laps and leading or dragging me to things rather than indicating by pointing (although your lad seems to do this which is good). At playgroup my son stayed away from other children, preferring to play on his own (as he grew older he preferred to play alongside one other child) or fearful of other children, unable to stick up for himself and obviously 'confused' about he was 'supposed' to play with them.
Trust your own instincts. Obviously all children require guidance about what is appropriate or inappropriate behaviour but if given that proper guidance, normally 'typically developing' children take this guidance on board. It can take a lot more guidance and firm boundaries being put in place for children with ASD before they 'get' it. If there are understanding/communication issues which delayed speech can indicate then it becomes all the more difficult for the child to understand what is expected of them. Understandably, they can become frustrated because of this and act up.
Maybe take this opportunity of the child worker being unable to come to record some conversations with your little boy. Could you get your mum to do this, possibly on a phone or something? You could do simple things like offering him a snack, sitting down to do a puzzle or getting dressed/undressed. This way it would demonstrate your ability to communicate with each other and would show up any unusual behaviours. It's really unfortunate that the HV is being so dismissive of you but recording your time with your little boy in 'real life' situations may show your child worker what it is you are trying to describe. It could back up what they see when they visit.
My son was diagnosed just prior to the age of 3. Don't be fobbed off with things like he is too young for a diagnosis. The sooner he can get support the better. There are all sorts of techniques that can be used to help children with ASD learn and grow. If your little boy has sensory problems then it would be useful to know about this because this can lead to all sorts of behavioural issues too but again knowledge is power and there are a lot of things you can do to help your child cope with these problems.
Best Wishes
Lynda
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Unfortunately, there is no magic formula to whatever 'it' is that makes a person likeable and able to maintain friendships. The simple fact of the the matter is that it takes those of us with ASD greater effort and we put more thought into the whole process than the majority of people. I think this can lead us to 'overthinking' what friendship is; it's purpose and durability (or not) and how good (or not) a friend we are. Most people don't put this amount of effort into having friends. They don't worry too much about the little things that are said that we worry about; what 'that' look meant exactly, what 'that' tone of voice meant exactly, are they being taken for a fool or taken for granted, are people speaking about them and how to deal with it and did they say the 'right' thing.
There is a lot of basic psychology involved in getting to know other people and getting past the first stage of the process. People are more drawn to people who look confident and people who look happy. If someone looks miserable, the person speaking to them may wish to offer the other person 'help' but they might not feel like battering down that person's door to be their friend. If a person shows interest in what the other person is saying, that then makes a person feel good about themselves. People like people who (appear to) like themselves. Body language can be key. If a person demonstrates 'defensive' body posture, ie. they stand with their arms folded and lips pursed or they demonstrate a general lack of confidence, ie. toes pointing inwards or looking down when speaking to someone and stuttering or they have 'aggressive' body language, ie. invading someone's personal space and staring at them then the other person could feel in turns that the other person has little interest in them, may be too 'hard work' to be friends with or that they will always be 'defending' themselves.
A long time ago I started 'mirroring' people. This is when someone speaks to you and you replicate their posture and body movements. Relaxed body posture can involve standing with your legs slightly apart and loose at the knees and leaning slightly forward in your seat to show interest (but not too eager) when you are sitting. When the other person shifts feet for instance, you shift your feet, when they move their bottom slightly in their chair then you do the same. They might touch their chin in a 'thoughtful' type of way and you do the same. It shows interest and involvement in the conversation.
Look next time at the person's feet when they are speaking to you. If their feet are facing you then they are wanting to speak to you (or giving the impression that they do) and if they are not a friend then this is an 'in' into a conversation. If the person's feet are facing away to the left or right and their body is facing you then a few words will suffice. They don't want to hang around to speak even if they have shown willingness to speak before. However, their feet may move towards you after initial introductions. They then have probably changed their mind and want to spend a little time talking. If they start shifting from foot to foot then wind up the conversation.
These are my musings and have been learned through trial and error, studying psychology and mental health. Meeting people has never been a problem for me. It's keeping friends that I find tricky because of all the 'questions' mentioned at the beginning of my post and because I've lost a LOT of friends. I don't know what is worse - not being able to make friends or having trouble keeping them!
