spam390

I understand being loath to move her as you've already done it once. What does your daughter want to do ? Stay at present school or move schools ? I ask as I was also loath to move my daughter, but she kept saying she didn't want to go to school and what a horrible time she was having every day, and I kept trying to help saying ' it will get better' etc. But all I was really doing was extending her stay in a totally miserable, unsupportive environment. She only began to believe things would get better when she began at the new school.

Hello Peaches, Have you thought about the Open University where all coursework is done at home with materials sent to you ? Have you contacted any local universities to ask if they do part time courses or if there's any way in which they might be able to accommodate his needs ? You could also think about any local college courses along the lines of accounting etc which may mean he could work as a self employed accountant or book keeper and work from home in the future if he doesn't want to go to university ? Also perhaps you could ask about a referral to Occupational Therapy where you could be assessed for anything which could be used to help avoid some of the problems he faces ? ( same idea as people get appliances etc after a stroke and can't manage bottles/ kettles etc) Also, you might want to think about considering if referring yourselves to Social Work would be helpful so that they can have a record of his needs and what help you provide so that they can organise providing the same help when you are no longer able to e.g a support worker, meals on wheels, an assisted living facility ( where maybe 4 young people live but are supervised daily by a support worker). I referred my daughter to them myself when I was a single parent with my ASD daughter just in case anything happened to me. I'd also suggest making an appointment with your local citizens advice to see if they can help e.g making sure you're getting all the social and financial help you are entitled to, including access to any funds such as the Family Fund etc which might help you. All my very best for the future for you both. xx

Hi there, I had exactly the same issues with my daughter at primary school. Her head teacher was incredibly insensitive and generally used my daughter as a scapegoat saying unhelpful things like ''well if she can't be nice then it's no wonder the other children won't want to play with her!' or ' if she hasn't got anything nice to say then she shouldn't say anything at all', which was in reply to my daughter being thrown against the wall for saying 'no' when another girl asked if she liked her new haircut !, and as we both know, brutal honesty is par for the course with ASD and Aspergers.. Not exactly the attitude of tolerance and understanding I was hoping for. My daughter also 'managed' her behaviour at school, but had complete meltdowns at home as she was so stressed and upset. Firstly I tried to get the school to realise they were being unhelpful by asking for our Child Psychologist who had diagnosed my daughter to send the school information and for the educational psychologist to visit the school, but this made no difference to their attitude, (though they said all the right things to them when contacted.) Then I self referred us to social work saying I needed help , and once assessed I asked them for an assessment for an SEN ( statement of educational needs, which is usually for more disabled children) in the hope that they would see I was serious and was not about to put up with how things had been done at the school. Once asked, they had no option but to arrange for an assessment. This meant a meeting at the school with social work, teachers, educational psychologist and psychologist. this at least forced the school to, very hurriedly, set up a teaching plan and some strategies to help my daughter cope, ( which I only found out about on the day of the meeting ! )though they still refused to allow her to spend break or lunch in the school stating ' she will never learn how to co-operate and make friends if she's allowed to avoid it'. Regardless of how