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Post by annie on Oct 4, 2009 16:36:59 GMT
Hi giddy
Sorry I forgot to sign off this morning and have been out all day - came in wrote you a reply and pressed the wrong button!!
So briefly. If it's feasible I would suggest you don't move your daughter to another school at the moment - probably best the devil you know and at least they know her history.
Go for the second opinion but in the meantime get something going between yourself and your youngests school. In my experience teachers only notice the obviously disruptive child but are quite immune to noting the low level disruption caused by some children. It's only when parents ask a teacher to keep a special eye on their particular child that they realise how many times they are pulling the child up and giving negative feedback.
Set up a meeting with the Head and ask if they can set up a Home- School diary. You're asking the teacher to keep a brief daily record about your daughter noting how she does when asked to complete a piece of work - is she distracted, is her work not completed, does she get upset angry etc. Also ask how she interacts with other children. Tell the school you will keep a similar diary noting what she says in general about her school day - good bad etc. You will also record how she tackles any homework. Ask for it to be sent home on a weekend so you can record your part and return it to school on Mon. After the month you would like to meet again with the school to review the information. Given the concerns you have about your daughter say to the school something along these lines " I'm sure you'll understand how concerned we are about ? and am sure you are equally concerned to rule out any difficulties she may have which are getting in the way of her achieving her potential" You may not feel they are taking her problems seriously enough (and I think they are not!) but they will find it difficult not to co-operate with such a concerned parent!
With regards to your oldest ask to meet with the school Senco ( Special Educational Needs Co-ordinator). Unlike primary Senco's she is likely to have had some training in Special Needs and should at least be willing to take on board your concerns. Say you would like similar feedback from all her teachers (likely to be 8-9) and you will keep a similar diary so you can meet up after a month to review the info. Schools are often surprised to find when they do this, how much difficulty a child is having.
Good luck
annie
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Post by Deleted on Oct 5, 2009 20:40:54 GMT
Thanks Annie, We have tried a the diary thing for both of our girls. The one for the youngest was a half hearted attempt by the teacher that lasted only a week before she stopped filling it in. But it did show many of the problems we expected to see. We should have been more assertive but the teacher kept assuring us there was no problem. The diary for the eldest showed hardly any problems at all even though she was held back in detention, told off many times for talking/messing and kept asking for help because she didn't understand what she was doing. In fact, one of the stand-in teachers used it against her to humiliate her in front of the class (but she was chuffed to bits because it gave her more street cred ;D). I don't think it was explained to the teachers what the diary was for. I know it sounds like I am making this stuff up but I haven't told a single porky about any of this. The diary thing is a very good idea. Now that we know that our girls are quite clever (thanks to CAMHS), I'm sure the school will be more co-operative in explaining why they are falling behind (they won't want to draw attention to their own faults). And we will speak to SENCO about our concerns. Thanks again Annie
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Post by Deleted on Oct 11, 2009 17:57:10 GMT
Hi all IF you have the finances I would advise going for a private diagnosis and when ok with meds swap to NHS as this will save you all a lot of heartache ! I realise that this is not always possible but if it were me I would find the money approx £1500 I would think (we paid £1000 in 2005) It was the best £1000 I have ever spent ! We saw Dr Campbell I think was her name at Dr Kewleys practice in Sussex / The Neurological Centre cant remember proper and full name but suffice to say we had an appointment and my son was diagnosed there and then and we walked out with a script for Ritalin ! Unfortunately it was short acting but soon we had it changed to the Ritalin XL as the short acting was a nightmare ! Hope this helps !! Sorry if it does not as I know how draining the NHS system can be and how schools dont really help ! LOL Light and Angels xxxxxxxxxxxxxxxxxxxxxx
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Post by Deleted on Oct 11, 2009 17:59:41 GMT
So sorry it was 2002 that our son was diagnosed at age 5 and he has gone from strength to strength with ups and downs along the way ofcourse !!!
