Can I just complain please

[Jimjams]

sorry I'm a right moaning minnie at the moment.

right I love ds1, and I don't really mind him speaking in Martian. Generally I understand what he's saying and his face really lights up with a big beam when he understood. So WHY WHY oh WHY does he have to change his entire language every 6 months or so. I have been screamed at over the weekend for not understanding that "byebyemm" is fire engine (used to be baya hum or something), "hahadai" is motorbike (used to be dain), "can" is stairs (used to be an- just been punched for not understanding that one)"gaga" is granny (used to be nanig- same as mummy) "daddy" is trolley (used to be dutton or something) and a whole host of other words. They don't even seem to be getting closer to the "real" word.

I hate these few weeks when I have to relearn his language as I am constantly being screamed at and hit. Grrrr.

Right feeling better now. Just started writing a dictionary for school, going to have to re-write the bloddy thing. At least school has stayed the same ("mmm"

Know what you mean jimjams. My dd has a collection of different words for the same word and most the time I just think I interpret for her. I dont get hit though just whinged at!

ds has started talking and she is copying him but even the words she could say properly like sock she is saying it like ds says it 'gaga' is sock in ds language. I suppose it will all come topgether in the end -maybe

I wanted to reply to you but I never know what to say when I haven't any experience of a child with special needs. I will just say (and I don't want to sound patronising) that it is so obvious how much you love your children, and you have so much to fight against in getting the best for them, that I can only admire you. {Big hugs{}}

Hats off to you jimjams. I guess this is the problem when your ds seems to be in an in between stage of communication. Before talking my ds generally just screamed, grunted and pointed and even then I was told off for interpreting what he wanted (this was before the diagnosis). I guess if he realises that you understand him then he will stick with his own language... anyway sorry not really helping here. Sometimes even now ds comes out with gibberish and I am quite blunt and just say 'Sorry I don't understand you' which sometimes work...but I am sure you want to encourage any speech at all with your ds and this may alienate him. Its a question of balance....

How is he getting on at school?

The trouble is Eulallia- he can't say the words. He can only pronounce vowel sounds and a few consonants. He can't say ff, sss, shh, K, y, w at all. And when he tries to string a bunch of sounds together to make a word, he can't. I do tell him when I don't understand him, but apart from PECS there is nowhere we can go really. He just keeps screaming the word and I keep trying to gues. Today ont he way home from shcool he said Aye aye ayanan which means bye bye granny and grandad- except it didn't this time- I had no idea what it meant. he screamed all the way home, screamed into the house and carried on screaming. Still no idea what it meant

We've employed the private SALT to work on his speech (NHS has refused) so hopefully she'll get some more sounds out of him.

I realise I'm sounding all Pollyanna-ish again, but with the exception of trolley, those do sound like an improvement, don't they? He seems to be getting closer to the number of syllables, and the fire engine and motorbike sound quite close to me (sitting at my computer like a looney saying all the words out loud ). Gaga is definitely a forerunner to Granny, both my children used it. However, I can see what a strain it must be for you jimjams. It's just heartbreaking to think of him trying so hard, bless him. Hope school goes well this week.

I suppose they are getting closer. He is getting very echolaic atm which can be quite funny. The other day he handed me a hoover and I said "thank you darling". He then immediately handed me a hairdryer and said "an-oo-arin". I did laugh. He does that more and more often. "ill get the keys" in gobbledegook when he wanted the car boot open was a particular favourite.

That's so funny, and so sweet. Tell me, do you have to keep hold of everything at the same time, i.e. hairdyer and hoover (shower-rail, whatever)?

probably no help to u here, but my very verbal 3 year old still says gangy instead of grandad. it does seem to me like he is getting closer, 'all' children change their 'language' when learning to speak. and some kids (and even adults) adapt language to suit them. i even call my kids grandads gangy now, and several other words have been change. its very embarressing at times when other people are around and i'm chatting away in what seems like a foreign language to my kids.

btw what are PECS?

Can relate a bit Jimjams. I think my son has serious auditory procesing probs. He can make the individual sounds quite well and is better at consonants than vowels, he just can't put it together into something that makes sense that comes out of his mouth. I can ask him, e.g. "touch g" when we pass a street sign and he can do it but he just can't put these things together. I expect memory also has something to do with it although that has clearly got much better in the last year. If your ds is becoming echolalic that's very good, its meant to be a very good sign although I believe it has an annoying phase We've spent ages trying to work out what something is that he's asking for and raced around the house only to find, once we'd got his PECs book, that it was cheese. He went through a phase of "loving" cheese, i.e. if he saw a lump he'd run off with it and lie on the carpet starting at it, stroking it and admiring it! I had to switch to those little individual packs. I was just waiting for my friend "greedy guy" who used to work with him to come in and help himself to a cheese sandwich
I suppose the hard thing is knowing whether something is just change or progress.

