Just dont know whats going on in ds' head or if hes happy or not

[Allonsy]

Seems like ds is so up and down at the moment and is starting to lie to me. Yesterday he told me he had been sent to a time out (an almost daily occurance recently) for acting silly. 5 mins later i asked him what he had been doing to go to timeout he said he had been acting silly jumping up and down and flapping he was excited. I said you went to time out just for that, he said 'no i got a verbal warning'. So i said what did you go to time out for? 'i didnt go at all' so why did you tell me you did? 'i just forgot'??? so i said you got a verbal for jumping and flapping he said 'yes' so a little later i said i will be asking your teacher and i hope your not lying to me he said he wasnt i said it again and he said ' i dont know what i got a verbal for it was maybe that but its forgot out my head' he says things like this ALL the time now. Any further promting and he cries saying he 'cant remember anything'.

Ive also been checking with him recently that hes happy at school and has friends to play with he says yes, the best time of school is breaks because he can run and play. But ds never gets invited to friends houses, never gets invited to parties etc and appears very awkward when i see him at school. This morning everyone was running around playing and ds was walking on tip-toes, arms out wide, wrists bent and a wide eye stare, he would occassionally stop and go up to someone and shout ZOMBIE (this is something he leaned from others last year at school) other kids either walk around him ignoring him or laugh and then walk away but ds tries to keep pursuing them. He was seeing other people running around playing and just forcing his way into the game and running too but was ignored by the others, i dont think he realises they they are not playing with him. when he wasnt doing this he was standing in a deep puddle hands in there and everything!

Senory wise he seems up and down, last week it was POURING with rain he refused to put his hood up and bounced and flapped saying he liked the rain. (he used to be terrified of the rain and the wind and so on...) When we got home (5 mins) i said 'im gonna beat you in the house' he played along 'no im gonna beat you mum' quite happy in the rain i got there first and pretended to get in the house and he SCREAMED ran into house cowering saying rain is cold?!?

now fast forward a week it was raining today barely spitting and ds started panicking needed his hood up cause he dosnt like rain hes changed his mind i seriously cant keep up! feels like everything and anything is a battle hes so unpredictable as it is and now hes lying to me too! people keep telling me 'hes fine hes 'normal', stop analyzing him but it dosnt feel like that to me :(

Do you think he really cant remember or doesnt even know why he was in trouble.

My Dd3 doesnt remember things that people say to her at school.

Sensory issues are very complex and can change from day to day often depending on stress levels.

How old is he allonsy and does he have a diagnosis?

Hes 6 and a half, no diagnosis was told sensory issues by an OT at age 5 purely because he was tip toe walking and bouncing on the spot. School said he talks to much, fidgets alot and acts silly but i dont seem to have any concerns other than that, for me hes like having an unpredicatble wind up toy. Ive read up on everything and anything and i cant seem to make anything 'fit'.

Im really not sure if he remembers or not, i often think how can he not remember, if he remember he got in trouble then surely he knows why? he is always saying he cant remember things, frequently hits himself in the head and says 'stupid brain forgets' but im not sure why or if its a distraction/attention thing.

The thing is allonsy it might not be a not remembering thing, it might be a not understanding thing.

If a teacher is standing over him saying "You are in trouble now, I have had enough of the way you behave, you need to be a good boy"[or something similar]

What does it actually tell him about what he has done wrong?

He may actually have no idea why he is in trouble.

My Dd has trouble processing language, so she only seems to hear bits of what is said to her. If there is background noise some people [myself included] have difficulty picking out who is saying what and what is important.

I think you should go to your GP and ask for a referral to a developmental paediatrician. Make some notes about all the things that are worrying you so that when the GP asks why you ant the referral your mind wont go blank.

After he has been referred keep a diary of all quirks/difficulties that he has and how you deal with them.

Good luck and keep coming on here

I have to go out now but will pop back later

I agree with needalife, think it sounds like there is something more going on here, and agree would be worth going to GP.

My ds (has a diagnosis of ASD but in many ways is not what people might think as 'typical' autistic at all) finds it really hard to remember things too, and has recently started making things up - I think this is an attempt to cover the fact he can't really remember. I really try not to 'punish' him for this (I don't mean to imply you are, of course!), as I know he is a bit confused and certainly isn't doing it deliberately in the way a NT (neurotypical) child would.

