what do you think will happen after tomorrow?

[llisa32]

Hi all...soooo nervous bout tomorrow...but don't really know why!

 

So my q.naires have gone back to child psychiatrist, and so have the schools hopefully. I've had my sesion with the psch and tomorrow is J's turn. What happens after that??, I'm guessing it's different in all areas...but any clues as to possible next steps would be very appreciated

 

I can't read anymore about signs/symptoms/behaviours etc..but I've still been trying...again dunno why..just double checking my own opinion about 20 times a day! - pls tell me thats normal

 

All advice gratefully received

[Bard]

I can't read anymore about signs/symptoms/behaviours etc..but I've still been trying...again dunno why..just double checking my own opinion about 20 times a day! - pls tell me thats normal

 

All advice gratefully received

 

Yes, it's normal.

As is making lists, crumpling them up and binning them, and being unable to concentrate with your mind pinging all over the place. Remembering snippets of symptoms in the middle of the night and having to get out of bed to check.

And kicking yourself because you suddenly remember something of vital importance that you forgot to mention, tracking down the Ed Psych in Tesco's or the leisure centre and cornering them to tell them the important fact.

All normal!

Go for a walk somewhere you like; woods, shops, anywhere.

Have a mug of something, hot chocolate is my choice.

And calm down before the roller-coaster begins.

[pearl]

<'> Good luck llisa

[llisa32]

Thanks Bard and Pearl ...it's not good for your health all this lark is it - I've spent most of today with either an upset stomach or indigestion

 

Can only improve!

[Clare63]

Lisa,

Good luck for tomorrow, yes everthing you feel is quite normal including the indigestion and stomach ache !

Hold on tight for the ride and don't forget we are all here for you.

 

<'> <'> <'>

 

Clare x x x

[llisa32]

Thanks Clare..to be honest don't know what I would have done without this forum...I need it for my sanity!

 

Just getting all my bits of paper etc ready for tomorrow..copies of last school report, lsu report..J's school diary so they can see his handwriting etc.

 

Can't think of anything else to take apart from J! ...he's in a good mood and asleep at moment!. Dad no.1's taking him to see the Simpsons film tomorrow so he's dead chuffed about that.

 

I'm dropping him at daddy's straight after the appt and he's already chosen his bart t.shirt to wear tomorrow...so I suspect a 2 hour discussion about bart may loom

[MichelleW]

I've got the same feeling - DS2's appointment with specialist paediatrician, HV (and possibly other relevant therapists) is in 3 and a half hours time. I've never had to deal with child Phsych so probably a different approach in my area. I've hardly slept - woke up at 3:30 am, then got up at 5am. I feel sick and really stressed and depressed. I think it's because I know that I won't get a diagnosis for him today (I was told DS1 wasn't autistic at the same age) and I really need something to back up what I am seeing. DP still thinks I'm over-reacting and neurotic - though he doesn't say it directly. He just says that DS2 is like other toddlers and will be fine. That i shouldn't compare him to DS1 (even though he is showing the same development). And I shouldn't compare him to his cousins who are the same age but girls. But what about all the other boys his age at nursery that he is so different to?

[marmalade]

Good Luck ladies for today.

 

MichelleW I think you have to go with your gut instinct on this. You've been there before and they have to recognise that whether you are neurotic or not, you are not doing this for the good of your health.

 

Hope everything goes OK today, keep us up to date with everything? <'> <'>

Edited July 25, 2007 by marmalade

[MichelleW]

Thanks Marmalade. I have been told that this paediatrician (who specialises in autism in under 5's) is really good. I think I'm also getting stressed because I've been fighting 7 months to get him speech therapy, only to be told that special pre-school is closing. To get him into special ASD or SLD school at 3 means he needs a statement - and a diagnosis would also make it slightly less impossible to get a statement!

[llisa32]

Thanks Marmalade, and Good luck Michelle <'>

 

You and I both know we're not bonkers and I guess we just have to stay firm to that belief!

 

Hope yours goes well...mine's not till 1pm

[MichelleW]

Good luck with yours too! I'll give you an update when I get back.

