cmuir

Hi Got an appointment card for my 4 year old son to get a booster injection. I really, really, really don't want to force him in any way (might traumatise the wee soul for life ? he's got an amazing memory and wouldn't forget!). Spoke to health visitor who didn't have much to say at all. Does anyone have any advice on how to make the experience easier for him? Have to say, I'm not needle-squeamish, so have thought about letting him see me get an injection (with nothing in it!). Suggestions welcome! Caroline.

Hi Know what you mean! Not giving an answer is unacceptable. Saying you don't know is also unacceptable. Questions are usually about: 1. skin ? how is grows and why we have skin; 2. heart ? why we have a heart and what colour is it; bones; aliens; etc etc. I also noticed with my son that if he asks me to do something as long as I'm seen to be trying he is accepting of this. Best wishes. Caroline

Hi My son is now 4 and I'd say that over the past 8 months my son's sleeping pattern has improved a great deal. For the first 3 and a bit years, he'd wake up at the crack of dawn and be up until the small hours (the other night he got up at 7am, had no daytime nap (they're a definite 'no no'!) and ran riot until 2.40am!). Even during the night he'd waken every night almost without fail and either shout for me or climb in beside me and my husband. I'd wake up on the night's he didn't in a blind panic worried in case there was something wrong! I know some people may slate me for this (the paediatrician did!), but last Christmas we bought him a TV/DVD for his room and wall mounted it. He quite simply would destroy a book and throw it in my face if I attempted to read him a story! Well, I know it's not everyone's idea of a solution, but for us it works! Robert relaxes in his bed and watches a bit of Bob the Builder, Noddy, Spiderman and the like. It can take a while before he nods off, but the main thing was that it got him to lie back on his bed and relax. It's really difficult functioning on a few hours sleep and after weeks, months and years of it, you feel like you've an existence and not a life. I tried quite a few techniques and nothing except the installation of a TV in his room worked. We also put a dimmer switch in his bedroom. One of those projector lights can have quite a calming effect. Another piece of advice that I was given was to try and start winding things down after tea time in terms of play. Hope you find a solution! Caroline.

Think you've done amazingly well to be holding down a job and have a wife and child. Doctors are called GPs for a reason ? they are GENERAL Practitioners. A lot of people, including myself in the past, put a lot of faith in them. However, they don't always get it right and they aren't experts. Your GP is totally unprofessional to be so dismissive. You've came to the right place to get answers! I'm no expert, but there are a couple of routes you could go down. Firstly, you could make contact with NAS (www.nas.org.uk) and/or secondly, you could seek help privately. Best of luck. Might feel like you're going one step forward and two back, but be strong and you'll get there. Best wishes. Caroline.

Hi My son had several hearing tests as a baby due to the fact that he wasn't responding to sounds in the usual way by using appropriate eye contact. At the time it didn't make any sense, but makes sense now. Caroline.

Hi Does Robert hold a grudge? Oooooooh yes! He's only 4, but has an amazing long-term memory and so rarely forgets anything! He has recollected things that have happened 1.5 year ago and has recently became cross over that something. A fairly recent example is that six weeks ago I drove over a cobbled road and Robert wasn't comfortable with that at all. He really didn't like it and his hands flew up to cover his ears. There was nothing I could do, except explain that the road was old and that the road was bumpy because it was made of old bricks. He accepted my answer without making too much fuss at the time. Anyhow, Robert became unexpectedly cross last week and when I enquired why, he replied that he was angry "because of the bumpy road". If, for example, another child knocks into him by accident, he can become very cross indeed and lash out. Other occasions, he'll accept that it was an accident. In that sense, he's very inconsistent. One thing that I would say it that generally the threats aren't as a direct result of me or someone else displeasing him at that time. It's usually over something which isn't obvious to me or something that happened a long time ago. Something else that can also make him cross which results in threats, exhaggerated facilal expression, swearing, threats, etc is, for example, we were out for a walk and Robert was engrossed with his remote control thunderbird (one of his obsessions at the moment!). A woman who was merely being friendly had said to Robert that he was a lucky boy getting that for Christmas. Well, that poor woman, got a mouthful! He can be perfectly happy one minute, then literally the next can come out with all sorts of things. Best description I can give is that Robert is like a 'Jekyll and Hyde' character. Sound familiar? Caroline. Caroline.

