Got Paed appointment through - would be glad of reassurance!

[debs40]

Hi

I have posted before about my son who is 6. He has some sensory issues - problems with clothes and smells and chewing things for example. He licks and chews his fingers and plays with his tongue all the time. he now has a rash under his mouth because of it. We have terrible trouble with shoes which need to be very snug and trousers, underpants and big BIG problems with socks!

He can't stand crowds, is ok at school but can't seem tell when teachers are really angry or why (he thinks people are 'shouting at him' when they're asking him to do something) and this worries him. He gets very shy and adopts a strange voice to deal with it when talking to people he doesn't know.

He has food issues and the sight or thought of some food e.g. banana can make him gag.

He has alot of meltdowns for his age, particularly at times of change e.g. starting a holiday or going back to school.

Anyway, the GP suggested dyspraxia and we now have a referral date to see a paediatrician in March.

The appointment takes place at school. Is this usual? I can speak to the doctor first and then ds gets brought in to do some tests.

I feel really strange about all this. I know there is something not right but I also feel a little bit like I'm betraying him and talking about him behind his back - does that make sense?

I also worry about what he is going to make of the appointment at school. The doctor said just to tell him that we're going to talk about what worries him with smells and things but then she mentioned we would do some tests with balls etc and he is a sharp little lad. I just think this is going to make him anxious.

Any advice about the content of the appointment or how to handle it would be much appreciated.

I know how wise and kind you guys are so I thought you might be able to help!!

I don't know whether it is usual for the appointment to take place in school. Ours have always been at our local child development centre, but maybe it differs by area?

I know what you mean about feeling strange about the appointment. Most of ours from assessment through to diagnosis were done with DS being present and you have to go through all the child's history, your concerns etc within their hearing.

My DS was dx with Asperger's at 6 (he is 10 now) and was very aware of everything being said. I do wonder sometimes why they do it like this.

In terms of explaining the appointment to your DS, he will probably take it all in his stride-just explain it as simply as you can.

By the way my DS has a lot of the issues you describe-especially with the food and the socks! He does not wear any clothes in the house other than his boxers-hates the feel of them and gets too hot!

Asperger's and dyspraxia are co-morbids (their symptoms overlap and the two conditions often occur together). Two of my older DSs have both.

Thanks Tiggiwinkle. Did school notice things with him or was it you what got the referral?

School have so far not really noticed anything and it does make me feel like I'm some neurotic mum trying to label my child.

It's interesting what you say about clothes - ds is always saying his socks are too hot! They are age 4-5 on the feet of a 6 year old but there are only about three pairs he'll wear!

I get to see the paed first privately which is good.

By privately, I mean on our own rather than in outside the NHS!

No-school did not notice anything and in fact were saying there was no problem until he got his official dx. Teachers are often not good at picking up the subtleties of things like Asperger's and dyspraxia. They have virtually no training about it (I was told it was given something like half a day during their entire training).

You need to go very much by your own instincts and find out as much as you can so you are well informed.

I had my DS referred to the CDC when he was 3-it was still not picked up by the first two paeds he saw there and it was only when it was spotted by the third (excellent) one we saw that things got moving. This coincided with extreme difficulties he was having coping with the transition from reception to year one. Even then school were resistant to the idea that he had an ASD.

Thanks. It sounds very similar. What happened when you got a diagnosis? Did your son need extra help at school?

One of the things which perhaps masks the problems is that he has friends and has fitted into his new school really well - as far as the teacher can see. I know that he still will never go to anyone's house to play without me and really prefers to stay at home. He does have friends and seems to have a good imagination so I wonder whether this would militate against an ASD diagnosis.

He can't even push the pedals on a bike (he goes backwards!) and finds coordinating to swim very, very hard which made the GP think dyspraxia. But he loves to draw and colours very neatly. Maybe it's a gross motor skill issue?

I'd be grateful to hear about your experience on this side of things.

My DS3 has dyspraxia which was dx when he was 8 (he is 20 now) but the Asperger's was not picked up on then (it rarely was in those days). He got a dx of Asperger's just two years ago.

He had extreme difficulty riding a bike-it took ages for him to learn. He also found ball skills very difficult. His organisational skill are poor and he had a lot of difficulty with things like learning how to tell the time.

But his fine motor skills are also poor-handwriting has always been appalling, use of knife and fork difficult, not able to tie laces etc.

DS5 does not have dyspraxia; he also struggles with handwriting but otherwise his fine motor skills seem ok.

Your DS would need an expert assessment by an occupational therapist to determine whether he has dyspraxia. They do very thorough assessments to determine the extent of any difficulties and work out a programme of support.

In terms of friendships, it is quite possible for children with an ASD to have friends-mine have some very good friends but still struggle with aspects of their relationships. DS5 has a very blank facial expression, for instance and never greets anyone without being prompted.

All children with an ASD are different-no two are the same. One of the things the senco used to say about my DS was that he was not like the other ASD children they had in school so he could not be ASD! Rubbish, of course.

Thanks to both of you. I know I'm doing the right (and only) thing really but I suppose it just feels odd.

If your child has a stomach ache or illness, you take them to the doctor and you deal with it together. This is different and has to be so - in trying to get him help, I have to do this less openly.

I suppose it would somehow feel easier if school had said 'oh yes, we've noticed that too'. There were some issues noticed by his previous school. It just feels like you're doing this alone.

Try and do some research first. I knew nothing about Asperger's before DS5 got his dx. But when I read Tony Attwood's book about it I knew immediately that DS5 had it without a doubt.

There are lots of things you just get used to when you have a child like this, without even realising they may be symptomatic of a problem.
It is only when you put it all together that realisation dawns!

Thanks - I have just ordered it!