worried sick

[shiny1]

hi i lurk alot on here but post rarely but ive just got to get this off my chestas ive noone else to talk to apart from dh and hes a s worried as me.Ive got 5 dcs,4dds and 1 ds.dd2 has a rare chromosomal abnormality,she cant walk,talk,has heart problems,she is totally tube fed and her behaviour is ahocking but to be honest shes not my woory at the minute.Ds is 2.6 and is looking more and more asd.He has about 20 words and understands basic stuff,but his behaviour is just getting worse all the time.This week all he seems to have done is scream and then hell open and shut a door for 10 minutes.He does piont and gesture for what he wants but he is so behind his peers that im crying all the time.His sisters are noticing these things and i just dont know what to say to them.My mum and just say hes a boy,hes lazy hell catch up.This drives me up the wall although i know they mean well.Ive just dropped him off at nursery and he cried but to be honest i need the break for a couple of hours.Sorry for going on and thanks for listening.xxxx

I'm sorry you are going through such a crummy time at the moment. I think you are awaiting various appointments/assessments etc? My DS is 3.11, very delayed speech and understanding, and still awaiting assessment (I suspect HFA will be the ultimate diagnosis). The "behind peers" worry is horrid - I think the only way to stay sane is to measure any progress he makes against himself, not against others- otherwise you just drive yourself mad. It is very early days for your boy, hopefully there is plenty of time for him to improve, I know it's so irritating though when people who should know better tell you stuff like "he'll speak in his own time" - erm yes, that's exactly what I'm worried about!

I don't know if possibly a sympathetic book might help - a lady called Julia Moor has written a very nice book called "Playing, Laughing and learning with Children on the Autistic Spectrum". She is a parent to a child with ASD herself, and it shows in her attitude.

thanks Tc,hugs to you and your DS.

Don't feel guilty about dropping him off at nursery. I did exactly the same with mine at that age because frankley I needed to otherwise I would have gone potty. The behaviour is partly down to just being that age and partly down to communication frustrations. He feels the emotion but doesn't know how to express it.

IT DOES GET BETTER but I have to say the worry and the comparison with the peers thing doesn't but you kind of get used to is but because you have to. If its any consolation the fact that he does have some words and understanding and is pointing, etc, really does bode well for the future.

All the best

Shiny - I know what you mean about how mad it drives you and I only have 2 kids, not 5 like you!!! My DS did that door shutting business at aged 2 and in the end I bought door stoppers, those rubber things you put on doors, so then he didn't get the satisfying house-shattering bang, so eventually he stopped. I too had a girl first, so everyone did the "boys talk later bit to me" but my boy had no words at that age, plus no pointing etc and crucially no real desire to communicate with other people, he just wanted to interract with things and objects. Just sending you a big hug and definitely don't feel guilty about sending him to nursery, getting relatives to help, getting your DDs to help -- anything to keep you sane! Fags and drink helped me too!

hi shiny spoke to you on my thread

couild this just be frustration due to lack of communication?

does he have repetitive behaviour otherwise with other things

as i told you my ds didnt have many words at 2.6 started saying more at 2.8 then at 2.10 which he is now seems to be doing more and more each day

although still very behind his peers he is making recognisable progress evn pre school have noticed now

i think at 2.6 still so young everyone says wait till 3 they have said that all along see gp but wait till 3 and see how much progress made

SALTS assessment got me so worried said his understanding levels and social behaviour was atypical as well as speech but he is gradually improving on all

if you really are concerned dont be afraid to ask for second opinions for SALT and with gp som they can assess him further

i really do feel for you as it is worrying i still am as still way behind but also relieved now i can see improvememnt

just keep doing what your doing with him giving choices giving him opportunities to answer

and it wouldnt hurt to ask SALT for more help or if not seeing SALT arrange for gp to refer you > sorry cant be much help but i'm here to say i know how you feel lots of lovely mn have given me so much help and support i hope it also helps you to feel the same

forgot to say dont forget to do the verbalising everyhting you do as to talk they need to understand the actions to the words

and offer choices and to just put situations for him to need to speak such as the blowing bubbles and then saying more then doing it again and then say you want more

any games give him opportunities to need to talk but dont force him to copy or answer just advise i have been given from SALT and from other mn

Hi I agree with above. My ASD son had zero words at 2.6 and only very limited receptive language so although 20 words is not the average for his age, taking into account that he can point, it may indicate that his communication difficulties are not severe - although obviously very worrying. It is so annoying when people brush off concerns and give false re assurance but at the same time, there are many positives - such as the pointing and the words

Thanks for the reassuring words everyone.DS is asleep now after screaming for an hour after dd used the computer printer,I know i must try and focus on the positive things he does and try not to compare him to his peers.Thanks again everyone.xxxxx

forgot to say ds is recieving salt in group for 1 hour a week,its the last one next week though and to be honest i dont think its helped him so far,the only word he says when there is Bye and thats when we leave,to be honest i think he cant wait to get out of there.

x

its not easy not comparing i ahve many threads from when ds was your ds age asking for help

you have to be so consistant and set him up in situations where an answer is needed or some response

and also you have to be so verbal with everything you do with him such as trousers on one leg in two leg in keep words simple they said to me try to make it 3 words

such as one leg in

top on one arm in etc

it does work but from 2.6 to 2.8 i didnt think we were getting anywhere but continued doing what i was doing and it helped so much more i think they store it in there head untill they are confidant they can do it as one day putting his trouser on and he said one leg two leg

i was so shocked

but be consistant dont allow any other siblings to talk for him make sure he gets to make an effort

but this was the time i worried most and 3 mths on a big improvement

as i say long way off but if he keeps progressing as he is shouldnt be too far in near future he'll get there

if you notice any other signs that worry you apart from just speech delay dont be afraid to seek help

but they do tend to get so frustrated for not being able to communicate

what i also did was draw evry day things on paper that he liked to do and stuck them on door when he got frustrated he was able to go point on the door for what he wanted

then you just repeat what it is oh you want play doh etc

can he follow get your shoes etc can he recognise colours?

my ds will never say hello but will say bye

knows his colours and numbers

thomas the tank laptop was amazing in helping him loearn wordas thats where his big improvement started

Ds has had agood day today,hes tryed to sing twinkle little star and handed me a book and said Here you go,i feel so proud now but no doubt he will be back to his usual ways tommorrow but for now i feel good.xxx

thats excellent shiny its a start once they start you will see an improvement gradually whenever my ds not feeling to well as he has been last few days all effort is out the window its noises and moaning its so frustrating i cant tolerate it so much now

it just worries me he'll stop making progress but when feeling bettewr you can see diffderence i'm really happy to hear that

i found singing with my ds got him to try saying more words wheels on the bus singing alphabet and twinkle twinkle little star were the main ones

big hugs xxx

Hi shiny1 I feel for you at these times i myself hit a was with my ds1 and ds2 today if these threads werent here i would have cracked but that is enough about me, on the good days get out a camera and take some photos also write a vrief log/diary entry so you can reflect on the good days on the tough ones, and there will be alot to come but keep in mind the good oines and they will help you through the bad