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Lovely progress in all areas but still no speech

(20 Posts)
theDudesmummy Wed 27-Mar-13 09:49:09

Hi, I wondered whether anyone else had some thoughts on this. It is getting me rather down at times. As some of you know, DS is nearly 4, he is on a home ABA programme, which is killing us financially and is often very stressful generally, but is clearly bearing wonderful fruit in terms of his behaviour and general functioning. Challenging behavioiur has all but disappeared, he is very interactive, compliance is right up, he is starting to interact with other children....etc etc etc...He is basically a different child from who he was a year ago before this started.

But...and it is obviously a big but....despite a huge focus on this, he still has no speech at all (a couple of copied sounds but never spontaneously, and about three Makaton signs). We celebrate all the other things all the time and tell ourselves how well he is doing and how all the stress and sacrifices are worth it, but always at the back of my mind is well, yes that's great, but, what kind of life will he have if he can never speak? I can't help feeling down about it.

Dinkysmummy Wed 27-Mar-13 11:43:14

I don't know what to say...

I look at dinky and read what you wrote and I consider how lucky I am.
It's great that he is progressing in other areas, but I could never truly understand how hard it is to have those questions, and feel for you and your family.

flowers

messmonster Wed 27-Mar-13 12:48:05

Hi theDudesmummy. My DD is 5 and still pretty much non-verbal and so I can relate very well to your anguish. I don't know your DS's diagnosis so it may be a completely different situation but what has really helped my DD is introducing a communication book. (DD has LDs caused by a chromsome disorder.)

It's a bit like PECS in the sense that it's picture/symbols based but it's really bridged the gap caused by my DD not being able to verbalise what she wants and having a limited signing vocab. She's now much better able to express herself and we've moved from pure requesting to her starting to use it to comment on things. It's obviously not anywhere near the same as talking but it's helping us while we continue to work on that. We booked a free 1 hour session here to discuss the communication book idea.

We also think she's got verbal dyspraxia so we're embarking on a Talk Tools programme to try to turn her babble into recognisable words.

I'm sorry if none of this is appropriate for your DS, just thought it may help you to know you're not alone smile

Really glad to hear the rest of the programme is working well and you're pleased with the progress in other areas.

theDudesmummy Wed 27-Mar-13 13:31:30

Thanks for the lovely replies. We had considered PECS prior to starting ABA but our consultant wanted to go down the signing/vocal imitation route so we did. I guess I just thought that by now he would have more speech than he does. My DH is pretty much against PECS and both he and the consultant are very keen on focusing on vocal communication... I am not so sure! DS seems to have great physical difficulty in actually making quite a lot of sounds (he cannot say M for example). He tries so hard, poor little sausage. But it feels sometimes like he just really does not understand what we are trying to get him to do...

Dev9aug Wed 27-Mar-13 13:54:49

As you know, we are not in a very dissimilar position to yours. i commented on a thread few months ago that my desire for him to speak is not as important as ds1 needs to communicate and we introduced PECS in November last year.
It did have a huge impact as then he was able to tell us what he wanted. I don't know how your son is with signing but ds1 was very poor, so PECS was brilliant.

Oh and our first consultant objected to the use of PECS as well and we didn't like the idea of it either, but I realised after we went on the PECS course that it was due to the misconceptions around PECS. In reality, PECS is essentially ABA willing the child onto speech, just using pictures instead of signs. See Debbie at London Children's clinic, she will be able to set you up with PECS or you could go on the PECS course run by Pyramid yourself. I would strongly recommend it. If you need to chat more, I am back in the second week of April and I will be happy to talk to your husband when we meet.

Dev9aug Wed 27-Mar-13 13:57:16

messmonster we started talk tools as well, but that is for ds1 feeding issues. Now after that quick hijack, as you were. Thedudesmummy if you are interested in sound production, see this women, Risca Soloman, she is on here as pleasant spice. she practices ABA and is trained in talk tools. absolutely amazing women, really knows her stuff.

sickofsocalledexperts Wed 27-Mar-13 14:05:19

Has he learned all the imitations - eg gross, fine motor?

Are they working on imitating mouth shapes/sounds in front of mirror/tutor?

Are they choosing his highest motivators in the world?

My boy's first word was "push" for his beloved swing. But tbh for about a year it was really just "p" and "crisps" was really just "c". Only after months/years of echoic imitation practice did he say the words even remotely clearly. I feel he has verbal dyspraxia, so forming the sounds just is so very hard for him. I too, for that very reason, didn't go down the PECs or signs route, as felt the very fact that forming sounds was so hard for him would mean he'd jump at an alternative, and never put in the hard work on speaking.

I think if your boy has 2 copied sounds, then one day he will have words, but it will be long, painstaking work.

It is a source of total shock and awe to me now when I see how sublimely easily a NF child learns to speak!. Something of a miracle really, when I see a 2 year old just casually using full sentences, apostrophes and all!

Keep pushing! My boy talks now - not well, not conversationally, but he uses words and phrases to get his needs met and interract with others.

theDudesmummy Wed 27-Mar-13 14:21:26

Oh what a lot of helpful replies, thanks! Yes we actually went on the PECS two day course before we started ABA, and paid for our nanny, speech therapist and nursery school teacher to come too. But then we started ABA and the consultant wanted to try the other route. I am going to talk to him about it again at our next workshop.

