Has anyone any advice?

[babycuckoo]

Hi, brief history, DS was born with cleft palate which has been repaired, he has six monthly hearing checks, we had one in November and they found a build up of fluid behind one ear, maybe the other aswell. We went back last week and they said that the fluid was clearing but have referred him to another audiology unit who will give him ear specific tests as theirs were inconclusive. Whether any of this is relevent, im not sure (possibly the hearing).

We had to see the speech therapist today as he is delayed with his speech, he is definately making progress tho and we can understand what hes saying although others cant. During the appointment, the ST started asking loads of question to do with his behaviour. It was impossible for him to be assessed as he was all over the place and just wanted to either open and shut the cupboard doors or play on her computer. I realised exactly where she was going with the behaviour questions (adhd etc) but have come out really upset. She has referred him to a peadiatrition for furher investigation.

We have been worried about DS for some time. Does this behaviour seem famililar to anyone?

He is very loving and affecionate, loves giving and receiving hugs and kisses and loves sitting with either me or his father/sister/brother. He is very playful and loves joining-in games. However, he also throws, kicks, hits regularly, has no patience, gets angry very quickly and throws himself on the floor, hits head against doors, walls etc. Hes very fussy with food, only eating certain things and being unwilling to try anything new. Hes very strong, thowing large toys, his chair or anything to hand at me whenever I say no or stop it. I have given up taking him to playgroups as he becomes fixated with either a toy or something like a door and will spend a long time opening or shutting it and if I try and move hime on, he starts aggression again, wont join in any of the music singing even though he loves music and dancing. This has been going on for a long time and I dont think it is just the terrible twos, hes always been like it as far as we can remember. Taking him to any appointment is hell, he just wants to run around opening drawers, doors etc.

His brother and sister are much older than him (teenagers) and are so patient with him, no one shouts, smacks, kicks so I dont understand where he learns these things from.

Im not sure, and really dont know, maybe its frustration from muffled hearing? i dont really want to research anything on the internet and just wondered if anyone recognises what Im saying.

I was born with palate cleft - so know just how many things can co-habit with the condition, and hearing difficulties are a biggie. I was for ever having hearing tests as a kid and teen. If he does have problems with hearing, then it's understandable that he will try to make noise and simply can't hear anyone saying "stop it" - and obv has no idea that it's not just a fab game.

Are you under a consultant? I stayed on the books with mine til I was 19, so chances are that you could refer back in?

I also have a good bit to do with CLAPA, why not take a snoop round their website and see if anything on there helps?
And fwiw, it really need not ever hold him back. I'm proof :)

do you think they were suggesting asd? There are a few things you said that could be ASD traits but that doesnt conclude thats what would be wrong, as there has to be difficulties in the 3 areas assessed.
Could it be a sensory problem? maybe his not getting his sensory needs met via sounds so
hseeking other sensory stuff out?

Hope you get some answers soon

Thank you MrsShrekTheThird, yes we are under the south thames cleft palate clinic until he is 20, he had the repair last year. They have been fantastic but we are finding that other health professionals dont always make the connection between a cleft and hearing, speech etc. The audiologist was pleased that the fluid was clearing, but as you say hearing difficulties are on going, I wonder if having muffled hearing (for how long?) has had an impact on him and if he gets another clod or sniffle, which he is almost certain to get, will the fluid build again?! Im not sure if the ST was just being zealous or whether we need to realise that his behaviour needs looking at.

Ive tried makaton with him, not interested ,and always make sure he can see me if Im telling him to stop or any instruction really (he can hear the word chocolate from the next room!).

No, we wont let this hold him back, Im really very proud of him as I think hes done amazing so far for his little age, although didnt realise at the start how many appts we would end up having all the time!

I don't think she was necessarily referring to ADHD from what you have said. It looks like she believes there is an underlying cause for his behaviour though.

Try not to get upset. The sooner you have an idea of his difficulties (if any) the sooner you can start to help him cope with them.

I know a little about ASD and ADHD, was PS teacher so have come across both, I can see he has some (few) traits but now wondering if im missing something and there is something I`vw not thought about. Yes, she was definately thinking along those lines, as her questions were indicating that, ie, does he line his toys up (no), does he play with other children (yes hes actually very gentle with them) obviously that could just be my interpretation. Its hard, cos hes my little boy and we thought his behaviour was somewhat extreme but no one has ever voiced it to us, she is the first one, and now my head is all over the place, even questioning my parenting, although the other two children fine.

Firstly, don't let this make you question your parenting - whatever difficulties your ds has are not because of your parenting.

Obviously none of us can or should attempt to give you any sort of diagnosis or even suggest what we think. It could be that ds has some asd traits. It could also be that his behaviour might stem from difficulties in communication because of his hearing/speech problems.

A paediatrician will certainly be more helpful than the speech therapist, so hopefully you won't have to wait too long.

In the meantime would be worth browsing through old threads in the SN section, there's loads and loads of advice about improving communication.

I'm thinking the same as Lisa fwiw - that he doesn't get enough stimulation from 'normal' sound so he's after getting sensory stimulation elsewhere.

SALTS sometimes have a wide knowledge but not necessarily depth unless they've specialised (sorry, this isn't a criticism, they have to know about a whole range of conditions that I've never heard of) and was probably just checking for markers - which as you say, there aren't for ASD. Try not to worry, and maybe ask for more audiology reports if you think that the hearing issues are a concern.
clapa which I rambled about earlier

Thank you all, have been thinking about it all afternoon and I agree with you all about the sensory stimulation. Yes, his behaviour can be on the extreme side but everything else is absolutely normal, its definately a frustration thing. No, I agree about SALTs, to be honest she would have some knowledge of many different conditions but not an expert in them, I think she was genuinly trying to help but obviously I`ve just got myself very upset. Suppose we have had months now of hospital appts, which we thought when DS was born wouldnt happen, cleft palate nurse assured us that it was nothing that couldnt be fixed and I took that as one operation, everything sorted! Not really happened like that, had an appointment every week this month and now more coming up, does drain you. Maybe the specific ear tests might help.

Thank you MSTT, yes Clapa has been invaluable to us, we use to get his bottles there and they had loads of information for us when DS had his repair.

This won't be that helpful but our ds (now diagnosed with adhd and asd) had glue ear between 3 and 8 causing mild hearing loss and there was a lot of uncertainty between professionals as to what was the cause of his behaviours. There is apparently a fair bit of overlap between symptoms for children with these 3 diagnoses. It wasn't until the hearing issues cleared up and the behaviours remained that causes became clearer. So agree follow up on hearing tests to hopefully give a bit more clarity.