[forbsay]

Good luck to both of you today <'> <'> <'> <'> <'>

 

Michelle - my son was diagnosed when he was 2.5 years old as being asd. If I can help you in any way, please let me know

 

Forbsay

x

[MichelleW]

well, the paediatrician was very nice, and (another) speech therapist was there - third one I've seen. The paediatrician said that they don't like to "label" at this age ( he is 3 in November) but describe his areas of difficulties/needs/symptoms. So she couldn't say (from the evidence given and her assessment) that he was ASD - though that could change in time. However she did say that he had severe speech, language and communication disorder - not just delay - though the delay is 18-24 months. Also Attention disorder - I would guess ADD as he isn't really hyperactive and sleeps through night well. And finally gross motor disorder (AKA dyspraxia) though again she doesn't like to "label" and she then stated he doesn't need a diagnoses to get a statement. At least most of my suspicions have been confirmed and will just have to wait and see if he shows more autistic signs in the future.

 

Hope your one went well Lisa. Sometimes it does feel as though you are constantly going through everything. Even I forgot to mention several things today - but I doubt it would have made any difference. the problem with my two is that they "appear" to have imaginary play! They can generalise what they see day to day, to dolls and dolls house furniture etc. DS1 knows that if you give him a doll and a brush that he has to brush dolls hair. If you give a doll and a bed, then you put doll to bed!

 

I've never had a phsychologist involved on any assessments, so I wouldn't know if they do anything different

Edited July 25, 2007 by MichelleW

[llisa32]

Hi all...Michelle glad your's went well, and you made some progress. It sounds like they have covered your areas of concern for the moment and at least things will get monitored for the future.

 

My visit...went kinda well . J was fine until he saw the doc and then spent at least 40 mins talking to her from under the sofa . Eventually came out and answered some questions kinda..he made no eye contact at all with her and ignored her questions when he felt like it to ask some of his own. So in a roundabout kinda way he was having a good day!. Eventually J went to play in another room and we got to chat and discuss the questionaires, both mine and the ones from the school...and guess what?..the school actually had some scores on the aspergers one!!

 

After reading through all the q'naires, and comments from school, plus the latest school reports and my updates, and observation today she concluded that yes he is def showing aspergers behaviour, but as he is 'managing' at school and it's not causing him too many issues at present she is reluctant to give him a 'label', as she is very aware that the 'label' for some children can cause more issues than good. I pointed out to her that I really don't care what she wants to call it but I would like something that I can go back to school with in September so I can get the support in place that he needs/or may need.

 

So...we have agreed that she is going to pen a letter outlining that J has 'social communication' something! - excuse my brain went dead. And she will put in the letter her opinion on what could be done in school to assist him. Stuff like social stories/peer group sessions/maybe a pupil mentor etc. She also said that the school ed psch should get involved regards his current writing/cognitive issues. We have also agreed that she will keep J's case 'open' so that at xmas time after 3 months back at school we can review the situation again.

 

It's a bit of a weird situation now really...almost like 'we all know J has Aspergers' but we mustn't say it cos of the possible stigma attached. It really really annoys me - although I can understand what the psch is saying. But at least for the moment it looks like the school are finally seeing some of what I see, and therefore will hopefully be responsive to the discussions I'll ask for in sept!

 

For those that don't know...J is at a private independant mainstream school...which was our last resort after he failed to get into first 2 choice state schools, and then we had absolutely awful time at 3rd choice state school. School he's at now is really suited to him regards the environment so we have been lucky there. The class's are small, and the headmaster does actually know every kids name!. So I'm hoping that now they seem to have started to realise J's difficulties, they will be more receptive when we head back into year 3. Particularly as we will have the Child Pschiatrist recomendations to take back with us.

 

So..sorry for very long post!...I conclude that I'm sorta happy with the outcome today...at least his difficulties have been recognised and should anything get harder/more difficult for J we have already got our feet in the door so to speak!

 

Oh...and I'm only a little bit bonkers

[Mumble]

It's a bit of a weird situation now really...almost like 'we all know J has Aspergers' but we mustn't say it cos of the possible stigma attached.

