Hi all,

Hope we're all having good weekends. Anyone down in the deep south has my sympathy, sounds like you guys are having a crazy time with the cold front.

Karen before I forget, I love your signature. Hilarious!

Have had issues with T's speech this week and it's all come to a head today. Sigh. Endless cycles of two steps forward, two steps back.

I meant to ask earlier how many of you had speech delays with your littlies, and how they manifested. How did you deal with it too? We've got a speech therapist who is really well-intentioned, but in my opinion is really not being terribly effective in her approach. Frustrating thing is I have no idea what the approach SHOULD be.

We currently have: babble babble babble....a couple of words that vaguely make sense....babble babble...more mish-mash words...babble...and then a sudden ray of light! A perfectly pronounced word!....aaaand then we lose it and never hear that perfect word again aaaand back to babble babble....

Hi all,

Hope I didn't scare anyone off with my little tanty there . We are better today with T making some gains. We had been working for AGES on getting a hard consonant, and finally won ourselves a C (I feel like I'm on sale of the century somedays), and then poof, it was gone. All the C words, just like that. Blank stares like we were speaking Swahili when we tried to get car or cat or anything

But today we got an attempt, which is better than nothing. So I'm tentatively hopeful.

I know it's micro-worrying on the most eensy level, but I just about bled from the ears trying to get that damn C. Cat used to be dawa and car is yadda and oh my god, just one tiny little C for mama my beloved little moonbeam and I will kneel down and sing a hymn of praise. Etc.

ANYWAY. Bla bla bla.

Hope everyone is well and no-one is snowed in or anything.

Monday!

Feel free to have tantrums and the smallest gains give great satisfaction so keep plugging away and if you can video him at regular intervals and then you can look back and see how far you have come.

We didn't have speech delay as such. Riley was a little slow to talk and when he did, it was nouns such as digger, bus, truck as well as scripted speech (from what he saw on DVDs). He has developed since then but still doesn't 'chat' like our dd does. It is quite pedantic and full of his knowledge and if he needs to express himself, it takes him a bit of effort and time (and if in a hurry, he will whack his sister ).

Tanties allowed, it lucky that all that happens some days! lol

No speech delays here, although one of the boys did have some pronunciation issues, not much different from any other kid. from what i have seen with friends with speech delay kids,it all just spurts out when its ready anyway, in fine form

We do get the 'Im telling you everything I know about xyz 'though, which is tedious. Its fine if I dont know it (its interesting) but when you have heard the same thing before then...
We have a LOT of speech repeated from TV/playmates etc. Makes the kids 'sound' really grown up at times and very 'teenagery' but the reality is its just copying rather than understanding usually.

Thanks guys for the reassurance. Aries, the video idea is a really good one. I hadn't thought of monitoring progress like that. I shouldn't at the idea of Riley whacking his sister, but I've now got a picture in my head of Riley in a hurry taking a minute to bop Jemma as he's passing. Sorry, very inappropriate.

Karen, interesting that both you and Aris have kids who repeated speech from DVDs. They must really absorb what's going on for that to happen. We've found the opposite with T--he gets lost in the stimulus of sound and movement, and doesn't seem to register the actual content as such (I think).

Anyways, Monday is here and we're all sick with colds and stuff, so am going to try and slink off to the couch while T is raising merry hell in the playroom.

Hi Eleanor, Dallas and everyone else who's reading. I hope I'm not dominating this forum with T's issues. Please feel free to drop by and say hi. Hope all the littlies are well.



PS: I forgot to add: I'm trying to get a reading list together (both for myself and to put on the resources board). If anyone can recommend anything good, I'd be grateful. Ta!

Heavens yes, tanties allowed!

I've had an incredibly hard weekend with William losing the plot - yes homeschooling is hard and the time we did 20 weeks on the hop it just about drove us all mental but boy...change the routine for holidays and hell opens wide...and when my 11 and a bit year old who weighs 40odd kg and nearly 145cm tall decides to start randomly strangling and hitting his younger brothers - the youngest is only 98cm tall and 14kg...then, yup, you know it's holidays!

Speech - William was pretty much non verbal at 2. Nicholas was born when William was 2 yrs 7 months and William largely lost his words and reverted to crawling such was his shock in the upheaval.
William had a few words for things that affected or interested him but otherwise communication didn't really bother him. Even these days - when I told him off a few months back for not replying when I was calling him he told me he couldn't see the point in communication, he knew I'd find him eventually.

But he did also do the echolalia - copying scripted and pre learnt dialogue from tv etc. We went through a phase of "Toot toot said Thomas" was Wiliamese for yes. "Toooot said Thomas" was no.

He could recite huge lengths of dialogue from dinosaur videos for a long time and we had to limit that because it'd bore the pants off you!
But basically we were denied SLT input when he was little because his receptive language was good. He'd follow instructions - he was just silent and dangerous because you couldn't be sure where he actually was.