I garee with that Davros- change or progress? He does seem to be progressing in some ways (saying a lot more), but his speech isn't progressing at all, by which I mean his ability to make sounds. And of course not being able to copy makes it hard. It's weird how they can do things one way (like show me t, p, b, g whatever- so he cane hear the difference) but then everything he says sounds the same. I think another problem is that he usesw bye bye in lots of different situations. So he'll use it to say bye bye but also to say finished, or to signal that he's seen something. So when he was saying bye bye ayanan yesterday he's probably seen something from the car, but I'd missed it and had no way of guessing what it was (and I tried!)

It's weird because ds2 speaks complete gobbledegook as well but is really easy to understand- even complex things like, no I don;t want that car I want that car, or I want my Thomas tape on or whatever. And of course the sounds thing is interesting becuase although he speaks gobbledegook he can copy, (his favourite at the moment is one step, two step tickly under there) so it's easy to show him how to say something. And of course having a yes and no helps as well becuase you can say things like "do you want....?" Communicating with him is so so easy, even though he can't speak either. You'll be stunned when your duaghter gets to the language explosion age.

I do wonder whether ds1's main problem is that he can't speak and listen to himself at the same time. He is very mono-channeled. I have a suspicion that could be a key to the problems.

Echolalia's funny isn't it. If he'd been doing it pre-diagnosis at 2 I would have been horrified. Now I'm overjoyed. It is funny as well, when he uses a phrase I've said totally incorrectly.

Love the cheese stuff btw.

Jimjams I know what you mean about the language problem, ds cant speak at all only moans. Was very proud of him this morning as I asked him a question and he said clearly "um" for a yes response (usually it is a silent response for yes) where if it was no he would moan.When I did what I asked (put the tv on)he smiled away.
It is weird as I can tell what he wants by the tone etc of his moans.

Doormat, lovely to hear that your DS gave you his version of "yes". I know what you mean about being able to interpret "moans" (plus groans, grunts, shreiks etc!). I often think people must think I'm mad going round the supermarket (with v large 8 yr old in trolley with feet scraping on ground). They her "ungh" or "argh" and I'm saying "oh no, not now, we'll get some crisps when we go upstairs" etc. They must think I've lost it! When my hands are free I sometimes do wild Makaton, as much to indicate to others, without having to explain, that there's "something funny about us"
Someone asked what PECs is, look here
Jimjams, my son uses "default" noises or signs if he doesn't know the correct one, not quite the same as bye-bye for several, fairly reasonable, functions, but neds careful interpretation too.
Am very tempted to get my son this TEE HEE

Davros I might get one for both of my kids

Davros never mind the kids might get one for myselfThey are great arent they.

That's great doormat. And the smile when you do understand is great isn't it. On Friday I'd been screamed at for about 10 minutes for not understanding that "daddy" menat trolley and when I got it- the big beam and instant peace.

A yes and no is so useful as well. I can really see that with ds2. now how do I get ds1 to do it?

And I'm pretty good at moans. Particularly the "why are the adverts on?" moan

T shirt is good Davros.....

One could say that change in itself is progress. He is obviously desparately trying to communicate and that I guess is the important thing because as he gets older he will find strategies to deal with this. The way I see it is if he has a physical problem then he may need to get past some of the autistic child phase, ie the anger and tantrums before you can work on it together. Yes the echoing is good - ds did this for several months before talking and even does it now occasionally. He also has a lisp and finds constantants difficult, ie says "glubs" (gloves) so it could just be a question of degree.

dd isn't talking but I know what you mean about communicating as she is so differnet, eg shaking her head for "no" which ds never did. She is so helpful too (maybe a female thing - not very pc to say that though) and fetches dh's slippers as soon as he comes in from work

Love the T-shirt Davros.

dd does a range of noises - particularly the "I can't get this apart or lid off" noise - I know I shouldn't be responding to it really.

Jimjam - I know you have a lot on your plate, and have to cope with far more than I can ever imagine, but just wanted to hopefully give some encouragement re the sounds. My ds1 at 4 couldn't say c, g, s, sh, f, ch, j, p, t, z ...! Needless to say most people couldn't understand him at all. He is now 6.5, and can say all these sounds ... I cried in ST on Friday when he suddenly said 'j' for the first time ever - the last major sound for him. He usually still lisps 's', but he can do it if I pester him, but most of the other sounds are there most of the time.

Anyway - hope this is encouraging for you.