Receptive communication

[dev9aug]

Had a look at the archives and found some usefull info on communication, but was looking for personal experiences here to guide me.

Ds1 has a working diagnosis for asd. He is non verbal. Very little eye contact, apart from when I am singing to him, then He will look at my mouth and touch my mouth for me to finish singing if I stop midway. Its normally the same stuff so I guess he understands the start and finish. He does babble, but not directed at anyone in particular. The sounds he makes are mostly dada, but occassionally will come out with mama,nana etc...

He doesn't undertand any instructions but has situational awareness, he can imitate, but slow to pick up. Bought a toy for him yesterday and after a few tries, he is having a go at it himself and managing to play with it appropriatly for a few seconds at a time. He then just picks it up and lugs it around. While I am typing this, he has managed to turn the tv on, so knows cause and effect.

My question is, Will he ever be able to understand words instructions and how do I get him to follow them? Hoping to start ABA soon, so hopng that would help, but would apreciate any advice in the meantime. Have the following books and planning to read them as soon as i get some time...

VB-MAPP, guide and protocol.
it takes two to talk...

Hi
I don't have any answers but I'm chipping in because my DS2, 19 months, sounds very similar. He has a diagnosis of Prader-Willi syndrome and has had a SALT since he was very young. She only dealt with feeding issues and now we are on a waiting list for a SALT who deals with speech

I am panicking a bit as we are seeing very little improvement with receptive and expressive language, he also doesn't point at objects or bring objects to me.

I was wondering if I should start using PECS? We already use Makaton and he will sign and say 'hello' and 'more' but we don't seem to be moving on.

I have recently started him two mornings a week at a nursery, hoping it will improve his communication skills. Any thoughts on what to do next?

dev9aug

may be early listening problems or having problems processing what he hears.

"He will look at my mouth and touch my mouth for me to finish singing if I stop midway."

Could this be the first stages of developing lipreading as a alternative compensating strategy to listening.
just a thought

dev the ABA programme will start with some receptive instructions, such as 'sit down' that you can prompt him to do and then reinforce. DS has no receptive skills 5 weeks ago, now he is picking out instructions in long sentences. It's about engaging him and getting him to a place where he wants to listen and he realises he will get reinforced for doing it. It's about consistency, something we never had before ABA. Honestly, I think you'll see a marked improvement with ABA. Have you read verbal behaviour yet?

I'm not ruling out any other issues like auditory processing but try the ABA before worrying too much.

You can call me or pm me if you want to know how the ABA receptive instructions programme works before you start

dolfrog I have my doubts re his listening skills but once we start ABA, it should become clear... He has only started paying attention to singing a few weeks ago, before that there was no interaction from him whatsoever. So it could be the start..

mango I tried but haven't managed to read the book yet, hoping to start as soon as possible and try some of it with ds next week. Thanks for the offer, will give you a shout if I get stuck. I have filled in all the forms and stuff for peach, waiting for a visit atm.

dev you must have a million things on your plate right now. Try not to worry, try the ABA, if that doesn't have any impact, research other things. Honestly it's been a life saver for us and DS.

Right now, i am relaxing, ds has gone to bed unusually early, he only had a 15 min nap. My mum has come over to look after dw who is coming home tomorrow, which will allow me to focus on ds. So life is slowly getting back on track.

dev9aug

the real problem here would seem to be not getting the best professionals advice and diagnosis if available.
ABA could be damaging if APD is the real underlying problem, as you will be blaming him for his APD problems, and rewarding him for when he has a good day and can work around his disabilities, all very stressful for one so young.

dolfrog there will be no blame if he has difficulties, it will become apparent and dev can research other options. ABA is not about blame at all, it's about making learning so easy that the child can't get it wrong. If they do, prompt them and they still get it right. Errorless teaching...

I really cannot see how it can be damaging at all. Have you tried it and had this experience?

Hi dolfrog,

I am interested in your post on APD. My son is currently doing ABA but his performance is inconsistent with fluctuating good days and bad days.

DS has been diagnosed with ASD, but with fluctuations on a daily basis I am concerned that he might have other issues.

Please could you tell me more about APD?

dolfrog

I am not discounting anything. At present, I have visited two different specialists both of them suggested ASD. I have observed that he pays attention to singing, not all singing just some rhymes etc, but not to spoken words, so I am also inclined to think that there maybe an issue with him processing sounds. The decision to go wih ABA is based on the information available to me now. We will continue to see the consultants and if their opinion changes, we can change what we need to do etc.

How would you find out about APD? Is there anybody I can see to find out if ds has this?

Having imitation ability is a brilliant start, and is a great tool to work with

I would also recommend as reading material Robert Schramm 'Educate Towards Recovery' and Mary Barbera 'Verbal Behaviour' - both about VB approach of ABA. The Schramm is a little technical for a beginner but if you're brave enough to attempt to plough through the VB MAPP yourself it'll be a walk in the par! Both are brilliant introductions to the therapy.

Your ABA programme might use PECS to start with if he's non-verbal.

With this form of support you are doing the best thing to help him.

In the meantime, you can start by following the basic principles of ABA: whenever he does something new (eg pick up new toy, make new sound, look at you, give you something, imitate you) immediately give him the biggest reward you can think of - whether it is some food, a favourite song, a tickle, a throw in the air, whatever. When he does something 'inappropriate' or display some unwanted behaviour (eg tantrums over nothing) ignore, ignore ignore.

You can do this too with receptive instructions. So for example say "ds sit on daddy's lap", physically put him on your lap, and make it the best fun ever - bouncing, singing, tickling etc. Do this again. If he shows signs of wanting to come on your lap again (which I'm sure he will if it's fun enough!) say "again? Oh, again" so he gets the idea that the word "again" means he'll get the same fun.

