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Grrrr, so frustrated with my asd ds, - ABA here I come.

(26 Posts)
StarlightMcKenzie Tue 21-Jul-09 10:28:23

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silverfrog Tue 21-Jul-09 10:51:11

oh Starlight, i wish i had some words of wisdom, but I too have been exactly where you are now.

do try to bear in mind that he isn't doing this deliberately. he didn't refuse to engage inorder to wind you up. I have had many many moments of similar anger, when I have set up an activity that dd1 will do with dh (and love) or when I have sourced something for her with hours spent looking for just the right thing to help her/cheer her up etc. All to no avail.

Has your ds made things with felt before? is there a tactile issue in the activity you chose? I remember all too clearly searching for (and eventually, after days of looking) a Maisy toy for dd1, as her favourite only book at the time was Maisy's Pool. I found a maisy in the same swimmng costume - exactly the picture dd1 liked best. I was so excited, as I was sure she would love it, and be very happy with it. She has never looked at it, and in fact it also made her give up her favourite book, which was then her only form of communication. You win some, but ime, you lose more <sigh>

Go and spin some wheels with your ds - it can be surprisingly pleasurable smile

StarlightMcKenzie Tue 21-Jul-09 11:06:13

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saintlydamemrsturnip Tue 21-Jul-09 11:16:28

Follow him and engage with whatever he's doing. It's far more successful as a technique with ds1 who does his utmost to avoid any directives. Which isn't that beneficial if your aim is to play iyswim! I do a lot of 'uh oh's and clowning and messing around which he likes.

I'd also say keep it as simple as possible. Stirring things together, bowls of water and bubbles etc. Or physical.

saintlydamemrsturnip Tue 21-Jul-09 11:17:06

Is there any form of support nearby? Portage? Or an early intervention programme of any sort?

silverfrog Tue 21-Jul-09 11:17:16

I am no expert, but am 3 years further down the road than you. I have done all the same things you are doing, and felt the same frustrations. In fact, i was guilty of doing it only a few weeks ago, as dd1 has improved so much that she should now be ok at following my agenda <delusional>

It really does just make life mopre difficult.

Try to see it from your ds's point of view. a couple of weeks ago, he could toddle about quite happily going about his business.

then all of a sudden, the person who he trusts most in the world to let him be and do his own thing changes the rules. and introduces new games, which he may not understand the rules to.

have you tried engaging with him in a 1-1 on his terms? doing whatever it is he wants to do? sorry if you have, and if this sounds patronising at all, I do not mean to be. I have tried so many times to get dd1 engaged in something - something she should be doing, or something she should enjoy.

but she is her own person, with likes/dislikes and opinions, even if I cannot always understand them. and I have had more success (especially when she was younger - your ds is around 2ish, iirc?) with following her lead, and joining in something she is already doing.

or playing alongside with something (shape sorter or similar), playing as another child might, with real enjoyment, and noises of interest and discovery, and letting ehr come at her own time to investigate. dd1 likes being in control of stuff, and would often use me as a tool to play with toys rather that play herself, but it was a start which we could build on.

try not to change too many things at the same time - sitting himdown in an unfamiliar setting, with new toys, in an unfamiliar situation might just be too much for him.

and be kind to yourself too - take tiny steps. shared attention over 2 seconds of an activity is wortha lot more than 20 mins of stress getting him to do soemthing he doesn't want to do.

StarlightMcKenzie Tue 21-Jul-09 11:31:58

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StarlightMcKenzie Tue 21-Jul-09 11:34:05

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saintlydamemrsturnip Tue 21-Jul-09 11:38:34

No portage? (although mine was a bit useless I have to say). My previous post was trying to say the same as silverfrog. Still if I say 'ooh look ds1 a new toy" get it out and shove it in his direction, he's off- I might want to direct him! I can't tell you how much he loathes being directed in any way. He has a total aversion to it and I think that comes in part from assessments and being asked to do things all the time which are hard for him, We have done it in the past, and we do still do it at times, but it is hard work and it needs to be done with a very specific reason (and can lead to behaviour problems in ds1's case).

I have found the following him and engaging with what he's done (commenting in the main rather than asking questions, or playfully getting in the way) to be a lot easier to do without professional help, and ds1 enjoys it more.

Have a search on YouTube for some Floortime activities- lots are fairly easy to do without needing a consultant and ime the kids enjoy them so are more willing. Also if you can bare to watch it have a look at Autism Every Day- you will see a little boy doing exactly what you have described and his Mum talks about it and the frustrations of trying to do a joint activity when you can't get your child to engage. It is very very difficult, so don't blame yourself, I think many of us have been there.

saintlydamemrsturnip Tue 21-Jul-09 11:41:45

this is a nice video showing a Mum following her child and doing (and extending) what he's doing.