Hi - well I'm glad the appointment went well for you and they are at least keeping the case 'open'. However, I'm really quite angry at this no labelling thing. The longer people go about shying away from labels (I'm not refering to you here btw) the more stigma is attached to 'labelled people'. To break the taboo, we need to accept that labels are helpful. Without knowing what the problem is we can't expect people to respond to it appropriately. AS is a hidden disability. I can expect people to be generally curteous towards me as I would hope they would be to anyone,, but I can't expect them to 'understand' without being given some help to understand. Social Communication whatsits says to me 'here's something you can use if you're interested but it comes with a get out clause' - you could easily apply the 'don't all boys do that argument'. J may be coping well now in the environment he is in, but, and I hope I don't cause upset by saying this, he won't be in that sheltered environment forever. The sooner people can get to understand J's issues the easier it will be to have support already in place before a crisis hits. I'm not saying it will, I'm just saying it's better to be prepared. And if/when J starts to question why he is different, having a proper name to give him will make it so much easier for him to begin to accept himself and to embrace his differences as strengths.

[llisa32]

I don't disagree with you Mumble...I'm equally angry about the reluctance to 'label', and I agree that the more this all comes out in the open and seen as a 'hidden disability' rather than 'something to hide' the better.

 

My instinct is that J will find life more difficult from Sept onwards..and I think then the school will also notice more than they currently have done.

 

I am going to tell the school exactly what she said to me today..I'll also tell my GP...For the moment I guess I have to wait and see what happens next regards J and exactly how much help/support etc we get from the school and ed psch.

[Clare63]

Lisa & Michelle,

Glad to hear you got through your appointments and had some questions answered and perhaps some of your concerns addressed. Just wanted to say when we were given a dx I was told it was up to us as Con's parents to decided whether or not we shared the dx or "label" (for want of a better word) we chose to use the dx and I believe its the best thing we did, we certainly got a lot more help for Connor from school once we could confirm a dx. I agree with Mumble the taboo needs to be broken and also it has helped Connor understand accept his difficulties.

Thinking of you guys at this somewhat unsettled time.

Clare x x x

[BusyLizzie100]

I conclude that I'm sorta happy with the outcome today...at least his difficulties have been recognised and should anything get harder/more difficult for J we have already got our feet in the door so to speak!

 

That's good news. Glad the appointment went well. <'>

 

I agree with both you and Mumble about the labelling thing - it doesn't have to be seen as a label or stigma, but as a signpost to how a person's needs can be met and appropriate support can be put in place.

 

We are frequently told that DS1 copes fine at school; yes, but the word is 'copes'. for him school is a constant drip, drip of anxieties and stresses that explode as he leaves the place where he has to cope all day. For him it is very much a hidden disability (although I'm not very happy with that word - Wendy Lawson, an adult with autism, has coined the phrase 'diffability'). There is nothing more distressing than being told that your child is fine, when you know categorically that that is not the case! My son 'copes' in school and achieves good curriculum levels, but the cost to him is enormous. Those teachers don't see the panic attacks that catch up with him out of school to the extent that he vomits.

 

My advice is to keep at it; as you say, keep everyone informed and be as proactive as you feel able. Yes, to a certain extent you'll have to wait and see what happens, but don't let anyone fob you off. You do know your child best.

 

My other son, DS2, is about to go into Y3 in September. His situation is very different (he has a Statement), and we are trying to move him to a specialised setting out of mainstream. We have been told constantly that 'he is fine', that he is well supported, that he is making progress, SALT wants to discharge. Yet, the LEA's senior ed psych who specialises in ASD assessed him this month and she says he is NOT fine and anyone who says otherwise doesn't know their a*** from their elbow (OK, my words, but a pretty good interpretation of hers!).

 

I won't go into all the details because there are so many of them, but what I'm trying to say is, keep on trusting your instincts and keep going. We could have rolled over with regard to DS2 and said fine, school knows best - turns out they don't. The jury's still out on whether they've got the idea with DS1, but frankly I don't think they have.

 

You've taken an important step today and, although you may not have found all the answers, you've been taken seriously and proved right in many ways. I hope it all comes together so that your son has a good start to Y3 and for the rest of the year. Well done on getting this far!!

