Just feeling moaney..

[debs40]

I think there is alot of it about at the moment. Perhaps, we're all flagging at the end of a long school year.

Went to DS's assembly this afternoon. They have one every Friday that parents can come to.

DS was ill earlier in the week and off for two days so getting him back to school has been a bit of a strain. He's been really stressy in the morning and the teacher says he's been exceptionally tired. I've let him come home for the last two days at lunch time because of it.

He is so floppy and lolls everywhere (proprioception problems and hypotonia etc). In assembly, he was really flagging and floppy and then leant against someone. A teacher, not his own, beckoned him sternly to the edge of the row and made him sit by her. She obviously thought he was messing about.

He looked horrified. He hates being told off. I thought he was going to cry or run off. I caught his eye and gave him thumbs up but he just shook his head. As he was at the end of the row, I could see him clearly. When they all stood up to sing, he stayed sitting but eventually realised what was going on. He didn't join in though. Just look bewildered. I felt so sorry for him.

We can collect them after assembly and I sat with him on my knee reassuring him that being moved was nothing and that he hadn't been naughty. I then popped back into school for his sweatshirt which hed' forgotten. He'd had a stand-in teacher that afternoon and she said 'what's wrong with him'. I said he was tired. She immediately said 'well he's been fine all afternoon in class, he only looked upset as he left school'.

Groan....I said 'he was told off in assembly for being himself so he's a bit stressed but he's fine, don't worry'.

God don't you get sick of the defensive rubbish. A year on, they still don't really know what to do with him and I still look like I'm making a fuss over nothing. Yes, we have pockets of problems at school, but they still can't get their head around the fact that just because he doesn't lash out, doesn't mean they haven't upset him with changes to routines, tellings off etc and that this will come out when he feels safe.

I'm just feeling super sensitive as we have the ADOS next Thurs and I feel like, after waiting all this time, someone is going to say I've got it all wrong and the school will grin smugly at me. I know this is unlikely but I feel I go out on a limb every day protecting him. School have got better but it's like I always have to justify things.

I met a mum the other day whose son was at the same school for 6 months last year before she left to home ed. She had only good things to say as he'd arrived with a diagnosis and ed psych report and participation so they followed the ed psych guidance. They couldn't get the boy into school full-time so gave up in the end but shcool applied for a statement for him. It made me feel even worse but I know the help came about because of poor attendance which was a probelm for the school

Sorry, rambling now. But feeling crap and worried. A 3 hour ADI to look forward to with a service I've complained about. Will they start blaming us for his problems??

aww poor little chap, horrid that he fet he was in trouble.
sorry no advice, but had to post.(give him a hug from me please)

Debs, i know exactly how you feel, ive been doubted by so many for so long too. As you know i felt relieved when CAMHS told me ds was obviously a very confused and anxious little boy, who needed weekly 1:1 therapy for a year. How terrible is that, when my first reaction was relief that someone else had recognised and acknowledged what i see and not sadness for poor ds.

OT as good as blamed me for ds's problems in her report, so its not impossible. But hopefully most professionals are professional enough to put the needs of a child first. I too complained about CAMHS, but after assessing ds, they saw what i saw and it gave me the confidence back that had been knocked out of me.

You are an intelligent woman Debs, who knows her son better than anyone else in the world and you know what you are talking about. Have faith in yourself, you are right.

You also have reports from other professionals, they cant all be wrong.

Your ds is having to take time off of school and being reprimanded for his difficulties, its terrible Debs, the sooner you apply for a SA and shake them up, the better.

Thanks. It is awful isn't it to have that feeling of being judged and doubted so that your confidence is eroded when, at the end of the day, if it wasn't for the hard work we put in, they would have real problems with our children?

It's like because we do all the crap and offer all the support and make the child's life easier, they can turn around and say 'what problem'?

School really do like professionals to come in and say 'what problem?' too and when they don't, they get a bit peeved. It's very strange. Things have got better but it doesn't take much for them to swing backwards.

I suppose, you fight for these appointments, ADOS/ADI and Ed Psych, for so long, that now they are here it becomes really worrying to think someone is going to make a final decision.

