Aspergers/ASD support thread

D&DD

Morning Snaggles sorry to hear you're suffering at the moment..I go in 'cycles' like that too hun..One minute I can go 10 rounds with the LEA and not stop for breath, another I'm all fought out..
Fighting tooth and nail becomes a way of life and it shouldn't be like this..
:A Trying very hard not to sound bitter and twisted :rotfl:

Snaggles

Thanks D&DD, I'm glad you don't think I'm losing the plot - I was starting to wonder if maybe I was.

It's just all a bit frightening. I'm a very shy person, and I get tearful easily, so I find these battles with all these different departments very daunting. I'm toughening up and learning to speak up a bit, but it does worry me that maybe I should be doing more, or fighting harder. But I suppose the time for that will come, once CAMHS have made their diagnosis.

I feel like CAMHS are focussing on DS's rather strained relationship with his Dad, and are thinking that he behaves the way he does because of those issues. But I know my son and my husband, and I KNOW that their relationship has become strained BECAUSE of the behavioural problems (or rather, because DH struggles to accept/deal with them - something he is working very hard to put right), not the other way round.

You don't sound bitter and twisted by the way, just maybe slightly battle-weary.

kylieM_2

I feel incredibly sad reading your posts.

I personally do not feel mainstream school is the right place for the children to go. Sam goes to a fabulous special school, the staff there have done wonders for his behavior. (apart from his naked runs). Mainstream teachers are not properly trained to deal with it. I am sure it is quite difficult to understand them, when they have not been around it before.

Maybe you guys should look into a rest bite care. Sam goes every Sunday, It gives my mum a bit of a break and he loves going, they take him to the cinema (he never behaves when we take him lol) for walks along Brighton pier, Lunch to MacDonald's and Pizza hut (his favorite place).

NoahsPennilessMummy

I think we all have days when we feel we can`t fight anymore and you get tired of it all......I spent the whole of xmas eve in tears as ds was so hyped up that his behaviour was terrible.....the only thing i really wanted to do o that day was go to teatime carol service.....after 10 mins had to come home in tears as ds could not cope at all and was crawling around the floor etc.
I cried all the way home as it just felt like my life was ruled by autism and i couldnt do anything for myself anymore.....it just gets frustrating at times but somehow you carry on:rolleyes: .

snaggles have you read the book " how to be a velvet bulldozer"?

D&DD recommended it to me:A and it has been invaluable....it is about the SEN system.....i got 2nd hand copy from amazon in true OS fashion:rotfl:

sending you hugs and try to get some rest as it will make your mind clearer.

D&DD

lol Battle weary is sooo true!!
CAMHS does annoy me sometimes when they try to pick you apart as a parent..We had that when we first started as we kept getting passed around different docs.Once we settled with the right one for his 'label' things improved dramatically She is a wonderful lady who is very supportive to the whole family.Hopefully they'll match you up too with someone who understands all his bits.

Believe it or not I'm actually quite shy and retiring in 'real life' :rotfl: I am always told I'm too polite and respectful of other people by my OH but I can't help the way I was brought up!! Other parents may be able to shout and scream and get allsorts of help but its just not my way of doing things...so this always makes me feel quite down on myself thinking if I was Miss Pushy he'd get more help and I'm failing him as a Mum..
Snags I also well up at the slightest thing especially when talking about DS..

Snaggles

Thanks NPM, no I haven't read it, but it sounds like the sort of thing I need. I will go and have a look on Amazon now, thank you.

Sorry about the carol service - we've had to come home from a few places recently and it's hard, especially when you've looked forward to something. And then you get people thinking that you are such a bad Mum you have to take your kids home because you haven't bothered to teach them how to behave in public. Sometimes I swear I just want to stamp my feet, throw my dummy out of the pram and shout 'It's not fair.....IT'S NOT FAIR....'. :rotfl:

It's amazing how coming on here helps put it all in perspective though - I feel much less overwhelmed already, and even a bit less tired....although I can hear DD stirring in her pram in the kitchen (she fell asleep on the school run) so I don't think my chances of a rest are looking too great!

isualive

My DS is 13 & has ASD plus developmental delay etc. He was in mainstream school until he was 7. It was hard work,
as no one fully understood him!

When I first visited the special school that he was going to attend, I was gobsmacked. It's a wonderful school, like an extended family.

The only worry is what comes next, when he leaves school?

I've only just spotted this thread & hello to you all!:hello:

NoahsPennilessMummy

snaggles......i too am by nature a shy person and have had to force myself to fight......and it is getting easier.

I completely identify with the getting tearful thing!
I feel so emotional about all of this that if i have to talk to various people at school/LEA about the problems I get tearful and feel sure they think I am way over the top!:o

i dont think respite care would work for me as it would stress ds and myself so much it woud make it worse.

when ds was diagnosed at 2 my dh left fairly soon after for various reasons and i had a year on my own with ds and that was very difficult as i have no family nearby.....i am now with my fiance who loves ds like he was his own and accepts his "odd" ways and is very supportive to me....it is much easier with support.

While i am on here can i just ask if anyone else has problems getting food into their kids? I have terrible probs with ds and have not found a solution yet:rolleyes:

Snaggles

D&DD wrote: »

so this always makes me feel quite down on myself thinking if I was Miss Pushy he'd get more help and I'm failing him as a Mum..

Exactly how I feel......BUT.....just from your posts on here, I can tell you with pretty much 100% certainty that you are not failing him as a Mum. You come across as compassionate and caring, which is exactly what our lovely kids need.

D&DD

kylieM wrote: »

I feel incredibly sad reading your posts.

I personally do not feel mainstream school is the right place for the children to go. Sam goes to a fabulous special school, the staff there have done wonders for his behavior. (apart from his naked runs). Mainstream teachers are not properly trained to deal with it. I am sure it is quite difficult to understand them, when they have not been around it before.

Maybe you guys should look into a rest bite care. Sam goes every Sunday, It gives my mum a bit of a break and he loves going, they take him to the cinema (he never behaves when we take him lol) for walks along Brighton pier, Lunch to MacDonald's and Pizza hut (his favorite place).

:rotfl: Naked runs.. yup we still have them..was quite endearing when he was a toddler but gets a tad embarrassing now he's 9 :eek: So pleased he's grown up in the same place and everyone knows him!!

I get 3 hrs respite a week (7 in school hols or more if needed)and we employ a wonderful young man he's only 17 but a wise head on young shoulders..Its worked out perfectly as his bro also has an ASD and is the same age as DS3..He's a dear friend to us all and like a big brother to the other boys.
SS arranged ours through Direct Payments and a local centre runs all the payroll for us free of charge so I just sign a form once a month with his hours on..
Took me ages to agree to having it though,it was ony when DS2 got diagnosed with his back probs that I agreed ...grudgingly:o
It was talking to our Estate manager which convinced me actually it wasn't a bad thing to admit I needed a break bless her heart will always be grateful to her..

*edited to say thats council estate not lord of the manor estate lol I sounded dead posh then*