Lindyloo

Well done. I'll sure you will be a huge asset to your new school. Linda

Luke is exactly the same. He will sit on the rollercoasters looking absolutely terrified, then get off, say it was the best thing ever and want to go straight back on again He gets very stressed in queues, so we always have to take advantage of the queue jumper system, as one bad queue will ruin the whole day for him. But the rides themselves, he seems to love the sensation of being scared.

Luke has a very bad attack of hay feaver at tthe moment. Even the anti histamines are not helping overly, and he is constantly sneezing and rubbing his eyes. The big problem, though, is his nose. It is very blocked up at the moment, but instead of trying to blow it to clear it, Luke is constantly snorting. He come home from school yesterday saying he did not want to go today because he was getting in to trouble from both his teacher and class room assistant for doing it in class. I have told him to take tissues and blow instead, but it does not seem to have sunk in - he does not seem to be able to help himself. Any ideas on how we can get him to stop? Thanks, Linda

We were told the details of next year's class arrangements the week before half time, so we already know who Luke will have next year. The usual transition for all the children is a day in the new class during the last week of the summer term. We are hoping we may be able to get a little more for Luke, as we have a meeting with the Autism outreach team next week.

Pumpkinpie - yes even I was taken aback by the response we got. I was only phoning to find out where on the waiting list he was Thanks for the comments so far. Any more feedback would be greatly appreciated. Linda

When Luke was first diagnosed with ADHD, we were very reluctant to put him on meds. I suppose it was the perception of keeping our child 'drugged up' to make him easier to handle. We felt it was our role as parents to deal with his problems and that using drugs was in some way backing down. However, his psychiatrist at the time recommend that we try the drugs, and put it very well by saying that we would be putting Luke on Meds for his sake NOT ours. He said that if they worked the drugs would make Luke much calmer, happier and more able to cope with life. Based on these words we decided to give it a try, and it is a decision we have never regretted. Yes - it makes it easier for us. BUT the key thing is the difference the medication makes to Luke. He is quieter, more stable, more able to concentrate on things and generally much happier. It does highlight his AS side (we did not even really pick up on his autistic traits until he was on the meds for his ADHD) however he is much calmer and happier. Hope this helps. Feel free to mail me if you need any more help / advice / info. Linda

What have I missed ? I have always been more of a browswer than a poster, but I have always found TheNeil's posts very amusing. I have not been on much for the last 3 months (got my wrist slapped for spending too much time on the net at work and just don't ever have time at home) I'm just starting to sneek back on again, and I find there has been major sources of gossip while I have been gone. Congratulations to you both Now is there anything else happened on here I should know about? Linda