Hi Thanks everyone for replies! In a way, it's a great relief and comforting to know that this isn't unusual. I recall being repeatedly questioned by a specialist asking what I talked about in front of my son and what I let him watch. She really made me feel like a failure, despite the fact that I knew I was probably far more careful about what I let my son watch than most other people. Nursery are horrified and other parents when they hear Robert talking about killing someone, or smashing windows, etc. Strange how little minds work. Just shows how something as innocent as, for example, a Noddy DVD can give a very distorted impression. Robert will not speak to the police, and refuses to believe his grandad's a policeman. On way to nursery one day, he was shouting and screaming at an older child that he was going to put him in jail and kill him! Thanks again. Caroline.

Thanks for the reply Brook. Have to say, I don't believe that smacking an already aggressive little boy is the right route to go down. I've been repeatedly questioned by specialists about what I let me son watch on TV. I tell them the same thing each time, which is that he isn't watching anything that any other child isn't watching (spiderman, postman pat, etc). People do point the finger though! I was pretty gobsmacked when I heard that child I first referred to saying exactly the kind of thing that my son comes out with. Struck me that maybe others have experienced the same. In a funny sort of way, whilst I was horrified (but hid it well), I was relieved at the same time! Thanks. Caroline.

Hi I'm pretty much in the same boat as you. My 4 year old son is due to start mainstream school in the summer. My son doesn't have a diagnosis as yet and the assessment process have been going on for 8 months so far. Because my son is very disruptive and aggressive, he's only just started to receive one to one at nursery. Sounds great, but that person isn't in any way qualified. I've been asked what my thoughts were on deferring, but feel in my son's case that would do more harm that good as intellectually he's very bright ? interacting with others is the main problem. Thankfully the educational psychology agreed. I've had to kick up a fuss and give all the specialists involved weekly or fortnightly calls to remind them we're still here and ask what they're doing! Think that's starting to pay off, although I've found we've went from having no one involved (took 2.5 years to get anyone to believe that I'm not neurotic and that it wasn't the terrible two's, etc) to having everyone involved. Seems we're being given the option of mainstream school with full-time learning assistant support which also cover break/lunch and in playground as well as backup support from a specialist teaching once a week for the mainstream teacher. The other option is to send my son to a special school purely to tackle the behavioural aspects of my son's behaviour. Think there are real benefits to this option as kids really need to be given guidance by someone who knows what they're dealing with and talking about! It's a difficult one, and I'm still undecided, but those are a couple of options. Might be worth asking! Best wishes. Caroline.

Hi Don't want to go into a great lot of detail, but has anyone else heard their child making really spine-chilling threats or comments? I took my son (whose 4 and is currently being assessed for 'something on the spectrum' (quote from specialist), initially thought to be Aspergers) to an adventure play centre and he was playing with a slightly older boy (around 6/7). They were playing happy with drums, when this kid grabbed one of the drumsticks and said he was going to stab my son and asked me to promise not to tell. I didn't panic, but firmly told him 'no'. Whilst this chilled me to the bone, it's the type of comment that I've heard my son come out with. My son has threatened to run out in front of a car and actually tried to do it ? I was petrified and shaken and headed for home as I couldn't go shopping after that particular incident. My son will say that he's going to poke my eyes out, smash windows, kill his teacher, wants me to crash the car, wants to get hurt, cut someone's face, etc. I know that my son's nursery and Educational Psychologist have documented numerous other instances when he's made very disturbing and often very specific threats. There's no way that he's seen anything violent/horror on TV and his DVD collection consists of postman pat, bob the builder, spiderman, noddy, batman, etc. (admittedly it's possible that he's seen snippets of the news, holby city, etc). I put it down to the way that he inteprets information and have found me being extra careful about what he watches. What concerns me is that if this is something that he's said, whilst I doubt he fully understands what he's saying, makes me wonder if there's any real danger that he'd attempt anything (he's already attacked me whilst I was sleeping at 3.10am one morning and kicked and punched me and pulled my hair ? thought I was being attached by a burgular until I realised it was my son). He has also lashed out at two of his teachers, a shop assistant and other children. Just wondered if anyone else has experienced the same and if so, how on earth do you deal with hearing comments like this? Caroline.

