Lindyloo

How old is your DS? Luke was first diagnosed with ADHD when he was 5. However, the NHS would not look at him at that age, we had to have him diagnosed privately. We also struggled with his medication, because the NHS were reluctant to give it to him that young. Having said that, I am glad we pushed back then because at that age it was his ADHD symptoms that were dominant. It was not until he was taking his medication regularly that his other difficulties became apparent. Even then it took a further 4 years before his aspergers was diagnosed - 2 years to convince his CAMHS psychiatrist that there was more wrong with him (we managed to transfer his care form the private one over to CAMHS when he turned 6) and further 2 years on a waiting list for diagnosis. I do believe that if we had waited then we would not be fully aware of all his problems now. Linda

DS was first diagnosed with ADHD when he was 4. He has recently had a diagnosis of Aspergers added to that. He has been on Equasym for the last 5 years. It really does make a huge difference to him. As the psychiatrist who initially diagnosed him pointed out, we were medicating to make his life easier NOT ours. I know it is a very difficult decision to make, but it is definitely one we have never regretted. You can really see a difference in him when he has not taken his meds.

It was one of the things that was picked up during Luke's recent assessments. However, they did not tell us why it was so significant. We were told not to worry about it too much, but to make regular checks to make sue he can put his feet flat on the floor, and to get it looked at straight away if this starts to give him problems.

It brought tears to my eyes as well - he was amazing. I just hope it does not get too much for him at the next stages. Luke is always going on about wanting to perform - this gave me some hope that if he wants it enough, anything is possible.

I know exactly how you feel - we had our final meeting a couple of weeks ago. Even when it is what you expect to hear, it does not make it any easier seeing it on paper. It does get easier - I still look at Luke and feel sad that he really does have AS, and will always have AS. But at least now we know, and can start doing whatever we have to in order to give him the best possible chance at a future. And at the end of the day, he is still the little boy I love dearly - and it is his AS that makes him different, and special. I would not want to change anything about him. My thoughts are with you all.

Thank you for your kind words, and for your advise on what to do next. It certainly helps coming on here and knowing that there are people who understand

After a couple of years of loitering and occasional posting, I can now say I am officially eligible to be here. We had the results of Luke's assessments this morning and he has been given a diagnosis of Aspergers. It was really only confirming what we already suspected, but seeing it in black and white on the bottom of a report is still a bit of a shock. I do get the feeling though that this is just the beginning - as they say we have won the battle, now we need to win the war. I will probably be popping over to the Education forum for some guidance in tackling the LEA and school. I will have to face the SENCO who last said – "oh don’t worry about Luke. We have far worse than him here" Well at least we now have a report that confirms he is actually very good at masking when he needs to– but still has significant difficulties that need to be addressed. Wish me luck - I have a feeling I am going to need it.

After 2 1/2 years on a waiting list, and 3 months of assessments followed by another 2 months of waiting we have had the appointment through to discuss the findings from DS's assessments. Next Wednesday morning one of the SALT's from the team that carried out the assessments is coming to go through the results. So we should know for definite if Luke has AS or not. I'm not sure at the moment how I feel. Part of me wants them to say he has, because then at least we can move on, and start working towards getting him the help he needs. If they say he does not, where do we go next? After all the waiting I am now very nervous…..

Thank you all for your kind words. DS was very pleased when I told him that other people liked his poem as well. I certainly intend to keep a copy for our records. It expresses how he feels far better than he is ever able to do when asked directly.

