Please tell me i'll learn to cope better in time

[louismama]

Yes its me again, I cant think of anything else i've been back from england (live in spain currently) for a week first couple of days were ok having got some tlc from family etc. but one week back and here i am again in a total state about ds and what the futre holds. Have just read hand flapping thread Davros posted things to watch out for it might as well have been a description ds. Mom just phoned briefly to say results from sunderland inconclusive - possibly because ds had been gf for 2 weeks when i did the test. Will get the full report later. Can anyone reassure me that one day this will not be the only thing in my head? when i first became concerned about ds for 1min in the morning when i woke i wouldnt remember my worries now im dreaming about it all aswell. Weights just dropping off too. Should i stay off mn for a bit? I always thought informed was well armed but the more i read the more my head spins. Doesnt help that i cant talk to dh hes been really depressed lately(out of work) and only just getting back on his feet dont want to knock wind out of his sails, and i dont think it would help me to do that to him anyway. Ironic things keep happening too or do i just read too much into everything, physio said shes likely to pretty much discharge ds in the summer - physical development was only cause for concern a year ago. I gave a wry smile and thought to myself wouldnt it have great if that was it, youre free to go ds have a lovely childhood. Mom said photos id had done of ds had arrived lovely one of ds in builders hat and hammer(stupid photographer) all ds can pretend to do is sleep.This is a very self pitying post and i appologise there are alot of sn moms out therwe who have alot more to cope with than me; but i just needed to get a load off, feel sh*ty as ds was sat rocking and over balanced and smacked back of head AGAIN (hate bloody spanish marble floors)and guilty whenever im on here as i should be doing something constructive with him instead of plonking him in front of a video. I really wanted a bundle of kids but i dont think i can ever go through this again.

Ok stopped crying now. Todays questions for the panel. Is it worth getting a crancial tac done in spain if ds is suspected asd - would it show anthing?

Blossomhill if its not an incredibly rude thing to ask how much does BIBIC cost? Havent got alot of money but cant prove it i.e. income support etc. because were out of the country for a year.I so desperately want to come running back to u.k. for family support etc./ but at least here ds is getting SOME help whilst we wait for dx.

[louismama]

OH and hey fratantic han clapping is now interminglined with staring at hands! BUT on a positive note gl. stim. therapist said ds ismuch better for second time this week calmer and concentrating better so maybe g/f is doing some good.

[coppertop]

I know that for me personally the very worst stage was when I was going through the whole "is he/isn't he?" stage. Once I knew what I was dealing with and had a plan of action then emotionally it got a lot easier. Obviously the day-to-day difficulties that my 2 boys have are still there. It just felt good to know that (a) I wasn't being paranoid and (b) I could do something positive to help.

Scans wouldn't show whether or not your ds has ASD. Unfortunately there's no decisive scan or test that will say one way or the other. The best way to find out is via a full multi-disciplinary assessment.

I found that mumsnet was one of the best places to find support when I was going through the whole wondering stage (and since diagnosis too). Only you will know whether you will also find it helpful too. It has helped me a lot to know that others are going through similar things and it's been a lifesaver in giving me ideas about useful strategies to try. I guess the big question is whether you feel you would stop having concerns if you didn't come here? My guess is that you would still be worried but that you would just have no-one to 'talk' it through with.

I hope you'll stick around a bit longer though.

[louismama]

Yep youre right ct and mn has already been a great help but ill have to limit to when ds in bed and dh in bath then at least ill eliminate the guilt of neglecting ds. Just feel like its a race against time as hes changed so quickly Xmas i was chuffed he was walking and not many causes for concern then either. Thanks ct feel bit better already. xx

[coppertop]

At the start of the holidays I had plans to do so many things with both of my ds'es. On the first day I did some pretend play activities with them, a couple of speech games with ds2 and some language work with ds1. I was feeling really pleased with myself and sat down for a minute to watch the news. As soon as the little monkeys saw the TV was on they practically dived on the floor to watch and that was the end of that. After that I pretty much gave up attempting 'proper' stuff and just went with the flow. They seemed to enjoy that far more than anything I could plan. Tbh I think they got far more out of it too.

[delllie]

During my DD's first year I was pretty much consumed by her problems, I was convinced from surfing the internet that she had Rett syndrome, I was very scared and too scared to 'confide' in anyone incase they agreed with me. I remember her first year as being a very bleak time which makes me incredibly sad. At the beginning of her 2nd year she had hoardes of tests and I remember not being able to breathe somedays with anxiety about the results and indeed the future. All the tests came back clear (the geneticist didn't even want to test DD for Rett syndrome and completely ruled it out!!!) and we have no firm diagnoses at the moment apart from Global development delay.
DD is now 3 and I do feel that I have accepted her problems now, it has helped that she has made tremendous progress, more than we had ever hoped for really, but I still have bad days, but they are generally just a bad day or so rather than all the time.
I know how you feel about not having anymore kids, I would have wanted a football team preDD, but the idea doesn't seem so good anymore!!!!

[louismama]

Mom just phoned back S.A.L.T. assesment came straight through next fri I cant do it Ive only been back a week so will have to ask for another appointment h.v. said would be assessed at c.d.c. i thought it would be lots of assessments with different people over a few days but this was for 1 1/2hr home assessment. Can you enlighten me a little as to the dx process at this stage CT?

[louismama]

thanks dellie, Im sure I will learn to adapt in time its just on those bad days its hard to imagine ever feeling at peace or just ok again. PMA needed will try harder.

[Davros]

Suggest you also speak to the NAS helpline.