language disorder in DS 3.6 yrs any one elses DC in same boat and want to start support group?

[berrymummy]

have been really down about slow progress after all the therapy we do and now seems DS is soooo behind kids his age- feels like hell never catch up at this rate. Am feeling very alone all everyones DC seem to be normal and chatting away whereas mine cant even tell me what he did at nursery..... am not even sure he understands what question means? very sad. Would love to meet other mums with mixed expressive/receptive disordered children with who we can start a support group maybe?

Hiya. My Ds has disordered language too.

What therapy is he getting?

Hi! DS is doing SALT group once a week one2One salt once a week, sensory therapy twice a week and OT twice a week- a bit exhausting driving him all over London with such slow progress :( was thinking of trying the Listening programme od Auditory integration training, am getting really desperate after todays day at nursery with all these chatting kids.
How old is your DS and what do you guys do? really nice to meet someone in the same boat as feeling really alone in all this language stuff- seems to come so easily to most kids...

Blimey. That sounds hard going.

Is it all worth it?

We do a variety of things and have done. DS is now 5 and doing fantastically, but I learned early to cut the crap and not do therapy unless I could see the evidence of it making a difference.

Why is he doing all that therapy though? Is it on the NHS or are youbpayingbprivately
?

What did you find works the best for your DS language disorder? how severe was your DS? Mine talks and has a lot of vocab but seems to not be able to understand a lot of questions, abstract is a nogo area as needs too much language for him to understand and listening to story time at nursery and circle time is hard as theres too much language :-( sounds a bit strange too as he doesnt vary tone from how he learnt the word/phrase too much
I guess we do so much because we've only really started therapy intensely in December and I wanted to see if we could get him improving in leaps and bounds which hasnt happened but perhaps im expecting things too soon? were funding all ourselves which is crippling but Im so worried that he wont learn to talk freely and meaningfully like other children... it seems the closer we move to starting reception (sept 2013 thankfully as dS is september baby) the more I panic hes too far behind and wont catch up at this rate till hes 100!
When did you see youd DS really improve? I know all children are different but its nice to know that things get better like it sounds for your DS! thats wonderful that hes doing well:-)

In terms of is it all worth it Id say "yes " if it will help and no if the current rate of progress is anything to go by.... we had quite a bad experience in september when DS started nursery and they were horrible and kicked him out as they couldn't deal with his language disorder and didnt want to understand what disorder means.... thought he was being naughty that he couldn't sit still and listened to story and didn't believe me when i said he didn't understand it. basically had no idea that receptive language can also be affected. whole process was quite upsetting

So who diagnosed the language disorder?

The therapy we did was ABA-based.

SALT but weve also seen dev. paed who supported diagnosis and a bunch of GOS professor types who didnt see any ASD symptoms apart from language problem... has fine motor issues too but im not too worried about that in a 3.6 yrs boy as i know thats common. I was wondering about ABA but weve been advised against it as DS learns quite robotically anyway and were really trying to focus on meaning/ receptive language which I was told want so great with ABA as child can become more robotic... what was your experience with it?

My experience with ABA is that Ds went from 2nd percentile for receptive language to the 34th in 6 months and to the 92nd in 9 months.

Who told you it was robotic or not good for children with receptive language problems? They're obviously talking out of their arse.

my ds is 5.5 now & was diagnosed with ASD & language delay/disorder at 3yo. They've dropped the delay part & it's now language disorder & the ASD is a bit of a red herring.

DS was very severe when he was diagnosed - he started talking at about 15 months but never had more 2 or 3 words he would use at a time. He would lose old words when he learnt new ones - at 2.5 he had a total lifetime vocabulary of 17 words but by the time he was 3 he was pretty much mute & didn't speak at all from October '09 to February '10. At 3yo they assessed his expressive language at around the 12mo stage & receptive was impossible to assess.

He's only had VB (verbal behaviour therapy which is a 'type' of ABA, I supposed we averaged about 15-18 hours a week) we have an NHS SALT who we've seen every month or 6 weeks to help set targets & do assessments but he has never had any direct SALT. He learnt to sign around the time he was diagnosed & picked it up really quickly - 4/5 signs together within 3 months of starting. He started talking again (with VB) in February & made his first two word combinations ever in March - exactly 2 years ago ... wow!

He made incredibly progress in the 6-9 months that followed & is still catching up. Expressively he's doing well, vocabulary is far ahead of average (about 2 years on last assessment - he like to 'collect' words) but he still has grammar & syntax difficulties which do make him sound a bit odd. iirc his most recent CELF expressive scores were between 16th-35th centiles (when he was assessed at 4yo he was between 0.1st-2nd centiles). Receptive is more of an issue for him - he does well functionally (has an amazing memory which helps him guess) but tests below average still, between 9th-16th centiles (he was still untestable at 4yo).

He's not getting any formal language therapy atm - we're focusing on OT stuff (swimming & riding) & learning to read.

crossed with starlight.

Robotic? Weird! Funny in a very sad way too :( . And obviously a load of bollocks.

Ds did VB too - mainly. Also ESDM. It's all ABA though.

OP, if you are self funding and you want measurable outcomes I would seriously research it.

Thanks! I will definitely look into it more as sounds like your DSs had a good experience and theres nothing quite like a mum of a disordered child to tell you what the real deal is. Do you know a good therapist for ABA I could talk to in SW London? or how I would go about finding a good one? and how much ABA did you do a week? Definitely want measurable outcomes Starlight and thanks for your story architeuthis Im so glad both your DS s doing well and ABA helped, am very intrigued why our OT was so negative about it for DS....

Probably doesn't understand it.

tbh I'd be absolutely gobsmacked if an OT knew the first thing about ABA.

hello, I have an 8 year old who had massive language problems at your child's age, but has mostly overcome them. No magic wand, just a good private SALT, variable NHS SALT (some v good (Hanen), some useless) a very lot of visual cues and simplified caveman type language and a big dose of luck, I reckon. We never went down the ABA route but from what I've read and heard about it, I wouldn't agree that it would be pointless or robotic for receptive language.My child I suppose could also have been described by that charmless tone (lots of echolalia, strange accent and intonation) it's been a slow process but he has really improved with intonation/accent over the years, and tbh that has really been low priority anyway. Given the amount of money you must be ploughing into this, agree with Star, about either cutting back on some of the sessions/and or looking further into ABA.

If you google the Mariposa school (California) website, they pretty much have a whole VB manual online. I didn't use it, as only found out about it a few years in, but was v impressed at the structured way of teaching language.

In order to clear up any misunderstandings about ABA, I'd like to point out that as a bog standard s/lt, ABA underpins every aspect of my works with scores of children with language and communication issues, from those who are non verbal due to CP or ASD and those who have trouble with very high level inferential language.

I would not rely on anyone without at least an MSc in ABA or at least 5 years experience as a tutor to be able to give you accurate information about ABA, whether they are a cleaner or a paediatrician so ask them about their own understanding of ABA before you accept ill judged opinion.
OP have messaged you.

Thanks for all you advice- so reassuring to har all these responses on a day that I felt particularly down. Does anyone know how I would go about finding an ABA tutor who is great and how would I know? Have been through my fair share of crap therapists in the last year so am super cautious and there's nothing like a reccomendation. Are any of you in London BTW?