I just felt I had to share this with people that understand. DS is 9. We have recently completed all the multi agency assessments to get his diagnosis. We are waiting for the results, but things are looking like he will be diagnosed with AS. As part of anti bullying week, they had to write an anti bullying poem at school. DS usually struggles with creative writing, but he got a merit for his. This is what he wrote...... I am a Person I am the person who pretended to be ill I am the person you wanted tp kill I am the persom whose toughness was high I am the person who still had to cry I am the person who wanted to be cool I am the person you used as a tool I am the person you wanted to destroy I am the person who was just a boy But I am a person ....... who knows how it feels What really brought the tears to my eyes was when he said " It was easy Mummy - I just wrote aout me"

I noticed something when I took DS out clothes shopping on Saturday, and wondered if it is common with AS kids. We went out for a couple of pairs of jogging bottoms, a smarter pair of trousers and a new hoodie. I took DS in to Primark, and first went to the jogging bottoms, where he proceeded to choose exactly the same pair as he had grown out of. For the smarter trousers, again he went for the stone coloured Jeans - identical to the 2 pairs we have at home in 2 smaller sizes. With the hoodies I showed him a selection of plain and patterned. He chose the navy one. I asked if he would prefer black or grey, or something with a pattern on, and he said no he wanted the blue one. Guess what colour his old hoodie is? - yes - navy. So we ended up coming home with an identical selection of clothes but in the next size up. He does not have an issue with wearing things that I have bought him that are different. He just seemed to be unable to choose anything different for himself. Is this some sort of comfort factor? Has anyone else noticed this behaviour? Thanks, Linda

Hi, Thank you all very much for the replies. It has certainly put my mind at rest. Luke is now 9, and as the clinical psychologist put it, apart from this age 3 thing, 'everything is fitting in to place'. Even as a baby, Luke was different from his elder sister. He did not like to be held or cuddled, he was much happier just on his own in the play pen or cot. I remember this distinctly because this is something I was looking forward to. Big sister was a very cuddly baby, you could hold her for hours and even curl up and go to sleep cradling her. Luke would have none of this. He very rarely cried. When he did you know something was wrong, and even then he did not want any physical comfort. The only toys he was ever interested in were those with repetitive music, or the puzzle / shape sorter type toy. He would repeat the same activity over and over again. He has never ever been able to cope with any sort of 'imaginative' play. He never gave any eye contact, and I felt that there was never any closeness or interaction with him. He would never really communicate needs, even though he could. We can remember a specific incident when Luke was caught trying to get water from the toilet bowl with a cup, rather than asking us for a drink. His language and other major milestones were met perfectly so there was never anything flagged. I just put it down to a boy / girl thing. That is until I noticed the other boys when he started nursery and school, and I realised that they were not like him at all. Anyway, things are happening now. Hopefully we should have the answers we are looking for fairly soon. Thank you again for taking the time to reply, and I may well be joining you officially very soon. Linda

Hi, After over 2 years of waiting Luke is finally being assessed, and is going through the full diagnostic process. So far we have had cognitive tests, home visits, sessions with the clinical psychologist. He still has a speech and language assessment to go. One of the comments that has been made that almost everything points to Aspergers. However, the thing that does not tick the right box is that he did show definite ASD tendencies even as a baby. We have been told that with Aspergers things do not usually become noticeable until the age of 3. Did any of you with children with a diagnosis of Aspergers see traits when they were less than 3? Could this cause a problem with us getting him properly diagnosed? He also does not quite fit in with HFA either, because there was no language delay. If anyone could put my mind at rest ...... I am dreading them coming back and saying that because all the 'diagnostic' boxes are not ticked, they can not say what exactly he does have. Thanks, Linda

Luke takes loratadine. The branded ones are Clarityn, Clarityne, Claritin, but Sainsbury's do an own brand one. THis is non drowsey, and does not seem to react badly with his ADHD meds. It does say on the box that it is not recommended for under 12's, but Luke was given exactly the same stuff by the GP a couple of years ago, so I am happy to use it. Having said that, his hayfever seems to be worse this year. Hi eyes are very bloodshot and gunky.So I may and up back with the GP anyway.

