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Hi You really are having a tough time of it. I think that a person can only ever take so much c**p before reaching breaking point. I know it's much easier said than done, but you don't sound like you have a sympathetic or supportive partner. For your own sanity, I think you'd be doing the right thing by going home with your dad. I think horrendous situations like yours, will end up making you a stronger person when you come out the end. You need a really big pat on the back for recognising you're in a nightmare of a situation and trying to get out of it ? can be difficult to do anything and can end up stuck in a rut (also change can be scary!). You don't deserve to be treated in the way that you are being by your partner. Your ME won't help matters either and you really do need to look after yourself and be looked after in return when needed. There will be light at the end of the tunnel! Best of luck! Caroline.

Hi My son does exactly the same sort of thing. Have to say, I'm really think that it's best to ignore. For instance, when someone (familiar or unfamiliar) is talking to me or my son, he'll growl at them and shout at them not to speak to him accompanied by a barage of abuse as well. It's not easy, and can be embarassing (not sure if that's quite the best description), but I've found that things calm down much quicker by ignoring it. Obviously, if it someone that doesn't know my son, then they can be quite shocked. They tend to pick up on the fact that I ignore what's being said and keep talking as normal. He actually becomes much worse when attention is drawn to the fact that he shouldn't say the words that he uses. Not a lot of help I know and it's not easy, but I've found I've had better results by ignoring his rants! Caroline.

Hi Poor Lewis. I'm no doctor, but am aware that migraines can come in all shapes and forms and can be caused by stress as well as other triggers (eg eating chocolate, caffeine, etc). I visited a specialist a number of years ago, as I occasionally suffer from visual disturbances. I was advised by the specialist that I was having migraines. I was puzzled because I assumed I would have had a sore head and would know about it! I was advised that sufferers can have all sorts of symptoms that you wouldn't normally expect. Visual disturbances, omitting, temporary paralysis, dizziness, etc (don't have to have a sore head). Could also be stress which can also cause sore stomachs, vomitting, headaches, etc. Caroline.

Hi Think that's a disgrace that no one spelt it out to you and that you had to read about Tourettes in a letter. I have a relative that has Tourettes. He has tics, facial movements/expressions and makes involuntary sounds and movements with his hands, etc. Tics are definitely one of the characteristics of Tourettes. Hope that helps. Caroline.

I totally sympathise with you. I've been in the kind of situation on several occasions with my 4 year old son Robert. It's all well and good advising you to try and avoid those types of situations as you have to travel (can't be a hermit!) and some situations arise which you can't get out of easily. As I've discovered (caused much distress and hurt), but there are a lot of ignorant people out there. Dependent upon an individuals reaction, I either ignore or tell them calmly that Robert has a condition (and name it) which means he has great difficulty interacting with other people and that his behaviour can be dreadful, none of which he can help. I guess, that you just have to hope that they show understanding ? if not, they aren't worth worrying about. Some people have never heard of ASD or don't know what it is. Whilst you don't want to wear a billboard, it's only by telling people and making them aware that the condition exists and briefly explaining what it is that people will show some understanding and consideration. I recall, I used to get red-faced and I know my husband still worries about what other people think. I'm afraid now my priority is trying to calm Robert down and not concern myself about what others think. It's not easy when all eyes are on you. You can only do your best and try and be calm and firm. Who knows, I'd be willing to bet that some passengers may have sympathised and may even have experienced the same difficulties! Chin up.

Hi My son was seen at the communication clinic last month for a first assessment. Robert was seen by both a Specialist Paediatrician and a Speech & Language Specialist (SALT). On Saturday just received copy of report from his assessment, but it's driving me nuts because I haven't a clue what the scores indicate. The report from the SALT, says that she assessed Robert using the Reynell Developmental Language Scale Verbal Comprehension and he scored as follows: Chronological age 4 years 1 month (his actual age) RS score 38 standard score 28 percentile rank 2 Just received this report on Saturday so couldn't phone anyone. My calls to the specialists from last Wednesday haven't been returned, so I'll not hold my breath (but will be sure to use 'pester power' until I get answers!). In the meantime, I'd be grateful for a translation of these scores! Caroline.

Hi My son swears a lot as well. I'm a firm believer that it's best to ignore it and it's a 'phase' that will pass if no fuss is made. I notice that when my son's teacher asks him not to swear, he'll run around repeating it over and over again. Caroline.

