Anyone with young ASD children?

Nicki

Gosh she girl I think we must be twins separated at birth. I have given up on Social Services as we have never been offered anything. When I was 34 weeks pregnant and ill and stressed with no 3 I asked for some holiday respite for my DD over the summer holidays. I was refused but the social worker told me I could walk to the playground at the end of the road and leave my DD there unattended and go home and sleep and go back a few hours later and pick her up!!!!!!

DD at the time was 7 years old, wholly non verbal with a cognitive age of 2, no road sense or sense of danger, in receipt of higher rate DLA and attending the local special school :eek:

Even when I had a premature labour scare at 36 weeks we weren't able to access any help and I had to get my 75 year old parents to come and stay for a week even though I wasn't able to leave them alone with her either, just so I could sleep and put my feet up in the middle of the day for a short while and know there was someone there to shout for me if she was going to hurt herself in some way.

Other families in the borough with kids the same age but not so challenging were being given 3 weeks play scheme with ASD trained workers so it wasn't that there was no service suitable just that they weren't prepared to give it to us.

daska

Nicki wrote: »

Thanks for this thread! I have a 12 year old profoundly autistic DD who is getting quite handy with her fists and it is hard work. I find MSE not a very safe place to talk about autism as there are quite a few posters who like to expound how these kinds of behaviours are all down to poor parenting :mad: (needless to say not parents of ASD children themselves) and when I read these kinds of posts I imagine everyone in real life shares those views, which means I end up not only stressed by the fact that I am facing unpredictable and often quite painful assaults at home, but unable to draw on support from anyone when it happens and having to keep it quiet, like a true DV victim... So in the nicest possible way, it is a huge relief to read that I am not the only one going through this.

As for answers, at the moment I have none I am afraid. I did try to discuss it with my GP recently on the off chance this was a reaction to her epilepsy medications but was told it was probably just adolescence, with no other support offered. CAMHs support for the very seriously autistic in our area is non existent though they are happy to faff around with the more minor stuff only with verbal Asperger's kids.

I have a lifeline for when DS2 gets physical, SS insisted I have one because I'm disabled with severe mobility problems so very vulnerable at times. But actually I think everyone who has a child who can beat them up should consider getting one - you could ring SS to find out what schemes are in place.

DS2's violence has been dramatically reduced with appropriate sensory strategies (comes under paediatric occupational therapy), 80% of kids with ASD have sensory problems so it's worth investigating. One of the biggest impacts was our (completely accidental) discovery that wearing a tight hat allowed DS2 to sleep; we found that out in February and he's made fantastic progress in all areas since then. One of our neighbours now sends her child to come and bounce off some of his sensory needs on our trampoline - socially he's not quite up to coming to say hello yet but he has access whenever he wants and every now and then I look out and see him bouncing away!

Has anyone here seen a difference with diet? Whilst it's totally subjective, the carers and I believe we have seen a big difference in his behaviour since I've reduced the sugar/grain/carbs generally (he's a pasta fiend, he'd eat it 6 times a day if he could - uncooked!) and switched to unhomogenised milk and this seems to have lead to him being a lot calmer. We know, having monitored him at home and school that a protein breakfast (bacon and eggs or good quality sausages) instead of weetabix has a direct impact on his behaviour and ability to cope, often for the rest of the day but the rest is harder to prove.

shegirl

Nicki wrote: »

Gosh she girl I think we must be twins separated at birth. I have given up on Social Services as we have never been offered anything. When I was 34 weeks pregnant and ill and stressed with no 3 I asked for some holiday respite for my DD over the summer holidays. I was refused but the social worker told me I could walk to the playground at the end of the road and leave my DD there unattended and go home and sleep and go back a few hours later and pick her up!!!!!!

DD at the time was 7 years old, wholly non verbal with a cognitive age of 2, no road sense or sense of danger, in receipt of higher rate DLA and attending the local special school :eek:

Even when I had a premature labour scare at 36 weeks we weren't able to access any help and I had to get my 75 year old parents to come and stay for a week even though I wasn't able to leave them alone with her either, just so I could sleep and put my feet up in the middle of the day for a short while and know there was someone there to shout for me if she was going to hurt herself in some way.

That's shocking!! they suggested leaving her?Are they out of their bloody minds:eek:

Made me laugh once when his teacher told me to have a kip at home while ds was there...not a chance in hell:rotfl: God knows what he'd do!

The past year or so they've been awful. B*astards wouldn't even help when I had a nasty fall this year and couldn't walk at all,needed to go to hospital and was crying in pain.Wouldn't get him to his normal respite centre or anything.I spent god knows how long crawling and hopping around the house,couldn't get him to school,get any shopping or anything and had to deal with him while being unable to walk.Their response was 'oh,he's 2:1 we can't do anything'

Just who exactly is meant to help then????

shegirl

daska wrote: »

I have a lifeline for when DS2 gets physical, SS insisted I have one because I'm disabled with severe mobility problems so very vulnerable at times. But actually I think everyone who has a child who can beat them up should consider getting one - you could ring SS to find out what schemes are in place.