 

Lizzie <'>

[llisa32]

Thanks Clare and Lizzie...I am trying to see today as a positive step in at least the right direction. Things might not have ended up being 'worded' as I would have liked, but at least I have got J the recognition for the things he is struggling with at the moment - and shall proceed to battle on !

 

It is a bug bear though the whole label thing...even my mum today...she's been fully on board with me seeking a disgnosis and fully in agreement about the need etc...but she was really relieved when I told her what the psych had said about labeling etc, and how she didn't think a 'label' would be 'beneficial. I guess the point I'm trying to make is that this whole perception thing of aspergers is so widespread that even our own relees who see the issues our kids have still think there is a 'stigma'...in fact that was one of my mums main concerns I think! ''oohh...you shouldn't go telling people J's seeing someone cos you suspect that!'...we've had a few pretty cross words on the subject infact.

 

Same as I will I guess with anyone that suggests having aspergers is something to hide or be ashamed of to my face!

 

Onwards and upwards I guess..I was just relieved that it was agreed my instincts were right after all this time.

[MichelleW]

OK, so I spend nearly 2 hours with specialist paediatrician and a very good speech therapist who did a very in depth assessment. I tell DS2's father the results earlier today, and just had a phone call with him - and he still won't believe it! he doesn't believe the specialist paediatrician can assess a child who is 2 years 8 months. No, DS2 isn't dyspraxic - all kids are clumsy when they run around! No, he hasn't got severe speech and language and communication disorder he is just a bit behind ( nearly 2 years behind just a bit???) And he definitely doesn't have ADHD which is supposedly the same as ADD, but he isn't that either - of course he wont pay attention unless he is playing with his cars like every other child does - lined up in a long row, or in size order, or spinning the wheels. And he will have no trouble what so ever going into mainstream school at 5! Of course not! So why did I even bother taking him to see a specialist paediatrician who obviously doesn't know what she is talking about!

[llisa32]

Michelle.. <'> you have all my sympathy..if you've read any of my previous posts about my son's dad not believing anything is an issue you'll know how much I sympathise..

 

It's a tricky one, and I don't know if you live with your son's dad or if he's an ex..but either way you have a relationship that needs to be maintained. Do you know if he has any particular fears about your son being diagnosed? maybe he's actually really worried and so denial is a way of coping?..

 

I think you need to dig up some reserve energy, and just stay firm to your beliefs. You know you spoke to a specialist..in your own mind you're happy with what was said. Stay calm although I know thats difficult..hopefully your son's dad might listen if you give it a while.

[Clare63]

I think some Dad's find this whole process especially hard and have such expectations for our children that they refuse to accept there is a problem. Our parents (both our own and in laws) can also be the same, something to do I think with how autism has been viewed in the past and the fact they look for somesort of blame, ie "don't think it comes from our side of the family" all of this of course is so unhelpful. Its not until those close to us finally accept and try to understand do things really get any easier, its then you can truly focus on the individual and work towards providing them with their "own individual support".

 

I am still working on my DH and the family and slowly we are getting there.

 

As you say Lisa, give it a while, it does take a lot of time, a lot of talking, soul seeking, research and discovery.

 

<'> <'> <'> <'> <'> <'>

 

Clare x x x

[Flora]

I don't really understand this reluctance to give a name to a list of conditions, unless the list doesn't fit the criteria for anything specific. When Bill was dx I was so upset when the consultant told me of his conclusion and he did offer me the choice of him either listing the difficulties/features, or specifying AS. I chose the labelling because even though I was upset I realised that it would be simpler for explaining his difficulties to others. However, when ben was dx which was only a few weeks later and the same consultant, he literally got a list of difficulties; semantic pragmatic language disorder, development delay, autistic traits etc. It wasn't until a couple of years later that I realised (after accessing his medical records) that the consultant had done this to save me anymore grief. He didn't feel that it would be 'helpful for the family' (his words) to label autism and chose instead to list his difficulties. I was far too inexperienced at the time to see clearly what this meant, I was just relieved that he wasn't autistic... however he IS autistic.... so you can imagine the confusion we lived with until I finally unravelled the puzzle.