Hi there It amazes me that these so-called specialists don't listen to mothers. We've fed our children, wiped their bottoms and basically know everything there is to know about them ? that includes knowing when something isn't right. Stick to your guns. If your heart and head tell you there's something not right, gather as much evidence as you can. My son is 4 and I'm certain he has Aspergers. I've kept a diary over the past 6 months detailing everything that's out of the ordinary (my son told me he was going to run in front of a car and actually tried to do it, he's tried to smash windows, headbangs walls, hits me and his teachers, the list goes on!). I photocopied every page in the diary and sent covering letters along with the copies to every specialist involved. I found that it's very easy to forget what happens on a daily basis because I obviously live with my son I put up/see all his traits. It took me 2.5 years to get anyone to listen to me along with several nasty letters. I phoned them up 10 days later to ask if they'd read it (not all of it, I highlighted important bits). It was really only then that they actually did take notice (even just a bullet-pointed list eg 'took R to see a Winnie the Pooh show at the theatre and he just stood there for the whole hour without moving a muscle, didn't join in, collected fake snow into neat little piles'). Keep school reports of when he did attend. People can't argue with that! Sounds like you're doing the very best you can. I know that I run of steam sometimes, but there's nothing else for it but to battle on. There's a reason why your son isn't attending school/socialising etc and that will come to light. You will get there in the end! Best of luck. Caroline.

Hiya Just shows that with the right guidance and support that a child can come on leaps and bounds. Well done Lewis! He's obviously in an environment where he feels secure and where the staff care about him (that type of educational establishment can be damn difficult to find!). Brilliant news. Caroline.

Hi I have a 4 year old son who is currently being assessed for Aspergers. Cut a long story short, I've been emailing someone from this forum who lives in the same town as me for a few weeks (she's been fantastic!). I'd been firing lots of questions at her and updating her on appointments, etc. I met a specialist who didn't go into great detail but commented that she knew another mother who was also a Graphic Designer whose son has Aspergers and was very like my son in a lot of ways. Turned out the specialist was referring to the person I've been emailing! We finally met last weekend at an adventure centre specifically for children with mental and physical disabilities. I got there early and a while later a boy came running in and immediately played really well with my son. Turned out this little boy was the one the specialist was referring to! Call it fate or whatever, but both boys got on really well and seemed to be really tuned in to each other. The adventure centre was fantastic because for the first time, I felt my son didn't stand out like a sore thumb as he usually does in playparks. I felt my eyes well up several times that day. I'm certainly going to make a point of taking my son there and hopefully meet the other little boy because for the first time, I actually felt a bit relaxed and had no one huffing and puffing or tutting (my son also had a really good time!). Caroline.

Hi I'm not expert, but have read several fantastic books on ASDs. One of the best ones being 'Surviving the Special Educational Needs System: How to Be a Velvet Bulldozer'�by Sandy Row ? this woman adopted 3 children all the an ASD as well as other problems (eg abuse). Sandy gives an amazing insight into each of the children's difficulties and how she battled to get them diagnoses and a proper education. In this book a psychologist give a good analogy for the angelic behaviour in school and then horrendous behaviour at home. The psychologist (in my simplistic terminology!) likened the child being in class where everyone talks German whereby the child has to concentrate really hard to try and understand what's being said. That child tries to confirm, fit in and make sense of what's going on around him/her. Come home-time, the child's concentration has 'ran out' and the child is pretty stressed and anxious and lets off steam by behaving badly. Certainly makes a lot of sense. I've read similar explanations in several other books as well. Just wish these so-called specialists could be flies on walls for a day! Caroline.

Hi My 4 year old son does exactly as you've described on both counts (swearing and not wearing appropriate clothing for cold weather). It's really very difficult because nursery don't allow swearing due to the affect it may have on the other kids. I've tended to ignore it and found I've had good results ie if I make a fuss, he'll run around in circles ranting for ages (days even!). On the clothing issue, I initially thought that I'd let him go without a jacket as once he was cold he'd come running for it! Not the case. I've been reading a really ibnteresting book called 'Out of Sync Child'. It basically sheds a lot of light on sensory issues ? he may not even feel the cold! I now insist that he wears a jacket when outside. That usually causes WW3, but it's 'mummy' that has to nurse him (or try!) when he's unwell. I'm afraid I can't give advice as I'm in the same boat. Just wanted to let you know that you're not alone! Caroline.

Thanks. I'll have a look. Caroline.

Hi Does anyone know of any great, but affordable (ie under ?100) clipart software (for mac)? I want to produce some charts and things for my son which are specific to him. Thanks. Caroline.