The following quote is off the DLA web site. It is date 2006, but I could not find any later update. 3. Can children travel in the front seat? What about 2-seaters and convertibles? Save for those in rear-facing baby seats against active front air-bags, children can travel in the front seat of any vehicle provided they are properly restrained. This includes 2-seaters or convertibles, even if the top is down. But see below about air-bags

Wow ? this is a really interesting topic, and one that I have often wondered about. DD1 was difficult to breastfeed, but with a lot of perseverance I managed to feed her for about 3 months. I did not enjoy it, but kept up with it as long as possible because I was made to think that I should. When I had Luke, I was determined to make a better job of breast feeding him. However, when I tried to breast feed him he was having none of it. He would latch on ok, but he had absolutely no natural suckling action. He just lay there. Over the first 2 or 3 days he did not feed at all, and got gradually more and more restless. As we were still in hospital (I had a caesarean) I got plenty of support, bit no one could get him to suck. In the end he was given a bottle with a large hole in the teat. This meant that the milk just poured in to his mouth. Like this he was fine. He could manage to swallow it, just not suck. Once we were home, I had another try, but could still not get him to suck, so we had to go out and get bottles, formula and teats with big holes in. Unfortunately the teats you could buy did not have big enough holes ? we had to get a sterile pin and make them bigger so that the milk just flowed in to his mouth. Interestingly enough, we had the same issue with a dummy. He liked having a dummy in his mouth, but he never actually sucked on it. It just stayed in his mouth for a while, and then fell out. I have often wondered if this was the first indication of his problems. Linda x

Thanks for the responses. It is really interesting to see that there appears to be two completely conflicting sides to this one. I will wait to see if anyone else adds to this. In the mean time, Luke is currently in trouble. While tidying the conservatory yesterday I found a stash of empty chocolate wrappers, where he had helped himself from the fridge (a definite no-no in our house) and then tried to hide the evidence. So he has been eating even more than we thought - and still saying he is hungry

I for one do not believe that the MMR vaccination had anything to do with my DS's problems. Yes he did have his MMR vacinations done, and it did cross our minds at the time as to whether we should go ahead with them, but we did. We did not become aware of Luke's problems immediately, it was a very gradual process, startin from about the age of 2, and we went through all the other possible options before we even considered the possibility of ADHD or ASD. But once we did start assessing these possibilities, it became more and more obvious that Luke had shown ASD type symptoms from the day he was born. I have my own opinions as to what caused Luke's difficulties, but the MMR vacination certainly is not one of them.

I was just wondering if anyone else here has ever experienced the same problem. My DS is constantly saying he is hungary. He will have 2 - 3 differant breakfasts in the morning (cereal at home, toast at school and sometimes something else as well), a large packed lunch and then he will have a huge dinner, pudding and then a couple of buscuits and he will still be badgering me for more food 10 minutes later saying he is hungary. He eats way more than I do. He does appear to have a quick metabolism, possibly due to the ADHD, but we reach a point in the day when I think he can not possibly still be hungry. Is it likely to be a sensory problem? Is he unable to tell when he has actually eaten enough? Or is he really just a bottomless pit with hollow legs. He is all skin and bones, with not an ounce of spare fat on him, so it must all be being burnt off somehow. Thanks for your help. Linda

Luke has also been showing signs of stress since returning after christmas. Like your ds, he is 7. We can always tell when Luke is stressed because he starts to wet the bed. I think he really struggled with the excitement of christmas (Luke has never been very good with excitement) and is now in a bit of an emosional termoil with having to return to school. I hope your DS settles back down again soon. Linda

Hi JJ's Mum, I do agree with what has been said by the others here. I feel it would be in everyone's best interests to make sure the formal diagnosis is known by the school. We are still waiting for a formal diagnosis to be done forLuke, even though all the professionals that deal with are pretty convinced that he has Aspergers. We have found at school, without the formal diagnosis, the way Luke has been dealt with has depended on the individual teachers concerned, their understanding of AS and whether they are willing to admitt there are issues and deal with them in an appropriate way. We have been very luck for the last 2 years. We have had teachers that accept Luk'e problems, understand them and deal with him in an appropriate way. This means that he is reasonably happy at school and is doing well. In year 1 we had a teacher who would not recognise his problems for what they were, and so he struggled. With a formal diagnosis, you have something that you can use with the school to make sure all your son's educational needs are met. We have found that Luke has been struggling more the further up school he has gone - the differences between him and the other children have ben more noticable as he has got older. But with the right level of support he is coping very well. Hope this helps. I have woffled on a bit Linda

