If i don't do it...who will!!

[genieinabottle]

Have had a mighty argument with DH
He says i let the school issues take over my life now, just like i used to let the dx process take over before.

OK, i admit i'm a stress head at times , but it's easy for him to say that. If i don't worry and push for the school issues to be sorted, who will?
DH won't do it. He supports me, but leaves all the 'dirty' work up to me and then blames me for getting stressed.

I hate DS's communication book, i hate reading it and writing in it, but if i don't do it, nobody else will.
I hate the prospect of next month, EP and SALT meetings, Parents'evening, Parent Partnership getting involved. It's scaring me.

I hate bloody ASD and what it has done to my life. I'm constantly worried over one thing then the next. It's endless and i'm turning into a miserable cow.

Sorry for this post ladies. I know some of you have much more to deal with than i do. But i just wish things could be simple with DS like they are simple with DD.

I want the old me back, but she is long gone.
Is it just me like this?

No,you are not the only one. I hate bloody ASD and what it has done to my life too. I am always losing it with DH because I know deep down I can not shake off the feeling that DS's asd has come from DH's side of the family. I know it's unfair, unreasonable and pathetic, so I would never say that to him as it will kill him, but every now and then the thought pops into my head and it makes me angry. It's the constant worry that gets to me too, staying up at night sometimes as unable to fall asleep. I am worried that DS's speech has stayed the same level as it was when he was 3 and half, I am worried about his future. All I ever do is read about ASD and books on ASD, I have lost so many friends as I don't want to share DS's issues with them and therefore don't see them. But I am determined to do everything I possibly can to help my DS overcome his difficulties and if that means fighting against the world.

You do what you are doing because you love your DS, it is taking over your life because you want the best for your DS. But I too feel so desparate to have it simple like the way it is with DD.

My ex says I get too stressed over all the Statementy stuff. He reckons I shouldn't worry because the LA always give in in the end. I keep pointing out that that happens precisely because I do all the stressing and complaining,but he doesn't see that! I have offered to let him take over the paperwork for a year and see how he likes it.

FFS. You need to tell your DH that it isn't about you, or him. You absolutely agree that school issues shouldn't be your life.

In fact it isn't your life, it is your ds' life and until you can hand over the responsibility to the people who are PAID to deal with it and know he is safe you will not be doing.

YOu need support, not criticism. He is a grown man who can quite frankly take care of his own needs. Your ds is a vulnerable child and your investment in him now will mean you and your dh have a better and more positive future, with less regularly broken windows, damaged furniture, police visits etc etc.

All I can say is that after a year of constant stress and battling for my 2, I am finally really really happy with the provision we have in place, and my stress levels are now at the 'normal Mummy' level.

There is every reason to think that you will get through this and you will get adequate provision for your child (depending I guess on your defn of 'adequate')

But, yes, my DH leaves it all up to me, and wishes I wouldn't get so stressed about it. Whatever, I don't trust him to do it properly anwyay [control freak grin emoticon]. I mean for starters, DH would never spend the hours on MN that I have :)

I think it's a DH thing in a lot of cases. Similar situation here. If i look back to before we had kids, the signs were there. He has the big idea - i micro manage everything.
I am of the opinion that if i want a job doing properly - do it myself. We took the boys out on a day trip and he forgot to put shoes on DS3 and had not packed anything relevant - so the bulk of the day was spent finding new shoes and a restaurant that could cope with their food issues - what a waste of a day!
Like Star says - input now = better outcomes later. You didn't ask for this way of life - it was given to you.
He should be proud of you for taking on the responsibility and giving him an easier option - after all, shouldn't it be 50/50? [hgrin]

Thanks.
It helps to see it isn't just me.

I was up 'til late the other night, going trough posts here on MN, digging out and writing down relevant points, advice,...so i can use that info as arguments for our case when we meet EP.
Tedious work and sometimes depressing to read so many dc are let down, but it needed to be done so that when we meet EP, i can put my views accross and have some ammo to throw back when they try to fobb us off.

DH complained that i was on here (he was watching the telly), he thinks it's all just fun like chatting on MSN about what to wear for our party next weekend!
He just has no idea!! ...typical male!

I wish that's all i had to worry about...and then again i hardly ever go out these days.
Friends are not interested in hearing about SN. Although i'm getting better at 'forgeting' about it for a few hours on the rare occasion i do go out. But i think the damage has already been done with friends and they have moved on.

Never mind, i'm trying to meet up more often with my asd support group, but i must be jinxted (sp?) as each coffee morning always seem to fall on one of the 2 days i work.

I'm just glad for boards like MN.

I don't have much time to post genie but if its any consolation, I too have been utterly consumed by DD's ASD, whilst DH watches from the sidelines.

I'm quite new to all this really (two and a half years of reading/dx process) so I wonder if it will all become my "normality" and then I'll cope better?

Since dx I have been making a concerted effort to do some things for myself, as I have realised that if I don't look after myself I will collapse with the strain of it.

On DD's worst days a little voice inside me calls "you must save yourself!"

I know what you mean about your friends... so many of mine are becoming mere aquaintances.

