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the Future

28 replies

mytwopenceworth · 18/07/2006 16:34

what does it hold? what will my boys be like? will they function 'normally' or will they need carers? will they behave strangely and will people look at them and think they are nutters? i cant protect them from that can i?

i worry about this stuff. i wish they stay little for ever so i can guard them and act as their 'buffer'. its a mean world out there.

OP posts:
lourobert · 18/07/2006 16:41

I know exactly how you feel there......! Bethron on MN once said to me "I wouldnt chnage my son for the world but Id change the world for my son"......how true. My son has recently been diagnosed with Williams Syndrome and he also has Infantile spasms. I went to meet with other kids and adults with WS on Sunday and it broke my heart hearing all the adults talk about how they are picked on....I just wanted to cry. Im scared, really scared for my little boy.

I find myself wishing my 9 month old sons life away just to have a glimpse how how things will be. I try not to think about it too much but,for me, thats harder said than done.

Thomcat · 18/07/2006 16:42

oh mate.
I hate going to the future, in fact I don't go there.
You can't possibly know and everytime you try and imagine it's full of worry and danger and too scary a place.
My barriers come up and I can physically feel the wall in front of me.

I wish I could freeze time for Lottie too. It's so easy, relatively speaking, when they are little.

I just try and be as positive as possible and don't go too far forward as worrying never helped anyone. You can plan for certain events etc but fastforwarding to 20 years time and worrying - it's not worth the heartaqche it bring imo.

Love to you - TC

dinosaur · 18/07/2006 16:45

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FioFio · 18/07/2006 16:47

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CristinaTheAstonishing · 18/07/2006 16:52

I totally relate to "I find myself wishing my 9 month old sons life away just to have a glimpse how how things will be." I wish i'd known then how things are now and that, really, life is OK. IME it gets easier with time as you get on with the day-to-day stuff.

Thomcat · 18/07/2006 16:54

I think planning fiances is sensible though. I should be doing that. I dream of FIL leaving us his house (over his 2 older children - unlikely) . His house is v big but best thing is it has seperate cottage attached to it, door in kitchen of main house leads to lounge of the cottage. Wpuld be ideal as Lottie could live independantly but kind of still live with us.

I worry that she'll never walk, or walk in very srtange way.
Worry she'll get picked on.
Worried that DP and I will split up and I'll have to cope with her as a teenager on my own.

ohhh, no, can't go on. Just glasnced at her pic I keep on my desk and barriers have gone up.

LadyTamba · 18/07/2006 16:57

((( Hugs )))

dinosaur · 18/07/2006 16:58

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maddiemostmerry · 18/07/2006 16:59

I was at my local cinema the other day which employs many local people with sn. The man who showed us to our seats struggled a bit with reading the tickets and got confused and put people in the wrong seats. He managed to self correct but one of the party behind us(girls aged around ten) stood there huffing and puffing and barked "About time" at the guy. He also had a physical disability and found steps difficult, a group of teenage girls were laughing at him.
Is this really what the future holds, even for those able enough to get jobs?
We are such a shallow society

FioFio · 18/07/2006 17:09

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FioFio · 18/07/2006 17:10

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anniebear · 18/07/2006 17:17

I have never mentioned periods on here as I thought everyone would be like "what!! shes only 5"!!!

So I am glad Im not the only one!!

But I do worry about it still. Teeth falling out are my main concern at the mo, but then I think Periods!!! Oh good grief!!!!!

FioFio · 18/07/2006 17:24

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dinosaur · 18/07/2006 17:27

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FioFio · 18/07/2006 17:28

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2shoes · 18/07/2006 17:34

anniebear please don't go there
dd is 11 and things are starting to "change"

the other day my db asked me what will happen with dd when she leaves school............
i can't even go there

Dingle · 18/07/2006 17:51

I'm not looking that far ahead. I can't...or won't. Not yet, it's just taking one step at a time I suppose...ATM it's the huge step of statementing still!

In my own small way we look forward to the future...but not that far. We have thought about the house and the need for the extension. A downstairs loo would be like heaven..but that's now. We strip her down to her knickers and do her sensory program downstairs in the front room - that's OK for a 4 yr old but what about when she is older!LOL!

I think I have to shut out worrying about her future - I would explode otherwise.

fattiemumma · 18/07/2006 19:14

oh dear i cant read anymore!

"I wouldnt chnage my son for the world but Id change the world for my son"......

that has just made me fill up.

soo true!

charleypopspreviouslyntt · 18/07/2006 21:12

Fio, anniebear, 2shoes, if periods prove to be a problem then I believe the gp would do a contraceptive jab.

