Is it me or is this just not enough - please help me think things through

[Firsttimer7259]

Our daughter is 2. She has GDD we have been working with Peads etc since 14months. She has a physio, SaLT, Visiting Teaching Support (portage), and will have OT as of next week. She has nursery 3 days a week and a nanny.

The pead has pronounced our D a mystery. Shes never seen a child like her. Shes healthy, happy but over 12 months delayed. She has no language at all, but is sociable. Shes almost walking and can crawl. I think her fine motor skills have a problem somewhere - she has a pincer grip (it was late) but the way she handles objects is often like a much younger child (well really like a baby). She does not copy wave or point. I cant really see any disordered behaviour as opposed to delayed - shes not clumsy in her crawling or cruising, doesnt have any aversions anyone can spot. She sometimes blank looking up at lights or windows - they thought this might be absence seizures but EEG was clear (altho they arent conclusive)

The thing is no one seems to give me a working hypothesis of what may be going on and so what we should try. The physio has been great at getting her crawling. She really saw where the weaknesses were advised us on how to position her etc and we could really see that taking effect. I dont see this effectiveness in anything else we are doing.

Everything else is really murky. We did a hanen prog which was good. But her speech has really not come on. She has periods of babbling but they disappear again. We see SaLT every 3 months.

I am really frustrated but not sure if my frustration is legitimate. Maybe its just that everything is being done but progress is v v slow? But otherwise everyone goes on about repetition but somehow it seems what we are doing often fails to connect with D. A lot of the play stuff with the VTS relies on encouragement and praise. I dont think my D is all that bothered about encouragement - she does like praise but only really when its also something she also wanted to do: ie: praise wont really divert her from her interests.

I dont really know what my issue is except that I find it all too random. Its like the therapies are making the most of her interests when these arise. But we arent really bridging the gap...I dont know how to explain this. ..I guess I feel that D has disengaged (or never engaged) from copying and from making objects do what she wants. If she isnt trying to do this how can she learn or play?

Yesterday we had an ABA person come over for an initial meeting. 2 things she said really stuck with me. One is to show my D signing hand over hand. We have been signing for well voer 6 months, plus 10 weeks of sing and sign and signing at nursery and no signing as yet from D. Also they way she was using encouragement (reinforcement) was so much more specific. She also said not to focus on teaching 'more' and 'again' as my D is avoiding leanring this and once she has those signs she may use them to avoid learning others. Now VTS has been pushing again and Salt has been pushing more. Its the 2 signs we keep using in the hope that they will finally register. But as far as I know our girl what the ABA person said is exactly what she will do! Also ABA person advised to try teaching signs hand over hand as demonstrating signs isnt registering with D possibly becuase she doesnt copy. That made my jaw drop - it seems really logical. Why hasnt anyone else told us to try differnt ways of teaching our D? They keep going on about repetition but maybe we are not repeating the right thing. Or the most effective thing to help our D learn.

This is such an essay I am sorry. Its just I am very confused regarding the input our D is getting. Is it really not enough or is that just because I am frustrated that shes not progressing and taking that out on the people trying to help us?

The above may read like 'please tell me ABA is great' I dont mean that. Its just I feel like we are floundering is that just how it is or could we be more targeted -even at the age of 2??

it can be so difficult.

the most important thing a child needs to learn is how to imitate - it is how typical babies and children learn: through observing, and then copying and practising.

as you have realised, ABA is not rocket science , but it is about targetting what needs to be done now in order to maximise your dd's chances of learning. for your dd now, that sounds (to me, as someone who has never met her!) that hand over hand teaching is a good start. you have tried constant repetition and it is not the right level for her right now, and she is not progressing. hand over hand can be good - it is what I ended up doing with my dd when she was about that age, to teach her absolutely everything, form how to hold a cup to how to tip it, how to hold a spoon, and then how to move it to her mouth to be able ot eat form it - nothing came naturally to my dd1 in her early days.