Since my son (now 4) was 15 months old, I always knew there was something different about him. R would have the most horrendous tantrums that would last forever; he'd deliberately knock a hot cup of tea over me, bang his head off solid plaster walls and double-glazed windows and doors, hit himself in the face, become very angry for no obvious reason, has sensory issues (covers his ears when a bus goes past or he hears an unexpected noise, angrily tells people not to look at him or speak to him, can't interact appropriately with other people, becomes obsessive about things eg push-pad buttons to open doors, batman, thunderbirds, recites whole scenes, has an amazing memory, etc. My GP and Health Visitor kept saying it was the terrible twos from an early age until he was nearly 4! It took 2.5 years to get my GP and Health Visitor (after sending a couple of firm letters asking for second and third opinions) to get either of them to listen. R has now been seen by a community Paed, has an Educational Psychology, care worker, Speech & Language Therapist, etc. We've also had a referral to the Communication Clinic (Edinburgh) which was disasterous! The SALT thinks because R got literally a couple of words mixed up that she's cracked the puzzle. I was mad and was quick to disagree with her and point out the another SALT and HV and nursery manager say that R speech is very good (almost adult)! The specialist ASD Paed couldn't engage R at all and appeared to be almost incompetence considering I would have expected her to have experience in 'engaging' ASD kids. We're back to the waiting game ? an ADOS assessment and referral to CAMHS. Nursery are now at a loss at to how to cope with R. He's aggressive towards both other children and adults and has lashed out at them on numerous occasions. Trips to the shoe shop are horrendous ? had to stop R from hitting assistant. R has no idea how to interact with others and when he does it has to be on his terms. R couldn't manage his own birthday party (took R and 2 nursery 'friends' around Edinburgh in hired fire engine), couldn't manage nursery christmas party/nativity play/games, etc. Because of his behaviour, funding has been granted to employ an auxilliary to provide 1-2-1 care whilst he's at nursery. We have a care worker whose been visiting us for nearly 3 months (2 hours per week) and has observed a lot, I've kept a diary over 5 months, EP has made reports, nursery manager has submitted report, yet no one seems to be listening! I can't understand why so many people are involved and we appear to be given some resources, yet no one is willing to give a diagnosis and we just don't seem to be making progress. We seem to move one step forward and three back! Meanwhile R seems to be getting worse!!! You'll all know, as I do, how heartbreaking the situation is! Specialists go on about how important it is to get an early diagnosis, yet why do we have to fight tooth and nail (as if we don't have enough to content with!)? That diagnosis or label is so important as it would give reassurance that I'm not neurotic and would enable to explain to people that R behaves the way he does because he can't help it ? people would be more sympathetic instead of assuming he's badly behaved. I'd be grateful for any advice as I'm desperate that R gets a diagnosis and gets the help he needs. I'm utterly frustrated and feel like telling everyone to back off and get on with this on our own. I can't stand the lack of progress and am concerned that R sees a lot of faces. I'm also sick of thinking 'this might be the day when we get a diagnosis' and it doesn't happen. Caroline.

Hi Kirstie You're allowed to feel fed up. Think we all feel like you are just now, from time to time. Go out with your friend and have a blast or spend some money on a g-string (I always find spending cash very therapeutic much to hubby's annoyance!). Let your man take a turn of sorting everything out. That saying 'absence makes the heart grow fonder' has a bit of truth in it ? your boys will appreciate you more once your home with any luck! I remember the feeling of having an existence and not a life when my son was little. What kept me going was when I saw him sleeping!!! . . . seriously, it reminded me how helpless and innocent he is and that he really needs me. Hope a little change of scenery for a few hours perks you up. Take care. Caroline.

Hi I'm experiencing exactly the same with my 4 year old. The tantrums are often horrendous. I've tried loads of things, eg tried to get him to take time out by sitting on a chair, sending him to his room which has resulted in him trashing it. I have to say that I've found the best thing to do is to completely withdraw attention. I transfix my gaze onto eg the tv where often my son will switch it off ? I still keep watching it! It's really difficult because they can do a lot of harm to both themselves and other people. I'm lucky in that my son is an only child and I'm past being fearful of being hit, and I have no concerns about a younger sibbling being hurt etc. (Maybe you could get everyone else out of the room whilst you watch over him?). In my son's case I don't want to leave the room because I want to make sure he doesn't seriously hurt himself. I really have found that withdrawing attention works in the sense that anything I say can inflame the situation and by not saying anything or looking at him seems to calm things down much quicker. Hope it helps. Best of luck. C.

Hi Like you, I've been chasing a diagnosis for my 4 year old son. I've often asked the same question. One reason could be that the moment you get a formal diagnosis, that child has to be cared in terms of schooling and from specialists ? and that can cost a lot of money! Perhaps depends on which you area you live, etc ? lottery postcode. I'm in the situation whereby because my son exhibits aggressive behaviour (daily basis) and lashes out at both children and adults. As a result, we've just heard that he'll be given one-to-one care at nursery. This is fantastic, but can't help wondering what the specialists have to lose by giving us a diagnosis. I'm at the stage whereby I'm not going to allow many more assessments. It means my son seeing lots and lots of different people and being stressed; us being sent from 'pillar to post' and emotionally it's a real rollercoaster. Hope you get your diagnosis! C.

