dunno what to put.......just babbling

[pokhara]

sorry just feeling low at the moment. ds 4 no dx, defo on spectrum, poss adhd, challening behaviour, language delay and the rest...
as he is getting older things becoming more abvious like need to know exactly what we are doing that day, so first thing in the morning asking " what doing day" and if i dont know he goes mad, when i do know and tell him, he asks every ten minutes or so and if i deviate and pop the petrol station without mentioning it in the morning he goes mad. he has been in pre school, starting big school sept, and in the last year noticed that when he is off for the half terms, his attitude and behviour changes seriously, all to do with change i know. At easter it took the two weeks off and a futher 3 weeks after going back for him to come back to normal, normal being different to normal kids (sorry if offending by saying normal but thats how im feeling at the moment, just want a normal kid). Well this week has been horrendous, i have been attacked far worse than any other time and feel like im in a domestic violence relationship. I went the doctors yesterday thought might hav kidney infection, but turns out ribs are all bruised, this probably from being punched, kicked, trying to get ds in car and up off pavement etc.
Just cant handle it, is this gonna get worse as he grows up, and why dont we get any support, because the support workers here are crap gone off sick , no replacement, then when they do come back totally forgotten about, and when they do see you they havent a clue about children with special needs. And without a diagnosis its even harder to get any help, or for people to recognise that things are bad.

Why why why, i havent had an easy life, and looking forward im dreading ds getting older.

I'm sorry you're feeling so low - I can't begin to imagine what it must feel like (2 of my DCs have SN, but no behavioural problems).

What will it take to get the diagnosis? What has to happen? Are the school supportive - is there any more they can do re the DX?

Sorry you are feeling bad. MN is such a good place to be able to say how we are feeling.

In a hurry so not time to write much - but just wondered if you have thought of using some kind of 'visual timetable' for him. I know many get fed up of that being seen as an answer to all problems, it is certainly not, but just trying to think of some emergency help that might be of use now.

My DS doesn't mind so much what it is we are doing, but just needs to know. So sometimes a picture (and or words depending - and my stick drawings are awful but he understands them) list even if it is just 'have breakfast', 'get dressed', 'watch TV', walk to park', 'go to petrol station','read a story' what ever and however simple. it seems to give him some structure and helps (sometimes) him not end up in violent freefall. Sometimes he gets quite in to it and helps by ticking the things off.

Of course it can backfire if we need to change something - but maybe something to try?

It also helps me feel, ever so slightly, that I am doing something helpful.

Hope that helps a bit. Have been at the receiving end of blows and kicks so know how it feels. Sorry not time to write more.

my ds2 whos 3.8 has sn hes non verbal hes had blood tests,and chromosones etc he had a mri scan in march dont get the results till oct so still no dx for me hes still in nappies too ,he goes to a sn school full time sept he also bites and kicks etc and he always has a paddy at bedtimes i dont get to sleep most nights till 1am ,im feeling tierd now and it s only just past 12 ,

ds doesnt mind what we do either as long as e knows, but doesnt like things added during the day, sometimes he is ok and can be bribed ir tricked (awful i know but sometimeswrks). Do you think a visal timetable we can take with us might help, and where would i start, ie getting the pictures, what to use etc.

hassled - we been under paed for 2.5 years, desnt think autism but fuzzy about things (dont like him) he said ds might be on the spectrum but doesnt know where and that prob be diagnosed as adhd in another 2 years. agrees with magnuage delay as salt inolved. but he says just a waiting game to see if autism - asd, but i dont understand, we see paed once a year for 40 mins, i dont even get to say every thing i need, and see registrar once a year too (different one each time) the one we saw last week said social communication difficulties due to languagedelay, but its far more than that and how can she tell after 40 mins of talking just to me. i have asked for a transfer to another paed as not happy with way things r going, ds not having speech theray as theysay too delayed in recetive and attention difficulties, so ds is just being left, no early intervention here at all, bee going on for 3 years now. no autism assessments etc, just sick of it.

i lovesprouts - ds have never splet through too, tried melatonin, didnt work. i asked paed about blood tests for frangile x and anything else, he said no need. I would also like an mri scan, i would pay but dunno were to go and how much

pokhara - others will advise better than me about how to proceed, sounds like a good idea to ask to see someone else - ask for a community paediatrician with experience/interest in this area. It is so hard to have to push and push - we finally got help when i wrote a letter copied to everyone who had been seeing DS summarising all they had said and asking for more to be done. Is DS at school yet? Have they said anything? Our problem was that at first most issues showed at home rather than school.

Regarding the visual timetable, yes def take out with you. Don't worry too much about where to get pics, just draw something yourself, it really doesn't matter how basic the drawing. I do it in one long list straight down the page. If he recognises numbers you could number the list. Or you could take and print photos of places such as the petrol station. Or try Google images. There are special sites with images to download but someone else would have to give a link for them as I don't know.

We have sometimes gone out without a list and then have to stop and make one on a scrap piece of paper - it's fine to improvise. And it comes easier with practise!

Hi Pokhara

What you need to know is that almost all support for child like yours is actualy delivered through the education system.

Seeing a Paed evry so often for a short appt or SS who can be useless will not deliver the day to day support you require.

What you need to do is writeto the Local Authority and ask for an assessment that may lead to your DE being issued with a Statement of SENs. That assessment process would identify all his difficulties and determine what support herequires - that could be extra help at school, 1:1, Speech and Language Therapy etc.

From reading your posts all the focus seems at the momment to be getting the right 'label' for his difficulties. Instead you should be focusing on getting support for his actual behaviour - regardless of what is causing it - the assessment for a Statement would look into that to.

Best wishes

he starts in and inclusion base within ms school sep. 8 kids in class, 2 teachers and salt couple times a week, so hopefully that will help a great lot

Glad to hear that - but that will probably only be for a temporary period as Inclusion units are designed to get him ready to go back into full mainstream as soon as possible.

A Statement would ensure that help was ongoing - without a Statement he'll be put back into mainstream and left to spiral downwards again.

Best wishes

hes had blood tests for frag x and other stuff ,just had mri in march ,going to see about the results in oct ,he may be puy on a short course of melatonin as he does no sleep much at night other than that we have not got a dx at the mo just gdd thats all they said