Sickof he is really good on motor imitations, including chains of gestures etc, and copying lots of things we do, but not when it involves doing anything with his mouth! He is really highly motivated by social approval and praise (he has just taught himself to do a 25 piece jigsaw just so people will applaud him!) And also we use choc buttons etc. But still the sounds are very difficult! He does a few: including "hi" to say hello (only when prompted though!). Some days are much better than others.

theDudesmummy Wed 27-Mar-13 14:22:56

Ps I think the verbal dyspraxia thing may be worth thinking about, thanks

MummytoMog Wed 27-Mar-13 14:28:06

DD has no problem making most sounds (bit of a tongue thrust, but it's improving) so might not be relevant, but although I was TOTALLY against PECS, because DD knew so many words, just didn't use them, it did actually help her learn how to request stuff. She dropped it after about two months of really using it a lot but there was a big jump in how much language she used (transactional mostly) and she has moved onto commenting since then. So if your ABA tutor doesn't disagree, may be worth trying?

zzzzz Wed 27-Mar-13 16:52:13

Different situation here as ds could can talk but is very language disordered. He not only couldn't hear the individual words in a spoken sentence, he didn't understand the strength/point of language beyond, you say this, then I say that.
He is now able to make himself understood. I think EVERY form of communication should be used. A communication rich environment is what you should be aiming for. Mine was making huge strides towards literacy long before he had any more than very very basic language (bzzzz for bee, no nouns, colours). I backed off from it because I had some daft idea that it was making him even more "weird" at nursery. I think if he had been decoding text earlier he would have grasped language faster and missed much of the aching frustration that is such a big part of his life.
I think if I was doing it again I would go with some sort of buttons you press (I know there are tech names for these things) that say really useful things like "I want tellytubbies" or ""please can I have some water". There are probably programable apps on iPad/phone.

theDudesmummy Wed 27-Mar-13 16:59:00

The problem with my DS and the iPad is that he uses it mostly to stim on (just watches the same five or six seconds of something innumerable times)!

ouryve Wed 27-Mar-13 17:01:58

there are zzzz. MyChoicePad is one for iPad which uses Makaton symbols and teaches the signs, so there's consistency between the two approaches. There's a lite version you can try if you have an iPad already.

zzzzz Wed 27-Mar-13 17:03:42

Delete all but the thing you want him doing....ahhhh the joy of the cloud.

theDudesmummy Wed 27-Mar-13 17:05:06

I'll try that!

moondog Wed 27-Mar-13 17:07:49

It's a difficult area. As Dev says, most people fail to realise that pecs used properly involves reinforcing speech but all the while that this is being done, the child is requesting identified reinforcers with pictures. Thus there is always built in purpose. Many ABA programmes focus on sound imitation alone which means that if speech is not acquired then the child is up the proverbial without a paddle. Unfortunately most kids with add do not learn to speak and additionally many have dyspraxia. So the barriers to speech are huge. Motivation issues to imitate without skilful use of external reinforcers and physical doffs in actually doing so assuming they ca. Be motivated to do so!
It's a personal choice bug as always, weigh up the hours and hours of discrete trials you may need to get your end result. I know kids who have undergone thousands of trials for a handful of sounds when I know that in the right hands they could have worked kn these sounds and ALSO have a sophisticated repertoire of nanda and often even tacts.

zzzzz Wed 27-Mar-13 17:27:58

I can't stress enough how much easier music/tone were for ds to understand than words/pictures/sounds. He really couldn't "see" pictures at all till he was 2 or 3, and I mean at all. Confusingly he could "see" letters/shapes, but photos not at all. I sang my way through his first four years, different songs, humming, even the bzzzzzz went up several notes at the end so we could tell that's what he was saying.

Ds has just sat making a lump of bread dough into a quote "cuddly play-dough friend" while his siblings made their choice of revolting marvellous creations. He told us. No prompting. At 3 he couldn't ask for water or food and knew no names. I think (well to be honest I know) he couldn't hear the consonants in language. I suspect he talked with vowels long before I "heard".

jomaman Wed 27-Mar-13 17:39:17

hi thedudesmummy, i've not got much time but didn't want to read and run as our situation with ds1 who is now 5, sounds a bit like yours. For first 9 months we were doing ABA and having lovely progress but no speech, no progress with echoics, manding with signs was very limited. We were using a mixture of pecs and sign, on advice of our ABA consultant, using 'total communication' approach, so any attempts at communication are reinforced. This was a big improvement on both pecs only and sign only methods that we had tried prior to this. I sort of relaxed about what method we used and concentrated on increasing the overall amount of manding. His motor planning prevented him from getting good at signs and verbal dyspraxia was really holding him back with echoics.
I think what changed for us between ages of 3.3 and 4 was we started to work on echoics using cued articulation and talk tools, after having worked quite a bit on phonological awareness. I think I posted before on this in case you want any further description, sorry I have to go now! good luck. also we looked into 'prompt' briefly but ended up not using it because the other stuff was working. huh

messmonster Wed 27-Mar-13 17:58:32

... and just to add to my earlier post very quickly before I dash out - our consultant also advised focusing on signing and to drop PECS because she felt my DDs "natural" communication style was signing in the sense that she picked up a few signs very quickly. But, her fine motor limitations soon inhibited her learning a wide vocab of signs...

I feel we lost valuable time doing that when DD could have been communicating with us much better using this total comms approach (in our case vocalisation, gesture, signing and communication book depending on the situation). In her case she has an extremely strong desire to communicate and so was terribly frustrated before she had a good method for doing so. I didn't want to go down the Comms Book/PECS route at all because I saw it as "second-rate" and not "proper" somehow but it's only been beneficial.

And speech is coming very slowly. She is now "talking" albeit with a vocabulary entirely devoid of consonant sounds smile

Thanks for this thread, really useful to read all the replies and I'll come back later to read them again.

Good luck with everything thedudesmummy

bialystockandbloom Wed 27-Mar-13 18:23:26

I only have a second to post and haven't read whole thread, but just wanted to say that one of my tutors has been working with a boy of 5yo for three years, and he has recently begun to talk for the first timesmile It's a long road and no promises, but it is possible.

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