Debs, everything is black or white with school, there is never any grey area. They have this stereo type of what a SN child should be and if your child doesnt match their view, then he doesnt have SN's in their view.

My biggest fear is that ds will become the aggressive, disruptive stereo type they have in mind if they continue not to meet his needs. There is a fine line between frustration and anger.

Debs, if we didnt do all the crap and have an awareness of our ds's needs, im afraid our ds's would just be overlooked.

Unfortunately school and even some professionals seem to work on the assumption that a need isnt a need unless it interferes with performance. There is no room for what that child that has to go through or the effort they put in just to try and hold it together.

A good example 2 x SALT and Bibic wrote in reports that ds has great difficulty understanding and following instructions. School say ds has no difficulty in this area. But then state 'he sometimes disregards instructions'. They just cant see the connection. A similar thing seemed to have happened to your ds in assembly. Keep a diary of incidents, it will help with your SA (you probably do already)

They also dont get that ds can have good/bad days, they want difficulties to be consistent, otherwise they view it as ds choosing when to do it and therefore it is not due to a disability.

I found that the ASD assessment relied heavily on previous reports and the history, rather than how the child 'performed' on that day. So try not to worry about ds (and you) being judged on one particular day and it being the be all and end all.

Claw have you had the ADOS and ADI now then and an official diagnosis? I think the tests are very structured but that the multi-disciplinary panel does look at all reports and that the ADOS/ADI feeds into that too.

"Unfortunately school and even some professionals seem to work on the assumption that a need isnt a need unless it interferes with performance."

That should be quote of the week. That is just so true. It is all they care about.

Ds' teacher told dh that there was no need to implement the OT's recommendations as ds wasn't doing worse academically than some of the other children. Dh pointed out that if ds is in constant pain and risks damaging his body for life, then there is still a problem. To do her justice, she has since changed attitude. But it needed pointing out to her.

And the "oh, but they choose not to do it". The meeting minutes of dd's attendance meeting stated that dd had missed out on maths lessons because she refused to walk upstairs. Why yes, that was the time when she was in a sodding wheelchair!

Debs40, im not sure if they used ADOS or ADI to be total honest with you.

Ds was assessed/tested by SALT in school who identified social communication difficulties, wrote a report and referred on to Senior specialist.

Senior social communication specialist assessed/tested and observed ds in school and identified the same, wrote a report and referred onto ASD assessment service.

ASD assessment team (SALT, Paed) assessed/tested ds in clinic, wrote a report and i was then given a verbal dx.

I then attended ASD assessment without ds and they took history from birth.

Meeting was then arranged to give official dx 12th of this month, this was cancelled due to staff annual leave and is now on the 23rd June.

Whether that amounts to ADOS and ADI, i dont know.

Cory, its ridiculous isnt it!

Focussing on academic progress when a child's difficulties are unrelated to academic's is madness!

Also as Debs says, the fact that a child isnt kicking, screaming and protesting is seen as 'coping'. If a child is 'coping' then they dont need help. It should work on if a difficult has been identified, then the child needs support.

The whole system sucks.

I think different areas do it in different ways but you would know if they were using ADI/ADOS as it is, from what I understand, very structured.

The ADI, for example, takes about 3 hours (!) I am told and consists of 93 open ended questions about development from birth which are recorded on a computer programme. They have an equation for scoring these algorithims.

The ADOS is a play based observation with specific modules which is usually videod.

We have had quite a few 'gateway' appointments to get to this stage - assessments with Paed, SALT, CAMHS, history taking etc - but that has been just to weed out cases as they go. It took us about a year just to be put on the list for ADOS/ADI.

I would check the dx process Claw as they are not always transparent about what they are doing and you don't want to go to a meeting and find out you just get a 'we think it's ASD so now you can go on the official ADOS/ADI waiting list' type response. That can take months!

Sorry, I don't want to worry you as it might not be the same where you are but just in case it might be worth checking.

Cory/Claw, I think it comes down to a misunderstanding of SEN. LA like to provide guidelines such as no statements unless a child is x amount of years behind but these have no basis in law.