much distress this caused, which meant my daughter 'stimming', which meant the other kids made fun of her....you get the picture ? I tried to get accross the fact that my daughter had managed to make ( and keep, with a little help from supportive teachers) friends at swimming, ice-skating, trampolining, brownies, horse riding etc and that it was simply due to lack of support that she hadn't managed this at their damn school . However, at the end of the meeting I could see everyone was shocked at the head teachers attitude, but unable to alter it, so I said I would be taking my daughter out of her school at the end of term (2 weeks away), to which the head teacher replied ' That's a waste of time because she'll just have even more problems getting anyone to like her at a new school where she doesn't know anyone....' I was livid ! Needless to say, we spent the 2 weeks before summer visiting other schools, and moved her to one which was very informed about ASD. In her new school she got twice weekly visits from Autism Outreach who set up 'conflict resolution' sessions with my daughter and other kids who had either had disagreements or struggled socially. In these sessions she learned how to resolve things herself if she had upset someone , and also the other kids learned about ASD and how kids with it could misunderstand things, or say something hurtful but not know it etc. They were also great at helping the teacher find ways to teach my daughter that focused on her ABILITIES and not her DISABILITY. Simple things like giving her written instructions as well as the verbal ones as she would become distracted and lose focus, then forget what she had to do ( and therefore not complete it). They gave her fidget tools and a special cushion to help her maintain focus without having to leave her seat ( as she could fidget and squirm happily in her seat while working). I forget what all she got, but they were small things which made a huge difference, It was a brilliant success, and she managed to make and keep friends with this support. All this happened when she was 7yrs old. She is now 16yrs old and about to go into 5th year at secondary school. She still has her ups and downs, but the Autism Outreach gave her the insight and the tools to help her succeed at school (and socially). She also improved in her classwork dramatically as she didn't feel so stressed all the time and actually completed her work. By the time she moved to secondary school, the Autism Outreach had already told all her teachers of her needs etc and she never had any real issues as she had learned so much at primary about how to behave socially. She still doesn't really understand WHY people get so upset, but she now knows the set responses to help her get past it e.g 'I'm sorry, I didn't mean to upset you. My ASD makes it hard for me to understand what could upset people' In fact she often tells new friends ' I won't be able to recognise if you're angry/ upset etc because I have ASD, so can you please tell me if you are ? I've definitely got my loud, brutally honest, singing at 2am on her way to the toilet daughter back ! ( and she's still behaving much better at school than at home, but then it's ALWAYS going to be safer for her to vent to family who love her regardless of her behaviour and quirks than to peers at school).And I'll never regret pushing so hard for what she needed. I guess some schools are just more open to adapting for kids with different needs, but if your daughter is at one which isn't, I'd recommend some research to find one locally which is open to these ideas, sooner rather than later. My daughter went through two years of total misery with social, emotional and physical bullying, which affected her deeply and took away her sunny nature for a long time afterwards with self doubts and self loathing as she thought everything was her fault and everyone would always hate her. And I'd DEFINITELY recommend finding out if Autism Outreach are available at any local schools near you. I wish you all the best for you and your daughter, there IS help out there, it's just not always easy to find without a fight ! xx

