Welcome to Beruit

[Jimjams]

I'm so impressed with welcome to Beruit (thanks Davros and hmb) that I'm posting it \linkhome.earthlink.net/~abaantonia/beirut.htm \here{}

Far more accurate for me than welcome to bloody Holland

here

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thats a bit heavy going jimjams. Can really relate to the first bit though about thinking evrything is alright but being dragged, people kicking.

I rememeber when dd started having problems, she has always had then really but they became more apparent when she wasnt crawling and then walking. I remember the appointments and therapists comments. Feeling physically sick at what they were saying and feeling like someone had took out my insides, screwed them up and then shoved them back in again. I felt like that for ages, still do sometimes. Maybe I shouldnt admit this!!

sounds totally normal to be fio2-in fact that's a very good description I would say. Don't be embarrassed to admit it. A room full of normal kids still makes me feel like that.

I suspect that feeling does lessen, but I doubt it ever goes away completely hey ho

The last paragraph is more uplifting though. And this line "You will marvel at typical development and realize how amazing it is" is true enough I think. I ceetianly find myself gawping at ds2.

I also really identify with the whole normal couple of years. Thinking back to ds1's babyood makes me feel sick if I think about because of the whole "innocence" and not knowing what was waiting round the corner.

The Italy to holland story was a great help to me a one point and kind of had a calming effect and it was the first thing I'd read since having Lottie that i could really relate to.

I can understand how it wouldn't have the same effect on you JimJams. if only huh!
I wish you were in holland with me, or italy even with others.

Thanks for posting that on here.

I hope your lulls, as written below, are large

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal

TC- it's my son that I would like to be in Italy. I don't really care where I am- and autism has had a positive effect on me- as described in the passage.

But it has destroyed his life, and it completely limits what he can do and what he will do, and prevents him doing what he wants to do.

Does that make sense? I can never be in Holland when my son is made so frustrated by his condition

Oh God, I didn't mean for you to be in Holland or Italy or anywhere without your son, I was talling about the whole situaltion, you, your son, the whole thing. I was saying I wish that none of you were in Beirut. You were linked to your son when I was saying I wish you didn't have to be there.

Of course I understand, as much as I can from an outsiders point of view, the effect it has on him as a person and how it limits his life and how frustrated he ,must be. I was just offering you support and understanding, mother to mother.

Thanks for sharing this Jimjams - agree it's more appropriate and powerful than the Holland story, but oh so bleak Even with our relatively mild, but still lifelong, problem of Aspergers in ds1 I look back to the 'innocent' days when we thought he was just a lively little boy, and it makes me feel sick too.
Feeling very sad today anyway - just learnt a friend has lost her first baby at 24 weeks - life's a bitch..
But there are lulls..

I think if I try and answer it will get very confusing..... And we'll all end up in Paris or something.

I have very mixed feelings about all of these. One of my other favourites is www.autistics.org/library/dontmourn.html\Don't mourn for us{} which is far more in the Holland mode. But I think I could only truly stop mourning if my son was high functioning enough to do what he wanted to do- whatever that was- and however autistic it was. But whilst things like the sound of the shower are so overwhelming for him that he falls to the floor (literally had to tell him to get up 5 times this morning) and while people sitting in their car doing the crossword will produce half an hour of screaming, and whilst he has to scream and scream to get me to understand that he wants his toy car- I can't stop mourning or move on from Beruit.

I don't want you to think that I'm saying autism (or any other diability) is a bad thing in itself- its only bad when it makes the affected person miserable a lot of the time. Which is the case for my son.

I think Welcome to Holland can be useful for the newly diagnosed- better than the bloody awful "lifelong condition" mentioned in Beruit (which we must have heard 5 times form 5 different pros). I HATE that phrase for something that's diagnosed at 2/3 becuase you automatically think the rest of your child's life is going to to be about poo smearing and screaming, and not realise that it will get better. Luckily I had joined support groups before diagnosis- otherwise I think that would have floored me and removed any hope at all.

