Why does it have to be so hard..

[deeeja]

Yesterday my dh was saying that ds(asd) had made some progress and was saying some words. I agreed and in or excitement we started to talk about how ds might be ok in a mainstream school, and as an adult may eventually almost catch up with others in his 20's, and live a normal adlt life.
Happily I started to plan his life in my head.
But today, ds is back to screaming, no eye-contact, babbling to himself, not responding, in his own world again. He has disappeared again. I could see dh looking at him, with the pained expresion, that I haven't seen for a few weeks. I tried to comfort him, but now I feel quite sad about everything.
Why do I do this?
Why do I kid myself and start making fantasy plans?
I could kick myself sometimes! I really need to wake up. I have two sons already on the spectrum. One extremely high functioning, doing very well. The other is ds3, 3 years in a few weeks, and although he has a not to sever ados result has adaptive skills ranging from 9months to 1year, and has poor cognitive skills. I worry about him the most. Then there is ds2 who I suspect could also be on the spectrum but has some strange symptoms, including what appears to be hallucinations.
Just feel so weighed down about it all.
Dh has taken half-term week off, which is great because I need the help, but sad, because he can see what the boys are like together.
Sorry, I know most have worse problems than me, I don't know how you all cope with it, expecially NMC.
It just makes me mad tha the help we need is os hard to get. I am sick of being accused of causing my ds' problems, of not being believed, of fighting for the smallest thing.
But I am all my boys have. I feel terrible for not being stronger. I should be able to cope with it all. I wish someone could teach me how to cope with everything!
Thanks for reading this if you got this far.
I really should pull myself together.

Deeeja - it's not surprising you feel like that - I often feel down when I think about my Ds2's future. I worry that I am not doing enough to help him and then sometimes I worry that I am helping too much and I will just get him to a point where he is not bad enough to be entitled to support but really struggling without it. It must be 10x harder when you have more than one child with special needs and you want to do your best for all of them.

My Dh always points out to me that you don't know what the future holds for any child and we no more know what will happen with NT Ds1 than Ds2, so it better not to worry about it.

I don't think you should "pull yourself together". I think you are doing very well to cope at all and it is a real burden to think how much they need you all.

Sorry I don't think this is very helpful but I didn't want to ignore your post.

deeeeja
I worry myself sick about dd and sometimes I think well, her life expectnacy is about 30 so I'll be in my 60's so we can pop off together. A parent shouldn't have to think that
Her consulatnt doesn't think she will get to 18 though.
My son with Aspergers should be alright though as he's coping better now he's 14. At 7 he was shrieking, under tables, frightenend of noise/lights/dogs and hand flapping like mad. I didn't think he'd ever change.
You are coping, even if you think you're not. After all, you haven't run off to sea with a handsome sailor yet!
But yeah, the constant battles are so very wearing and norms don't understand. Least with dd I don't have anyone questioning the diagnosis. And she managed her status seizure last week in the GP's surgery and kept on going all the way to the hozzie. Quite often it stops before the ambulance arrives leaving me saying 'ummm, Munchousens by proxy anyone?'
Wish we could meet up.

I think your feelings are perfectly normal. Having an SN child is such a roller coaster with more highs and lows than with a 'normal' child. Every time DS1 does something that signifies progress, I can feel myself charting out a new future for him then when there is a period of stagnation, I feel it all slipping away again. In reality there is only this day and this moment and it is pointless to have dreams or nightmares about a future that might never come. In a strange way, it is almost liberating to realise that I cannot control the future and that I cannot make plans.

I think your feelings are perfectly normal. Having an SN child is such a roller coaster with more highs and lows than with a 'normal' child. Every time DS1 does something that signifies progress, I can feel myself charting out a new future for him then when there is a period of stagnation, I feel it all slipping away again. In reality there is only this day and this moment and it is pointless to have dreams or nightmares about a future that might never come. In a strange way, it is almost liberating to realise that I cannot control the future and that I cannot make plans.

PipinJo - no, no not at all - sorry if I gave the impression I was a bit annoyed - not in the slightest .

Hi deeja, i think it normal to do this even if your child doesn't have SN. It just makes it 100 times more stressful! My oldest had a bright future ahead of her; got 9 a levels and the last 3 years have dragged her down ,she has just been diagnosed with bi polar, My vision has gone from for her of a great future at uni training to be a teacher to just be being grateful she isn't threating to top herself again. I'm sure she'll succeed in life, it will just make any success more of a celabration. The youngest is 3 has a yet undiagnosed syndrome , my vision of her future goes from supported housing to independent living.
I can believe that you cope with three children who all have their own individual needs. Its not about pulling yourself together , if i had a pound for everyone who has said that to my eldest! You are coping by the sounds of it extremely well, and some days thats all i do is cope. and god bless forums like this. Can you imagine how isolated we all feel if we couldn't ramble on like this!
hugs to you
mrsreeves