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