 

Maybe in your case it is that your child is too young, or that maybe it's too early to say if he will continue to fit the criteria; but don't let it pass you by ( I'm sure you won't) as a vague diagnosis, in my experience, can be much more problematic than any so called stigma attached to a label.

 

It is very hard to do, but you have to continue to be firm with the consultant; but trying to get that fine line between being seen as a parent 'pushing' for a label and a parent just trying to help their child is very difficult.

 

Flora

[llisa32]

Okay...so yesterday I was braindead on longwords..but...and perhaps it is me being dumb...I did not realise that the term 'social communication disorder' was an autistic spectrum disorder..same as aspergers, PDD etc.

 

Doh! to me!...so now I'm confused...do you think she went for that terminology to avoid the (in her mind) stigma regards aspergers? if I look up social communication disorder I get the following on one search:

 

 

 

 

A Social Communication Disorder (SCD) is any disorder, which affects both social interaction and language and communication.

Children with Social Communication

Disorders will have difficulties in all of the following areas

 

? Learning how to interact with others appropriately and understanding the perspective of other people.

 

 

? Using both non-verbal (body language and

gesture) and verbal communication.

 

? generalising what they have been taught to other situations

 

? Stereotyped and obsessive behaviour.

 

Sometimes, particularly in medical contexts these disorders are referred to as Autistic Spectrum Disorders.

 

They include Autism, Aspergers Syndrome, Pervasive Developmental Delay and Semantic/Pragmatic Disorder of Language.

Some children with particular Syndromes e.g. Fragile X, Tourettes Syndrome may also show autistic behaviours.

 

Young children with Dyspraxia, sensory losses or receptive language disorders may initially present similar social and language difficulties.

 

So....am i right to assume this is all in the wording, and I just carry on my merry way, but knowing now he has an ASD - do I know that now??..She said that she didn't think a label of aspergers would be helpful, and when I said well I want you to call it something so I can get the help I want she said she was gonna put in the letter social communication disorder.

 

So...she is going to be confirming an asd in writing, but not calling it aspergers???

[Mumble]

Hmm, well I've been thinking about this most of the day. Sorry for not replying to your PM - I don't know the answer. If someone was generally interested in what Aspergers meant I might use the triad to help me explain - so part of that would be saying that I have difficulties with social communiation (as well as social imagination and social interaction) but I would need to go on to explain these in more detail. By the things you've discussed, I think you need the 'imagination' and 'interaction' aspects in there to help create a fuller picture - and Asperger's does this in a neat bundle and a bundle that people can have some grasp of and be helped to understand. I think Flora gave an excellent answer based on her experiences - and I think this shows that you need the proper label without people being wishy-washy and trying to protect feelings (as you damn NTs like to do!!) if you are to begin the acceptance period and move forward positively. What you have been given doesn't help. It confirms there's a problem but it doesn't really tell you or anyone else who could help J what the problem really is in layman's terms. I though I was (going) mad before my diagnosis. The dx helped me to understand that no, this wasn't the case, there was a term for how I was feeling/acting and it gave me the resources I needed to move forwards from. If I'd been told I had a social communication whatsitcalled, I wouldn't have been able to go out and find the information I needed to help me to understand myself so that I could then help those who cared to understand me.

 

Could you write a letter to the psych, thank her for her time, explain that you've had some time to think and take in what she had to say, that having done so you think, as she used the term Aspergers, it would be in J's best interests as it would help his school to understand him in a positive light and relate more closely to the literature, if she used ASD/AS in her report than the more medical SCD terminology that some teachers may find difficult to understand (teachers on here don't get at me - I'm just trying to write something to help llisa's case) it would benefit J in the longrun, and although you understand that there may be a social stigma attached to this label, you're a) not planning to put it on a tag round his neck and b ) think it will help him to understand himself as he begins to question why he reacts as he does/finds things difficult, etc.

