Got an appointment with a paediatrician at son's school

[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 sometimes gets overwhelmed in crowds. He seems to be 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?

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

A lot of the behaviours you've describes I have seen in my son who has an autistic spectrum disorder. They don't sound at all like dyspraxia to me. We saw the Community Paed at her surgery, not at school. You have a right as parent / guardian to be present and if you want to speak to the doctor before they see your son you should ask for that. I perosnally hated discussing my son's behaviour in fromt of him as I did not want him to feel I was criticising him. The Paed should take a full development history from starting at birth (or before) up to the present day. Only you have that information to tell the Paed.
Best wishes

Thanks. I will be attending and I have been told that the Paed will see me before ds so that we don't have to discuss things in front of him - a worry for me too!

Can I ask whether school noticed anything in the case of your son? School hasn't and puts any 'odd' behaviour down to individuality which may be true. But ds gets very wound up about changing and food in particular and they don't get to see that bit.

I wondered how common it was for behaviour to be different in and out of school

My son has Asperger's (an ASD). It was the school that alerted me to it. His behaviour was more pronounced at school than at home, where he was in more comfortable surroundings. Also we tended to subconsciously compensate for his idiosyncracies.

In fact it was my son's diagnosis that alerted me to the fact I have it too!!! Which was a bit of a shocker, although I've got more used to it now.

Ask lots of questions, get the paed to clarify anything you don't understand. Ask for a written report (you'll probably get one, but just in case)

It may be worth going in with examples of behaviour you want to discuss, and ask whether it is connected. Make a list so you don't forget, its easy to forget when you are in there!!!

Good luck!

Hi Debs
Yes it was school that noticed my son's odd behaviour at age 6. This was back in the dark ages when Aspergers was hardly known, so the doctors never picked up his condition. It was just put down to him being naughty / uncoperative.

Even these days many kids with ASDs slip though the 'professional's' net as Commuity Paeds are very general purpose medics and its clinical phycologists and psychiatrists that hacve the specialist knowledge about ASDs.

MaryBS is absolutely right - make a list of the behaviours you've noticed and definitely ask for a written report. I'd go furthaer and say that if you disagree with the eventual diagnosis to question it. Too many parents with ASD chidren find they are initially wrongly diagnosed or wait years for a diagnosis while the medics all faff around trying to decide exactly what it is the child has. I wish I had queried my son's misdiagnosis at age 6 rather than waiting until he was 15 to find out the truth.
Best wishes

Thanks this is really helpful. I wasn't aware that the paediatrician might not be best placed to make a diagnosis. I will speak to the paed about every thing you mention and the fact that school seem not to have noticed anything. I think I'm dealing with fall out of him managing to cope with school

My DS's paed was very good, fortunately. When is your appointment?

24th March. It is very strange but writing down a list of all the things that concern me feels like talking about ds behind his back!

The appointment came through the school office but neither my son's teacher (although there is some flux with that position at the moment as his teacher is covering someone else) nor the head have mentioned anything. Previously, I have mentioned some of my son's sensory issues particularly getting changed and food

In the return consent slip, I have offered to talk about the issue. Should I leave it at that or ask to talk to someone? I assume they have some input?

I think it is worth talking to the school before the appointment. To maybe go over the list of points you've noted down. Their input will also be needed. Does your school have a Special Education Needs Co-ordinator (SENCO)? They should be involved.

And its not going behind your son's back, even if it feels like it. Its to get him the help and support he needs.

Thanks Mary. I know you are right. It just feels such an odd thing to do. If he had spots or a stomach ache, you'd take him down to the GP and talk about it all in front of him. You can't do that here.

I will contact the school and see whether anyone is interested in talking to me about it! I get the feeling that, because they don't see any of this or none of it that they've mentioned, they've just left me to it.

DS was screaming as he went into the playground today thought because he could 'smell something' and he couldn't eat his sandwiches yesterday (or rather he chewed them up and spat them out) because he could smell yoghurt. So I think if they haven't already seen some of the problem, they will at some point!

I have sensory issues too, so I know what that feels like, poor lamb!

Thanks. Teacher just said - I haven't been asked to give input but will do if required.

I don't think he knew the appointment was at school and probably thinks I'm a bit mad for asking for a referral if all seems well at school. I'm not getting bogged down with that one, although it does feel slightly uncomfortable to be making a fuss.

The school doesn't see what I see so I'll try not to take it personally!

TBH I would only ask those who you think would recognise and concur with your concerns. the last thing you need at the meet is a techer or SENCO disagreeing with every behaviour you describe to the Paed. Children can act very differently in school to the way they act at home. If they don't see the same behaviours then there is the danger that the Paed will dismiss you as an 'over-concerned parent' -it happens.
Not trying to plant the big Monty Python foot on your confidence - just pointing out some difficulties other mothers I know have faced.
Best wishes

Thanks for this WetAugust.

Interestingly, over the last week or so, DS has been exhibiting some of his major stress issues at school so I think for the first time they may be getting a taste of what I've been saying.

He wouldn't do PE last week and was wearing his lace up boots again. He also wouldn't go out at playtime and today, he refused to go into class until we found him somewhere quiet to sit behind a table/bookcase.

His current teacher used to have him for one day a week and now has him for three and I think he feels much more relaxed with her so I think, strangely, that is helping him be more open about his distress/stress.

Does that make sense? It was upsetting to leave him behind the bookcase but the teacher handled it really well and let a friend sit with him and said there was no pressure to do anything and that he could join the class on the carpet when he felt able.