It really isn't just you genie, I got to the point where I shouted at OH a few weeks ago that he had better back me up at Dd3's next appointment, usually he just sits there and says nothing. We had had a really bad few days with Dd3 and I was sooo sick of being the only one doing all the work with her and for her. He has been slightly better since but still isn't on board with the strategies I am using. Which is a shame because they work.
You are absolutely right in your title, you have to carry on for the sake of your Ds.

Ahhh, this thread makes me feel better. Every now and then I start getting cross because I do 99% of the worrying, all the medical, almost all the educational and 80% of the difficult ADLs. But it looks like that's just a mum thing & DH isn't uniquely laid-back.

Genie, I am just starting the asd dx process for my ds, he already has a dx for dyspraxia. Today I have been told what a great mum I am and how strong I am, by a almost complete stranger (a mum at ds's swimming class), because I am a single mum doing everything for my son.

But you know what, I don't feel strong, I certainly don't feel as though I am coping. 4 weeks ago, I was almost suicidal, I was definitely having suicidal thoughts, the only thing that kept me from acting on them was that if I did, there would be nobody there to fight for my son, because nobody else is seeing his issues the way I do. I am getting support from the GP and from school both for my depression and for the issues I am having with ds, but as you say, the only reason for doing so is because if I dont, who will? And if I don't where will ds end up?

If he is ASD he is definitely HFA, with dyspraxia being the main dx and ASD being the secondary (well, that's how I suspect it will end up), but just because he is not severely ASD, that doesn't mean he doesn't have issues that don't need support, and there is only one person who will fight for those needs, so I have to survive, no matter how strong the lure of the road is (I mean to get in the car and drive away, not anything else - if anything I am now too numb to feel suicidal, though I am much better than I was at the end of last week).

Sorry genie, reading back I realise that just developed into a moan about my life. I think what I was trying to do was agree with you, but I'm not sure any more.

LRB978, i want to say things that would be helpful, but i can't find the right words.

I can imagine how difficult it must be for you. And even if you don't feel strong, i'm sure deep down you are stronger than you think.
As you said you know you have to keep on going, and you will.

Although i'm not having depression.
I can say i have had, and still have days, when i feel quite low and sad, i feel like running away from the problems and the worries. But like you because i love my DS and my other kids too of course, i try my best coping with everything.

My DS has also 2 dx. Autism and speech and language disorder. Like your DS he is on the HF of the spectrum, and as you said rightly HF doesn't mean no issues and no needs.
What it seems to mean for my DS anyway (i'm not generalising here) is the fact that i have more of a fight on my hands to get these needs recognised and met.

Sending you a big hug. And positive good luck vibes for the dx process.

In all honesty genie, I am slowly working through grieving and acceptance, and all I really need is people to listen to me and places to vent. My mum doesnt believe in depression (should just pull myself together) and feels ds is just a normal boy (that's why he has already had 10 sessions 1-1 OT, and probably more to come, it just gets handed out on a plate to all-comers, obviously [sarcastic emoticon]).

But I spent 30 minutes in the doctors Thursday night, after clinic had finished, crying and talking, spent another 30 mins doing the same with the SENCO Friday morning, following that I spent another hour doing the same with the SEN governor (who it turns out has a ds a year younger than my ds, with identical issues by the sounds of it), and then another hour Friday evening talking to our kickboxing instructor. After spending an hour on the mats training, I then felt a lot more at peace with myself, although I seem to be every so slowly sinking again.

As a result of all that talking and crying, my doctor (who had already told me to go in if I needed to, even if I just needed to talk, god bless him) is looking into respite and group activities for me, school have already put me forward for a family support worker, and the SEN governor gave me information on a drop in group held once a month for parents of children with SN, and is also passing my name on to a volunteer group who will set a buddy up for my ds and take him out for a couple of hours a week. So I am taking what help I can, from where-ever it is offered, I just need time to get myself back together.

And you are right, I am strong, I have to be, but I don't feel it at the moment. I used to cope, now I am surviving on a good day, existing on a bad, but tomorrow will come, tomorrow will be better, and who knows, I may even get to the point where I cope on a bad day and actually live on a good day. (By tomorrow, I mean a day in the future. Probably not the day after today, but one tomorrow.)

(As for dx's, if ds was fully dx'd, I suspect he would have are more than 2, but his sensory issues have been dealt with as part of his dyspraxia, rather than as a separate SPD label and I feel language issues will probably fit under the ASD label (if he gets it) and so on.)

But enough. I may have it hard(ish - I certainly have it a lot better than people like Riven. I take my hat off to her and the many others on this board who deal with so much more than me day in and day out), but I tell you, I would have had it so much harder if I was still with my ex, it may be lousy being single, but at least I have my money, a roof over our heads and my independence, none of which I suspect would have been the case had he still been on the scene in any greater capacity than that you would expect from distant uncle (you know the sort you see when they have nowt better to do).

And hugs to everyone on this thread. We all deserve it, and I bet none of us get enough of them

And there goes another vent . Oh well, better out than in.