How do you manage to do the therapy stuff? Guilty and fed up mummy here

[Hamandcheese]

DS1 3 yrs - prob AS / ASD. Has weekly SALT and monthly sessions with an OT, both of whom provide tons of exercises we are supposed to be doing every day. Also we have a sheet of exercises from physio. Most of this stuff is the sort of daily play: jumping / drawing / lacing etc, but does include a set of specific drawing exercise and speech sounds work.

So I guess that is as least 30 mins if not 1hr+ of therapy-related work we should be doing each day.

I'm a bit fed up with it. He's v fed up with it - esp the specific and recognisable stuff. I also work pt, have a younger child, DH is often not home and am pregnant.

I've involved our nanny and his preschool in delivering some of the 'stuff' each day, but it is still SO hard to manage to do any - even on the weekend days (particularly on the weekend days). DS2 wants to be involved, but then I can't focus on the input DS1 requires. Or we just don't have time. plus DS1 refuses (you can't make a child do speech sound games or jump). Or I simply want to do some normal family fun stuff with him like baking, reading etc.

So how do all you super-mums manage just to do it? I know my life's not that tough - DS1 is an interactive, bright, happy little boy; we're not looking at the intense physio you'd have to do for a child with CF. But I can't help feeling that my failing is compromising his future.

[fed up] [self-centred sorry for myself].

don't be fed up I am sure everybody feels like this.
dd has cp and i went to see my friend yesterday who's ds is dd's friend. I ended up feeling guilty as she does so much with her son. but then that is the kind of person she is. I am a bit too laid back and just let things happen.
I sometimes don't think the so called experts realise that children will not oblige and do all these tasks they set. can you not just use the tasks as guidelines and blend them into the day so they are not extra things you have to do.
you say your ds is happy so what you are doing must be working. I would only be concerned if he was really frustrated,
sorry about user name I am 2shoes but forgot to change it back

What's he like to engage? - ah refuses- yes- a lot of NHS therapists don't have that much hands on time wth children with ASD so they have no idea how difficult it is to engage and maintain attention. A point that ds1's (special) school made in his annual review- that many people who come in and observe him, and see him, and his abilities, have no idea how very very very difficult it is to engage him. His teacher called it his "curious passivity"- and I think he had it absolutely right.

Now ds1 is at special school, and getting the right support all week, I let him chill at bit at home. Before then I ended up employing someone as I couldn't do it- with siblings in tow I couldn't even keep him in the same room.

BTW how'd his copying? Is he refusing to make speech sounds because he doesn't understand copying? You may need to start with copying drills (or do as I did and pay someone else to do it )

this might help hamandcheese. Scroll down to our community then watch autism every day. The video shows a mum trying to a puzzle with her son- somethihg he could do in 10 seconds if he wanted to, but he won't. Really reminded me of ds1- and might reassure you that its a commen problem

common I mean!

Thanks for encoragement. Any practical advice?

Jimjams: he's actually usually quite good at engaging (when he wants) and can copy when motivated, he can make all (at least most) of the speech sounds. He can't actually do many of the exercises in the drawing book, but that's becuase he hasn't got the fine motor skills they are intended to address. I (and the others) integrate much into daily activities, key difficulties are:
(a) remembering to do the things that tick off the stuff on the lists, and
(b) getting him to do the specific recognisable things for the 20th time - I get the speech picture cards out and he throws a wobbly, but we can do the same exercies with alphabet letters or he'll do the cards with someone else; he was great with the drawing book for about 2 weeks, then got v fed up. I think he's going "not this again" (he's not the only one). That's why he refuses. I then get fed up wtih trying to find different ways of covreing the same activity. Also resort to bribery, though he's hard to bribe.

And there's the stuff I've not managed to do at all - like go and find and buy some item of clothing with really loose buttons so he can practise buttoning up... get bean bags for throwing ...

HOW do people manage to do it?

The key problem has just dawned on me: I have v little time with DS1 when I don't also have DS2 (poss about 1-2 hours total per week). And in that time I want to do the things we enjoy doing together (baking, digging, reading...) not the things we are fed up with.

Hi Hamandcheese

I think the simple answer is most of us don't manage to do it all, all of the time.
All you can do is, as much as he will cope with & you can manage.
I also work & have 2 boys. ds2 is 3 & has SALT,OT,Physio, Hydro etc. He has global delay, mild cp & poss ASD. I think sometimes therapists with the best of intentions expect too much from the children & the families.
As you say I have found the best way is not to make it look like a therapy session but just build it in to play.
For my ds he responds better to a singing voice so made songs out of some of the fine motor skills activities & he co operated for a little while but still got fed up.
His stretches etc he will only tolerate in the bath but again it works for him.
Normal family stuff like baking is still good learning for him.
You sound like you are doing everything you can so don't give yourself a hard time.

I used to get into such a stew about this - and still do at times. The only way I've managed to do it is to focus on a few things at a time - it's impossible to cover everything. And I'm a SAHM with only one child at home- I don't know that I'd manage to do anything if I had a job and other kids to look after all day. Actually I do know - at weekends and school holidays DS2's 'therapy programme' just doesn't happen.