This has turned out to be a bit of a long one, so please bear with me. Just a bit of background, Luke is 7 and in year 2 at a main stream primary school, so he will be moving up to the juniors in September. He was diagnosed with ADHD when he was 4, and put on to Equasym to help with that (which does work very well) After a couple of changes in medical consultants, he has been seeing the same CAMHS psychiatrist for just over a year now. Since he was first put on the medication to control the ADHD, several people have voiced concerns that he also shows significant autistic traits (a view we very much share) and at his last CAHMS appointment last November his psychiatrist agreed to refer him to see a clinical psychologist at CASDAS (Communication and Social Development Assessment / Advisory Service) to get a formal diagnosis of Aspergers ( he basically said the he knows what Luke has got, we know what he has got ? did we want it to be formalised, and we said yes) Unfortunately the waiting list as CASDAS is about 12 months long, so we are still waiting. We have been very luck this year in that his teacher obviously has some good experience of ASDs and has put several measures in place to help Luke out, for example putting up a list of what is going to happen during the day on the board first thing in the morning, giving him warning if something out of the normal routine is going to happen, giving him 1 to 1 support, either from herself or the classroom assistant, wherever possible, removing him from situations if he is starting to show signs of distress etc. All of this has been done unofficially. Although Luke is on the Special Needs register at school, he has no extra help in place. In his last parents evening, his teacher said that academically he was extremely bright ? one of the best in the year. But he was being let down badly by his lack of ability to demonstrate he had understood. His hand writing is appalling, and very difficult to read. He also has difficulty staying focussed and actually completing the work given to him. She said that she was working around that this year (although they did at one point consider moving him down out of the top maths set ? even though his mental maths skills are way advanced of the rest of the year ? purely based on his inability to record what he knew) She did however say that this could become a serious issue next year in juniors as the work load becomes more intense and he could start to fall back quite quickly. It is obvious that he is finding school stressful. For most of the last year we have had problems with bed wetting during term time that stops during the holidays (although that has actually been ok for the last 3 weeks for some reason), reluctance to get ready for school in the morning, stress issues and meltdowns over insignificant things once home from school and so on. He also has issues with the other children ? they will not always let him play with them, they taunt him until he has a melt down (normally involving crying hysterically), he has even asked on a couple of occasions if he could go to another school because no one there likes him. Anyway, to get to the point (at last I hear you say) the combination of his current issues with school, his teachers comments about his academic level going down next year and all the various horror stories I have heard about how things go rapidly down hill with the move to juniors, lead me to phone CASDAS to find out where he was on their waiting lists. I voiced my concerns, and said that ideally I would like something official before September so that we can try and get some extra help in place when he goes up to juniors. Anyway, I got a call beck from the clinical psychologist who told me that Luke was number 76 on their waiting list. However, she felt there was enough concern to try and do something now. So she has arranged a meeting with herself, the Staffordshire Autism Outreach team, his CAHMS psychiatrist, the schools based CAHMS worker, the SENCO, his current teacher and his next teacher (if that has been identified by then) and us. This meeting is going to happen in 4 weeks time. This is a slightly unprecedented move, as they usually do not call in the Autism Outreach team until a formal diagnosis is done, and the SENCO did say if she calls them in she has to wait a year. I really want to make the most of this chance to get Luke some help ? it is a chance we may not get again any time soon and I really do not want to mess it up. So my question to you lovely people is, what advise would you give on how to handle this meeting? What sort of help should we be able to ask for, and realistically expect to be given? Are there any likely pitfalls with the move up to juniors that we need to be ready for? I would really appreciate any suggestions / advise that that you could give. Thanks in advance. Linda

Luke is usually terrified of anything that moves - cats, dogs, birds, insects in the garden, even our pet rabbit. If they try and come too near him he screams and starts to flap uncontrollably. At school yeasterday they had a visit from some animal people, and they brought in some creaapy crawlys for the children to see. Well, I was totally astonished when Luke came home with a photograph his teacher had taken of Luke stroking a tarantula's tummy It must have been so hard for him, but he seemed really pleased with himself that he had managed to do it. I think the photo was done because I would not have believed he could do it if I had not seen it with my own eyes. Big clap to my brave little boy, who has managed to do something I never could (I am a total woose when it comes to spiders ) Linda

So sorry to hear you had such a bad time of it. It is sucj a shame that your holiday was ruined like that. I would complain strongly - they need to be made aware of where things are going wrong. We have been to Disneyland Paris 3 times now, and have fortunately not had too many problems. We have been fairly lucky in that DS seems to enjoy Theme Parks - he seems to take some strange pleasure in being scared witless I must admit though, we flow the first time and vowed then never to fly to CDG again. Apart from DS's problems (although we were not fully aware of them at the time) , DP is also in a wheelchair. We were totally appauled by the French airport staffs treatment of DP. On the way out they got us off the plane and in to a little box on top of a crane, and then left us in there at about 30 feet off the ground for about an hour while we waited for someone to get us down again. On the way back they insisted on us checking his wheelchair in with the luggage, and then made him use a really narror chair with no arm rests for 2 hours while we waited in departures. He was in total agony , and he said that that he never wanted to go through that again. Since then we have driven once and used Eurostar once (which I would stronlgly recommend) We have never had any issues with using the blue cards, although you do have to be very thick skinned in Europe because we have had some nasty looks in the past, although we have never had any one actually be verbally abusive. I would have to agree though that it is much better in Florida. The Americans seem much more disabled friendly. We were actually told off by one member of staff for not using our fast access pass - the queue was not too long so we though Luke would be ok. I hope your next holiday is more successful. Linda

My son really does not get jokes either, although he would realy like to and gets very frustrated because he doesn't. He is desperate to be able to tell a joke. If big sister tells a joke and we laugh, Luke will repeat the same joke 5 minutes later, replacing a few key words, and wonder why no one will laugh at it 2nd time around. Then when he says something genuinely funny in genaral conversation and we all laugh, he gets upset because he thinks we are laughing at him. You can not win really can you. He does, however, enjoy slapstick comedy. He will often laugh hysterically at something he sees on the television.