The SEN COP criteria are linked to academic attainment and you do have to demonstrate that a child's ability to access the curriculum is limited by their special needs (which means they have SEN) but what schools don't understand is that this doesn't just mean can they read and write.

it's a difference of perception. Schools take a short-term view - are this child's reading/writing abilities commensurate with those of other children of the same age? If yes, what is the problem? Parents prop up their kids in a whole variety of ways to ensure they attend school and schools just take this effort for granted. But if we didn't do it, they would soon be asking for help.

The parents' perspective is - my child has problems x,y and z which mean that they will not be able to make the progress they should or that I cannot even keep them attending school every day without substantial extra help? I am sick of chasing school to provide this so I need a statement even though we have not yet seen 'failure' as such. Let's not get to that stage.

Short-termism v long-termism. Simple as. But we have responsibity for them for their rest of their lives and not just this term or school year. That is why we are so often at odds with schools.

Interestingly, the mum I was talking to whose son left my son's school last year after only 6 months said the application for a statement went in after she wrote to the LA saying I can't get him to school even part-time, what are you going to do? That then became a problem for the school - statement application went in sharpish - bingo!

Yes, I can relate to that last bit, debs. I'm now getting all manner of help from the health system for dd because she has been school refusing, self harming and threatening to cut her wrists. Ds who just lies uncomplaining on the sofa gets bugger all. He is far worse than she is, but she is the one that is getting a hospital referral.

Debs, after meeting where history was taken without ds (that took about 3 hours). I was told that in their opinion ds was definitely ASD and it was just a case of deciding where abouts on the spectrum he was. They would discuss it at their next monthly meeting and then arrange the meeting on 23rd to give official dx.

I did ask what next, after the meeting on the 23rd and was told ds would then be discharged with dx.

Im not sure i like all this being put onto a computer and scored etc, that seems very black and white.

That is the ADI-R test though. It looks like they're taking a more pragmatic approach where you are. I'm not a great fan of using standardised tests to replace clinical judgment either Claw!! It seems a waste of everyone's time but the argument they use is that it is more 'objective'. Looks like you're nearing the end of the line dx wise then - at last!!

It is very weird when you get close to it isn't it?

It is weird Debs, seems ive been battling for something i didnt really want in the first place. All i wanted was to get ds the help and support he needs, not a label! But it would appear you cant have one without the other.

Here the dx is basically being made on Senior Speech Communication Specialist report, the report scream ASD. She has dxed ds really, which is crazy to think she could have assessed ds years ago. Appointments with her are like gold dust and ds had to be assessed by SALT from the same dept first and she then had to refer.

Ive spent years being referred to the 'wrong' experts, its only been recently that ds has started to get the 'right' referrals.

Seems here, you are not taken seriously until child reaches 5 years old.

Yes, I think that is the case in lots of areas because they say they try to see if these problems are 'ironed out' with maturity.

I have to say we never had any problems or cocnerns really about DS as a pre-schooler. But he was our first. When I look back I can see where the issues clearly. But he seemed quiet and studious and mature. School was a major turning point as it was just obvious that he couldn't cope with lots of things his peers could in terms of physical development e.g. getting dressed and carrying things and that he found mixing socially very complex.

His behaviour is still reliant on who he is with. Fortunately, his friends are really sweet and supportive and look after him. At the other school, they just pushed and shoved him around the whole time and he couldn't cope.

The ADOS and ADI here feed in on top of everything else (reports etc) but I do feel it is less a question of being 'thorough' and more a case of hiding behind the wisdom of crowds!

Debs i was exactly the same and ds is my 3rd child (also have a step son) and i grew up with an autistic brother!

Looking back all the signs were there. For me i think the turning point was when he was about 3 and it became obvious that his eating went way beyond fussy and he was not going to grow out of it. Whether he has regressed or whether its just become more apparent as he has got older, i cant quite put my finger on or perhaps a bit of both.

The ADI i can understand, as obviously history is important, but why anyone would need to score history on a computer is beyond me! ADOS seems pointless, unless they are going to do it more than once to achieve an average.