So happy to hear about your success, well done ! It's fantastic to hear you can see developments in your abilities and that you have obviously developed confidence in your abilities !! Maybe we tend to ask for help here when things are not so great, and forget to tell everyone when things ARE. I am going to take a leaf out of your book and start posting when things are good, as well as when they're not so great, cos I think we'd all like to be reminded that not every day is a bad one. Well Done Tally.

Hi, I felt incredibly sad when I read your last post. You really seem to be 'going in circles' while trying to find a way forward. I wish I knew how to help, but the more I read your responses to others the more entrenched you seem to be in a cycle of can't/ won't beliefs. Maybe you could take a copy of your posts etc ( with everyones permission of course) to show the 'medical professionals' involved as I doubt they are aware of half of the issues you face ( Like everyone else, I'll bet you only manage to get across a fraction of the information when you are at an appointment) You have been very open and frank online, and many people have raised valid points with which you have identified, which may help the 'professionals' find a 'place to start' for you? I hope I haven't said anything 'out of line' regarding copying the thread ( if so, then I apologise), but there is so much valid and relevent information contained here that it may help your psychologist etc in 'finding the way forward' or at least a place to start. My absolute best wishes to you, xx

Hi, Just wanted to say that you are not alone. I have a 9yr old daughter who has Aspergers and ADHD and things can be very hard indeed! LOL. We had to change her school as she was being bullied by both the students and the teachers (they constantly blamed her for any and all altercations with other kids and told her 'well, maybe if you didn't annoy people this wouldn't happen'. They also refused to punish the other kids saying ' well, what do you expect ?) Needless to say I moved her and she is now much happier at school, though obviously there are problems from time to time, they are dealt with appropriately. So now, instead of a very upset, angry,volatile child, I have a happy one who wakes the whole house at 2am singing Xmas songs at the top of her voice! I would question whether your childs school has any training in teaching a child with Aspergers or ADHD, as it doesn't sound like it.I don't know where you live, but you could try to find out if there are any specialist services which could visit the school to help the staff understand the issues and put in place measures to help your son. (we have a specialist NHS disabilities nurse team and an Autism Outreach team here in Aberdeen who do this ) Also, don't worry about going into the school, THEY are obliged to give your son an education which takes into account and accommodates his special needs, and you should NEVER feel anxious if they are not succeeding in this. It may be that they are not trained or not willing to help him, but neither of those things is your or your sons fault. You need to work together to be able to help him (if you feel this will not or cannot happen then you need to think about whether this is a suitable school for him) There will always be issues etc for you to deal with, just take it a day at a time and try to keep a sense of humour ! As I had to do when my daughter covered the entire conservatory with sun lotion (carpet, blinds, windows, doors, sofas T.V., EVERYTHING !). She explained that she was worried things might burn in the sun ! LOL, well, at least I can see the logic ! LOL. We have issues daily with her as she cannot listen to more than 1 instruction, and even then she'll usually get distracted by something and not complete it. She act impulsively with no regard to the consequences at all, and is genuinely surprised and upset when we get angry with her as she doesn't understand what she's done wrong- and as soon as we try to explain it to her, she's distracted by something else so the info doesn't go in ! It's REALLY frustrating both for us and for her as she feels we're 'always shouting at her' (she doesn't hear the two gentler attempts to get her attention at all !) She can't settle to do anything for more than 10mins and constantly wants 1-1 attention, which is very hard when all I want is solitude !LOL. Also, she has a meltdown if we are staying home for the day cos she can't cope with the lack of schedule and wants every minute of her day to be planned. The school holidays are my idea of Hell. Trying to fill every minute of every day with an activity she will enjoy nearly kills me, but the alternative is worse (screaming, crying,basically a full meltdown which can last hours cos even once she calms down she will start with her 'suggestions' e.g. go to town, invite people over etc and if I say 'no' it all begins again.) She will continue like this for the whole day until bedtime, and she does this EVERY day of the holidays. I have to be aware of what she is doing ALL the time as she has some pretty creative 'impulses' (putting a whole bottle of Fairy liquid down the toilet and flushing repeatedly to 'see how much bubbles would come', or peeing into a teapot because I told her she wasn't allowed to use water as we were going out soon! or the time she emptied a whole huge sack of dog food into every pot, pan,cup, glass,plate and bowl in the house because she 'wanted to see which the dogs would prefer' !) During school term things are fine as she has classes every day after school (swimming, Brownies, horseriding etc) which keep her busy and tire her out. I wish us both luck ! LOL, but at least you can guarantee our lives will NEVER be boring! LOL X

HI, I love these 'tales of the unexpected' we get with our kids ! LOL. My worst time with my daughter was when she was 7yrs old. She had medical problems as well as ASD and she is on growth hormone, so at the time size really mattered to her. She developed a complete fascination with dwarves, and it's really weird how you never see any until something like this interest happens (same as buying a car, you never notice how many identical ones there are until you've bought it) Anyway, we were at the zoo on a lovely hot summers day, walking along a thin path between exibits, when I spotted a dwarf (I hope that's OK to say? I'm not sure what the current politically correct term is) coming toward us. My daughter may have been small, but her VOICE never has been! ,and before I could reach for her or distract her she shouted LOUDLY, 'Look Mummy, a dwarf!, even I'm bigger that THAT aren't I ?' and to make matters worse, she then asked the poor lady 'Will you run for me? I think dwarves running is REALLY funny!' Needless to say the poor woman was not amused, and she looked SO angry that I had to try to explain that my daughter wasn't being rude or insulting because she was a horrible child, but she has ASD etc.and was oblivious to the hurt or repercussions of her actions. It's all part and parcel of 1. being a parent 2. having Aspergers 3. having a child with aspergers and ADHD. So I continue to see the funny side of things like this, at least life is NEVER boring! LOL

