davers79

I'm so annoyed!! We've waited over a month to receive the letter from the pead following DD's appointment in May. I chased the pead regularly explaining I desperately wanted her letter so I could take it to school etc before they break up for summer. Yesterday I finally got the letter and its RUBBISH It doesn't summarise the appointment at all. It gives no mention that the pead spoke to DD, asked her a few questions, all of which DD gave "wrong / inappropriate" answers to that 100% demonstrated what DDs speech and language problems are. The pead hasn't given her opinion at all in the letter apart from at the end saying she doens't want to see DD again but thinks I should speak to her teachers and arrange for transition support in Sept to secondary school! In the appointment the pead said verbally that she agreed with me that DD had ASD traits and tendancies and speech and language problems. I really needed her to say that in the letter so that school would hopefully take some notice. The letter is 2 pages long but is almost an exact copy of my original letter to the GP. I honestly believe the letter wasn't dictated or typed soon at the appointment. It really looks as though it was only done a couple of days ago after my constant nagging and chasing and looks as though the pead just re-read my letter and highlighted my concerns out of it. It keeps saying "Chloes mother says she .....", "Chloes mother has noticed she does ...." etc. I'm so frustrated. I've found details of a local SALT who I e-mailed with brief details asking her to call me. She replied saying it sounds as though DD needs to see an Ed Psych and have a SALT assessment and she is going to call me next week. Sounds much more helpful that the pead!!! How much of a diagnosis can a SALT give alone? Could a SALT diagnose Aspergers? Would we need to go back to the pead? Also is it worth holding out for an NHS SALT or should we pay to find an independant one - what are other peoples experiences? Sorry this is long! Thanks for reading

Hi Annross Welcome to the board :-) I'm in almost identical situation to you, except we don't have a diagnosis for DD yet. I'm also tearing my hair out about secondary school in Sept and desperately trying to get support in place before the end of term! At the moment our delay is waiting for the peadiatricians report - we saw her on 25th May and STILL haven't had a letter from her - which I need to take to secondary school when I talk to them. DD has an additional induction visit to her new school on wednesday this week which her current SENCO has arranged for 6 children who need it. Is anything like that being done for your DS?

Hi Loubylou I had massive concerns about my DD (in year 6 and she will be 11 in a couple of weeks) going on her school trip but I'm pleased (& proud !!) to report she did fantastically well. They went to Normandy in France, Monday to Friday this week and did all sorts of things like sailing and walking accross the quick-sands (with a guide!) to Mont St Michel. I really wasn't sure how she would cope with any of this, the different environment, change of routine etc but she was fine . They got home late last night and DD is sooooooo tired today - shes hardly moved off the sofa this afternoon! I'm going to have a chat with her teacher soon as see how she reakons she coped but I don't think there were any major problems otherwise the teacher would have said last night when we picked her up. In a way shes coped so well with it all, today its made me question whether I'm mad thinking there is a problem .... but I know there is really just suprised shes settled down so quickly afterwards. The teachers made sure she was in a bedroom with the right people who wouldn't stress her out too much and she had a room next door to her teacher. Also she was put in a group with her class teacher and not just a helper who didn't know her. I'm a proud mummy today Claire

Just wondering does anyone else struggle with their kids birthdays / xmas? My DD isn't "into" anything. Getting her to write a birthday list is almost impossible! All the relatives ask for a list every time and usually I have to go and add some stuff myself because she rarely comes up with more than a couple of things. Shes 11 in a few weeks, shes asked for a mobile phone and that was all she could think of. We've looked at the HMV, Game, Amazon etc websites together and I've hinted at possibilities and made suggestions but she just isn't fussed. I ask her what the other girls at school are into, what books they are reading, what films they've watched and she hasn't got a clue. Hey ho! Will get thinking what everyone can get her - its hard when she isn't that bothered about playing with anything though and doesn't like anything like lipgloss or anything girly either.