My view is that you should focus on the 'family fun stuff'. He'll get skills from those things too - and he won't get bored doing it. He sounds very bright. DS2 has got the speech sounds stuff to do too but will only do them if I turn it into a stupid song about Mr Tongue!

Dh and I used to wonder whether we were doing the best for dd1 ( down syndrome) and we decided we were doing the best we could within the constraints we had. Anything we are to do with dd1 has to fit into her busy life ( and ours) and be able to be done with dd2 around.

BUT

don't forget the value in doing regular things like baking, digging etc - just as valuable and meaningful as therapy exercises. They are part of his life/childhood experiences.....They also provide a welcome relief from the 'pressure to perform' that comes with therapy (iyswim)

SO - we are not supermums - I just do what I can and leave it at that... no point in beating myself up about it ( but it did take dh and I a long while to get to that point)

Agree with the other posters - I think everyone gets this. You can never, never do enough. There will always be time in the day where you are sleeping or cooking or looking after other LOs or whatever where you could (read "should") be doing therapy.

It took me a while to chill over this. For instance, DD1 should be patched every day for an hour. She hates it and it's a serious 1:1 battle where you often have to hold her hands down for most of the hour. I get the Nanny to do it in the week and nowadays don't bother at weekends. Her eyesight is improving anyway so clearly "every day" is a bit of an exaggeration. I suspect there's a degree of this in a lot of therapy - therapists give you lists of "daily" exercises that in many cases could be done every other day with more or less the same results.

Other practical advice - the things that work best for us are often the ones that are easiest to build in. Food is a great motivator for DD1 so our best eye contact, and our only working sign, has been gained at mealtimes. Sitting down with her "formally" is far less sucessful. Doesn't sound like she's in the same place as your DS but I think it's generally true.

We also get more success with a) routine (but only after weeks and weeks) and b) removing distractions, ie working in a plain room. But not sure if that generalises quite so well.

think of it the other way round...think of all the bits that you do manage to do ..and pat yourself on the frickin back

the shortness of my post is in no way relative to my awe [you are a supermum imo]

I think that when you are seeing a number of different pros they each think "Well this will only take a few minutes to do each day so I'll give you this to do" - not realising that when you get the same amount of stuff from 3 or 4 people it actually adds up to a heck of a lot.

Ds1 (6yrs and ASD) has some exercises to do each day to help with his co-ordination. This is fine as it only takes about 5 minutes and has become part of his routine. He also has some SALT stuff to look at but tbh I only do it if ds1 is in a good mood and we don't have anything else to do.

With ds2 (3yrs and ASD) I used to try to do everything but eventually realised that the stress wasn't doing any of us any good. I now just do what I can when I can. Sometimes ds2 will do or say something that is relevant to the sheets/activities and I will then quickly dig them out from the folder.

I would say in general that if it's something that absolutely has to be done every day to get any benefit (eg my ds1's exercises) I make it a part of both our routines. Otherwise it's a case of just doing what I can when I can and not stressing too much inbetween.

Thanks everyone for your encouraging comments.

coppertop - your comment re several pros all giving daily therapy reminds me of teachers at school all giving homework for the same night .

Can I ask what co-ordination exercises your DS1 has (though clearly he's older)? I'm currently struggling most with 'getting my head round' DS1's motor skills problems.

Ds1's OT explained that often children with AS/ASD need to go right back to the very beginning to the baby developmental stages. This apparently helps to re-train the brain. Atm ds1 is doing a quick warm-up and then 5 simple exercises:

1. He holds out his arms to the side, turns around very slowly until he has completed a circle. He closes his eyes for 15 seconds and tries to stand still. He then turns in a circle in the opposite direction and repeats the eye-closing/counting.

It sounds easy but ds1 finds it hard to keep his balance even though he is only turning slowly, ie it takes him a good 30 seconds to turn all the way around.

2. He lies on his front with his ahands on the floor by his face. He lifts his head slowly, holds the position for 3 seconds and then lowers it.

This is basically repeating what a young baby does when learning to support their own head.

3. Again he lies on his front but this time lifts himself up until he's on his forearms, holds it for 3 seconds and then lowers his head again.

Again, this is what a baby does if you lie them down on their front.

4. He lies on his back with his arms and legs crossed over each other and his head slightly off the ground. He then slowly unfolds until his head is touching the ground.

5. He lies on his back with his hands flat on the floor. He then splays fingers and toes for a few seconds.

As you can see, these are all 'baby exercises'. It only takes a few minutes to do them all so doesn't take up too much of our spare time. After a couple of months, when ds1 can do them properly, he moves on to the next stages.

The OT also lent me an excellent book with lots of exercises to help gross motor and fine-motor skills. I would think you could get it on Amazon or order it in a b bookshop. It's called: "Take Time" by Mary Nash-Wortham & Jean Hunt. It says on the front cover that it's for children with difficulties in speaking, reading, writing and spelling so it also has lots of fine-motor exercises.

sorry for the delay - thank you to coppertop for your long and clear post.