Hi there, Have you tried to find a way to be angry in an 'appropriate' setting ? I know it may sound silly, but I find that trying to 'cope' with anger SO much harder than letting it out ! LOL. Giving a punch bag a really good beating makes me feel SO much better than trying to rationalise my anger, and once the anger is directed toward something I feel it disappear. There's nothing wrong with feeling angry, frustrated and just generally pi**ed off with everything, but trying to hold it in and 'deal' with it can be toxic ! Merry Xmas, x

Hi there, Just want to put this out there, You ARE 'normal' ! I AM 'normal' We ARE 'normal' Every one both on this site and off it IS 'normal' !! Do you really think that HOW someone deals with anything they consider negative defines their 'normality' ?? Every single person in the world will 'deal with' things in a different way, so what is 'normal' for me won't be for you, and what is 'normal' for you won't be for me. I think we are putting way too much pressure on ourselves to be what we PERCEIVE to be 'normal', instead of realising that however we actually deal with things IS 'normal' !! Why are we chasing an ideal of 'normal' when it doesn't exist?? We are all individuals, not a clone of an 'ideal' or 'normal' human being. Merry Xmas to all , X

Hi there, Actually there is something you could try, it depends on exactly what happens to you when you are speaking though. If your mind starts going 'into overdrive' or 'goes blank' when you are talking then hypnotherapy might help. I trained as a hypnotherapist (with a view to working from home as no-one would accept my daughter for childcare) and I've successfully used hypnotherapy with her to help with problems like this. I know it can't help everyone or with everything, but it can be very effective in reducing the stress and worry associated with speaking in public, which in turn helps you be able to talk more 'freely' and more 'naturally'. If you think this is worth a try be sure and use a properly qualified hypnotherapist. Check they are a member of the NCH . Merry Xmas X

Hi there, Are you suggesting/assuming that he will force himself to attend future gatherings as an adult from a sense of family duty? At least that's how I understood it. Perhaps he WILL end up like your brother, but perhaps not. He may well avoid such gatherings as an adult, due to the stress they put him under. The family must understand that he does and will view these gatherings in an entirely different way from them. For your son they are NOT filled with happiness, joy, etc but are maybe ear splittingly loud, completely confusing and fraught with opportunities to 'get it wrong'. I am aware that children need to be 'prepared' for what they will have to face in life, and I teach my children how to cope in a multitude of stressful situations they will have to negotiate as adults, however I would ask my family to either be far more tolerant of my child during such gatheringsi.e. they should be encouraged to be supportive as they are aware of his difficulties (perhaps explaining exactly what it is he has difficulties with e.g. loud noises, smells, food, textures, following the conversation etc.), or ask them to visit in smaller numbers at your home where he may be better able to cope. I sense your own stress with these gatherings too, and perhaps the feeling of being 'judged' by your family is dulling your own intuitions concerning these gatherings? Trust your instincts and try not to be influenced by others opinions or expectations. You are the one who best understands both your son and your family dynamics, and I'm sure you can come up with a solution which will suit your family. Merry Xmas X

Hiya, As usual, sound advice and thoughtful suggestions have been given (as we can expect from people who naturally spend a lot more time thinking about the complexities of communication than most ! LOL). I'm sure lots of people on the site would be happy to 'talk' to you, I know I would. Feel free to send me a message and I can catagorically say, without doubt, that I will reply in return Also, try to remember that everyone here can understand where you're coming from, and also, everyone here has a 'complicated' time of it, for various reasons. For some, time is in short supply and so they must see to their own needs first e.g.getting help with a particular issue, and they simply don't have enough hours in the day to just come online for a chat. Others may rely on online chats as their only 'true' socialising. Basically, give yourself a break. You're going to make friends, just keep at it and don't take any 'no reply' as personal cos I can assure you it won't be, people just get distracted by day to day living (I know for me, day to day living can be VERY full! )