We have used the exit passes a few times now in Disneyland Paris and also in Florida. I used to feel guilty about using them, but I have got used to it. And like everyone says, it allows Luke to enjoy an experience. He loves rides, but if he had to queue for an hour at a time to get on them, he would be so stressed that it would take away that enjoyment. And if it means we get to cover more of the places we are visiting that is just an added bonus

Luke is on Equasym for his ADHD. It lasts 3 - 4 hours at a time. He has 1 in the morning, 1 at lunch time and then he can have another when he ghets home if we feel he needs it. We find it works well for him. If you want any more information, just let me know. Linda

I'll start with a bit of background. Luke is just turned 7 and is in year 2 at our local primary school. He was diagnosed with ADHD at 4 and has since had an unofficial diagnosis for Aspergers. We are on the waiting lists to have this made official. We had a parents evening last night for Luke. The outcome was pretty much as we expected. His teacher said that orally he is doing really well - he has a reading age of 9+ and his mental maths is way up for his age. The problem he has is that he struggles with writing anything down, so he is in real danger of not fulfilling his potential. His hand writing is terrible - sometimes it is impossible to read and even at his best it is way below standard for his age. Even in maths, where he is very good, he is struggling with the writing side so he can not properly get across how good he actually is. His teacher is aware of the problem, and also how intelligent he actually is. She is doing everything she can to help him, he has progressed well with her. However she is concerned that he is going to start getting behind once he goes up in to juniors next year. He is also struggling with other aspects of school - particularly the social side. He is very anxious about it - he has started wetting the bed during term time, but is always dry during school holidays, he is also getting strange stomach aches at around 7:45 most mornings - again put down to anxiety. What I really wanted to know is, is there anything we can demand the school does to help him further? Will we have to wait until his diagnosis is official before we can really push? Would there be any benefit to trying to get a statement for him ? I am really after some advice from anyone who has been in a similar position. Like has such a high intelligence level, I would really hate it to be wasted. Thanks, Linda

Sorry for the late reply - I have only just seen this one. This is a subject very close to my own heart. Luke was disagnised with ADHD when he was 5. It was not until he was on medication to control the ADHD thet tha ASD symptoms started to be more obvious. It has taken us 18 months of pushing, and the 'professionals' who were monitoring the ADHD have finally acknowledged the autistic traits and agreed to do further assesments for an ASD. I have also read a lot of stuff recently about how ADHD is being seen more as a symptom of other conditions rather than a condition in it's own right. It's just that the ADHD bit is so prenounced it can mask any other problems. Linda

Sorry - hadn't realised that. I'll remenber for next time I would still be interested if anyone can give me any information as to what to expect next. Thanks, Linda

Hi There, After about 18 months of fighting, Luke's CAMHS psyciatrist has finally agreed that he does display autistic traits and is somewhere on the spectrum (Luke was diagnised with ADHD when he was 4 - he is now almost 7) He believes that he may have Asperegers. He has said he would like to refer him to someone called ****** ******* for further assesment. From what he said, it soulds like she is one of the key people in Staffordshire for deailing with ASD disgnisis. I was really just wondering if anyone on here is from Staffordshire and has any experience of her, or can give me any clues what to expect next. We have alreay had to complete an early development questionaire. Many Thanks, Linda Sorry Linda, we can't name professionals on the forum. I've edited your post and the title accordingly, but I've tried to leave enough information for people to respond to this. If anyone can help, please can you contact Lindyloo via pm. Thanks, Kathryn

I to would agree that getting the duel diagnosis is very important and essential to ensure our children get the correct support and consideration. Luke was diagnised with ADHD when he was 4, and was put on medication then. WIth the mediaction helping the ADHD, it became apparent that there was more to Luke's problem, but it has take 18 months of fighting to get the professionals to agree to do a second diagnisis. We have just started down the road of an ASD diagnosis as well after the phsyciatrist finally said - yes he does display autisic traits and yes he is somewhere on the spectrum. Interestingly, Luke has really been struggling at school since september. His teacher was aware of the ADHD, but as soon as I mentioned that there was also lileky to be an ASD as well, she changed the way she was handling him, and he is coping a little better now. I do not want a diagnisis in order to be able to make excuses for my child's behaviour, but I am hoping by having the correct diagnosis in place it will be he gets more help and understanding. I would much rather he is labeled ADHD / ASD than be labeled as just trouble and disruptive. Linda