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Post by Deleted on Oct 30, 2009 10:47:06 GMT
So sorry to butt in here, i should have replied sooner but haven't really been in the parenting forum much. I'm so upset to read your story i could cry for your youngest dd I just can't understand the struggle, there's clearly a big lack of understanding/support in your area. My dd had her dx last summer, before her 5th b'day. I have the choice to discuss meds but during school term time i can handle her symptoms, I'm probably going to have to think again before next summer. I simply put, can't cope during holiday's, I'm ashamed to say.. She is combined adhd & has some similar symptoms to your dd. I'm not sure if this will help but I'll outline our difficulties so you can compare. From what I've read girls can be very hard to spot at school.. She's very hyper, impulsive, swings from gentle & very loving to dangerous & violent, has no friends, very immature ( i have to be very clear with her when i communicate, much in the same way i do with my 2 year old), She's super-bright, never stops all day, (you'll know what i mean here), has never slept through the night her whole life, just weaned her off bottles as her teeth are affected, but has to have comfort item. No interest in toys or items, so no bargaining power on my part. Never stops talking, very obsessive, bullies younger sister, can be very charming & thoughtful, underweight for age, but does eat well. Very artistic, I'm in awe of her creative talents! Phew!! Sorry to be so random with this, i was trying to think of everything! Do these symptoms sound familiar? Its exhausting, the only reason i do cope is having the break while she's in school. Her teacher did fill in the Connor scale last year. I have no idea about the result, but it was a diagnostic factor. I saw one useless paed. for a year before he left to go to New Zealand. In the meantime i took part in the parenting course which helped, the course-leader picked up my symptoms & i began the 2 year journey to my DX. The course is very useful, but if you suffer from adhd yourself, the course runs way too fast & intense, i took a lot longer to implement the suggestions. Some aspects do work, so worth persevering. Then we were seen by a speech/language therapist who ruled out problems there. So we finally saw another paed who had the Connors scale returned from dd's reception teacher. This stupid piece of paper confirmed it to them she was likely adhd??? We were then referred to a child development center, formally diagnosed & have been offered 5 monthly appointments. so the jist of this, if i haven't ranted too much, is, i want to stress go with your parental instincts here. I have always known there was something not right with this child. It can only take one badly informed professional to have you seriously doubting yourself, while living in hell at home on a daily basis, not coping. I'm about to have another battle with my 8yr old son. Its proving harder as the children are older?? I apologise for the rant, your dd would be a great little friend for mine!! Imagine the mischief lol Simone x
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Post by Deleted on Oct 30, 2009 10:53:34 GMT
I meant to add, i hate the reward system at schools these days, we have clouds, leading to thunder at my dd's school, wtf???
the child-therapist on the adhd parenting course was infuriated, said, all the teachers need Webster Stratton training, or positive childcare training! Not pictures of clouds, thunder & a sun on the wall?? LOL
So forget the stupid traffic light thing!!
I meant to say, my daughter thrives in school too, apart from the lack of concentration & talking incessantly, the behaviour is good during class, she enthusiastically helps the teacher, loves art & books. So you're not going mad, all children with adhd have the ability to thrive in certain environments, & some love routine.
Don't give up x
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Post by Deleted on Nov 3, 2009 23:48:38 GMT
Hi simone, sorry for the time its taken me to reply to your post. I had read it a couple of days ago but........no excuses The symptoms of your dd (whats one of them?) sound very familiar. I'm glad you have been able to get her a diagnosis and the help she needs. I did laugh at the idea of your dd getting together with mine. I'm not sure 'mischief' would cover it We have far from given up. School is kinda giving us the sort of feed back we have been expecting - poor memory, attention wanders, quick to start on a task without understanding what she is supposed to be doing, easily upset etc. and she is having extra help with her maths and literacy. But the teacher just keeps telling us that she needs be more mature with her behaviour and work on her memory! Ooops nearly went on a rant then On the plus side CAMHS have given us a report of their findings which pretty much says that what they have seen of her outside school is consistent with what we have been telling them but this contradicts the information given by school. Which is nice. Sometimes I just wish she would lose her rag at school instead of turning inward and getting upset, then someone would take notice. I'm glad my two are girls. Boys are supposed to be worse aren't they? The biggest problem we have with our eldest is her impulsive motor mouth! There was a time when I thought you could reason with the kids and help them see each others side of an argument to diffuse the situation before it got out of hand. Well, thats gone well and truly out of the window! I'm thinking of getting them both sumo-suits and leave them to it! Eldest is beginning to have some more serious problems at school - some of her grades are plummeting and she is getting detention for lost, not done and forgotten to be handed in homework. No chance of help for her - apparently she is too clever. Not sure what I can do for her. Went on a rant anyway didn't I! duh!