Hi and welcome, I'm a relative newcomer to the site too. It is a great source of information and 'advice'. I would be reluctant to 'advise' you on how to discipline your children as everyone knows their own child best, but unless you have very good reasons for choosing different 'punishments' for each child, I would say it's best to find a 'one fits all children' punishment, whatever that 'punishment' may be. You may want to include things such as detailed explanations of why a 'punishment' is deserved and meted out to ensure the childs understanding, perhaps using picture cards if language is a barrier. This approach of action and consequence can be learned by even severely autistic children, it just takes a LOT more time and patience. Having worked with mildly and severely autistic children professionally I can tell you with certainty that they CAN and DO learn.You just need patience (LOTS of it), a calm and 'in control' approach and NO EXCEPTIONS (kids learn much faster if you don't make any exceptions e.g. he's tired/ hungry so I won't punish him this time). Psychologically speaking it would be very confusing for the children and probably damaging to any sibling relationships to have differing expectations of childrens basic behaviour (i.e hitting/ stealing/shouting etc). I have 2 kids, one is 12 and one is 9. I am STILL carrying out the standard 'punishments' for bad behaviour whenever it occurs, regardless of whether or not it was my ASD child or not, the punishment is the same. I am aware that I do make decisions about where we will go and what we will do based on what my ASD child is able and willing to do, and my other child is expected to conform. I do get complaints etc from my neurotypical child about this, but I simply explain that there are some situations and activities my ASD child finds difficult and as a family we should support each other (giving examples of how we give HIM support) especially in things we find difficult. I hope you find lots of useful advice and support, you just have to 'go with' what you think is best, Best wishes,

Hi, Your experiences interacting with the residents as opposed to the staff is exactly what happened to me. I am a paediatric nurse (and have been for 15yrs or so ), and I have never had any difficulty with the patients or their parents for the following reasons- the kids speak their mind the kids are honest about EVERYTHING (feelings, fears etc) the parents really appreciate being told what's happening and don't care about 'niceties' at the time they all like having someone 'in control' who tells them the truth I am not 'wary' of upsetting doctors and so 'speak up' for my patients rights and feelings I have never been intimidated by my superiors and have no problem telling them when they're wrong I have always been very popular with patients and parents (they often 'insist' on me being their nurse, and I often get gifts specially for me only - i.e. box of sweets for 'staff' and separate box for me) Staff, however, are a different kettle of fish ! With them I am UNPOPULAR because- I don't engage in 'chit chat', especially if there is work to be done I don't spend my breaks with them (if I promised a kid I would play a game and haven't had time I will do it in my break instead cos a promise is a promise!, and if I haven't then I'd rather be alone. I am quick to point out if something hasen't been done or done incorrectly I can't be swayed by persuasion or emotional tactics by staff (saying they needed a break cos they felt faint only resulted in my taking a blood sugar reading and me telling them they were fine!) I ask 'uncomfortable' questions if someone phones in 'sick' (so no-one does it now when I'm in ) Basically I don't conform ! There's a shock eh ?? However i have had an excellent carreer in something I love, and have never had any difficulty being promoted due to my work 'ethic'. Eventually everyone just said things like 'she's strict' or 'watch out she's coming' cos I was the boss, but since no-one expects to be 'friends' with the boss no-one thought I was 'strange' anymore. So if you enjoy your job and you have no difficulties coping with the clients then there is no reason why this couldn't be the perfect job for you ! Don't let any difficulties with staff communication deter you ! Good Luck !