Funnily enough I was having this very conversation (about the future) with some mums this morning at our cdc, we got goosepimples talking about it, we are all worried. However, I do think the future looks good for people with SN, I mean if you look at people with sn of our generation, there wasn't half as much understanding and therapies available - autism was barely heard of, same with dyslexia, attention deficit, aspergers, dyspraxia etc etc, and now it's picked up at such an early age and most of us can get early intervention for our kids. My cousin who has Down's Syndrome is almost 40 and he wasn't given any of the help my son is getting now. And the generation before that My goodness, doesn't bear thinking about...

If Cameron gets in then I can't see that he would ignore this situation (the uncertainty and worry), but even if he doesn't surely us mums and dads are going to DEMAND our children are properly looked after when they're older. My HV was telling me she recently went to a lecture where some professor was saying there has been a real rise in the incidence of congenital problems leading to SNs, mainly due to the increasing survival rates of preemies (remember the "bed blockers" debacle?), so surely the pressure to do something about it will be immense.

Presently it seems to me that there's loads of support out there for the little ones, but it suddenly drops off when they've reached school or home-leaving age, then suddenly no one wants to know. There must be solutions to this, ie maybe there should be some kind of government endorsed scheme where we can pay some money into a special investment account for our little ones' future so they can pay for an assistant or pay for some kind of supported accommodation.

What do other countries do? Switzerland or Germany for instance (aren't they supposed to be very progressive? and good with SNs?)

mytwopenceworth · 18/07/2006 21:25

my dh thinks im bonkers to look ahead and get upset, and he's right, its not logical to get upset about things that havent happened yet, but i cant help it. i worry about everything like what if someone abused them, what if they can never live independently. what if they never find someone to love them. and other people can be vile, sneering and laughing. they dont notice and part of me hopes they never get to the stage where they realise they are different or understand that people are being cruel, but on the other hand that would mean they would have to not develop and then theyd have no chance of any independent life.

OP posts:
splinter · 18/07/2006 21:35

Reading these posts I have the same concerns about ds2 with sn but wanted to share a positive story.
I have cousin in his mid 30's who, as a child was classed as severly Autistic, he had severe learning difficulties was non verbal & very disabled his parents were told he would need constant care for life.
They made the difficult decision to send him to residential school, they concentrated on communication & life skills rather than academic studies. He thrived went on to a supported college course & now has a paid job on equal terms with the others employed alongside him.
He works in a nursery, has his routine (including going for a pint) but has very definately found his niche & is a tax paying member of society.
He will continue to need support & lives in a supported housing environment he stil has limited speech but communicates well & is a pleasure to spend time with & makes us all proud.
I am sure he does face prejudice from the ignorant few, but for the most part is a happy healthy man enjoying life!

matnanplus · 18/07/2006 22:15

I have 2 foster sisters with Downs and when my mum died in 2004 they had toleave the only home and family they had known, C is non verbal had ASD and OCD tendencies and has had some teething issues in group home mainly due to lack of routine, staff changing, lack of consequence but she has settled and is happy. E is brighter and in another family situation and has had the opertunity to learn to drive a quad bike, a tractor, rear pigs and chickens and is very settled. Both continued in their established dayplacements and tho i'm sad at the personal distance it has been neccessary to put into place for this to happen, they are thriving.

Please don't look into the future, it is unclear were it will go for NT or SN.

Look after and enjoy today , tomorrow will be here soon enough.

Worry and angst won't change the future just colour the present.

matnanplus · 18/07/2006 22:21

I'm not dismissing your concerns, but we had very little time from my mum's diagnosis of Ca in July to her death in Feb, i cared for her and our girls from Dec and it was hard knowing that they would need to move on,believe me that family den]bates as to the thought of me taking over fulltime were long and deep but my mum's view was that we as a family had given them a secure and loving enviroment and had nutured them for 30 and 24 yrs and that they would have to leave home at some point and right or wrong we decided better one change than several.

redbull · 18/07/2006 22:33

it gets me really down,scared,physicaly sick,worried and aprehensive thinking about the future i cant think about it for to long as i suffer from depression gp reckons ds diagnosis brought it on also with panic attacks thinking about the future i actually make my sick from it

It makes it worse when like today my mom said to me that ds will be fine when hes a teenager he will talk and yes have a bit of a problem but nothing to worrying it angers me as i feel they dont fully understand what ds can be and is like

I wish i could buy a special shrinking spray and spray ds with it so he will allways be 5,allways have to live with us and then i can watch his evry move and protect him forever

MadamePlatypus · 18/07/2006 23:31

"I wouldnt chnage my son for the world but Id change the world for my son"

But you are changing the world a bit! When you post on MN you make other people who never come across SN issues in their day to day lives (like me) THINK.

Sorry, just lurking, but felt I had to post.