Another key thing is not to speak too much about yourself and about your interests. If you find yourself 'going off on one' you have to steer the conversation back to the other person and ask about them and their interests/family/job/what they did at the weekend. You can learn to 'fake' interest if you have none and it IS possible to learn not to 'glaze over' if you find what the other person says of little interest. Of course, this is a good indication that this particular person is unlikely to make a good friend! It's the people you don't have to fake interest in that you want to be your friend!
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I know I work hard as my manager has always told me so and other people have not complained. But since a new person has started, she comes in late, has had the equivalent of 7 days sick within the first month and this is her first job... I have been told "I'm not pulling my weight".... How sick does that make me feel?
All I can say is 'Boo, Hiss'. I can understand you being upset - that really is not fair. Doubt they'll be saying that when she jacks the job in and they are asking you to fill the void. My next door neighbour ( who does not have AS) went for a job after a few years of being mum full time and was told that even with her years of experience and qualifications that she was not suitable for a job (within the health sector and she and the person who interviewed her for the post had a 'history'). They offered the job to a young woman who had a history of walking out on jobs and being off sick. She went off sick within a month of being in the new post and then after she'd been in post for the amount of time she needed to be in order to get a proper severance, she walked. Karma........
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I don't believe I can single out just one person for an 'accolade' of appreciation. There are many things that are said by many people at different times about various subjects. Depending upon the 'hat' I am wearing when I am coming onto the forum, whether it be my 'mum hat', 'adult with ASD hat', 'upset and frustrated hat' or 'reflective and questioning hat' comments and discussions help me in a myriad of ways. Some of the discussions, topics raised and answers made challenge me, make me feel stronger or help me see things from another perspective. Even the recent arguments and upsets on the forum can be used as a means to learn.
If I want to mention names in particular I would suggest Sally44, Robert 7111a and Darkshine for their knowledge, experience and strength which shines through in what they post.
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This is why I found this forum as I found some cybermates - although perhaps "some" is a bit of a misnomer now... I'm hoping to find more...
<'> I'm happy to be a cyber chum. -
Agreed - needs to be moved
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Good luck with the testing...as Smiley said, at least the ball is now rolling. Are there specific reasons they are testing for these conditions? Are there physical signs the paediatritian is concerned about? My son received no genetic testing prior to his assessment for ASD so it would probably be worth just checking the reasons for this testing and also to ask if he will be tested for other syndromes/conditions too. It may be that this is simply how they go about the assessment process in your area.
Lynda
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Well Done - this sounds like a great opportunity. I'm sure you know your stuff and as long as your presentation shows that I think you'll do great!
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Suze, I think you do a very good job and it must be very tough for you just now. Don't think I haven't noticed you doing your job in absence of others. Well Done.
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Just to clarify: when I made comments about older members, I was not pointing the finger at anyone currently using the forum. Also, I think it is simply human nature to band together with 'like minds' and unfortunately, as we see every day in our everyday lives, people can bicker and squabble, be sarcastic, make judgements. If we pretend that Survival of the Fittest doesn't exist I think we also deny a fundamental part that is within every single one of us. What we need to do is rise above our base human nature and be more evolved.
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My response was a bit tongue-in-cheek - I do have a weird sense of humour sometimes! Of course, it's not an easy thing to keep a house and children and do all the other things that a busy life demands.
I've kind of turned into my mother but a less efficient and organised version of her. In my chaos and disorganisation as a child, my home was an oasis of tidiness and order. I used to resent it greatly as I waded through my mess, unable to find anything and annoyed when my mum could produce what I was looking for straight away. I used to be upset when I went to visit and she would tell me off for dropping my shoes beside the sofa. Now, I have many of the same 'rules' surrounding tidiness and my children will no doubt think the same of me in time!
I have discovered that as I have accumulated more 'stuff' over the years and have to do more, I've had to 'up' my game in the housekeeping stakes and I do find it very stressful. However, I find an untidy house even more stressful so trying to keep on top of mess and clutter wins out! I simply couldn't get through the day if I didn't order my drawers in a particular way and I can't even begin to tell you the meltdowns I have when the light shines through the window and it reveals grubby fingerprints and dust!
plan to escape away to aunties in stevenage,herts
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A little break might do you the world of good Smiley and I'm sure your aunt will love to have some company for a few days. Maybe write all your plans down with regards to your travel - stops etc and pick up times - so that you can be as organised as you can and refer to it on the journey and you'll be less likely to panic (I used to travel a lot by bus and train so I know that feeling well!). However, it sounds like you've got it covered already so have fun!