Hi I feel certain, that an early diagnosis is best. When for example I take my son to our local shop for a pint of milk and a loaf of bread, some old dear or shop assistant usually try to engage my son in conversation which he simply can't handle. They shake their heads believing that he is simply a badly behaved little boy. People need to be made aware of ASDs and understand how it affects people, etc. It's only after a diagnosis that you can get the right help, etc. I'm still battling to get one for my 4 year old son. I have been trying to get my health visitor and GP to believe that there was something wrong with my son since he was 15 months old. I was told that it was just the terrible two's and basically that because I work full-time that perhaps I was stressed and neurotic! I don't think anyone in their right mind would make up such a difficult situation and feel strongly that life is difficult enough coping on a day-to-day basis without fighting specialists to get a diagnosis. I've has to make numerous phonecalls and write several nasty letters to get referrals. Now that we're getting referrals, I feel like we're getting passed from pillar to post. Can't understand why specialists are so reluctant to label ? perhaps pound signs has something to do with it? Caroline

Hi My 4 year old was seen for the first time at a Communication Clinic. This consisted of lengthy assessments with both a Speech & Language Therapist and a Paediatrician specialising in ASDs. We've been been advised that my son needs another assessment ? ADOS. I was given an information sheet which defines ADOS as being . . . ADOS is an assessment carried out by specially training clinicians and these include Paeds, SALT, Psychologists and Psychiatrists. The assessment is undertaken by two of these professionals, one of whom video the assessment for later analysis. ADOS takes about 1.5 hours to conduct. The assessment explores te child's language, development in key areas of interest in autism, such as sharing attention, play and communication. To an observer ADOS looks like a series of play scenarios eg forms of play such as bubbles, through to the providing of a story dialogue. Parents are then invited back on another occasion to discuss the findings. Hope this helps ? we're still got this to look forward to! Caroline.

Sounds familiar! At nursery, Robert had great difficulty this Christmas. During the nativity play, with all the other proud mums and dads videoing their little angels, Robert couldn't cope and started running around screaming and being aggressive. Neither myself or nursery staff intervened as we felt had any of us done so, we would have made things much worse. It was a really difficult day! Heard lots of huffing and puffing and tutting from other parents ? I'm afraid they aren't my priority and if they fail to be understanding, I'm not wasting my time with any of them. Nursery Christmas party wasn't great either. Robert was unable to play 'ring-a-ring-of-Rosie'-type games and ran around being aggressive and shouting. At one point, he sat on the floor and sobbed. Wouldn't go near Santa and every time he got stressed, I could see him clutching his toy Thunderbird. He became quite loud and animated, not in an attempt to get attention, quite the opposite. Noticed he tries to immerse himself into some role-play in an attempt to shut everything else out. I managed to get him into the cloakroom to calm down. Sad thing was, he didn't want to go home, but was unable to join in. Robert is usually not too bad on the day itself because we all try to keep things as low-key as possible. Noticed Robert was hoarding wrapped birthday presents, hiding them behind dining room table and leaving them. This Christmas, I therefore didn't wrap anything and we didn't get the "woooooow!", but we did get a smile! It's difficult as a parent not to get excited about Christmas, despite knowing potentially what's doing to happen, but I tdefinitely think low-key is best policy! Caroline

Hiya My 4 year old makes a bee-line for doors with 'push pads'. If anyone inadvertently, pushes the pad to open the door, he goes mad. He also used to stand at the front door for ages ringing the door bell. On another occasion, I took him to a caf� type of place where you can paint ceramic cars, dinosaurs, etc. ? he just stood opening and closing the door because it had an old-fashioned bell above the door which chimed. He seems to have moved onto something else for now! Caroline.

Hi I've bought quite a few books and found that 2 of the best were: Surviving the Special Educational Needs System: How to Be a Velvet Bulldozer by Sandy Row ? This book is written by a mother who adopted 3 children with special needs (ASD). At first, I felt really disheartened as Sandy talks about her struggle to get the care that each of her children deserved (and what a struggle!). Then I got a little arrogant and thought if she can do it, so can I ? she gives a wealth of useful information from this book. I also think her circumstances were exceptional. Sandy also gives a great insight into what family life is like and describes in great detail each of the children's problems, traits, etc ? a lot of which I was very familiar and really struck a chord! This book has been like a bible to me. Asperger's Syndrome: A Guide for Parents and Professionals by Tony Attwood Hope this helps. Caroline.

