How do you deal with issues when there is no diagnosis....

[debs40]

I've been reading the posts on people's experiences with waiting for referrals and getting inconsistent or no diagnosis.

I wondered how people deal with issues in these circumstances. For example, how do you deal with school if there are no noted problems there but you are aware that your child is getting stressed out about certain things.

My son has clear sensory issues and there are other things which concern me - over-emotional responses to the slightest things; meltdowns after school; problems with change etc. We've been referred to a paed but during the beginning of the year when ds was completely hysterical about what clothes and shoes he felt able to wear to school, his school noticed nothing.

My GP said that's because I'm doing all the hard work (!) but it does make me feel like a bit of mad woman when I tell the teacher all about his probelms - like I'm 'sharing too much' or over-reacting!

Anyway, I'd be interested to hear your experiences.

I was thinking about this today as my son was off with the snow and we were chatting about stuff. His school has a red/yellow card discipline system and he confided to me tonight that he's really worried about being in class sometimes because he just doesn't udnerstand what you get them for (he's six in a couple of weeks).

He's worried because he didn't finish a picture the other day (or do it at all - I didn't press for details)and his teacher said 'you deserve a red card for that'. He didn't get one obviously (it just sounded like his teacher was a bit stressed out) but it seems to have really confused him and upset him.

He has a high turn over of teachers at the moment as his teacher is deputy head and is covering for the head and I feel sorry for him. He was talking about who gives red cards and who doesn't and how he dreads getting one

If I raise this with the teachers, does it seem like I'm going mad??!

Hi debs40 - you won't sound like a mad woman. (you wouldn't to me, any way)

It must be hell for your DS to have to work out on a daily basis what different teachers personal traits are.

You really need to explain to his teachers what life is like for your DS, and hand over any books you've been reading which seem to sum up his behaviour with the relevent bits high lighted.

I really feel for him x

Hi

Thanks for your responses. Yes, there is a 'team point' system where they get so many team points and they get certificates. He thinks he has just won a bronze certificate..but again seemed a little bit confused. They also have a celebration assembly each week with a learner of the week in each class.

They also have 'golden time' (they can choose what they want to do on a Friday pm) and they will lose a bit of this if they get a red card - he lives in fear of that!

My son transferred schools in October so has arrived in Year 1 when the other kids have got to grips with the system but I think he finds it difficult to know why some people give out yellow/red cards and others don't.

He is someone who needs really consistent systems of warning and explanation. But don't all children? Perhaps I'm reading too much into this??

Hi

Thanks for your responses. Yes, there is a 'team point' system where they get so many team points and they get certificates. He thinks he has just won a bronze certificate..but again seemed a little bit confused. They also have a celebration assembly each week with a learner of the week in each class.

They also have 'golden time' (they can choose what they want to do on a Friday pm) and they will lose a bit of this if they get a red card - he lives in fear of that!

My son transferred schools in October so has arrived in Year 1 when the other kids have got to grips with the system but I think he finds it difficult to know why some people give out yellow/red cards and others don't.

He is someone who needs really consistent systems of warning and explanation. But don't all children? Perhaps I'm reading too much into this??

My sons school has the same system, and I find it hard to follow, so heavens only knows how 5 year olds manage it!!! I'm pretty sure lots of them live in fear of a red card and missing golden time. I've seen some of the "toughest" 6 year olds coming out of school and crying becuase they've been given the dreaded red card.

Do you think your son will manage though school with out a diagnosis?

I ask because my DS1 sounds very similar to yours, and the years he's had good teachers who are clear and consistant he has managed well. The years where his teachers have been temperamental have been, at best, difficult for us all. I'm hoping he can manage at high school with out us ever needing to get a diagnosis - especially as DH is determined there is "nothing wrong with him".

Notthing wrong with DS maybe, just the envirmonment he's in, he clothes he's wearing, the people he's with.

Thanks for this! I notice the difference with DS between even myself and DH dealing with him. He gets very worked up when DH gets home and is suddenly sticter. He does need to be guided as to what's expected.

We are waiting to see a paed so I'll see what they say. The whole thing seems very confusing from the posts I've read!

I feel exactly yhe same my dd is waiting for a dx of either aspergers or occiptial epilepsy she has most of her symptoms at home and if i talk to her head about it hse makes me feel patronised. Had a converation with her today cos my dd stays for packed lunch and she sent a letter saying she only wants the dc to take sandwich, yogurt and fruit-my dd point blank refuses to eat sandwichs (has a food phobia) she said to me well you have just said she wont eat sandwichs in front of her so of course she wont eat them arrrrgh i think i know what she does or desnt eat! Then she v patrionisingly saidwhy dont you cut them into different shapes like mickey mouse or something=does she not think i have tried every trick in the book! Quite frankly she is realy p**ng me off, had a go the other day cos dd has lots of hospital appts. She obviously thinks there is nothing the matter with my dd and this thought will never leave her head! And i was really angry cos they hadnt been telling me when dd has a tantrum at nursery and not noting what had happened, apparently they dont do this as a rule-yes but i have told you the consultant wants to know. They really do make me feel like i am thick. arrrrrrrgh. Rant over x