 

Sorry, I've been about as useful as the now famous choccy teapot, I know, but I'm still cross at this not labelling thing. We're in a situation where knowledge is increasing but with a very biased slant. Until people can be helped to accept that there's nothing inherently wrong in being Aspergers, that it's another perfectly legitimate way of being, moving forward positively is going to be difficult. I'm the first person in my field with a PhD scholarship - this is very, very wrong indeed because many AS individuals would have the ideal qualities for PhD work - but we face unnecessary hurdles because of the situation that has arisen in peoples' consciousnesses because labelling seems to 'come out' in trying situations (as an explanation when things go wrong rather than right) hence creating a fear and unbalanced view in many people of AS/ASD people (AS people either kill random strangers or work out how to split atoms - no where in between - one or the other and something people can't relate to): a totally unnecessary fear but an understandable one none the less emerges. We need to lift this stigma by people feeling that it's ok to say, hey, I'm AS or hey, my son/daughter is AS but as with anything, being one of the first is difficult. ASDs used to be hidden in institutions. They're not now, but they are very cleverly hidden by the gulf in understanding between ASD and NT individuals. As I've said before, NT and ASD people need to work together to understand each other. I think this will come, but it will take some very brave people to begin to bring this movement about.

[Bard]

I think this will come, but it will take some very brave people to begin to bring this movement about.

And you're one of them!

:thumbs:

[Guest Lya of the Nox]

my dd i assume is aspergers, correct me someone if i wrong

but we got a diag of asd

 

does the name make a difference

<'>

[MichelleW]

I was told that ASD (autistic spectrum disorder) covers both Asperger (no speech disorder or delay) and Autism (speech disorder and or delay) amongst other related "syndromes" such as semantic-pagmatic? disorder. Autism itself can be broken down further to high and low functioning. So though J was initially diagnosed as Asperger at 4.5 years, as he had a speech disorder, he was officially rediagnosed as ASD when he was 6.5 years as this covers "everything"!

 

The name can make a lot of difference to the help you may be entitled to from social services etc.

[llisa32]

Nothings ever simple is it <'> Thanks Mumble for your comments...and to all of you really, you've all been a great help. Lya I can see what you're saying in that the terminology used 'might' not matter, but I guess whats making Mumble mad and me is the fact that even psychiatrists and the like are not wanting to use aspergers as a diagnosis - even when the criteria has been met...for fear of the person with the now 'label' being misjudged etc etc.

 

It seems to be a huge minefield..All of you that have been in this 'system' for years you have my utmost respect ...it's no wonder people struggle to get the help they need with the limited resources available from the state etc, when we all have such a mismatch/pot of diagnoses - all under the 'umbrella'!

 

I am obviously still learning a lot at the moment and my priority is to make sure that J's needs are recognised and met, both in and out of school. I won't know for sure until I try to get this all put into practice whether the wording of his needs is going to make a difference or not - but again...Y should the wording be an issue. If it's aspergers its aspergers!...it all seems a bit cloak and dagger..lets hide the full picture behind the (in my case) 'social and communication disorder'.

 

Mumble...I will wait and see what the letter from the psych actually says next week and then take it from there regards asking her to re-word etc. Liked your wording btw so will be poaching that!

 

What I didn't realise yesterday was that the term 'social and communication disorder' is another name for ASD, so hence my confusion...

[MichelleW]

I think that is the problem I have at the moment - he doesn't quite fit the "criteria" exactly for ASD. Paediatricians etc. don't seem to understand the need for "labels" or real, usable dx's. But If I say DH2 has xxx and therefore needs fizzy sessions, or has speech disorder and therefore needs speech therapy, then it is easier to get help than if he doesn't have a diagnosis. I agree with the paediatrician that at this stage he is being offered what help there is available. But I also think that when he goes into school at nearly 5, a real diagnosis will help get the correct support for him, or if necessary, the correct school if mainstream is not the best option. They doctors are under the impression that a diagnosis is not needed for a statement - I don't think they realise just how difficult it is to get a statement now.

[llisa32]

Interesting your last line there Michelle...regards 'you can get a statement without a diagnosis'..

 

Thats exactly what the doc said to me yesterday!...that I didn't 'need' a formal wording of aspergers to get the additional help that J needs in school etc and that school should be willing to create an action plan etc etc etc..

 

Ho hum...I think I better start getting fitter than I am, cos it looks like I'm gonna need all my energy

[Clare63]

We only really got help from school once we actually got a dx, or label or what ever you want to call to it. I also think the dx helped us with our DLA application.

