Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Your totally professional and medical expert thoughts required

37 replies

HugAndRoll · 10/06/2013 10:50

Ds1 who is 5 is causing me some inner turmoil. He has the following "symptoms" of and family/friends seem to think I'm worrying over nothing:

Repeats EVERYTHING. By that I mean he goes on and on and on and on (etc) about things like he's verbalising his day/week/activity. Example, this morning (being Monday) we had Monday's rendition of "you take me to school today (I don't work Mondays) and you pick me up. On Tuesday, Wednesday, Thursday I go to school club. Not on Friday, I go to

OP posts:
HugAndRoll · 10/06/2013 10:53

Ps ds2 is really hyper mobile too and has physio and paediatrician so family and friends think I have munchousens munch munt am being a paraniod mum looking for problems or something even though its medical people/teachers for ds1 who "find" the issues.

OP posts:
HugAndRoll · 10/06/2013 16:31

Bump as this was only partially lighthearted in an attempt not to stress...

OP posts:
HugAndRoll · 10/06/2013 22:10

Bump and a post to report to move to sen where I may get a reply :(

OP posts:
ItsNotUnusualToBe · 10/06/2013 22:13

Sorry. Can't help at all but I loved the 'Gu' diversion in the middle.

Good luck

PacificDogwood · 10/06/2013 22:16

I am no expert (humble GP) but I think you are describing enough to be justified in seeking expert help and assessment.
Which it sounds like you are getting.

What has the EdPysch said?
What about Community Paeds??

hazeyjane · 10/06/2013 22:19

You might be better posting this in sn children.

Hope you get some answers.

BatwingsAndButterflies · 10/06/2013 22:22

I would think AS purely from the description. He may just be going through a phase, he may grow out of it but best to be sure.

Does he have sensory issues?

You are not panicking over nothing.

PacificDogwood · 10/06/2013 22:24

In the SN you'll find many knowledgable people - professional or otherwise Wink.

Nacster · 10/06/2013 22:26

My family totally refused to "see" DS1's issues. He was diagnosed with Sensory Processing Disorder at 2 and High functioning Autism at 4.

People keep asking why I "want" to label him etc. I don't. Kid needs support.

From what you've said, Autistic Spectrum sounds like a possibility.

Regardless of diagnosis, he sounds like he would find a visual timetable helpful. My DS loves his, and he has good communication now at nearly 8 - it still helps.

Amazinggg · 10/06/2013 22:27

Sounds like asd spectrum to me but I know naaathing etc etc. Repost in SN. They know how to endlessly harass the necessary people to get the diagnoses / help you need and will support you on here while you do it.

lucjam · 10/06/2013 22:30

I work in the asd field, it does sound like he has austistic/aspergers tendencies specifically regarding the need for routine, not liking deviating from a plan, the need to know what is next etc. Surprised the SENCO didn't pick up on this? Does he have a visual timetable or anything like that at school?

The mouthing of stuff maybe be an OCD type of thing, he feels the strong urge to mouth things even though he knows he is not supposed to, the compulsion is stronger than the knowledge that he will get bollocked!

I'm not the right person to come up with an all encompassing diagnosis but it does sound like something (not ncessarily something huge) is going on.

Not sure I've been of ny or much help. Good luck and report back would like to know how you get on with ed psych.

HunterWellies · 10/06/2013 22:34

Have some experience with this. At age five, I've seen as many children go on to a diagnosis as I have seen 'grow out' of their little peculiarities.

If I were you I'd feel the same, and be glad that school were on to it already. It can only help. Good luck with the next step :)

amistillsexy · 10/06/2013 22:34

Have you asked any of the professionals what their thoughts are? They may all have assumed that the others have discussed things with you...I've heard of that happening before. I think your first port of call should be one of them, and you should ask them what their thoughts are about the possible diagnosis.

I know what t's like to not know. I was in your position when my DS was around the same age. His 'symptoms' were different, but he was diagnosed with Autistic Spectrum Disorder just before his 6th birthday. That was both a huge relief and a huge blow, in equal measure.

We had lots of professionals involved as well, but we knew that they were looking at an ASD assessment. The Ed Psych got us to fill in a pre-assessment questionnaire at our first meeting, so there was no doubt what they were looking for.

What really upset me was the people around me, and their comments. usually well-meaning, they would try to stop me from talking about his symptoms and behaviours, telling me all children did these things, that it was normal, etc. I knew it wasn't, and it would have been a heck of a sight easier for me to handle the process if people had been willing to let me talk about it, and willing to just listen sympathetically instead of trying to reassure me. I used to think, 'well, if it's normal behaviour, why is it affecting us so much? What's wrong with me/us, that we can't handle a normal child?' I fell out with one person so badly due to her inability to accept what I was saying that I still can't speak to her, three years (of very obvious ASD and high level of need) later.