in a away, what the ABA person did for you (and your dd) is what the physio did for ehr crawling - identified the exact point where your dd needs help, and start from thee, rather than carrying on doing what works with typical children (the range of exciting play to entice, the encouragement and praise, the repetition in the hope of imitation just coming)

it took a while for my dd1 to learn to imitate motor skills. she could observe well, but it was as if she just did not realise that she could do those movements too - it was interesting to her to watch us, but it did not join up in any way in he head and translate as a gesture/movement/play of her own. sometimes it was that she did not realise she was meant ot do it too, sometimes it was that she did not know how to move in that way to reproduce what we were doing (motor skills delays).

what ABA did for us was to pinpoint exactly where dd1 was on the scale of development (broken down into far more steps than 'sitting' 'cruising' 'walking' 'saying one word (then 2, then 3)' etc - but tiny little steps), and enabled us to focus on exactly the point she needed help to achieve the next tiny little step, and the next, and so on. it did this for motor skills, for cognitive skills, for language skills, for everything.

and it taught me a lot about reward/reinforcement. about how to view it through my dd's eyes, and that what was supposed to be reinforcing for her (social praise and encouragement, a chocolate button, an exciting toy) was not necessarily what she found rewarding. that was an eye-opener. and the key to helping dd1.

Wot Silverfrog said.

And more importantly that as a parent you understand that any effective intervention will be double so if YOU understand it and use the strategies throughout the day, not just in 'sessions'.

It is a difficult stage that you are at. There is a lot to learn. However, I promise that you become natural at is all.

If DS is misbehaving I can assess him and his current motivation and immediately implement a strategy to get through the situation. It can be literally anything.

I've been known to say 'if you want to keep holding that empty crisp packet you need to sit still' or 'if you touch that again you'll have to take one shoe off' or 'if you put your own underpants on you can wear the green ones. If mummy does it you'll have to wear the red ones etc.'

Wot Silverfrog said.

And more importantly that as a parent you understand that any effective intervention will be double so if YOU understand it and use the strategies throughout the day, not just in 'sessions'.

It is a difficult stage that you are at. There is a lot to learn. However, I promise that you become natural at is all.

If DS is misbehaving I can assess him and his current motivation and immediately implement a strategy to get through the situation. It can be literally anything.

I've been known to say 'if you want to keep holding that empty crisp packet you need to sit still' or 'if you touch that again you'll have to take one shoe off' or 'if you put your own underpants on you can wear the green ones. If mummy does it you'll have to wear the red ones etc.'

Is it simply that she is a kinaesthetic learner at this stage of her development, and thw ABA person has recognised this. She learns by doing rather than watching or listening, so hand over hand movements will enable her to practise and learn?

Hi. I understand your frustration and have no advice. The only thing that came to mind is that children can only learn in areas they are interested in. (I know you know that.) Are there areas she is interested in, e.g. crawling, where you can get her motivated to do just once step more? I have been trying to teach DD to distinguish a sheep from a cow for two years now and since I have given up and we built lego towers instead we both have much more fun and she is
enjoying to push herself to add one more. [Obviously I don't mean to say never sign to her again....].

Yes! Silverfrog thats really getting at what I am trying to express. I dont know if doing signs hand over hand will help but at least its something new to try instead of endlessly repeating what we are doing that doesnt seem to sink in at all right now.

I dont know what else we need or even if we need anything else, but I do need someone to talk me through the options, appraoches, how to think things through. At the moment this VTS person comes by tries out toys on my daugther, blows some bubbles is v animated and then she goes again. Hmph!
When I ask about what we should consider/explore I dunno some kind of thinking everyone starts telling me that I am a good parent/doing a good job but they're not answering my questions

That's great that you've made a break through with dd.

Platitudes from professionals drive me up the wall too. It's their standard cover-up for ignorance IME.

Although there are a few stars in the statutory services I do feel that these people get paid, the union negotiates am annual pay rise on their behalf, reasonable pension if they stay in the job long enough, plus everyone thinks they're wonderful for working with disabled kids, irrespective of the difference they make.

But the NHS/lea people look down on the private therapists and say they're just in it for the money!

Another recent thread mentioned a charity B.I.R.D. working on primitive reflexes with gdd children among others. I don't know anything about it bit that might be another avenue.