 

Clare x x x

[Alyth_mum]

We only really got help from school once we actually got a dx, or label or what ever you want to call to it. I also think the dx helped us with our DLA application.

 

Clare x x x

 

I also am a believer in an upfront dx : DD was initally dx as 'Oppositional/confrontational Disorder' which no one, included me, knew what that meant.

I would never argue that she isn't oppositional and confrontatiopnal but those are personality traits/symptoms NOT a dx in my view - it took me another 2 years fight to get the Consultant to agree that she i Aspergers and a lot of her behaviour is due to her inability to cope with situations and she is calming down asshe gets older and becomes more aware of the world and her role/interactions in it.

 

Even noe she gets no support at school because she managed academically (top level of all subjects) but if she has no needs/issues why won't they consider letting her go on the trip to Holland this year??

13 months in advance school has already played the 'Health and Safety 'card at the mere idea of her going with her class mates. And Yes she did want to go in theory. Whether she would have changed her mind closer to the date I don't know but she won't be given the chance.

 

Louise

[bikergal]

This is an interesting thread. Dd1 was diagnosed with social/communication disorder with autistic like behaviour at 11 because the pysch was against labelling. Then at 12 she was diagnosed with ASD by a different pysch. Knowing what I know now I would've insisted on a proper label in the beginning....but I was so worn down by the very long battle to get her diagnosed.

[llisa32]

Hi...I'm still waiting for the fliipin letter so I can see whats she's called it in there ..hating this wait!

 

 

Hopefully it will arrive soon and I can plot next plan of action depending on wording and suggestions for help in the letter.

 

Just wishing I hadn't been such an idiot whilst we were there now and argued for her to say it as it as...despite whether she has a thing against 'labels' or not. I naively (and I dunno why cos I've read all of your threads) thought that anything in a letter, despite how it was worded, would sort of pass me onto the next stage..kinda like a bad game of monopoly!

 

Feel like I've landed back in jail now for the moment! as in 2 steps fwd and one back. But at least I have a starting point now which is more than I had 6 months ago.

[Mumble]

Just wishing I hadn't been such an idiot whilst we were there now and argued for her to say it as it as

You're not an idiot - there's only space on this forum for one village idiot and I'm staking my claim to that spot and I won't budge without a fight

 

However it feels, you are further along - you have developed a far greater insight into your son and the workings of his mind. Yes you may have a battle to do to get the wording necessary to get further help and support, but you know what you're dealing with and I'm sure it's a lot to deal with no matter what you were expecting.

[Alyth_mum]

As Mumble says you ARE further along ....at least now you have a name to send the letter to.

 

If you haven't heard anything by Monday it might be worth a telephone call to check whether there is a 'letter in the post' and who else has been sent a copy of the letter.

You may have been caught up in the postal strike.

 

Louise

[MichelleW]

I was told I would get a report in a few weeks, so I'm not expecting anything for at least another week. I was told that DS2 will be followed up again in 6 months regardless of how busy they are, as he is so severe - "and things could change over time". i was given the impression that like DS1 the ASD signs would become more apparent as he gets older and that he might get a diagnosis in time. That is probably why I'm not too worried at the moment, as I'll be seeing the paediatrician 6 monthly (I hope) and that will give me opportunity to raise the issues of dx.

 

If you receive your report and are not happy with the wording, and/or you want to get a specific dx, then just bring it up at the next review. If they haven't stated when he will be reviewed then contact them to arrange one, or ask to discuss it over phone.

 

I know how tough it is - it took me 5 years to get the "correct" dx for DS1.

 

But on a more positive front, I think I'm making a bit of headway with DP. I bought a bunny and DP said that he'd heard pets were good for kids with problems! One small step.....

[MichelleW]

I've only just received a copy of my report. Typed up on the 27th July so it has taken over 3 weeks to be posted! Generally I am reasonably happy with what it says, though phrases like " he is immature in both his fine and gross motor skills, although at this age a label of Dyspraxia would be inappropriate" and although they agree that there are autistic features, "some of this such as his selective hearing could be due to his problem with attention control".

 

But as he is only nearly 3, I'm not too worried at this stage that they haven't given him a formal diagnosis.