He did have some SLT before he started kindy as he was stammering and we did that privately. But like Karen, his speech was fine by then and even over precise because of his literalness and copied language from tv.
We still have a problem with that at times when he picks up a phrase but doesn't fully understand it - "What? Do you want to make something of it?" he thought simply meant he disagreed - aged 10 that's not a good look!

He's still pretty literal but if not sure he's learnt to check with us - what did we mean, is it just an expression etc. Back 4-5 years and there'd be hell to pay if you said lunch instead of dinner etc.

Books - the Oasis Guide to Asperger's Syndrome (I got it from Amazon) is great. Anything by Tony Attwood - he's The Man when it comes to AS!!

lol. no its not a good look is it. we have exactly the same sort of things from one of the boys, sounds really rude and Im always torn between thinking he knows exactly what he is saying & not. It doesnt help that he is incredibly loud & usually 'sounds' angry. We have a new dicipline system at home & speech is the only thing he gets a prior warning for, simply so he can know that if he says it again, I consider it a 'crime'.

Wow Eleanor, you totally get to carry the tanty stick for a while if you need to. That is a full-on weekend. Doesn't sound like much of a holdiay for you!

Again, so interesting that William learnt words off the screen. I wonder what there is in that....T just doesn't work that way, and it's really intriguing that the rest of your boys do.

I remember you mentioning Tony Atwood from the other thread actually, I'll go check him out at the wibrary right now.

We are all down with really bad colds and I'm on the couch trying to stay conscious. I've got this terrible feeling T is going to start rocking in the corner soon from the neglect. Better go and make some attempt at interacting with the poor crumpet.

Hope everyone's having a good day and school holidays aren't being too painful!

Molly was fairly 'normal' for her first year - hit all her milestones bang on and had babble, mum, dad, ball etc - then about one I realised that it had all gone! Our first concern with her was that she wasn't walking (didn't alone until 21 months - walked with assistance at 18 months). She was non-verbal up to just after her 5th birthday. It was hard, really really hard. She screamed a lot & I cried a lot - it's hard not being able to get what your child means & providing for them! We were told early on, she'd never talk - and they started teaching her the PECS system, which she hated! She was a fairly independant little soul & did a lot for herself - probably because it was easier that trying to get us to understand her, so if she wanted a drink, she'd climb up and get a cup and bring it to me. Smart, eh lol!!
Much later, maybe about 3ish, we were introduced to a very amazing lady who taught her sign language - it was the best thing ever! In hindsight, this is something I wish we'd started years earlier - it fitted with her & us & made life so much easier. This woman also discovered very quickly, that she was reading. When she finally started talking, it was all in sentences, her first sentence was 'poor baby bear' (her dad used to lie in bed with her at night and tell her the story of Mollylocks & the three bears *cute!* and obviously the repitition paid off!). And now? I forget what life was like with no speech & she talks all.day.long LOL!

Sign language, hmm. We went back and forth about SL. I was quite keen on it about a year ago, but DP wasn't. He really wanted to focus on spoken language, and I guess T had enough basic communication at the time for us to think we might be able to forge ahead. But I have to admit I still feel a twinge of regret every now and again that we didn't do it at the time. I think it would have given him a lot of confidence.

Good to know it worked for you Dallas


-----------------------------------------

So today's question:

Flapping.

Do your kid(s) do/still do it? Is it an issue for you? How do you deal with it if it is?

T flaps when he's really excited about something, and TBH it's no biggie for me. I figure some kids clap, some squeal, T flaps. That's the way he expresses himself, let's move on.

But the teachers at his preschool keep mentioning it like it's a sign of smallpox or something, and DP occasionally tells him to stop as well. The teachers I ignore, and DP and I have had a talk about it. Making him self-conscious about something so harmless seems counter-productive to building his confidence and it's only other adults who might notice it--I don't think other kids do (he's not a bad flapper, just does it for a few seconds).

But I do wonder whether there's some deeper darker impulse behind it (none of my reading suggests it, but I have to admit I'm not as well-read as I should be yet).

So how do/did you guys deal with it? And what do you think about it as a behaviour?

205 - I'll get back to you on that one. William flapped and spun for quite a while. Still does it a little and I did have to send him off to the bathroom to have a spin there at the hospital while waiting to be taken to theatre recently.

It's now officially too cold down here in the study so I'm leaving the computer and going upstairs! I've updated my blog and Facebook etc and going to be beside the fire now!

Riley flapped a lot more when he was younger and then it disappeared when I was full into the diet and supplements. I can't remember if it was yeast issues or colours...... He still sometimes flaps but it is in context eg he is a plane with wings or a buzzy bee (or very clever at making it look like 'not flapping' )

I think it is a sensory thing often to calm down and my inclination is that they need something to do but of course, we want it to be socially appropriate. So you may need to slowly teach him another thing to do- Sue Larkey in her workshops (well worth going to) talks about different sensory toys you can use to help them focus their need to flap. You can put these toys in their pockets or close by.

There are a lot of different schools of thought on what to do with flapping but I do think they grow out of it a bit.

A lot of people calm themselves with 'flapping' type things but theirs are more subtle- twirling hair, scratching behind ears, picking at fingernails....