It was my original concerns that I talked to the GP about and then the GP referred us to peadiatrician. I spoke to school a couple of weeks ago (teacher and SENCO), they pretty much dismissed my concerns "because Chloe has a sense of humour she can't be on the spectrum"!! The only thing they did agree on is that she is very literal and that shes socially immature.

Thanks everyone, everything you've all said re-inforces my doubts about what she said Carol - we are in west sussex! I get the feeling this whole process is going to be full of frustrations and all the responsibility is going to lie with me to get referrals etc. We got the referral to pead via our GP. I didn't know where to start so wrote a letter to the GP setting out all my concerns and she referred us, didn't give any options to see anyone else but I guess it was a starting point. I'm not giving up hope, I'm going to wait for the pead's letter and see what she says then take it from there. Thank you

I took DD (age 10, almost 11) to see the pead today for the 1st time. She had told me it would be a 1hr appointment so I had high hopes that in that time she would go into lots of detail - in the end we were in and out within 10mins?! Anyway first of all she spoke to DD, asked her questions about which school she went to, who her teacher was, did she have brothers and sisters (DD paused and couldn't answer fluently without a prompt from me), does she have any friends (first of all DD said yes but then couldn't name anyone), does she like sport (DD said no which is true), when was she going to do her induction day at secondary school (she instantly answered the correct date but couldn't then answer the names of her friends who were also going to the same school) and when was sports day this year (said started to ramble about last years sports day that had to be cancelled for the lower years because it was too hot!)? The pead said she agreed with what I had put in my letter (I had said I thought she had ASD/aspergers traits and tendances and in particular problems with semantic/pragmatic language) but she couldn't make an official diagnosis based on my observations alone. She said there was nothing more she could do unless her school picked up on any problems and referred her for further assessment. She said she couldn't refer her to SALT because she was too old - even though my main concerns are her use and understanding of language, very literal, pedantic, speaking in statements, quoting tv adverts, going off track not answering the question asked, not understanding the important meaning of books etc, instead picking up on the irrelevant points etc. DD was on good form though and demonstrated exactly what she is like when answering the questions the pead asked her and was fidgety throughout the appointment, rumaging through my handbag for no reason etc. Also the pead was running a bit late and that started to stress DD out a bit before we went in there - she clock watches! So shes going to write a letter back to the GP and copy me in. She said I could then take a copy of her letter into school and see what they say/do. She mentioned School Action and IEP and asked if DD had one. I don't think she has, no-one has ever mentioned it to me, although she did seem suprised that DD had been taken out of class into a smaller group for help with reading last year in year 5 without me knowing anything about it? She asked if we had any family history of ASD, I said no nothing official but I can see some traits in myself and my mum. She dismissed it and said everyone has some degree of traits. I'm kind of happy that she had obviously read my epic 4 page letter and took my concerns seriously so she didn't dismiss us completely, but I am kind of suprised (maybe wrongly?) that she isn't referring DD for further assessment / input from other areas. I'm slightly confused, does this sound like a positive appointment? Would you be happy with the peads response - what would you do next? Thanks

Thanks everyone :-) Well so far so good. She wore them for 1.5hrs on Monday, 2 hrs yesterday and tonight has had them in since 6pm and has gone to bed wearing them (with the pot next to her bed incase they bother her in the night!). So I'm really really proud of her At the moment shes really keen to wear them to school, I'm quite reluctant to rush it though. Shes already a target for the bullies and I know with her speech the way it is with the braces things will get worse for her - although luckily (or unluckily?) she doesn't understand all the social context of some of the nasty things said to her. I think I will send a note into school though like others have suggested asking for her speech not to be made obvious until she gets more confident with them. Thanks everyone :-) x