Hi I've experienced a lot of the same! I'm of the opinion that these type of people are blinkered and they are the ones with the problem. As a nurse, you would assume she's cares so her response is surprising. She should be ashamed of herself by not showing the understanding that she should. Hold your head up high ? people like her have no idea what we have to deal with on a daily basis! Well done for keeping your cool. You acted responsibly by trying to explain and showed that you are a decent and reasonable person. Best wishes. Caroline.

Hi So sorry to hear you've had a really difficult time. I can totally relate to what happened. I know that sinking feeling when I take my 4 year old son to a quiet playpark and think great. Then, all of a sudden, literally car loads of kids appear out of nowhere. It all gets too much for Robert and I find that I desperately try to get him out of a potentially horrendous situation (ie he'll lash out, etc), he doesn't want to go, etc. I then usually have to take him away against him will for his own good and the good of others and then feel awful and then have to put up with the aftermath. I had a really good experience yesterday. I've been emailing someone from this forum (whose been brilliant) and we arranged to meet. An organisation called SPECTRUM gave me the name of an activity centre specifically for children with physical and mental disabilities, so that was the perfect venue to meet. I took my son there and straight away it felt 'right'. There was no one there tutting or huffing and puffing because we were all 'in the same boat'. Robert loved it. There were qualified playworkers there who were amazing. A little boy came in with his mother and played really well with Robert. Turned out it was the child whose mother I'd be emailing. I had a tear in my eye! Although I didn't take my eyes off my son, I have to say, I didn't feel so on edge. It was great to meet others in exactly the same position. To cut a long story short, I wonder if you could contact eg your health visitor, phone book, look on the internet, phone CAB, etc and try and find somewhere specifically for the disabled (I found that difficult ? facing that my son does have a disability that prevents him from interacting appropriately with others, etc). Someone asked me recently how I cope. I answered that I cope because I have to and that I love my son more than anything and that he desperately needs my help. But it's also the good days and the small achievements that keep me going when we have days like you've experienced as well. Take care. Caroline.

Hi I'm a big believer in gut feeling. I also hear others say that mother's know instinctively when something isn't right ? I believe that. I have a 4 year old whom I believe has AS. I've had to battle to get referrals, etc and constantly have to justify myself, but in my heart I know that headbanging walls, the horrendous tantrums, the odd conversations, crying for no obvious reason (the list goes on) ? I know this isn't normal. I'm sticking to my guns. Robert can ride a bike, etc, but that doesn't mean he doesn't have AS. I've also had people tell me that Robert is just badly behaved and I have to be firm (I keep reminding myself of the 17 reports that say otherwise as well as reminding myself about all the odd traits). Try not to lose heart. If you know there's something not quite right, fight tooth and nail to get a diagnosis. Remember specialists clock on a 9am and go home at 5pm, they have no idea what our lives are like! I know that it feels like one step forward and two back ? but I know I'm getting that little bit closer! Don't give up! Regards Caroline.

Hi Know what you mean about all these things being confusing. I think that's great that the school referred your child ? my son's first nursery buried their heads in the sand and left him to his own devices because he was a problem child. I can only advise what happened in my son's case. Firstly we got a referral to a child paed. She assessed him on 3 separate occasions several months apart. She checked his fine motor skills by setting up play-type of activities eg got him to use building blocks to build towers, asked him to balance on one foot, hold a pen and copy shapes, hold scissors etc. During the course of these assessments my son was pretty uncooperative, aggressive, etc ? lots of his traits were obvious. He was then referred to a speech and language therapist to assess his language and comprehension. Again this was over several appointments over a period of months. She was ask him to look at pictures and say what was happening, show him pictures of children smiling to see if he could identify the facial expression. He was also been assessed in nursery by an educational psychologist, health visitor, etc. I have to say we're still waiting on a diagnosis, but I do feel we're a lot closer to getting one. The whole process seems to take forever partly because there are certain milestones that children reach at certain ages. We've now been referred to a specialist hospital department (Communication Clinic) who are to some extent repeating the assessments already carried out. As time goes on, it's becoming more and more obvious. I've asked about statementing and I understand that it is a static document that is for all the specialists to see. I'm not overly concerned about the statement because I now have a collection of 17 repports which have been compiled since July 05 and the contents of those speak volumes. My advice is to ask the paediatrician about what happens next. Might be worth contacting NAS for advice also. Just wanted to share my experience of the process so far ? hope it helps. Take care and best of luck. Caroline.