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Post by roland on Nov 4, 2009 17:01:52 GMT
Hi guys, Just wanted to chip in here and add that if you have trouble getting the help you need from schools, you should let the school governors know because they have a legal duty to help. This is what the School Governors Guide to Law says: The governing body has responsibility for making sure that the school complies with the equality duties set out in the Race Relations Act 1976 (as amended by the Race Relations Act 2000), the Disability Discrimination Act 1995 (as amended by the Disability Discrimination Act 2005) and the Sex Discriminination Act 1975 (as amended by the Equality Act 2006). The general duty on schools is to have due regard to the need to eliminate unlawful discrimination and to promote equality of opportunity in the area of race, disability and gender. Specific duties require schools to implement specific equality schemes in those areas. More information can be found here on page 164 www.governornet.co.uk/linkAttachments/GTTL%20pdf.pdfThe Government says that the Disability Equality Duty for schools requires them to "take a more proactive approach to promoting disability equality and eliminating discrimination." I've attached a copy of the guidance for schools that helps them comply with their duties Attachments:
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Post by roland on Nov 4, 2009 17:06:21 GMT
btw the guide to the disability equality duty says the following: Schools have to involve disabled pupils, staff, parents and others in the development of their scheme. Disabled people need to be involved from the very start and their involvement needs to inform the preparation, development, publication, review and reporting of the scheme. If you start quoting these things at the school, you may find that they suddenly realise their errors and become more helpful Ooops sorry forgot to add this link to more information: www.teachernet.gov.uk/wholeschool/disability/disabilityandthedda/istomdisabled/
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Post by roland on Nov 4, 2009 17:14:40 GMT
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Post by laura on Nov 11, 2009 12:18:32 GMT
im so sorry to hear about the problems your having with diagnosis giddy, it sounds like a nightmare. i thought especially with the every child matters framework it would be easier to get help for children ive been told to just wait and see at my sons school, as hes 5 (6 in a couple of months) and have had very contradictionary (is that a word?) veiws/comments from the teachers concerning my son the headmisstress said they had noticed that he is not progressing as well as he should do and they are keeping an eye on him, his class teacher said she noticed he has problems getting started on things, hes in special groups for litrecy and gross motor skills, but in a gifted and talented group for i.t. however at parents evenening she said hes fine and and i shouldnt worry too much, pointed out he sat and concentrated on making a bear pupet for an hour, but he loves art and crafts so he can concentrate on stuff like that i dont know whether to leave it and see, as i dont want to put him through the process of assesment if he doesnt need it as he is very emotional and i dont know how that would affect him. sorry for stealing your thread giddy but i just dont know what would be best. i think ill speak to the teacher and maybe ask about doing a diary as my sons feelings about school and problems he says he has with friends ect dont match up with the teachers comments about him, he seems to hold his emotions together at school but is sooo upset when he leaves the class room. rant over ive kinda worked some stuff out in my head by writing it down
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Post by Deleted on Nov 11, 2009 17:26:21 GMT
Whats your son's behaviour like at home Laura?
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Post by laura on Nov 11, 2009 18:35:26 GMT
hes hyper, doesnt listen to what i say, i have to make sure he stops whatever hes doing and looks me in the eye when i talk to him, which is a challenge in itself, cant really follow intstructions if i ask him to do something without standing there and watching him he just ends up doing something else i.e ill ask him to get dressed and i find him half dressed watching tv or playing (thats if im lucky and hes made a start)
hates bedtime, takes forever to get to sleep, doesnt usually sleep through the night, he has night terrors or just wakes up shouting me and when i get in there he doesnt want anything,
cant get him to sit still long enough to eat dinner/do homework. he has mood swings, gets irritated, frustrated and upset very easily, hits himself on the head when hes angry, its like he stutters when he speaks, but its not quite stuttering he just cant get out what he wants to say, and gets frustrated, he still doesnt pronouce some of his words properly but when i correct him and repeat the word a few times (making sure hes listening) he does manage to say the right word from then on hes very messy doesnt play with anything for long. he wears me out constantly wanting attention, it seems the only time hes still is if hes watching his favourite programmes on the tv (but his favourites change too often for me to keep up!) or making things he does things to deliberately to annoy me and others, always blames everyone else for things he does/mistakes he makes, very clumsy always covered in bruises but even with all this hes a little character and lovely, everyone likes him, dispite this he has low self esteem ive always thought there was something not quite right, but the school is just making me doubt myself.