24 weeks Poor woman

sorry don't mourn for us I'm not good at links today.

jmb1964 that is so sad

jimjams glad what I said made sense, sometimes I think its just me and I am too deep or too emotional or both! I am depressed today aswell so unsure whther I should post my feelings, you know how it is. My Gran is coming in a bit though, it her birthday, I can have a drink and forget about things for a while.

Newly diagnosed sigh if only we could even get to that stage

the second poem was good though jimjams! >whispers...I do actually like the holland poem aswell though!!

that's ok fio- you're just not as bitter and twisted as me

I think what you said would make sense to anyone with a child with problems.

Hope you feel better soon.

well I told my mum how I felt and she said thats how she always felt about my sister, and boy she had alot to deal with. But when its a member of your family saying yes your normal you dont beleive them iykwim

I told my HV a couple of weeks ago that I dreaded going to appointments and then worried for days that SS were going to knock on the door!!

I do feel bitter, but just try not to. I often think why me? I have lived my whole life with illness and disabilities round me and I had genetic counselling before having children to make sure about the CF. I think I naively thought everything would be perfect, just like the 'dont mourn for us' poem!!

am really going to shut up now!!!

It's not naive- everyone assumes they will have a "normal" kid. After all we're surrounded by enough images of them......

I loathe and detest all appointments. I hate all the reports. I love not having a single report on ds2, and I love not knowing what "age" he is in his milestones.

I worry about SS with the amount of screaming going on, and if people see me walking down the street holding ds1 by his neck (! well hood- safest way to do it).

Your reaction sounds very very normal to me fio2.

I have read Beirut before and found myself very grateful for being in Holland!! My SIL has a blind teenager and a 10 year old with Aspergers so I'm not sure the place she's at is even on this planet. My dd's condition whilst being 'lifelong' (hate that too) and probably life limiting isn't traumatic on a daily basis. She's 10 now but the appointments/tests etc still get to me. Got one next week actually and the sick feeling is steadily growing

jmb......so sorry about your friend hope she is getting some support.

awww thanks jimjams and agree with everything you say too. I am glad my ds seems ok, although he does seem a bit weird and slow in places, sometimes I think it is paranoia other times I think it is having dd and thinking too much. I know you know what I mean!!

Luckymum what is your dd's diagnosis if you dont mind me asking? Ignore me if you dont want to answer

Fio....she has congenital heart disease which was spectacularly misdiagnosed by our local hospital (you know the one!) and resulted in her having two heart attacks at 4 months and multiple organ failure. Its not 'fixable' although she has had open heart and will need more in future. She also has a leg length discrepancy.

Its nothing compared to some and having just read Lou33's other post I feel positively thankful tbh.

How are you doing with your madical notes saga?

That should be medical notes (or should it?)

Luckymum (())) I think i am very close to you and if you want to contact me do. I havent bloody got my notes yet!! feeling really sad, mixed and upset, its blinking hard.

glad your dd is okay atm though, that must have been such an ordeal (and now(()) )

sorry about all the sad in the last I get carried away!! I know all kids are lovely really!!!(?are they??

Fio, thanks for the offer.

Sorry that you're feeling it at the mo. Dd is 10 now and its so much easier now she's older, I don't get the blues like I used to mainly because she's far and away exceeded my (and their) expectations, e.g.in mainstream, no statement. So I only really have minor day-to-day worries, a lull as Thomcat put it.

I've read about your dd before, do you not have a dx? It is so hard when you seem to have to fight every step for the care and services they need and deserve (and even for the diagnosis). Hugs to you.

fio and jimjams, sorry you're feeling so down at the moment. Hugs from me. The Beirut thing is pretty heavy, but true.

There was a thread on here recently where someone's friend's dd had stopped talking normally, and it all sounded so worrying. It just brought back the whole overwhelming worry feeling I had when first waiting to see what was wrong with dd2, also a sort of stomach wrenching just like you describe fio, and it never seemed to go away. I feel like I've aged hugely over the last couple of years