If there are some underlying issues (sensory/processing etc) that would probably also affect his ability to join in with the other children, as it may be that he doesn't fully 'get' what they're doing. My ds would also do the copying thing - his latest thing was being a vampire for halloween, but he's still doing it and it is the only dressing up he'll do now, and doesn't get that everyone else has moved on.

Have you discussed anything with school? Might be worth talking to his teacher and/or SENCO, as he might benefit from extra support, or at least some understanding from his teacher that this might not just be a case of 'silly behaviour'.

Do keep posting here.

I agree , try writing a diary for a month or so, it was not until I did that and read it back that I realised how not"normal" my sons behaviour was. To me it does sound like there is cause for concern. Either way do a diary and video and request an assessment, children with asd present indifferent way at different stages, his social interaction alone appears to raise concern IMO.

Basically after the first referal to ot at nursery i was told he would likely calm down once in school, school have always made it out to be no problem really, they put him in nurture type class for a couple of terms to help learn to share, take turns etc and he had an IEP as it was sent home at the end of each block, but he was put back into class full time at the end of last year school didnt think it was anything to be concerned about though and a fair few children attended this class. A month ago his teacher mentioned that his talking and fidgeting is not improving and that she was understanding of the sensory needs and tended not to punish him for acting up but other teachers might so we decided i would speak to my GP. I gave the gp a list of my concerns and she said it does sound worth investigating, she would write to school as they have to make the referal i think to CAHMS, and that i would hear in time but its a long haul, So im still waiting. He now has a new teacher who's only there a few weeks and ds seems happy enough with him but hes been getting some sort of punishment for talking or sillyness almost daily since. Its always ridiculous reasons from what ds says, take today ds was pretending to be a shark apparently when talking about the sea basically getting het up and not calming when he should. I feel like the school just dismiss me as a neurotic parent tbh as they dont see him all the time.

To give you an idea, Ive had concerns about ds since he was approx 18 months but everyone told me it was normal and hes outgrown a good deal of things. From the SCREAMING, thrashing tantrums lasting hours if we didnt go down a street he wanted to or went a different way in the car, if we said we were going into a shop then changed our minds, or didnt do the bedtime routine 'right' or said our goodnights in the wrong order, we had many screaming on the floor tantrums in the street because we changed our mind about something. The fact that as soon as he could walk he was into everything and never stopped like he was being possessed or something. Until he was around 4 he would repeat EVERYTHING you said back to you over and over constantly repeating everything. He never seemed intrested in toys other than to break them, he took everything apart, ripped all books up, lined up his cars or watched the wheels or he was banging doors or playing with light switches. He was always innapropriate with others climbs all over visitors dosnt give them a second to breath, even licks them or talks about toilet humour, just generally talks talk talk constantly buts its either questions or nonsense. Baths and hairwashing would cause screaming fits, haircutting the same he would scream that it hurt, nail cutting the same. From a baby until a year or so ago he would scream in the wind or rain it would catch his breath and it terrified him. He would scream in his pram or buggy, never wanted held like he hated me. Its always felt like he was never 'there' with me and couldnt wait to detatch me. As a toddler he never cuddled me, never told me he loves me, never shown any seperation anxiety he just couldnt care he used to go up to strangers in shops he would happily have walked off with them, by age 3 he developed little habits like licking his lips until they bled, rolling his eyes, clearing his throat etc. Hes always been a fussy eater but OBSESSED with food always talking about it always hungry never satisfied, He used to only be happy sitting watching the same film over and over for weeks on end but even that wouldnt keep him still or quiet, repeating lines back, making woop woop noises, fidgeting about, or play fighting with dh (still his favourite activity)

So thats just the half of it could probably write a book but im sure im boring you now lol. Like i said hes outgrown a lot of these behaviours especially recently but hes still obsessed with food, needs to know when things are happening and how long but can cope without knowing. Still occassionally cries if we change plans but its lasts minutes and is mild now. Still talks constantly always acts silly like a toddler. Still cant go out anywhere without him touching things and running off and generally being a nightmare. His little habits come and go and arnt as bad but still crop up, still occasionally wets and soils at night maybe monthly now. Still dont think he particularly cares for me occassionally asks for cuddles if i tell him i love him he either puts his head down or says 'i know'. He still has few genuine intrests but can appear to, Hes easily influenced so if someone says i like 'batman he would say me too!!! but dosnt ifykwim? if he sees someone elses toys he will play with them but at home he rarely plays with toys at all unless its dr who or will watch the same episode every day for months. Ive often thought alot of him sounds like autism but on the other hand alot of the symptoms dont fit as he does approach people etc too much infact! i relaly dont know anymore i cant make him fit anywhere so question if maybe thats because hes 'normal' and i expect too much all i know is hes exhausting.

oh my god so sorry didnt mean to ramble on that long

Gosh allonsy, I think you should take exactly what you have written there to CAMHs when you get your appointment.

