I don't feel I am coping well with DS

[Pinkchampagne]

We still don't have a dx despite lots of assessments because he is not ticking neatly into all the boxes, but DS so obviously has problems. He is school action plus at school as they don't know what to do with him & was seen by the Ed psych last week, but I still feel we are getting no further & it is frustrating.
I am finding his behaviour so hard to deal with. I am a single mum so try to cope on my own & am doing a bad job. I don't understand what I am dealing with or how best to deal with it. Had another major tantrum tonight because I turned the telly off when we needed to leave for their swimming, and then he curled in a ball & refused to cooperate at all so we were late. Everything seems a struggle & I really envy those who say they enjoy being a mum as to me it feels a constant struggle...something that stresses me to a level nothing else ever has. I feel I need help with DS as sometimes I really feel I am struggling to cope, but how can I get help when we still (he is 9 now) don't know exactly what we're dealing with.
Am in a teary mess this evening!

I can't see things ever getting better, that's what really gets me. If I thought there was light at the end of the tunnel it wouldn't be so bad, but I can't see any improvements as the years go on - infact it seems to be getting harder.
Sorry for the moan but having a bit of a low spell with it all right now.

Hi there. I know things can look bad but try not to beat your self up about it. You are clearly trying your best and that is all you can ask of yourself. I am a single mum with a CF dd (as well as lots of other problems) I have had a bad time tonight too! shouting at the poor kids.

what did the Ed psych say? Is it purely behavioural? are there learning issues?

would a sticker chart work with a treat at the end of the week? he may be a bit old for that?

what about doing something that your ds enjoys so you can enjoy being together?
(we watch pet rescue together or do hamma beads i dont mind doing these and it calms dd down!)

can you get them to bed early so you can chill with a glass of wine or a pack of biscuits? - mine are listening to Roald Dahl on CD so happy to go up early!

I am sure that people will be along later with some really good advice. I didn't want your message to go unanswered.

have you thought about statement for school you can apply yourself and seems action plus not enough

And its tough job being parent let alone single one

Thank you. Sorry, I didn't go into things much in my OP. There are all kinds of problems with DS. He has problems socialising & cannot cope with playing with more than one child (often we are lucky to get that far) at a time, problems with organisation, dressing, using a knife, appears very immature compared to his peers, very lathargic & hard to get motivated to do anything, appears in his own world a lot of the time, much as he is self conscious in some ways, in other ways he appears to have no embarrassment factor (was doing odd slow duck type walk after swimming today because he was cold!), needs to be asked several times to do the most simple of jobs, gets obsessed with things, can be hard to reason with etc. I could list more!

I look at him sometimes & wonder if he will ever cope alone as an adult, get a job etc (he is falling behind at school because they cannot get him motivated), but because he isn't passing certain tests they are still not completely sure whether he has ASD. There is something very wrong though & I am finding it so hard coping when I don't know what I am dealing with. I really feel I need some kind of help sometimes.

School are looking into getting him a statement as he only has a couple of years before he reaches secondary age.

i learnt from other Mn better to apply yourself as you can appeal school cant.have you seen devlopment paed at all.im still new to this but the Mn on here are fountain of knowledge

Where do you start? I think he does need extra help for sure.

We haven't seen developmental pead, just regular one, child psychologist, speech therapist (once), OT (once) & he was seen last week by ed psych, but on a one to one.

Sorry to hear you are feeling this way. I have a 9 yr old with asd and she is such hard work lately so I can completely understand (sorry I see your ds doesn't have a dx).
Have you been to CAMHS at all? They were the only people who unravelled my dd.

hm cant do links but ipsea have a template you can dowload and fill in www.ipsea.org.uk/ is the site.have you got the reports back yet

What is CAMHS?

I think my DS screams ASD, but because he isn't giving a clear picture (passing some tests & not others), they aren't clear of his dx yet. Didn't it take a while for you to get one with your DD, BH?

Worth getting your GP to try the Developmental Paediatrician. They're the specialists in this stuff. CAMSH are the children and adolescent mental health teams. The GP can normally point to you them too.

If it is an ASD, often basic tests by people who aren't specialists can miss things or misinterpret things, which is why you haven't got a final answer as yet. Which things do they say he doesn't match?