Sounds very much like Luke (or should I say our young padwan learner) His current obsessions are Star Wars toys Star Wars DVD's (all 6 films plus the 2 Clone Wars cartoons. He will watch them continuously - although he gets very upset if he watches them in the wrong order) Any Star Wars games on his X-box or Game boy Star Wars books Star Wars comics. In fact - just about anything Star Wars. I have discovered the best way to drag him away from his toys to go to school is to tell him he is off to Jedi School. Don't know what we are going to do with all the Star Wars stuff we have aquired when this obsession finishes Linda

I must admit, this is my biggest fear for Luke. He is currently only 6 and just starting year 2, but his level of intelligance is staggering. He is reading books way above his expected level, and his maths is also higher than the norm for his age. School are saying he is coping ok, but we have noticed a huge decline in his behaviour since he started back. If he is going to find school more difficult to cope with as he gets older, how are we going to get the balance right between finding a school which will stimulate him and cater for his intelligence, but will also be able to cope with his increasing AS difficulties. Stories like this are just so sad and do not help to give us confidance in what the future holds for our children.

I did not see this one first time around. Just did it for Luke and he came out with a score of 140. This makes me even more determined to push for a diagnisis. Linda

Thank you so much for all your replys. THis really is very enlightening. Having seen the x-rays, we really could not understand how he was managing to stay so calm and quiet about it. It may also explain why the doctor on Sunday decided it was only a minor bone flake. He was possibly judging the extent of the injury by Luke's reaction. Oh well - we will just have to wait and see what tomorrow brings. Thanks again. Linda

I was wondering if anyone has any experience of their AS kids having a higher pain thresholds than normal. I am asking this because on Sunday evening Luke fell off a roundabout and fractured his elbow. We were in A&E for 5 hours before he had temporary cast put on, and after going back to the fracture clinic yesterday, they have said that it is a particularly nasty break (the bone has displaced and is crossing over the one next to it) They wanted to wait for an elbow specialist to correct it under anethsetic, either by manipulating it back in to place or operating on it, so we now have to wait until Friday. The reason for my question is that we have been absolutely staggered by how brave Luke has been through all this. Luke has a diagnisis of ADHD, and is believed to also have Aspergers, but has yet to be disgnosed for that. If he cuts himself, he will usually totally freak out, particularly if there is any blood. But during all of this he has stayed very calm and heardly made any fuss. Even during the time in A&E in Sunday the only time he reacted was when they had to move his arm - then he just screamed. As soon as they stopped - he was fine again. Having seen the extent of the injury it must really hurt him. But even now, he only cries out when he knocks ot or moves it too much. It just made me wonder if it is possible that his pain thresholds are higher than those of NT kids. Any experience / opinions would be very welcome. Thanks, Linda

This is really interesting. Luke is also the world's messiest eater. He would much rather use his fingers, and will only use a fork or spoon if he really has to. It is really difficult to get hoim to stay pocussed on eating - he usually takes far longer than the rest of us, and leaves a circle of mess around him. His teacher says she can alwasy tell what Luke has had for dinner - because it ends up with it all down his uniform. His latest thing is insisting on checking the sell by dates on everything before he will eat it. Surely this is not normal behaviour for a 6 year old ? And they are trying to tell me he does not need a diagnosis !

Hi, I am in exactly the same situation with my Luke. He was dx with ADHD nearly 2 years ago, and been on equasym ever since. We have had numerous comments that he also shows autistic traits, but nobody has wanted to take it further, especially as since September he has been coping very well at school. We had an ADHD review with a CAMHS psychiatrist a couple of weeks ago, and again brought up the subject of an official DX. He again tried to push it aside, but I kept on and on. I pointed out that it was all very well saying he was coping at school now, but I believe that this is purely down to him having a teacher that can handle him well. This may cchange next year - and I do not want to wait until then to start the process. I also said that there were many more resources available for help if you have a definate dx, so if it is thought he may have an ASD as well, why not offically confirm it, and of course I pointed out that we wanted to know for our own piece of mind. He eventually gave in, and has agreed to start the process off. So, if you really want to know, stick to your guns and push for something to be done. Linda x