Not sure if this gives a truly accurate idea, but it'll all become clearer when you start a programme. HTH a bit.

hellenbach what zzz says is excellent advice - my dd is now 11 (reading, writing, singing, dancing) and was about where yours is at 19 months. It's about making connections - constantly re-affirming any sounds with objects, linking things, imitating - but if possible, connect a visual with the sound. At about 3 it all took off for mine, everything kicked in. The physical development had to happen before the cognitive, and when it did, she came on leaps and bounds.

bee169

Auditory Processing Disorder (APD) is a listening disability, or not being able to process all that you hear. APD can have a genetic origin or can be acquired via severe ear infections such as Otitis Media with Effusion (Glue Ear). Some children who have genetic disorders such as Downs Syndrome have a lack of immunity against infections such as Otitis Media with Effusion and as a result can acquire APD.

APD is currently diagnosable from 6 years of age, as a developmental disability, there is no cure, so APD is a life long disability. Although the more each individual understands the nature of the APD the better able they are at developing alternative compensating cognitive coping strategies such as lipreading, and reading body language to fill in the communication processing gaps.
All coping strategies for which ever disability have to be run in the working memory (short term memory), and like the RAM of computer it has limited capacity. All humans priorities the use of the working memory subconsciously. So in order to run any type of cognitive coping strategy some other program has to make way in our working memories usually our self organisation skills, and or sense of time. When are stressed or ill subconsciously we focus on coping with illness or stress and our coping strategies have to take a back seat. And because there is no conscious control of our working memories we are not able to switch on and off our coping strategies when we need them. Living with these types of disabilities is more about anticipating what will happen tomorrow and hoping that our coping strategies will be there when we need them, and it is the unexpected which can cause real problems as our coping strategies may not be accessable and so we will probably not be able to cope. WE all have good days we our coping strategies can help us almost appear as if we have no disability at all, but on the bad days we can be very dysfunctional, and on average days we can pass between both extremes. So we have to base life on a bad day, and treat good days as a bonus.

There are a few subtypes of APD, and research is finding more as the technology improves to help understand the various causes of these problems.
You can find out more from my UK APD list of links and my more general Auditory Processing Disorder (APD) links list which includes blogs by two APD teenagers about living with APD (between links 101 - 120)

Great post dolfrog - mine describes mine to the tee. She was described as having it but the Audiologist said there was nothing they could do about it - treated APD as a theory rather than an actual diagnosis. As usual there seems to be more forthcoming from strangers on the net than there is from the services!

Mine watches a TV programme several times on iplayer - I can see why now.

zzzz
Glad to hear that ur ds is coming along. Ds was initially seen by a private salt who also mentioned severe language disorder but she was not very involved, so we don't see her anymore. I am absolutely determined to make sure that ds gets the best care in the world. I am an eternal optimist so I will never give up on him.
ds is 2.4. I have been singing/talking to him non stop ever since he first responded even while walking through town driving. If he babbles, I make sure that I acknowledge it. What I haven't done is link my words to any objects. So that will be my next to see how he responds.
I have noticed that when I speak/sing to him, sometimes he opens his mouth and tries to get a sound out, but he gets frustrated if he can't and reverts back to dada....
What did you do instead of ABA?

realhousewife

Just goes to demonstrate the poor quality training and understanding of APD among so many ENT audiologists in the UK.
A GP referral to Great Ormond Street Hospital, and it may help to download the Medical Research Councils 2004 APD pamphlet to educate the medical professionals. We had a similar problem when we were trying to have DS2 assessed for APD, initially the ENT audiologist did not have a clue.
DS2 has since been assessed at both Great Ormond Street Hospital, school, and the National Hospital for Neurology and Neurosurgery, an adult assessment for college. Both provided a diagnosis of APD.

bialy
I have got the book, but haven't managed to read it yet, but I can see your point. Bought ds a toy at the weekend, drumming bear push toy. He normally takes a while to get used to playing with them appropriately. I realised I was showimg him what to do and then passing it to him and he was doing whtever he pleases with it. So I took his hands and got him to use the toy a few times as you are supposed to. Couple of days later, he is using it as he should.. So am positive that ABA will be very useful.

Tantrums are harder to ignore though.... He had severe reflux early on so we never let him cry because he would throw up if he did. Hard to change that habit, but must do it.
He was very passive couple of months ago, now he is more engaged but that also means that he is more assertive in what he wants these days. To be fair, we haven't had issues with behaviour simply because he has always had whatever he wanted... Need to change that asap though.i can see that being a problem very soon.
I take ur point about linking objects/ scenarios to sounds, certainly somethng we need to do more and that certainly helped a lot.

dolfog

Thanks for the info, I realised that I Probably came accross a bit defensive in my last reply to you, but that was not the intention. I have my concerns with regards to ds only responding to singing. Ds had couple of very mild ear infections in the last year, that cleared up with antibiotics.

He also had a couple of failed hearing tests at the hospital early on this year, simply because they couldn't get him to respond to sounds at the clinic. We had a test done at home when he was sleeping which he passed. He responded to all frequency sounds within the normal range. So. I would be vey interested to see this consultant at GOSH. Could you please pm me the details of the consultant/ department, it sounds like what you said might be applicable to ds.

real housewife
Thanks for the reassurance, I am a bit overwhelmed with all the different approaches, trying to educate myself, need to get researching

I saw the audiologist the other day and the sad news is she's got glue ear again - at the age of 11.

The TV's on full blast, she's making singing noises instead of listening - it feels like we've gong back 5 years. I really need to get more SALT support. Dolfog is it SALTS that do the therapy for APD? If so, what kind of thing do they do?