Today my DD got fitted with her braces for the 1st time! Shes got "twin blocks" which to be honest are awful and I totally wasn't prepared for what they would be like. Not only are they removeable top and bottom braces but they have plastic moulds above each molar to realign her jaw and correct the overbite. Means she can't bite her molars together at all and therefore can't speak!!! Shes got to wear them 2hrs per day this week and then increase it to overnight next week with a view to her wearing it as much as possible! The more she weares them the quicker the treatment!! These braces are a massive impediment to her speech at the worst time ... we're just starting assessment for possible aspergers and speech/language disorder! DD has been in tears tonight because they are hurting her. I've tried explaining that it will take a few days to get used to them but the more she can wear them the quicker the process overall. DD has taken the dentists words very literally "wear your braces for a couple of hours each day" has become "I've got to wear them for another 21mins today so that equals 2 hours in total"! DD has had an eventful day, with the braces and also shes doing her SAT's this week too. This afternoon she looked completely exhausted, never seen her like it before? She was struggling to stay awake during dinner and looked as if she'd run a marathon?! Hopefully she has a good nights sleep and is willing to wear the braces tomorrow! Has anyone else gone through this with an ASD child? x

Thanks everyone for your replies - really helpful as usual especially Sam, its good to hear how others manager in similar situations Good news today .... after 3 weeks chasing I've finally got an appt for DD to have her 1st pead appt - its not until 25th May but I feel as though we're making a bit of progress ! Thanks again, this board is soooooooo helpful

My DD hasn't been assessed yet for Aspergers / ASD / language disorder so we have no diagnosis (waiting for appt). Even if she didn't get a dx of the above I'm convinced she definitely has ASD traits and tendancies so my question is how should I deal with these on a day to day basis ...? For example conversationally she goes off track, answers a question with a random off topic answer or something related but not directly answering the original question. So should we a) correct her gentley putting her straight and explaining where she went wrong, be more stern with her about concentrating and thinking before she answers, c)ignore her errors and just carry on ... we can often guess what she is trying to say by process of elimination or by asking loads more detailed questions we finally get to the bottom of it. Or is there another approach? Today we went to Drusillas park, walking round there was a pretend crocodile on a broken bridge and it was made to look like it had eaten someone (a hat was left on the bridge etc). We were laughing as we walked past then DD (shes 10yrs) said "why are you laughing?", I said "look the crocodile has eaten a person walking on the bridge", she said "no the crocodile is pretend he didn't eat anyone", I said "its a joke pretending that he ate someone, look you can see the hat from the person on the broken bridge", she said "I don't understand". So in this situation is it best to ignore and just accept DD doesn't understand things like this, or try to explain it? Yesterday the inlaws came over for dinner, DD was all over the place, clock watching before they turned up, then bouncing around, being silly, being "in your face" / really full on, being extreamely pedantic with everyone. Again how should we handle it? Should we tell her off for inappropriate behaviour (considering shes 10) or ignore it all? DH is worried that DD could start to use any dx as an excuse for not trying to understand things, but I think its becoming more and more obvious that there are certain things she just doesn't get. I'd like to know what other people do in situations like this? I find myself constantly saying "calm down" to her and simplifying things that shes been asked to do. Thanks everyone x