I know, I know!!! I will report back Claw.

I feel really miserable about it all to be honest. I ended up seeing a friend today with DS. Her son used to go to school with DS and she persists in trying to keep the friendship going although DS is not that bothered.

She was asking about everything and was of course saying 'oh DS does that' and 'oh that's what they're all like' but she then said 'you're not going to have him put on medication are you' and I just felt GGGRRRR . I suppose I feel sick of feeling poked, prodded and judged!

The reality is a year and a half ago I went to my GP with a couple of questions. It has escalated beyond expectation and now I feel it's me having to justify why. Does that make sense

Debs You know whilst all this is going on, life is too!? Try not to forget this 'thing' is an accompaniment, not the main course. You can't ignore it of course but you do have to move forward, even with incomplete information and unanswered questions.

I used to love your posts. So sensible, insightful, logical and funny at times too. Those things will get you through it all, but you need to hold onto them and take time out of the stressful worrying to keep them going too. Easier said than done I know.

Sorry, hope I'm not upsetting you. I've always admired your strength, clear head and ability to see the funny side so I hope you still have these things as they will get you through it all.

Well kick me while I'm down why don't you.....

No seriously, I know what you mean but this is a crisis week you know - blardy hell missus how often do you get an ADOS and ADI back to back in your life time. Let me be neurotic for a bit......pahleeze!

The 'friend' I was talking about is a drunken old witch so no probs there.

However, I have just started writing a brief email to the manager of the service about the panel meeting as the members on it hardly know DS - ten mins with paed a year ago and an hour with SALT in Oct.

Am I being neurotic? Should I send it?

And really how very dare you accuse of me being strong, with a clear head?? Where on earth did you get that from?????

Debs seen as we are looking on the bright side, you will meet well meaning, ill informed 'friends' whether you have an autistic ds or not, life is full of them

As FNN says, you are a strong, witty woman and your ds is lucky to have you, dont let them wear you down

I know debs, but it's just an assessment, just a stepping stone, just a 'thing' that will be over and you'll have the next 'thing' so you need to eat chocolate and pace yourself.

Perhaps you don't have a clear head then, but your posts are always very precise and well thought out, particularly when challenging assumptions.

Personally I wouldn't write the email. Reserve it for afterwards if you think they've made a hash of it. God knows you don't want any more stalling.

LOL, I wrote an email to my paed before ds' assessment asking her to specify just exactly what tests they were going to do and who was going to do it etc. so I can talk!

You peeps, you shouldn't try and talk me into being strong with a sense of perspective. Let me wallow a bit in my anxiety..... Tis not fair. Everyone else gets to!!

I know, I know, it is one step in a long ball game etc etc. Just sometimes it's hard knowing whether to make a fuss and look bonkers or let things go and think aaargggghh. If you write after, they think you're only criticising cos you didn't get what you wanted.

As for eating choc, well I think this whole SN business has put a whole half a stone on me.....it's either eat too much or don't eat. Perhaps, I should write a diet book...

Ok, will stop moaning now.....

I like the clear head bit actually!!

Thats what you get for being strong and taking it all on the chin, we come to expect it now!

I wouldnt bother with the email, just make sure they copies of all the info, reports etc you want them to have. Unless they are blind, they will see what you see.

LOL, okay, wallow away. I won't deny that life sounds extremely tough atm for you. I suppose it is just a bit sad that you can be miserable.

Imagine if WetAugust suddenly appeared saying that the system is too big, and she's had enough writing letters and it's all just not fair!? Well she'd be right but none of us would be able to pat her on the back and say 'poor you', we'd be like 'wft? - Get you back on your horse and into battle with you!' Not that sympathy isn't deserved, it just upsets the order of things - lol!

Ta ladies...what would I do without you and you too FNN!

I consider myself duly shaken back to a sense of perspective and I have arranged a babysitter so we can see the Chris Morris film and have a beer tomorrow night.

That's better than a stroppy email any day!

God, I hope Wet NEVER EVER says something like that!!