I have one flapper & one non flapper. My flapper only flaps when he is extreamly anxious or distressed (eg making a decision). Ive never mentioned the actual movement to him, I just use it as my signal to get down to his level (physically) & engage fast. Give him a cuddle thats quite tight & stoke his back firmly (this calms him a lot). If possible I get him to verbalise whats really bothering him ( often its not what Id think ), then I decide what to do next. it might mean me limiting his choices, or explaining something he doesnt understand or simply giving me a minute to work out the fastest way to get out of where we are (shop etc).

We've never had flapping..screaming, but no flapping LOL!

It's definitely a sensory thing (T, for example, wouldn't know to clap or shout 'Yay!" or any of those other things kids do to express excitement, so he flaps--to express it? As a release valve? Not sure yet), and that it's probably totally involuntary. I also take the point about it needing to be socially appropriate--I've realised how quick adults are to notice it because it's such a physically...awkward..? sort of movement.

I can see him (hopefully) growing out of it, because I think if we made an effort, it could be replaced by another behaviour (as long as we did it carefully--he's pretty quick to pick up on when we disapprove of things and can get really rebel without a cause about it all).

But I'm still not sure it needs replacing. In the wider scheme of things it's so minor, IMO, and I don't see it as being disruptive, although I guess if other kids pick up on adults' discomfort with it as a behaviour it might have implications. Actually that's probably the strongest argument for addressing it for me. Plus I have this thing where I get my back up if people use it as an identifier for 'special' kids and label T as one just because he shakes his hands.

I dunno. Why did you guys decide to address it? Too disruptive/upsetting for them/you/socially inappropriate?




(PS: Aries, I've been looking up Sue Larkey--her workshops were all earlier in the year (bummer), but she has some books that look interesting. Have you read any? Are they worth buying? The library doesn't stock her. Ta.)

I can speak highly enough of sue larkeys books. she is fantastic, very knowledgeable, down to earth & practical. The ones I want to buy are two workbooks for helping asd kids in the classroom which i got from autism house library & from a teacher at school. I would so snap up any of her books I saw in the future. she is the one writter I feel TRUELY gets the day to day experience of our kids. Its all very well knowing theory but at the end of the day we need to know waht to DO to help our own specific kids.
205 if you think its a sensory thing for your child Id get cracking on a sensory diet asap (things you can do to assist desensitising to the sensory issues). Its all fun easy stuff that anyone could do with their kid for enjoyment.

Hi everyone,
I've just been lurking on here - when I saw a thread about autism i decided to sign up!! LOL
I have a 3 3/4 yo recently diagnosed with moderate autism. He also has "extreme anxiety" and the develpmental delays that go with autism. He is verbal and quite high functioning, which can be a blessing but also not so good because people assume he can understand more than he can - and he saves his worst behaviour for home!
Gideon flaps, usually as a sensory thing I think. he likes to yell out "PIZZA PIZZA PIZZA" while flapping, which is kinda cute. He also grinds his teeth a lot. We started kindy last term, i have been with him full time there (just 2 afternoons a week) and this term I am expected to leave him there *sob* they have some hours for a support worker but no one to do the job yet... I might refuse to leave him until they find a worker.... he's my baby and I'm sure he's just going to cry and scream and be really stressed out if i'm not there we'll sort something out.

Hi everyone

I've read this whole thread (and if you know me in real life, please don't say anything to anyone!) but as we are still trying to get a referral I haven't really posted much about it.

Our current issue is the referral itself. My GP didn't have a clue where to refer to so basically picked a name out of a hat which did turn out to be half correct, it was a therapy place - not diagnostic. Their referral team has forwarded it on to the public system which apparently has a wait list of 2 months but said if I phone up and say that i'm flexible as to which hospital we are seen at then it can be a shorter wait.

So, today I phone up (I was told to wait until today so they have time to receive and process the referral). First it went direct to the paed who said no, phone back reception and ask for paed outpatients. Then the receptionist said no, you need this other centre... let me transfer you. Then that other centre turned out to be an automatic answering service for appointment confirmations and requests for respite care!

So, seeing as I don't cope with phones very well I gave up at that point. DH and I are looking into private paeds but are told we need someone who specialises in spectrum disorders to make the diagnosis. The only name anyone is willing to put out there is really really expensive (yes, I know paeds arent cheap, but this is over $300....).

I know people aren't really meant to name names on here, but is anyone willing to suggest someone in Auckland (preferably north or west) that wont charge the earth and is qualified to do diagnosis?

Thanks

Indirect Poem, we saw a paed privately for Gid's diagnosis. We saw Warwick Smith - I will need to find his contact detals.... he is in Auckland. I think it cost $350, will filled out some forms and things before the appointment and the actual appointment was just over 1 hour long. I think he was brilliant

Yeah, he is the one whose name keeps popping up but we can't really afford him. One woman I spoke to (at GSE I think) wasn't too enamoured with him either, I think she felt that he was too free with his diagnosis's?