To be honest, 'it' is obviously 'something', otherwise you wouldn't have all these people involved, and that is what I would say to other people. Children with 'nothing to worry about' don't have professionals crawling all over them. As to 'what' the 'something' might be, that's best left to the professionals involved to discuss with you, which they should do. Ring them in the morning!

sandiy · 10/06/2013 22:38

Has there been a change at home recently a death separation or something that has triggered the need for the extra security associated with the routines.Did you start work change jobs, Can you have a conversation with him regarding what troubles him if he does nt know what's coming next.Some children need tons of reassurance when they start school if it's a new thing especially if you've been the fixed point of reference in their lives.You could try acting out with toys or cars whatever Like this is mummy I'm going to work etc here's you what do you do when I'm at work do you miss mummy how do you feel when you miss mummy really giving a chance for him to explore feelings and needs.This can sometimes take a couple of weeks to be effective though.Of course I might be talking out of my arse in your case.good luck x

lougle · 10/06/2013 22:42

I think you can discount reflex 'he's fine' from well-meaning relatives and friends. I still get that and DD1 is coming to the end of her 3rd year in Special School Grin

HugAndRoll · 10/06/2013 22:49

Thank you all.

I like the ideas of acting out what is happening or the visual timetables.

He hasn't seen the ed psych yet I gave my authority for him to be referred today. His paed mentioned a comprehension delay at his last appointment but that was in march.

We haven't seen the salt yet (he's been on the list since October), his appointment is next month as is his next paed appointment.

sandiy wrt change, in the past 2 years I've been on mat leave, had another baby, he's started school and I've gone back to work but he's always been like this with routines.

He's a really happy child (when things are going as normal).

luc the mouthing is like a compulsion. We tell him off for it all the time and you can see him take whatever it is out, wait a second or two and its back in. Latest things are labels, soft toys and a gater golf ball (so scared that will slip and choke him).

I keep thinking ASD but then when family say there's nothing wrong with him I worry I'm overreacting. All of his referrals have been through school or his paediatrician. His paed was a GP referral though.

OP posts:
HugAndRoll · 10/06/2013 22:51

ami yes, I also feel like I (and I paraphrase as to what I feel not putting words in your mouth) must be a shit parent if I can't handle a normal child if there's nothing wrong. School must be too (although they seem fine with the other 29 children in his class).

OP posts:
KOKOagainandagain · 11/06/2013 09:44

The mouthing may be related to sensory issues - check out www.silentstars.org/images/Sensory_Processing_Disorder_Checklist.pdf

KOKOagainandagain · 11/06/2013 09:51

You could try filling in the CAST questionnaire and giving an example along with the yes/no. Useful to gather your thoughts for forthcoming appointments.

www.anst.uu.se/abduahma/Saxlemxane/Instruments/CAST/CAST.pdf

This one has the 'answers'.

bialystockandbloom · 11/06/2013 11:50

Ed Psych can't diagnose anything, their main role is advising schools what support is necessary (which of course is useful too!), but if both they and SALT think further investigation is needed, that'll help push things along. It might be worth you pushing for a review by a developmental paediatrician in the meantime though (through GP), as it might take ages for the EP/SALT to get round to doing this.

The chewing stuff - sounds sensory seeking to me too. There are some safe chewing things, sorry can't remember the name but hopefully someone else will.

Re routine dependence - if you want to try and break this a bit, there are ways to help increase flexibility without increasing anxiety. Imo anxiety is actually only fuelled by continuing to depend on routine, so if you can find ways of reducing the need to rely on a routine, you'll simultaneously help with reducing anxiety around it.

Try tiny steps to start with, like changing one tiny thing in a 'normal' route, and giving him a massive reward when you do so - the reward being eg a chocolate button or something, with a "well done for going a different way ds, that was brilliant, here's a choc button". Also when he has accepted the change in routine, give him huge praise for it. The whole time, be matter of fact about the deviation in route - so don't go overboard on reassurance, or totally ignore the meltdown, but just say "ok ds we're going a different way this morning" and take his hand and chat about anything else, keeping up a ridiculously breezy running commentary about something else. And then praise/reward when he's gone with you without too much fuss. Over time you can gradually reduce the rewards as he starts to accept change.

HTH and good luck.

HugAndRoll · 11/06/2013 14:46

Thank you bialy I will give that a go. He (thankfully) is already under a paediatrician but hasn't had an appointment since march and his next one is next month.

I hope someone comes along with the safe chewing things as I do worry he's going to choke on the things he chooses.

keepon I will definitely do that as my mind goes blank in appointments and that doesn't help anyone. I'm also starting to keep a diary to note down his behaviours.

OP posts:
HugAndRoll · 11/06/2013 18:24

I am my own worst enemy. Mentioned this on Facebook (the addition of senco and ed psych), when asked by lovely sil said looking at possible ASD (as they can be) as well as other reasons for the symptoms. Mil (who is also lovely but is not great with this) commented with "don't they have anything better to do than to keep watching him?"

I've deleted this and any other statuses mentioning ds1 or 2 issues so I don't cause any further offence and am now dreading going over there tomorrow (she has ds2 on a wed). Dh was asked to ring her yesterday, he didn't. I've now asked him to ring her today, he's doing anything to put it off so yet again it will be down to me.

OP posts:
bialystockandbloom · 11/06/2013 18:53

Just did a quick search and found this site which might be useful for chewing aids.

MumuDeLulu · 11/06/2013 19:47

Not nothing. But go and have a chat to the GP anyway.

And it sounds like MIL's reaction is the near-universal 'nothing wrong with my perfect grandson'.

Which is true, regardless of how many labels do or don't end up applied to his problems.

MumuDeLulu · 11/06/2013 19:48

SIL might be an ally. Mine is really fab Grin Thanks