Sadly the wheels do turn slowly, especially when it is not clear cut what the issues are.It took 3.5 years for Dd3 to be diagnosed.

I wouldnt dream of trying to diagnose your child but there are red flags for both ASD and ADHD in what you wrote. The 2 conditions can and regularly do co exist and there are a few people on here who have children with both.

As far as him approaching people too much, that does not necessarily rule out Asd, because if the interaction is inappropriate eg, licking them or climbing over them, then that is a sign of social impairment.

If I were you I would ring CAMHs and make sure they have received his referral, ask if you can be considered for a cancellation appointment. Sometimes if you can get there at short notice they will ring you if someone cancels. Cheeky I know but it has worked for me on a few occassions.

Good luck

allonsy I totally agree with ineedalife none of us could, should or would try and 'diagnose' your ds. But there are definitely things that jump out at me from your description, and I would go back to or phone the GP and push again about the referral, and not just to CAMHS but to a paediatrician.

I think in your position I'd also talk to the school again about at least putting him on School Action Plus if he's not already - the teacher sounds quite understanding and supportive so hopefully she can back you on this.

In the meantime do keep reading and posting here, there is so much good advice and strategies to help with specific problems.

Thank you, really appreciate the advice and you reading all that didnt mean to go on so much. ADHD and ASD are what ive always suspected but couldnt put my finger on either. Dh thinks that because alot of the behaviours have gone away/improved it cant be ASD or he would still be like that. For eg he will now play with toys, 90% the of time its his dr who figures though and his role playing isnt great imo, i tend to hear him saying lines from the episodes and making noises. He wont break down when we dont go a certain way down the street anymore just ask incessant questions as to why, how and when instead. He always wants to please and is a real showoff, he copies everyone else and wants to be like them, anything they can do he can do better sort of thing, from what ive read if it was ASD he wouldnt do this? I will speak to school and make sure they have put referral in, i do worry though that like i said above ds will show that he wants to interact (and not stop) and that he wil play with toys that arnt his and appear 'normal' and they will dismiss us because they dont see what i see.

Thats why you need the diary allonsy

It was my diary that made the proffs sit up and take me seriously.

Playing with the same toys all the time and re enacting tv scripts or watching the same progams over and over are things that should go in the diary.

Copying speech is also called echolalia and should go in the diary.

Make a note of any behaviour that seems unusual or quirky, what causes it and how you deal with it.

Many many children can hold it together at school, partly because it is so structured, but there is a price to pay for this and it can lead to poor behaviour at home or withdrawn behaviour.

To add to what ineedalife said, other things you've described which would be worht mentioning, as well as everything else you've said:

inappropriate behaviour with strangers, not getting the rules about what who to talk to, and what to say to them (my ds would happily bore the pants off any stranger who'll listen about how old x is, what number house they live at, how long it takes to get to school/home/the moon)

copying others but not understanding what he's copying

incessant and repetitive questioning (my ds does this also)

touching things

sensory issues

It is hard for others (GPs included sometimes) to see or understand the real difference between a 'normal' child and one with a possible developmental difficulty. All of us here at some point have had the "oh they all do that" comments (I still get this despite ds having been diagnosed two years ago!) and it can be hard to explain just exactly how it is not the same, it is different - which is why the diary is such a good idea. Also, if you can, take videos of his behaviour - that would be irrefutable evidence if you need it.

Im always jotting down little behaviours that worry me, i have a list that i showed the GP and i have a list that i wrote when he was 4, just been having a read and most of the things are still there just alot milder, i did have a list that i done when he was 2 but ive lost it, typical.

Iv tried to video him recently but cant seem to do it without him noticing and he would act up if he knew. I did have videos when he was a toddler but they were all lost when my computer broke down :(

I seem to swing from thinking there must be something really wrong to hes ok in 10 minutes flat, i read people on here talking about nightmare mornings and school routine and ds dosnt have any of those problems, he gets up has breakfast, gets washed and dressed and goes to school no problem so i think maybe it cant be ASD, but then when reading up on ASD the symptoms listed seem to be the typical severe end of the scale.