Well I've just got back from meeting DD's teacher and the SENCO and it didn't go how I hoped It was partly my fault, I went prepared with notes and a copy of the letter I'd sent to the GP but when it came to it I didn't even get it out of my bag!! I felt a bit intimidated sitting talking to 2 teachers, not that they were nasty but they seemed to come to the meeting with the attitude that I was just another mum worried about secondary school transfer and kept trying to reassure me about that and I didn't feel like they really listened to what I wanted to say ... so I think I backed down and didn't get across everything I wanted to say I'm not a particularly assertive person myself and wouldn't feel comfortable forcing my point I asked how DD was getting on accademically, shes doing fine which I already knew and is attaining level 4 (shes in year 6 doing her SATS in a couple of weeks). Her teachers said shes one of the loveliest children in her year and hardly ever naughty and a pleasure to teach, which is all lovely to hear of course, but I know shes not naughty and I hadn't gone to see them about her behaviour or her attainment. I said I wanted to know if they had noticed any problems with DDs language, understanding, speech and social skills. I said I had concerns she could be somewhere mildly on the ASD spectrum and that I'd got a pead referral. They said they didn't think there was anything wrong with DD, shes "just immature", she doesn't have aspergers because "she has a sense of humour" and "the children at school who do have that kind of diagnosis are spaced out in their own little world, with no sense of humour and don't understand jokes". They did agree she takes things very literally and likes to do work based on facts and concrete things and struggles with imaginative work. Yes DD does have a sense of humour but she doesn't understand things like "whats black and white and read all over?" etc. She has poor comprehension both written and spoken at home, shes very black and white with rules, she speaks in statements with no who, what, when, why so conversations are very cryptic. Also she often speaks in loads of detail assuming ignorance and is always very pedantic! Her responses come out jumbled and she goes off track in what shes saying (people often switch off to her). Socially shes immature and misses social cues and the unwritten rules in the playground. Shes an easy target with the other children to pick on her because shes so black and white and doesn't understand playground banter or politics. Shes can be very "in your face" with people and looks blankly if she doesn't understand or responds to a question with silence. A lot of the time children say really nasty things to her but she doesn't see it as nasty, just tells me in a very matter of fact way (my heart breaks when she tells me). She has a couple of friends but drifts between groups and finds it hard / doesn't know how to maintain friendships. Listening to her speak with her friends, she is so far behind them in verbal ability. Her concentration is poor (although has improved as shes got older) and shes unsettled by change and likes to know what is happening. When she does her homework she often misundertands what she should be doing and grasps the irrelevent points. She could quite happily spend 2 or 3 hrs sitting in the dining room doing her homework and doesn't understand she could be doing something else, she doesn't know how to use her time and doesn't have any interests. Shes always done afterschool activities but has never been fussed about missing them. When shes told off its always been hard to punish her as shes never bothered about anything. Physically shes been slow to learn to catch a ball (8yrs) and has trouble with co-ordination even now. Her fine motor skills are also poor and her handwriting is poor and inconsistent. Her teachers did agree to take her to her new secondary school for an additional visit before the main induction day in July. They are taking a handful of children who they think it would help (mainly the children with special needs) and will take DD as well now. I just don't know what to do now? Do I just wait and see what the pead says in a few weeks time? Do I go back to school again (which I would dread doing!)? Or should I write a letter to her teacher thanking them for seeing me and enclosing a copy of the GP letter which I failed to give them which explains everything I wanted to say in more detail? Any thoughts or advice gratefully received, I'm feeling pretty rubbish now ... Thanks x

Hi all We are waiting for our 1st appointment with the peadiatrician to start the assessment process for possible Aspergers / Pragmatic Semantic Disorder and maybe Non Verbal Language Disorder. My daughter seems to have tendancies for all of these. She is 10yrs old and I've no idea what to tell her when we go for the appt? She already has low self esteem and thinks shes no good at things so I don't want her to think shes seeing a doctor because something is "wrong" with her? How have others explained this to their children of a similar age? Also what kind of thing should we expect at the 1st appointment? Thanks for your help :-) Claire

Thank you so much Sally :-) I've sent you a private message but wanted to thank you on here too :-) Claire

Thank you both for your replies <'> I managed to get a GP appointment, I went without DD as I didn't want her to hear me discussing all my concerns initially (her self esteem is already low, I didn't want her to hear a load of negatives of things she can't do). The GP was good and I also took my 4 page letter of all my concerns and examples! Shes referring DD to a peadiatrician for assessment. Really hope the assessment comes through quickly as she only has 1 term left at primary school and I'm so worried about the transition to secondary school. Thanks again, I'm sure I'll be back here asking loads of questions