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Original poster

God what do I do with my poor DS?

474 replies

inappropriatelyemployed · 03/05/2013 15:45

He couldn't get to school at all today. He has only been going in for part of the day with me. He was wailing and crying about putting his uniform on and how he can't cope.

Where do we go from here? His third school. One period of HE already. School will do whatever they can but he can't cope and I worry I am damaging his mental health.

He finds it so hard to explain how he feels but he can';t cope with kids at school. We went to a special school to look around yesterday and he wouldn't look in the classes and got visibly stressed out at a glimpse of a child in a far off corridor.

What do you do?? CAMHS? HE? This can't go on.

OP posts:
PolterGoose · 09/05/2013 09:21

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StarlightMcKenzie · 09/05/2013 09:41

Thank you. I'll have a look at that.

TBH, I think MN has been the most effective therapy. I don't really feel trapped, helpless or like I have many problems. Burdens, yes, perhaps but I have always been able to figure out ways of relieving them to an extent, but I think I'm just so tired of THINKING.

DH would give me a week off to the moon if I asked and he would be fine with the children (though I'd come back to chaos), so really I'm not sure I have very much to complain about.

Perhaps I'm just so tired of being the one who decides everything. Where to live, what school what solicitor, where the cups go in the new house, what's for dinner, what after school activities, what paint, where to go on holiday and when, what the kids wear. I even decide when dh should buy me flowers or whether we should go out and then I book the babysitter.

But you know, DH has HAD to be a supportive passanger. It wouldn't have worked over the last two years if he hadn't been.

Original poster
inappropriatelyemployed · 09/05/2013 09:49

"Perhaps I'm just so tired of being the one who decides everything."

I understand this. DS will do whatever he is asked to but he won't think of the things that need doing and do them for himself. So we would never have a holiday, christmas, go anywhere, do anything, if I wasn't thinking and planning for all that as well as dealing with DS and school, LA etc.

It is exhausting.

OP posts:
Original poster
inappropriatelyemployed · 09/05/2013 09:49

That should be "DH will do what he is asked to"

OP posts:
PolterGoose · 09/05/2013 09:51

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DailyNameChanger · 09/05/2013 09:56

Hi Star, sounds like you need to find a tiny bit of time to rebuild yourself. I have been through simultaneous bereavement and diagnosis and currently going through the joy of statutory assessment and hopefully a move to special school. I have done so much hanging in there over the last year and my general well being definitely shot to bits. I also have a lovely cyst on my hand which I think is caused by holding the ipad and obsessively reading about autism, SN law etc! I am the kind of person who does thrive in a crisis and falls to bits later on so I am trying to pre-empt this a bit. I am getting very pissy over trivial day to day stuff which is a sign I think that I am affected by all of this. Running really helped me last year, mentally and physically and that all went out the window for a bit but I am starting up again now. Helps with how you feel about how you look too. Any interest really, that is not about SN and fighting the system! :-)

justaboutalittlefrazzled · 09/05/2013 10:12

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Badvoc · 09/05/2013 10:14

Oh star -sorry but you just really made me laugh!
Disagreeing with professionals? Check
Paranoia - check
That's what wrong with me!
I have a personality disorder!
:)
My dh is the same and sometimes I resent it tbh.
I resent the fact that the last 10 years of his life have nit been totally governed by ds1 and his issues.
And that isn't fair.

zzzzz · 09/05/2013 10:23

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ouryve · 09/05/2013 10:52

My lovely DH is the same, too. Seems to be a common thread!

He was the same when we first got together, though. Totally indecisive. He's never been very confident with all the SN stuff and even when I've bought a book on a particularly topic that I've considered an easy read he's said it all goes straight over his head because he doesn't understand all the language.

He is beginning to find his voice at appointments, though and he will be attending AR for the first time, this year, after doing a couple of school visits with me.

ouryve · 09/05/2013 10:55

Practical advice re: iPad - thick cushion on lap! I can't actually hold mine for more than a few minutes at a time because it bends my fingers too much and hurts them. I've tried and failed to find a case with a sturdy stand like the one I have for my kindle, but they don't seem to exist.

streakybacon · 09/05/2013 11:37

This has moved on a lot since I was last here Shock but it's a very useful thread, I think. It shows how much we have to deal with as well as our children's needs - that's something that's always hacked me off when professionals expect us to do so much for ourselves without their input, like we've got nothing else to keep us busy Sad.