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Post by andy12345 on Nov 11, 2009 19:24:29 GMT
Laura, it sounds like a right old stress.
One thing I would think about for the future. Watch out for the bruises, because it only takes one "concerned" teacher/person to point it out and the - now very "dedicated" social workers - will be on you and you will have to have a defence.
Frustration is certainly er.......frustrating? o.O
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Post by laura on Nov 11, 2009 20:45:00 GMT
i know i do worry about it sometimes, but ive got people to back me up on that one, and hes very clumsy at school too. ive just found dots the size of 1 pence peices on a wall in everyroom in the house, in permanent marker! where he gets them from i dont know because im sure i took them all off him after he fully covered his arms in permanent marker 'tatoos' when i asked him why he had drew the dots all over the house he said its so he didnt forget! what i dont know
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Post by annie on Nov 12, 2009 9:52:53 GMT
Hi giddy
I read your post a few days ago and wanted to have a good old rant but I know that's not going to help!!
You mentioned your eldest was having more serious problems at school but no help available because she's too bright - it must make you feel really impotent to have this kind of feedback.
Having you and your wife be told to "wait and see" with both your girls is not an option - they need help now.
Your biggest problem is having the Camhs psychiatrist who appears not to have the expertise to assess and dx Adhd. In your area you have the Parent support organisation (sorry can't remember it's name). I'm sure they will have some idea about who is a "good" psychiatrist" in terms of recognising Adhd.
Why don't you ask them for that information and then go back to your Gp and say you want a second opinion regarding your daughters - you are entitled to have this second opinion. This waiting around by the professionals, for something to happen is just infuriating.
You've probably mentioned it somewhere but are you any closer to being seen at the Maudsley?
annie
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Post by Deleted on Nov 14, 2009 1:29:22 GMT
Hi Laura, sorry to hear about the problems both you and your son are having. Don’t worry about ‘stealing the thread’ – there is advice on here for every parent that has similar problems to us. It sounds like your sons problems are going to be more noticed by the teachers at school than my daughters, which will help no end in getting a diagnosis. Hi annie, I’d have thought you’d be sick of me by now Last I heard about my referral to Maudsley, my GP was waiting for the governors to approve the funding. Apparently they meet once a month so I guess its time I gave my GP a call and find out whats going on. Bit worried how I’m going to get there and what state I’ll be in – it’s a long way from Manchester. Worryingly, ADHD Northwest said that the CAMHS child psych was pretty good. My youngest’s teacher seems to be more tolerant of her quirks and she is not being moved up the traffic light and she is chuffed to bits when she is given a green certificate at the end of the week to say she has been good. We won’t find out about her grades until we get her report. Not really building a good case here. We still have that appointment with the paed in December so we can run it all by her. Our eldest is having more problems at school and we have been getting calls from school because she is late for her class (a misunderstanding according to her) and she has had detentions for late/lost and forgotten homework. She is very chatty in class and according to her is constantly having to ask the teacher to explain things. But, we have just had a progress report from school and other than the chatting she appears to be doing OK. I guess some would put this down as normal teenage behaviour. I dunno
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Post by annie on Nov 14, 2009 22:35:37 GMT
Hi giddy Sorry my idea didn't help - if this is quite a good psychiatrist I hate to think what the others are like!!