StarlightMcKenzie Tue 21-Jul-09 11:41:48

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saintlydamemrsturnip Tue 21-Jul-09 11:45:17

Oh that sounds as if it worked well!

The comments under the video I linked to above are helpful as well.

juliaw Tue 21-Jul-09 11:45:59

feel for you, we are sat here too with no support for past 6 months and nothing even on the horizon until september - kids don't have autism in the holidays apparently. If you can't get out can you pull the sofa cushions on the floor or go bounce on a bed together - i find i get the most engagement with stuff like that. My DS just sits on the computer all day and I feel so guilty but like you we try 1:1 and its just 20 seconds here and there before he loses interest. The only support we have been offered is a mythical early bird course which never seems to get timetabled. Do you try doing stuff hand over hand - my DS objects the first time but by the second time he is joining in. Trouble is to do stuff properly at the beginning you really need two adults - one to direct DS until he joins in voluntarily and the other to be the partner. We are a way off being able to just do it 1 on 1. On the plus side we went to watch an ABA session yesterday and although it is slightly odd to watch a child being taught to play I could see how if DS could get to the point where he listened and complied that this would be a way he could learn. Apparently it is normal when you start trying to engage them on your terms to kick off - I have been warned that the first week of ABA can be horrendous behaviour wise. Does your DS like the computer? Mine is obsessed with poissonrouge, youtube nursery rhymes and cbeebies; it makes me feel guilty but it does give us a break.

silverfrog Tue 21-Jul-09 11:49:35

that's just it, starlight - do it the way you know you and ds are going to enjoy smile

after all, this is as much about you being a family as it is about your ds learning stuff.

great that he liked his caterpillar too (have you seen the Hungry caterpilar drawing books in shops now? - completely blank for you to colour in your self, and I also found a sticker book yesterday, to fill in the story)

I have found with dd1 that the way to start doing anything with her is to make sure she enjoys it. once she is laughing, then you can do anyhitng with her. she is very eager to plaese as long as she is enjoying it. but directing her too much just doesn't work. she clams up, won't engage, etc. she ends up sitting htere gazing blankly off into space. but if we let her make more of the running, then she is very interested and interactive.

it can be a tricky balance, but the important bit is to do what works.

StarlightMcKenzie Tue 21-Jul-09 11:54:06

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saintlydamemrsturnip Tue 21-Jul-09 11:56:06

You can use the floortime techniques for playtime anyway - even if you do ABA as well. Will you be using tutors (my younger 2 were always in the way when we tried to do ABA- had to lock ourselves away).

StarlightMcKenzie Tue 21-Jul-09 11:59:44

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smallwhitecat Tue 21-Jul-09 14:45:33

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StarlightMcKenzie Tue 21-Jul-09 15:05:53

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smallwhitecat Tue 21-Jul-09 16:16:05

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silverfrog Tue 21-Jul-09 16:35:27

Hope your appoiontment goes well, Starlight.

It's been a big anniversary year for The Hungry Caterpillar, so loads of stuff about now (some of it reduced in ELC sale, I noticed today)

Drawing books, sticker books, a pop-up, last year I got a set of THC flashcards (well, it's a card game, but we just use them as flashcards - been useful for counting etc as have the right number of fruits on), we also have a caterpillar that we got with a huge version of the book.

jojomamnbebe used to have crockery and cutlery too, which could be useful if you are having issues with food/eating.

sadminster Tue 21-Jul-09 17:15:29

I'm sitting around waiting too, everyone is off sick or on holiday. I'm at a complete loss - the only help/advice I've had is from mumsnet.

I have no idea what to do with ds - he ignores everything, can't ask for anything but is perfectly happy as long as we're all doing exactly what he wants.

smallwhitecat Tue 21-Jul-09 18:00:41

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saintlydamemrsturnip Tue 21-Jul-09 19:21:47

Pecs is brilliant if your son can't ask for anything. Ds1 wasn't able to sign until after he learned to imitate - so not until about age 8 but he picked up pecs really easily

sadminster Tue 21-Jul-09 20:56:01

I'm still reading & absorbing.

PEACH are sending us stuff & we've spoken to Sean Rhodes & CEIEC but tbh I think they are going to be too expensive. Will email Ruth Glynne-Owen too see if she has any ideas. I'm still waiting to approved on the ABA-UK list but was wondering if it was possible to get a supervisor to sort out a programme/some training without a consultant. Also looking at Growing Minds but I'm worried about the wait for training & even Help Us Learn. No idea where the money will come from ... am going to start (yet another) thread ...

We should be seeing NHS SALT next week - I'm going to ask them about SALT & Makaton.

DS is much better if we get out for a walk/bounce too.

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