I've been frowned upon for not appealing the decision not to carry out statutory assessment on ds just after he was deregistered. Well yes, it was the ideal time and the right thing to do, but as my elderly mum's primary carer I had to facilitate her move into sheltered housing, I had ds bouncing off the walls after the crap he endured in school, and the LA casually threatening me with a child protection enquiry for having the audacity to deregister him and know more about the law than they did. And much much more besides. I think people forget that all the rubbish that happens to others' lives also happens in ours - we just have children with disabilities as well.

It's sad to read that so many of us have suffered bereavements while caring for our children. It can be difficult to get the time to grieve properly and that can have a lasting effect. I'm sorry for all your losses - I lost my mum and sister in the space of a year, both suddenly and no chance to say goodbye, yet we've still got to pull ourselves together and battle on for our kids. There just isn't a choice, is there?

Husbands seem to have the same universal characteristics in the SN world! How many of yours are accepting of diagnoses and difficulties? It seems quite common for men to shy away from the fact of their children being less than perfect. DH doesn't handle it well (yes, I've had to make all the decisions here, too, and persuade him to agree Sad) but he does accept that I've never been wrong yet. Even so, he still thinks that ds is 'normal' and is blinded by how well he presents during the good times, and gets cross and impatient when ds doesn't live up to expectations. Like someone commented upthread, he seems to think that as long as he looks ok then he is, but he forgets about all the crap that goes on inside ds's head and how badly he functions. It's tough to handle at times Sad.

Original poster
inappropriatelyemployed · 09/05/2013 14:35

I have kind of the opposite problem in that my parents died before I was 30 and so never saw my kids. This has left me looking after a profoundly disabled brother who has cerebral palsy.

So, when people moan that their kids books aren't being changed frequently enough in school [grrrrr]

OP posts:
justaboutalittlefrazzled · 09/05/2013 14:42

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dev9aug · 09/05/2013 14:47

Useless husbands huh...

Walks in,
Picks up Halo,
Walks out....Grin

StarlightMcKenzie · 09/05/2013 14:50

LOL

No. DH definately isn't useless. But some times there just isn't the room or the time for two decision-makers and now it seems DH has given up entirely.

Though to be fair he did decide and then buy matt paint for the kids bedroom walls and I asked him what exactly he was thinking Grin

ouryve · 09/05/2013 14:54

DH is accepting of the boys' diagnosis, and recognises some of their difficulties in himself but he does sometimes teem with resentment that we have to do certain things in a certain way with them. I had to warn him that there was no point in him getting cross with DS2 for his screeching, before he even had chance to let it get to him, last night - because there's been times when I've had DS2 screeching, DS1 ranting and DH moaning at the pair of them. I usually go in the kitchen and shut the door on the lot of them, at this point :o

Just as I do with DS1, I often have to have the conversation with DH, pointing out that he can't keep doing things the same way and expecting a different result. I also have to frequently coach him in empathy, since it simply doesn't come naturally to him, especially when he's tired or stressed. I never thought I would ever be doing that with anyone, since I'm not totally free of the familial spectrummy phenotype, myself!

dev9aug · 09/05/2013 15:06

Sorry, I just said useless in jest...wasn't entirely serious.

Though reading this thread has made me realise school is probably not going to be the right place for ds1. Personally we don't like to give up control which is why he has never been to nursery or any other setting. I will find it really hard to give up that control when it's time for him to attend school. We even sit in all of his ABA sessions when we could have that as free time, how sad is that.

Badvoc · 09/05/2013 15:11

Dev..it's not sad.
I felt that way and buried those feelings under immense pressure from my dh and family and it had disastrous consequences for ds :(
So, go with your gut.

zzzzz · 09/05/2013 15:13

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StarlightMcKenzie · 09/05/2013 15:16

You know what? I want to homeschool.

But dd would be devestated at the prospect and DS would be fine but I'm so tired atm I need the childcare that school provides.

zzzzz · 09/05/2013 15:17

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Badvoc · 09/05/2013 15:21

Star...home schooling isn't going anywhere.
It's something you could re visit in the future when you have more energy/time.
It's is harder with a home schooler and a baby I must admit (ds2 was 14 months old when ds1 was home schooled)

zzzzz · 09/05/2013 15:25

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Badvoc · 09/05/2013 15:28

What do you mean zzzzz?
Who is saying home school everyone?