Hi I know exactly what you're talking about! I took my 4 year old son to the dentist with me the other day and he took an instant dislike to the reception. Poor woman! She gave Robert stickers, etc, but even so he was very cross with her for no obvious reason. He pointed at her and shouted at her. A trip to the shoe shop is a nightmare. I find that I have to go when the shop will be quiet (eg 5pm/45 minutes before closing time) and forewarn staff. Robert dislikes anyone touching his feet and I've had to stop him from hitting the shop assistant. The list goes on. I'm afraid I may come across as being hard, but I don't even consider what other people think or say any longer ? my priority is calming Robert down. Robert is able to tell me he is angry, but not give a reason. I believe he has some understanding of happy and angry and althought it's early days, I'm encouraging Robert to give me 'thumbs up' when he's happy and 'thumbs down' when cross. Often, the signage comes too late, but I feel that if he understands how to sign, he may surprise me and forewarn me what's may be ahead. I believe this will teach Robert to recognise his feelings. With regard to how I deal with things . . . Well, I always lower the tone of my voice and physically get down to the same level as Robert. I tell him firmly, eg not to hit me because I don't like it and it's very sore. I don't use put him in a specific area eg naughty step (that enrages him!). I leave him where he is and advise him that I want him to calm down and only once he's calm we can continue playing. He usually grabs the nearest object around and throws it or even bangs his head off the walls. I'm afraid I completely withdraw attention, eg I transfiix my eyes on the TV (even if he switches it off!). I find that Robert usually calms down quicker that way ? if I try to reason with him further, I'm giving him attention and adding 'fuel to the fire'. This may sound soft, but I've found that if eg a favourite toy is withdrawn or favourite tv programme is switched off, the issue then becomes about that and not about the behaviour and makes the situation even worse. When we're out and Robert behaves badly towards someone, I just hope that they're understanding and when necessary, explain Robert's difficulties. It's really difficult, because I know if you have a child that's physically disabled, people tend to be much more sympathetic. I'm not expert, but hope this helps. Best of luck. Caroline.

I live in Edinburgh and trolled the internet night after night and found very little.

Hi My son is 4 and can be be happy one minute, then furious the next for no obvious reason. He is able to tell me that he gets angry, but not able to explain why (and I don't push for a reason as I don't think he understands why). He dislikes painting or writing so we're working on simple signs in attempt to get some warning if he's going to 'explode'. He gives me the thumbs up if he's okay/happy and the thumbs down is he's angry. Early days, but so far so good. May be worth a try.

Hi, I'm Caroline and I have a 4 year old son called Robert. Since Robert was 14 months old I started having real concerns about his behaviour (aggressive, self-injurous, unpredictable) along with lots of unusual traits, etc. Ever since then I've been battling to get someone to listen to me, without automatically assuming I'm off my head. I found that our GP and Health Visitor were very dismissive and told me Robert had the 'terrible twos' early (apparently that can last 2.5 years!). After writing some strongly worded letters and having been consistent in what I've been saying about Robert, we're finally getting somewhere (slowly!). Robert is currently in a fantastic nursery where, despite the staff finding him a real handful, they really care about him and are doing the best they can. Within 3 days of starting there, an EP had been assigned. Robert has now been seen on 3 occasions by a Speech and Language specialist; seen on 3 occasions by a Paediatrician; seen on 4 occasions by an EP. One to one care has been applied for when Robert starts school, but this isn't guaranteed. We're now lucky that we have a really nice care worker who visits for a couple of hours every week, to primarily observe Robert (and report back to the specialists) and offer a bit of support (and check out my parenting skills or lack of!). All specialists involved are now finally in agreement that Robert is showing signs of being on the spectrum, but are unwilling to give a diagnosis because he doesn't tick every box. Despite fact that we're receiving some support, can't help but think that money/funding comes into picture with regard to formally diagnosing Robert. However, I'm counting the days until Robert's next appointment ? he's been referred to the Communication Clinic at the Sick Children's Hospital in Edinburgh. When I received the appointment date, I initially felt very hopeful that Robert would finally be diagnosed, however that confidence has almost disappeared as I know what a massive struggle parents have on their hands to have their child diagnosed and I know what a struggle it's been over the past 2.5 years. I find it heartbreaking watching my little boy behaving the way he does (Robert is extremely aggressive and tends to flare up without warning or provocation) and seeing how other people distance themselves through ignorance and fear. I wonder what lies ahead of Robert (whether he'll get worse) and want to ensure I do everything I can for him. I therefore joined this forum to communicate with people who understand and are in the same boat and would be grateful for any advice.