Hi My son is due to start a mainstream primary school this summer. I'm now having doubts about mainstream and wonder whether it may be best for him to start in a special school. I may be sounding a little negative about whether my son can manage mainstream, just trying to be realistic about what the future may hold. Gut feeling tells me he won't manage mainstream. Can't help but wonder if he should go to a special school where he would receive a couple of years (or however long it takes!) specialist tuition in a class with 4 or 5 pupils all with special needs, and then be integrated back to mainstream. My stomach is in knots! I'm worried that if he goes to mainstream and if it doesn't work out, that we'll have to uproot him ? you know how important routine is!!! I'm also worried that if he can't handle mainstream school (or they can't handle him!), that he'll be stuck in mainstream. Has anyone found that they've been advised to "give the child the chance in mainstream", then found that their child couldn't cope and found that they've had to fight tooth and nail to get their child into a special school. I'd be grateful for any comments. Thanks. Caroline.

Hi I'm in exactly the same position as you. I have a 4 year old son who is currently undergoing lots of assessments by lots of so-called specialists. Frankly, we're being passed from pillar to post. I'm getting really fed up with it all, not to mention stressed out. We're currently awaiting an emergency referral to CAHMS and have been waiting 2 months so far! Again, I'm start to feel like you and wonder if it's worth it. Have to say, only thing that keeps me going is that I know there are services which can be accessed, but only after being given a diagnosis. I really feel my son is being short-changed and that's what's been giving me the motivation to keep seeking a diagnosis. I think pester-power can work wonders. Good luck with the appointment (would love to know if it goes) and don't stop 'til you get that diagnosis! Might be one step forward and two back, but you'll get there (and so will I ? I hope?!). Caroline.

Hi there My son projectile vomitted frequently (almost daily!) when he was a just a week old to about the age of 2.5. I kept a diary of how often he was sick and marched down to my GP and insisted something wasn't right because both he and my Health Visitor kept telling this was normal! I guess, I was reassured in a way that Robert seemed okay in that as soon as he had vomitted he was neither up nor down. Robert was given a barium ? solution to drink whilst being x-rayed. He was unbelievably distressed and had to be held down by 5 people. I ended up crying because he was screaming for me and I just hated watching him being so distressed. Don't want to put you off ? even thought he was very distressed, I'm glad I kept onto my GP and that Robert got checked out. I was relieved to know that there was nothing seriously wrong with him. He's not been emotionally scarred by the experience! Apparently boys are more likely to suffer from colic and reflux problems than girls. It can be caused by a weak stomach muscle, which can strengthen (without an operation) the older the child becomes. Definitely needs looked into though for your little one's sake and you'll be able to rest easy after investigation. Just a thought, but might also be worth keeping a diary for a week and noting down what's being consumed. That was something I was asked about. Keep on at your GP and don't take no for an answer! Regards Caroline. NB Thanks for the advice that you've given me!!!

Hi Getting ready bogged down... My 4 year is currently being assessed for an ASD (likely to be Aspergers). I'm being passed from pillar to post by our consultant. Rang her last week to say "I've now got in my posession 17 reports compiled by various specialists since July last year, yet why is that information either not being looked at properly or why is is deemed to be insufficient information to provide a diagnosis?". Also pushed for approximate date for diagnosis, asked if we were looking at 6 months or a year ? response was "a few months". That's quite positive. In the meantime, am getting no support from organisations that could help. This morning took son to park when it was very quiet. Watched in dread as car loads of kids pulled up by the side of the road beside the park. Robert was initially okay, but became a bit 'frenzied'. He was to be watched very closely as he has previously tried to hit a baby in a buggy. He acts very threatening to wards small toddlers (circles them growling and gritting his teeth at them). He has great difficulty interacting with other children and adults alike apprpriately. He stands very close (invades personal space and doesn't reaslise it). He is generally extremely volatile, ranging from being happy one minute, to becomes extremely angry the next, for no obvious reason. Just feeling really sorry for myself (and my son) just now. Can't even take him to the park without planning the trip like a military operation. Robert attends mainstream nursery with full one to one support. Other parents give us a very wide berth and won't allow their children to mix with us outwith nursery; one mother (who should be utterly ashamed of herself!) raised her voice and told my son that she and her son weren't walking down the road home with Robert. (My mother-in-law was with Robert at the time and was most annoyed and told her so ? so glad I wasn't there, I'd have been furious!). So what do I do? I can't have my son turning into a hermit, yet no one will come near us! I'd be very grateful for advice/suggestions. Caroline.