Reasonable self help targets for severe autism

[getbakainyourjimjams]

Another thread got me thinking. We still help ds1 get dressed, I kind of half plonk an item of clothing on him and let him finish- (although he likes to pretend to get undressed), we still wipe his bum (he did go through a phase of getting interested in toilet paper, but just flushed it down the loo without realising there was an inbetween), still clean his teeth. He can feed himself, but we sometimes have to feed him to get him to eat (although again I would tend to half do it- ie put the spoon in his hand). he can't use a knife and fork properly (although a lot of that is about the food he eats),

Soooo what should we be aiming for? I'm not sure I want to wipe his bum at 16 so presumably I should teach him, but a) how (he tends to charge off naked at the toilet- always strips off for it, and jumps in everyon'es bed). I guess I need to stop him stripping off first but that's pretty set.

I guess this is a question for the parents of children who are severely affected, but how much do you expect your child to do independently and how do you get there (especially bum wiping).

JJ..i find i feel the same ..as you know mine are HFA...but i feel i am 'drifting'...still giving drinks in beakers with lids...still layering clothes in the right order to put on...still giving plenty of warning to 'get them off activities'...the list goes on of the many 'small' provisions i make daily...

and then sometimes i cosciously decide to 'stretch' their boundaries...or move the goalposts...or deliberatly break a routine...just to see what happens...(i am 'lucky' in that i can 'recover' the situation relatively easily if reaction is too bad for me to cope with...)

then sometimes ...we survive....and i continue with the 'new' way...feeling proud that they managed etc....but mainly the exercise proves they do need the intervention i am providing....that they cannot do the thing i am trying to get them to do...and that i then carry on as before ...but NOT wondering whether i am doing something that doesn't NEED to be done.

There are many 'little' things that i do now which seem ok for the age my kids are...but am aware as you said that i won't want to be doing them when they are 16. BUT...i think its worsened by the fact that THEY look so 'normal'...so every now and then i EXPECT normal life...whereas if they had no limbs...i KNOW would not be looking for independance...hope that makes sense... just feel that for me...

AND...then there's the 'annoying' fact that as is common with ASD ... they CAN almost use an emulator to 'behave/function' in a certain way at school...and then at home revert to 'their normality'....leigh actually talks about his scool being on a different planet...and home being on 'his planet'...he is violent at home- NEVER at school...he etc

so then we cannot help feeling that 'maybe' "if they can do this at school...then they can jolly well do it at home"...its made worse by comments from nursery/teachers etc saying things like "well,we don't HAVE to do that with him at school...he manages fine"...when you've just explained a strategy that you feel is essential.

so JJ...i know we are at different places in the spectrum...just hoping something i said makes sense...as when i read your post...it REALLY struck a chord with me as i have been feeling as you described for a few months...

when i get really depressed...and i imagine just not being here...and then watching from above and seeing that 'the boys do very nicely thankyou very much WITHOUT all my strategies /interventions'- THATS when i am at my worst for questioning whether i should carry on doing all i do...am i actually helping them longterm...

there's a gabriellle song.....as follows...and it makes me cry at times ...as i DO wonder what i will be doing in 10 years time....

"Do you have a vision,
Do you have a goal,
I'm watching you shrugging your shoulders,
Telling me you just don't know.

Do you get emotional
Is there something you're passionate about
I can tell that you're still searching,
Still trying to work it all out.

It takes time
Take your time
You will know
When it feels right

[Chorus]
Where you gonna be in ten years time,
Will you be happy with the way you've been living your life?
Will you be alright,
And when you're looking back to now
All the years gone by
Will there be something that you say
That you should have done right
In your life

What would you fight for?
For what do you stand?
How will you go about it?
And do you have a masterplan?

What are your demons
How much for your soul
Have you found religion
And gone down that road

What would you do,
When your back's against the wall
Would you stand on your two feet
Would you admit defeat

These are the times
You need to be strong
Don't you know,
Don't you know that is hard
Have you learned to find a way
You gotta find a way to carry on

chorus"

My ds is not severe but has very poor self help skills due to lack of initiative and understanding of end results.

We set IEP type self help targets with school. Take off own coat etc and then backward chained it. He would have a visual time table and support from staff or us, he would be expected to complete part of the task and we have had to be very consistent to get him to take any responsibility.

We were also told to only set very small targets and concentrate on one aspect at a time, so break bum wiping into steps,tros down,pants down,rest of clothes still on, the breaking off of the tissue, the bum wipe, the flush, the pants, then the hands.

I will be honest and say that I have quite a few friends that are wiping 12 year old bottoms or at least finishing off.

Do you see a behavioural Psych or clinician?

We see a clinical psych (who is great actually). I must ask her. Thanks.

MrsF I'm off to itunes- that could be my anthem

i am so relieved i did not 'trivialise' your post...i worried after i posted!!!

It's just i just 'felt' where you were coming from

I keep thinking about this. Still haven't attempted toilet training and I think it's amazing your DS is toilet-trained, Baka. DD naturally good at helping to take clothes off so we're working on that. Feeding, she can take a loaded spoon but this is tricky as presented with a plate of food would just put her hands in it and shovel it in! I keep worrying we do too much for DD and we need to 'push' her to maximise independence going forward...