Hi
In some ways it's good that school are seeing the ame behaviour that you see at home as it will make them more likely to acknowledge there are problems and hopefully start looking for additional support for him.

We were always told that as things don't come naturally to ASD children in the same ways as they do to most children the ASD child is in fact 'acting' their way through the day trying to fit in without truly inderstanding why. They can sometimes hold it in at school / home but vbecome explosive in the other environment when the presure just becomes too great.

I hope you can get the Paed to initiate an ASD assessment as that is what it sounds like. However school are supposed to support behaviours and not diagnoses so whatever gets him through the day in the meantime, school should be addressing.

It's worth documented all these ASD-like behaviours for your meeting.

Best wishes

Thanks for this.

DS has been finding it tough all week. We went into school after 9.30 yesterday as he couldn't get his shoes and socks right. We'd been at it since 8 and we only live two minutes from school.

Again, school were fine about it. Although he had his usual teacher back and he suggested we get DS's shoes out the evening before! If only it were that simple

Anyhow, I've made a big long list and will tell the doctor the depth of these issues we've been managing at home and which are only just starting to surface at school.

Do you know how the social interaction side of things fits with ASD? DS has friends and likes to have them over for playdates. I think he is a little more gauche perhaps than the other boys but he seems happy enough in the company of others. This is the bit I feel would not fit an ASD diagnosis unless I'm missing something!

IME it's not that my DS (age 9 with AS)doesn't like having friends etc or enjoy their company it's just that he is not very good at responding appropriately in social situations - like he is about 4 years younger emotionally. He likes having friends he is just not as skilled as them at the social 'getting along' that the others pick up from each other.

The lack of social skills often seen with ASD I think is not so much about not having friends but having difficulties with maintaining friendships or understanding the basic rules of friendships and therefore being sometimes as you say a bit 'gauche' or just 'getting it wrong' and not understanding why.

My DS is learning all the time about how to make and maintain friendships and sometimes is pretty clunky in his operation of them but he learns them like others learn to read or do sums, by practice and talking about what to do rather than the informal learning by observation that others do as he doesn't read faces or body language all that well.

Does that make sense? I'm not sure if others see it like I do but that's what seems to fit with my DS's dx. Hope it's helpful!

Thanks Wedgie. Yes, that does make sense.

Do you know how these appointments go? Would the paediatrician tell me at this stage if she thought there was an issue of some sort or would she wait and do further investigation before making a diagnosis.

DS' main problem is sensory issues which are just making my life hell at the moment morning and night. Clothes, socks, shoes all result in hysteria,

If we can get this addressed in some way that would be a start.

ask paed for an OT referral for sensory issues.

(really sorry you're having to face up to this btw - i know not so long ago you were so certain there were no issues. it's no fun, but lots of help out there once you are in the system) good luck with paed appt. not sure why they are having it at school btw - ep is usually at school, paed appointments usually external, but obviously a postcode thing.
not convinced by the dyspraxia suggestion either btw...

Thanks madwoman..these things have just got more pronounced as time has gone by. I think the change of school (it's much more relaxed and calmer) has highlighted it strangely. I think he feels more able to be himself! Even Dh now sees there's something not right.

I'm not convinced by dyspraxia either - it's beginning to look to me like AS . But I keep thinking, what if I'm wrong and I think my son has AS and there's nothing wrong with him. That would be good but what sort of mum does it make me?

Paediatrician says they don't have a clinic/office to work from so always see people at school. To be honest, I was a bit taken aback at first but then thought that it would be give me the time to chat in private before she sees DS

debs, it may still be sensory issues that can be worked through with a good OT. i knew a little girl who was very similar (in the end she had to wear her her 10 year old sister's school uniform in yr r because anything that 'touched' drove her crazy - it often took more than an hour to get knickers on her lol - and she was known to go to school without them if she could get away with it...)
three years later and after some decent sensory therapy, she's a much happier and confident child. wait and see what the paed suggests, but i'd definitely be asing for an OT trained in sensory integration in your shoes. that way you can hold off the AS dx for a bit and see where you go. AS isn't the end of the world, but long way to go yet. you just need to get some help in place to let ds cope x

Thanks madwoman that really helps and has made me feel much better - and it gives me something to focus on with paed!

Just to say that I saw a lovely doctor today at school for DS.

Long chat, tests etc. She says he has poor muscle tone and is hypermobile and there are some coordination issues (although he's not necessarily dyspraxic. She says he will tire easily and find it really hard to use a pen

For this and the sensory issues which she could see are a priority she is referring us to the OT and physio dept.

She could see 'Asperger' type traits in DS who made good eye contact but insisted on speaking in the little voice he adopts when shy. She is referring him to speech therapy for this.

She is also referring to another paediatrician for the sensory issues as she wants to rule out epilepsy.

She thought he was quite a complicated chap but lovely - which is my diagnosis too!

I was really pleased that there was no rush to diagnose and stick a label on as I've heard some horror stories. I don't care about labels just reducing distress.

Thank all of you who have posted offering advice and help. It has been much appreciated!!

glad it went well. and glad you have an OT referral

good luck

dd2 has low tone and hypermobility alongside other stuff, and OT very useful on all fronts lol.

now you have nearly as many therapists as us!

Thanks for this. I wanted to ask another quick question.

The doctor went through her recommendations with me and said I'd get these in the report which she would release, with my permission, to the school. However, she said that this would take a while as there is typing backlog.

I'm assuming that the school will not have any feedback from her in the meantime?

Do you think I should summarise what she said and raise it with his teacher pending the production of the report?

I don't want to seem like a fuss pot but I just don't know how these things work!