Maybe everything will become clear to them when you get your dx
Press ahead with your own referral and let's know how that goes.
annie
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Post by forgetnotme on Nov 15, 2009 0:12:12 GMT
hi laura having just read your post several things came to mind. don't let anyone make you doubt your insight and intuition of your son and his behaviour. I knew there was something different about my kids,three of them. My eldest didn't have an easy passage through her education, although I couldn't see it, all I could see was that she was just like me.she made it through to adulthood but how much easier her life would have been if ADHD was recognised in her day.
My son did well at school. He always behaved at school but was always unique at primary. I will never forget the times when he would come out of school and kinda beat up on me. he had been good all day and the strain and frustration released at the gate. he's a wonderful dad now. It's very rewarding to see how he handles his very active,always on the go,challenging daughter.
My youngest daughter was hard work as an adolescent, Oh and all the time really!!! with a lot of support(2hour telephone calls with the odd dash in the car) she finished her course. She certainly has the stubborn persistant streak,and as creative as they come To cut a long story short she now works with her husband in their own business and has never been happier though life can still be bumpy.
I did what I could to make sure they never felt as bad as I had done in my life BC (before kids) though I wasn't overtly aware of this at the time.
so laura and giddy sticki to your guns and believe in yourselves and your kids. ADHD can be a positive so keep pushing for your kids. and one day I you can be as proud of your kids as I am of mine. xxxoooxxx
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Post by Deleted on Nov 15, 2009 0:43:58 GMT
I agree with trying the meds in the hols as thats when I and my son started on them ! I cried like a baby the first day which is a common side effect !I think its more of a release of feelings after struggling for such a long time ! Have recently reduced my sons meds due to puberty we think ! He just wasn't himself when we went on holiday so tried him with less as it was an activity holiday and the difference was immediate ! Back to the boy I know ! Funny and happy !! x
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Post by Deleted on Nov 15, 2009 16:41:03 GMT
I'm planning to review meds for dd this March, in time for hols, distresses me to admit, but can't survive another 6 weeks no way..I've tried/trying everything
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Post by Deleted on Nov 15, 2009 21:54:11 GMT
Annie, I really appreciate your 'ideas' and will be doing as you suggest and going back to the GP and will go somewhere else to get a dx. The child psych has only ever diagnosed teenagers and we still firmly believe that youngest has ADHD and everything we have learned suggests that the eldest has ADD. I thought we would speak to the paed because I suspect the GP would only refer her there anyway. Failing that, we will try a different route. We know how important it is that we get a dx but the pressure of getting her diagnosed has eased a little because the teacher seems to be more understanding as she is not getting told off as much and she is getting the extra help. She seems to be getting worse though, today she lost her rag in the supermarket and stormed off to give a woman a ‘what for’ because she gave her duff information when she asked her where the toys are (wandered off again – need a leash). I had to physically stop her. But she has had more than the usual emotional ups and downs today. While I’m on about it, if there is a bang in the store or if you can hear balls being bounced, bikes/scooters ridden down the isles at speed etc. do you have that overwhelming sense of doom ‘cos you know its your child doing it? I don’t recommend taking them to Halfords, Toys R Us etc……and Ikea, definitely don’t take them to Ikea! It doesn’t seem like we can do anything for our eldest in terms of a dx unless things go really badly with her grades at school. We are constantly on her back about homework and she is soooooooo forgetful its driving us crazy, never mind her. If we could get her to shut up things would be so much nicer. As you say annie, perhaps my eventual dx will be the key to unravelling this mess. I spent days/weeks/months on edge waiting for each of our appointments, letters and phonecalls. Desperately hoping that each one would give us the answer we have been looking for. After so much stress and endless disappointment I felt defeated and numbed. I know Maudsley is the best place to go for a dx but I have lost my faith in the system. GP can't offer anything to help because he wants the ADHD specialists to see me in my 'raw state'. Nothing left to do but go with the flow for a bit and see if it gives me some sort of direction. I guess it all hinges on Maudsley. Will phone GP tomorrow and see if they have been given the OK to refer me there. Another ramble over with (sorry). Good luck with your son's dx laura. Hold the phone! Annie, I know I'm a bit slow but.... On the 'symptoms, diag & treatment' section on the ADHD page is says : 'There is also a less common and more severe form of ADHD called Hyperkinetic Disorder' (yup, I can read too All we could get out of the child psych is that 'using bleugh bleugh bleugh and information from school he could not diagnose her with 'hyperkinetic disorder'. So the question is, is he using this as a cop-out for not diagnosing ADHD or am I just grabbing at straws?