Worth trying out behaviour management stuff that works for those of us who are ASD, to see if it works any better for him. Things like a schedule of what will happen that day - in pictures rather than words. Even I prefer it and I'm an adult. And a ten and five minute warning, given in a way we can hear (if we're watching tele or doing something else, we can't hear you as well - you need to get our attention clearly first, then speak). Anything that gives him more time to prepare himself and you less hassle has to be a good thing for the moment? My apologies if you're already doing this...

PS how does he like swimming? I can't cope with it - too much noise, too smelly, water sensation really hurts, can't co-ordinate myself well enough to cope with it properly. I put up with it sometimes, but it takes all the energy I have and I absolutely dread it.

He has passed the Sally something or other test & a few others. He did ok with the puzzle tests and because he is very sensitive to peoples feelings, they aren't sure about ASD, even though he ticks loads of other boxes imo.

He was very anti starting the swimming lessons at first but has got better. He tends to walk away from the other children in the group at the start though & is in a very basic group.
My mum used to take DS2, but cannot cope on her own with DS1 too, so I have to go along with her.

He hates it when the fair comes to town as there is a certain ride that freaks him out because of the noise it makes!

He passed the Sally-Anne test, which means he has a theory of other minds. And he has empathy for other people. Two of the main explanations/definitions of autism see lack of theory of other minds and lack of 'natural' empathy, respectively, as crucial diagnostic characteristics. Hence, I guess, the uncertainty about your DS's dx. I don't want to underestimate the sensory issues and all the rest, but having empathy and a theory of other minds sounds like it's going to make his social life easier in the longer run. So, perhaps, good news?

Might be sensory disorder rather than full-on ASD, I guess. Can't tell. Difficult, though.

He didn't do well with the WISC(?) test though and another one. They are going to have a multi agency meeting about him & he is meant to have some intense ASD test soon.

The ASD traits he has are: lack of social skills (always on his own & freaked when I allowed 2 children from his class to stay at DS2's party as he could only deal with the 1), gets obsessed with things & only wants to play games related to whatever that is (another reason for him freaking at the party was that the 2 boys were playing Mario on the DS & he wanted to play Pokemon), hand flaps often against his chest or head, poor concentration, cannot organise himself at all, has full on wailing tantrums at times, appears in his own world a lot, comes out with the oddest phrases which are just off the wall, sensitive to loud noises, poor fine motor skills (only just about producing writing that isn't infant level & still has difficulties with a knife at dinner time), and can have fears over things children his age can normally cope with.

For what it's worth, empathy/sympathy is something that a lot of us do have, even if we're 'not supposed to'. A lot of the time, our 'lack of empathy' is more a question of us not being able to see body language or face expressions or indeed hear tone of voice. And if you can't do that, how do you know if the person is upset? Well, if it's someone who uses words to say how upset they are, you know. And if you've seen a good demonstration and explanation of what to do in those circumstances, we can do it. It's not that we don't care. It's that we can't see it to start with. Most of us care hugely about social justice issues, for example.

Hi Pink, my DS(8) was finally diagnosed formally about 9months ago and is ASD. It seems to be such a long slog to get to it and is very draining on the whole family.

Because it took so long, the school adopted a 'pragmatics' approach and broke it all down into mini-targets for achievement and brought in the necessary outside agencies.

When the dx came, we discovered that he had already gotten in place all the help he might need.

My own DS didn't show empathy to begin with but certainly has bucket-loads of it now, even visibly upset when his little sister cries.

I won't comment on your DS because I have never met him. But I will say that you probably need to make sure that you get some time out away from the whole thing on a regular basis. It's hard not to get eaten up by the whole thing. Believe me I live and breathe ASD + other agencies for weeks and weeks, until I am exhausted from it and then have to take some time out from it so that I can gather some energy ready to go again.

Just wanted to say Hi and Be kind to yourself.

Amber - could you help me by giving me some examples of not 'seeing' body language or facial expressions? I am sorry to sound so naive but would really help me try to understand my little man more, thanks,x

Pink Champagne - just wanted to give you a hug as its my turn to be the teary mess tonight, you aren't alone,xxxx

Hi pc yes it did and we went through hell and back. We knew dd had asd it was screamingly obvious but no one else agreed. Where do you live as the peson that dx dd is one of the best!

Thanks, Barmymummy. Sending a hug back to you - it's tough isn't it? Sorry you are feeling low tonight.

BH - that is exactly how I feel atm & it is so frustrating. We are in Kent by the way.

TallulahToo - glad you are getting help for your DS - the school sound very good. I can relate totally to the moments where you feel eaten up by the whole thing.