DS2's violence has been dramatically reduced with appropriate sensory strategies (comes under paediatric occupational therapy), 80% of kids with ASD have sensory problems so it's worth investigating. One of the biggest impacts was our (completely accidental) discovery that wearing a tight hat allowed DS2 to sleep; we found that out in February and he's made fantastic progress in all areas since then. One of our neighbours now sends her child to come and bounce off some of his sensory needs on our trampoline - socially he's not quite up to coming to say hello yet but he has access whenever he wants and every now and then I look out and see him bouncing away!

Has anyone here seen a difference with diet? Whilst it's totally subjective, the carers and I believe we have seen a big difference in his behaviour since I've reduced the sugar/grain/carbs generally (he's a pasta fiend, he'd eat it 6 times a day if he could - uncooked!) and switched to unhomogenised milk and this seems to have lead to him being a lot calmer. We know, having monitored him at home and school that a protein breakfast (bacon and eggs or good quality sausages) instead of weetabix has a direct impact on his behaviour and ability to cope, often for the rest of the day but the rest is harder to prove.

OTs will happily tell me he has sensory processing problems,probably SPD,but we've had nothing with that either.At the moment I can't really go private either as with him now being in school part time my career is majorly on hold!

Diet makes no difference with ds unfortunately and he doesn't eat many carbs,he's a protein fiend -I hate chicken and fish with a passion now:D

Nicki

shegirl wrote: »

That's shocking!! they suggested leaving her?Are they out of their bloody minds:eek:

And can you imagine the poo they would have dropped on my head if I had taken them at their word and done it! Because there is no question that any adult who saw her there unaccompanied would have immediately called the police or social services or that she would have been badly hurt or got lost, and then I'd be being accused of neglect as it was so obvious she needs full time adult supervision.

shegirl

Nicki wrote: »

And can you imagine the poo they would have dropped on my head if I had taken them at their word and done it! Because there is no question that any adult who saw her there unaccompanied would have immediately called the police or social services or that she would have been badly hurt or got lost, and then I'd be being accused of neglect as it was so obvious she needs full time adult supervision.

Yep. They'd have whipped her away same day no doubt!

daska

Nicki wrote: »

Gosh she girl I think we must be twins separated at birth. I have given up on Social Services as we have never been offered anything. When I was 34 weeks pregnant and ill and stressed with no 3 I asked for some holiday respite for my DD over the summer holidays. I was refused but the social worker told me I could walk to the playground at the end of the road and leave my DD there unattended and go home and sleep and go back a few hours later and pick her up!!!!!!

DD at the time was 7 years old, wholly non verbal with a cognitive age of 2, no road sense or sense of danger, in receipt of higher rate DLA and attending the local special school :eek:

Even when I had a premature labour scare at 36 weeks we weren't able to access any help and I had to get my 75 year old parents to come and stay for a week even though I wasn't able to leave them alone with her either, just so I could sleep and put my feet up in the middle of the day for a short while and know there was someone there to shout for me if she was going to hurt herself in some way.

Other families in the borough with kids the same age but not so challenging were being given 3 weeks play scheme with ASD trained workers so it wasn't that there was no service suitable just that they weren't prepared to give it to us.

OMG that's atrocious. I would have been making a written complaint before she was out of the door! How do such ignorant people manage to continue in such a responsible job?!?!?

DS2 doesn't have his official diagnosis yet (still a year to wait before he gets that assessment) so children's services refuse to assess his needs so I use all my personal budget managing DS2 and we fit everything that needs to be done around him. If I didn't have Adult Services involved for my care I think DS2 would be in care by now.

**Patty**

I wasn't going to post here as the OP asked about young children & mine's now 15, i didn't feel i had anything relevant to say.......

But to cut a long story short, he does all of the above.

At 6ft 1, he's now too big for me to deal with alone & i frequently get strange looks in the shops , mostly in summer...jumpers & jeans cover them up in the winter......about the amount of bruising i have. One little old lady looked at my OH one day & told me *leave him dear, it only gets worse*:eek: Poor hubbys face was a picture.

I agree with you all....support is non-existant.:( At 7, he headbutted me & knocked me out cold.......and at 15, we don't get any more help now than we did then. (Not that we get any help!)

OH works away 3 weeks out of 4 so it's all down to me. (plus he isn't his bio-Dad anyway so gets no say...another bone of contention!)

**Patty**

About the diet thing: The ARU at Sunderland did a project (Osiris) about the effects of gluten in ASD children......in some cases, it worked well. If i find a link, i'll update

shegirl

**Patty** wrote: »

I wasn't going to post here as the OP asked about young children & mine's now 15, i didn't feel i had anything relevant to say.......

But to cut a long story short, he does all of the above.

At 6ft 1, he's now too big for me to deal with alone & i frequently get strange looks in the shops , mostly in summer...jumpers & jeans cover them up in the winter......about the amount of bruising i have. One little old lady looked at my OH one day & told me *leave him dear, it only gets worse*:eek: Poor hubbys face was a picture.

I agree with you all....support is non-existant.:( At 7, he headbutted me & knocked me out cold.......and at 15, we don't get any more help now than we did then. (Not that we get any help!)

OH works away 3 weeks out of 4 so it's all down to me. (plus he isn't his bio-Dad anyway so gets no say...another bone of contention!)

Not easy is it,ds dad ran off with a bimbo earlier this year and decided not to see ds anymore,couldn't get in the way of his fun with her...then they instantly started trying for a baby:eek::rotfl: (not sure he knew he was trying for one mind ).

Part of me so desperately hopes it was his genes