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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

I feel like the worlds worst Mum for wishing it was different.

37 replies

Muddlewitch · 03/10/2011 13:22

I don't know where to start really.

DS1, who is 11, has always had quite extreme social and school issues, and is now thought to have Asperger's (which I have known for years.)

I have been looking for some support from local organisations and am reading through all the lovely people with children with Austism and Aspergers, doing such a great job. And they all say they wouldn't change the condition, wouldn't want their child to be any different.

I love my son to bits, I really, really do, but I don't feel like that. If I could change all this I would. In a heartbeat. I wish he didn't have the problems he has, and that every day wasn't so hard for him, for my other children, and for me. I fear for his future and am exhausted by 11 years of fighting for help. And I do wish he didn't have it. I'd give anything, in fact.

And it makes me feel like I failing him.

OP posts:

cory · 05/10/2011 22:51

Is this thread only about autism or about SN in general? If the former, I withdraw my last post as it probably isn't relevant.

BakeliteBelle · 06/10/2011 07:51

Please don't think we love our children less, because we find 'Welcome to Beirut' hits the spot (ASC or no ASC - there are common threads).

However, every day with a severely disabled child with challenging behaviour is a challenge, as I expect it is with any child who needs 24 hour monitoring, feeding, changing because they are doubly incontinent, who wakes up at 3am and/or who is violent and constantly - and I mean constantly, demanding.

Sometimes that challenge is too much and a bit of gallows humour can go a long way.

Rivenwithoutabingle · 06/10/2011 21:20

This reply has been deleted

Message withdrawn at poster's request.

LunarRose · 07/10/2011 13:04

Ahh you see the OP was talking about Aspergers and Autism....

Anything where a child is in considerable pain I think is very different

BakeliteBelle · 07/10/2011 14:15

What about severe autism with challenging behaviour? What about the mental pain that goes with some conditions? I don't think it's helpful to categorise - it is about how the disability, whatever it is, impacts on the life of the child and the family surely?

Rivenwithoutabingle · 07/10/2011 14:29

This reply has been deleted

Message withdrawn at poster's request.

droves · 07/10/2011 14:39

I shamelessly admit to wanting , wishing and praying that dd4`s autism & gdd & hypermobility & growth disorder disapears .

The same for they boys ds2 and ds3 .

Its never going to happen . The kids might improve as they get older , or learn to manage their conditions ... but i wish they didnt have the extra difficulties .

And i dont feel guilty for doing so . I love them ... i dont love their SN iykwim ?.

Jennylee · 11/10/2011 23:35

the Dr who diagnosed my son with aspergers, quoted Tony Attwood who I admire, but it was the phrase 'congratulations, you have Aspergers'. The amount of times when my son is upset as he cannot have any freedom, or when he is having a meltdown and threatening to kill himself and us, I have to think f*k you! congratulations? are you kidding me, this is a living nightmare and it keeps getting worse. I would make it all go away for him if I could he is 12 and all his peers are leaving him behind, he has no friends and cannot go out unsupervised, last week he got excluded from school this weekend he brandished a knife at us. why would anyone want to congratulate that.

onwardandupwards · 12/10/2011 23:57

my son is undergoing tests for PDA/ASD and ADHD. Would give every thing i have to be able to take him to the park or any where in fact. He gets angry and aggressive at the smallest thing,a 5 min wait for a go on the swings can result in a 3hr long tantrum,so i to would give anything for him not to have these problems and maybe one day be invited to a friends party or fingers crossed have one of his own.

droves · 13/10/2011 10:32

Onwards , once you are in the system you should be able to get some support and help with your son ... I have a asd dd and a ADHD stepson ...both had 3 hour tantrums , meltdowns . Utterly exhausting for everyone. Asd dd has sort of grown out of them , as her language and communication has improved ,she's less likely to melt. ADHD son does not have them now he's medicated.
It will get better , hang on in there .

Hope the dx goes ok and doesn't drag out too long.

droves · 13/10/2011 10:34

Tip for going to swings ....go really really early in morning before most children are there ...parks are usually empty at 8 am ! .

onwardandupwards · 13/10/2011 15:23

will try the park b4 school as my son is 6. the doctor asked me if i had tried a sticker chart (my face said it all) he just has a meltdown about everything, does not help that my daughter has kidney problems and chronic fatigue. Their dad wants nothing to do with them as he doesnt want to be a dad any more. just need some ideas for keeping him calm!

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