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Post by forgetnotme on Nov 15, 2009 22:47:45 GMT
your post reminded me that whenever i took my kids in shops i would make the two eldest hold my jeans back pockets while dd2 was firmly strapped into the pushchair. sometimes I would make them stand with their fingers on the counter while I paid just so I would know they were out of mischiefs way. take care of your daughters' self esteem giddy and teach them to think for themselves and you will have done a good job. i know life isn't easy with all this adhd flying around but keep your pecker up and i'm sure the future will arrive and be rosy
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Post by Deleted on Nov 15, 2009 23:08:52 GMT
Thanks forgetnotme, she never holds on to anything for long. If she is 'on one' we sometimes have to clamp her hands to the trolley or put her in it. But we've found a better option is to give her tasks to find things in the store or stand on the front of the trolley and I make the ride a bit er, interesting. To be honest, if I'm 'made' to go shopping I usually take her for a wander around the store and find something more interesting to look at whilst Mum does the shopping and we re-join her after she has paid ;D. She climbs on the counter (and anything that has a foot hold) and chats endlessly to the person on the till. When we are packing she finds the store leaflets and hands them out to anyone and everyone And she likes to re-arrange the chairs in front of the checkouts. And there's more....but I'll spare you . She sounds like a badun but most of the things she does has good intention. Wife won't take both the kids shopping at the same time.
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Post by forgetnotme guest on Nov 15, 2009 23:55:06 GMT
oh yes the great distraction strategy. wish I could remember more of my strategies but I think you have the siruation "under control" sounds li8ke your two daughters are very lucky to have such good parents all i can give you is my understanding
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Post by .... on Nov 16, 2009 21:37:23 GMT
Hey Giddy. Am some stuff isn't going better for you by now with getting help an' all. Am still crossing my fingers you that something gives. Your shopping trips sound so so similar to the ones I used to have with my two daughters when they were younger. I've merely blinked before and my eldest has been hanging upside down from the checkout the way she does on her garden swings! Anyway, I wanted to tell you that things eventually got better for us (mixture of practise, improved coping strategies and occasionally tesco online). And I hope they will for you. Hang in there .
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Post by Deleted on Nov 17, 2009 19:12:46 GMT
Riiiiiiiiight. Finally managed to pull things together a bit and make some progress. The obvious thing to do is only bloomin' obvious when it comes to you (eventually - usually in the bath). To get an idea of timescale for my dx I phoned Maudsley and they reckon it will be at least 10 months before I'm seen let alone a dx!! Could cry, but got to be a man . Thats too long if I have to rely on my dx to get the kids sorted. But, my youngest has an appointment with the new (and hopefully improved and preferably permanent) child psych on 9th December (been booked for months as we forgot last appointment). I phoned them up and they have advised that I arrange with the GP for my eldest to come too. They said that, although this new child psych has seen kids with ADHD she is not a specialist but if she needs to she will refer my kids to the ADHD specialist consultant child psych who is due to retire (again apparently) at Christmas. I'm just going to put a few dents in the wall with my head! Its progress Jim but not as we know it!
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Post by .... on Nov 17, 2009 20:14:52 GMT
Eeks. That was supposed to say... Am sorry some stuff isn't going better lol. Good to hear that you have some news on appointments at least. Will cross fingers you have to dent that wall up too badly
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Post by andy12345 on Nov 17, 2009 22:14:23 GMT
giddy, for some reason, I apparently should be seen in six months at maudsley?
I am only speculating now, as I don't have an official date, but when I phoned them anonymously about 2 months ago, they said "15 weeks ish"
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Post by Deleted on Nov 18, 2009 19:07:47 GMT
Hi andy, I phoned them up too and they said I won't be seen for at least 9 months not including the 2 or 3 months it takes to process the application and questionnaires. I've been caught up in the system for over 12 months. I've really got to speed things up somehow for both my own sanity and my familys.
GP has referred my eldest to the child psych at our request. But he wasn't happy about it.
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