Hi again, I forgot to add that when you do get DLA, apply for carers allowance and also make sure you tell Child Tax Credit as you will be entitled to extra 'disability' money too. I'm not sure how it affects Working Tax Credit as I don't work but I'm sure you would get extra allowances for childcare etc. Also, if you are applying for university childcare help be sure to tell them you are applying for/getting DLA as they often have priority placements for children available (can't hurt to ask !). Basically DLA has a domino effect, enabling you to get all sorts of help. For example, cineworld card (carer gets in free ), access to leisure cards (free or reduced prices for whole family for swimming, sports etc), cheaper theatre tickets etc. You can also use your student discount card (remember to inform council when you are a student to get reduction in council tax). All these really add up and help with day to day living. All the best. x

Hi there, I get the middle care rate of DLA for my 9yr old daughter who has asperger syndrome. She also has MPHD ( a condition affecting her endocrine system) and was given the middle level of care rate at 18 months old, however the rate was cut to the low rate when she was 7yrs old as they claimed she could help herself more at that age ( she has daily medications and injections). When I re-applied (which is done every 3 yrs), I stated EXACTLY what social, emotional and physical issues she had ' above and beyond what is expected of a 'normal' 7yr old 'we had the rate returned to the middle level of care, even though at that stage she hadn't even been evaluated never mind diagnosed. A very useful book for helping with filling in all forms concerning any allowances is ; 'THE PARENTS GUIDE BOOK for claiming allowances for their children with developmental disorders including autism, asperger syndrome,ADHD, dyspraxia (DCD) and dyslexia.Dr. James Duncan (2009) I would advise you to definitely appeal if you are refused. Remember to make sure you include EVERY LITTLE DETAIL such as having to spend 10 mins helping your child get dressed, 20 mins encouraging them to eat or 2hrs trying to get them to settle to sleep. Whatever your individual issues are then they need to be detailed. Remember to include what ATTENTION ( to calm, instruct,inform,listen, etc ), SUPERVISION (socially, environmentally, physically) ENCOURAGEMENT (emotionally, physically, socially etc) EDUCATION (eg learning to tie laces, cross roads, not to talk to strangers , get dressed, greet people ETC). All this information should be repeated ad nauseum at EVERY relevent part of the forms and definitely included in extra sheets. Also relevent are any details of what has/may happen if this 'extra' help is not provided eg. child runs away across a road or child will not eat and gets constipated etc - the extra care you are providing is to PREVENT these things happening. Thankfully I have not had any issues with obtaining DLA but I am a paediatric nurse and know exactly how to detail EVERYTHING I have to do to keep my child healthy and safe, I know of several parents locally who either haven't claimed (and are definitely in the qualifying bracket) or who have been refused and given up. Please try the suggested book as it's really excellent at detailing everything and don't give up ! Remember that perseverance is the only thing needed to ensure you get the money you need to help care for your child. ( with DLA and carers allowance amounting to almost £400 p.m. in total ). I wish you all the best. x

hi again, I should have added that the group in Bridge of Don is also for the support of parents, and I know a lot have benefitted from chatting about everything from social workers, school provisions, babysitting services, benefits etc as well as 'blowing off steam' about their week. They are currently arranging visits by people like Autism outreach and benefits advisors too, so if this would be of any use to anyone contact the community centre and they'll tell you when the club meets. ( though during the holidays we find numbers greatly reduced as it's run during the daytime in the holidays and many parents work.)

hi there, I am a married 43yr old with a 12yr old son (has mild aspie traits) and a 9yr old daughter who is a diagnosed aspie (and also some medical problems). Although we go to a very good childrens group called HANDSS (Helping Additional Needs Develop Social Skills) which is based at Bridge of Don community centre in Aberdeen, there is nothing for adults. Perhaps if there was enough interest we could form a support group ? I know I have definite Aspie signs, and just put on a 'public' face with others , as does my husband. We're lucky really cos we see ourselves as the only 'normal' family we know, ha ha. If anyone would be interested, let me know.