We went to Orlando for 2 weeks last August, and we are going again next weekend for another 2 weeks. We are lucky in that Luke loves the thrill of rides (his usual reaction is ?That was horrible ? can I go on again?) He also seems to cope better with total change that he does slight change. He is all over the place at home at the moment because is usual home routine has been disrupted. If you take him away from home ? where he has no routine to compare with ? he is better. Luke really enjoyed it. He did develop some interesting coping strategies - like counting the number of steps he had taken to get from A to B, reading anything he could find - posters, signs etc, and when we were in parks he insisted on having his own copy of the map so that he could see where we were and where we were going. But we really coped much better than expected. Of course we did have some meltdowns and tantrums, but no more than we usually get at home. He coped very well with the flight ? the opportunity to spend 10 hours playing on his game boy was a real treat for him  And I think there were a couple of in flight films that he enjoyed watching. The guest services in all the parks could not have been more helpful. We got priority passes for everything, and did not have to queue at all. I felt much more comfortable using the passes there than I have ever been anywhere else (been to Euro Disney a few times as well) The staff were always more than happy to help out and we never received any funny looks for not joining the main queue. Luke is not a big fan of the characters ? but he did really enjoy all the all the shows, parades and fireworks, particularly in Disney. Yes - it is hot at this time of year, but most of the parks (with the exception of Seaworld) have plenty of fountains around that the kids are encouraged to use to cool down. Luke thought it was great fun to get soaking wet and dry out again in about 10 minutes. He became fascinated by the language, boring us all rigid with long lists of American words and what they really meant in English He was also surprisingly adventurous with the food. We have some fantastic photos of him tackling crabs legs and lobster. I know that everybody has different experiences, particularly as no 2 ASD kids are alike. But I wanted to say that we had a really positive experience from it. He has talked about it continuously and is really excited about going back (so am I)

Jessica goes to young careers events in Staffordshire. She has been with them about 18 months now, after being originally refered by SS (the only good thing they have managed to do for us). She really enjoys it. I think she likes being with other children that understand the pressures she is under (she not only has to deal with Luke and his ADHD/ AS but Dad is also disabled - so she does take on more that your average 11 year old) They do arrange a lot for the kids - she was out 1 day last week, 2 this week and she is going pony treking next month - in fact she is not home enough to do any caring at the moment Everything is paid for, and she is always picked up from home and then dropped off again after, so there is no extra pressure on us to have to get her to somewhere. I would recommend it to anyone.

I would have to say that I agree with thediagnosis route. Without a diagnosis you have to rely on the unofficial support from understanding teachers. We have been very lucky with Luke's Y2 teacher in that she obviously has experience of ASD's and has been willing to go out of her way to help, support and understand Luke's problems. His previous years teacher was exactly the opposite and spenyt the whole year with blinkers on. I do not think getting a diagnosis will instantly solve all your education problems, but it does give you something concreate to use in school to try and get additional help and support if the need arises. If it is not needed all well and good, but if it is having something oficial will certainly help. Linda

We should have had a meeting this afternoon at school with all the the autism outreach team, a clinical psycoligist, CAHMS person, school SEN and this years and next years teachers to try and put some measures in to place to make things better for Luke moveing up to Juniors. We had a phone call at 9am this morning to say the main person, who had organised it all, is off sick so it will have to be postponed. Just find it all so frustrating, and need to let off a bit of steam. We spent ages last night preparing ourselves for this, to make sure we knew exactly what we wanted to say and what points we needed to put across. I was sooo ready for this - thnking we might finally get some decent recognition of Luke's problems and needs at school, and now it is all on hold again. I just hope they manage to reshedule it for sometime this term, or else some of the value of having it at all will be lost. Feel like I just want to scream at the moment AHHHHHHHHHHHH