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mum only tries to help

(8 Posts)
my4delights Fri 04-Sep-09 19:44:40

my son is 11 months old and has downs syndrome. there are so many things i am still trying to get my head round. i try talking to my mum but she tells me i shouldnt worry so much and that she thinks the future will bve brighter than i expect. is life with a sn child ever bright? i really cant see a happy future at the moment. where has my life gone?

glitteryb6 Fri 04-Sep-09 20:20:33

i have to say my life is mostly bright, ds has quad dystonic cerebral palsy, non verbal, no head control, cant do a thing for himself and will always need support, but he is also the light of my life, the reason i get up every morning (even if i've had no sleep!), makes me laugh every day and has made me more aware of people with disabilities. so yes life with a sn child can be bright but it is also a state of mind i think, i've never known anything different to me he is just Evan and i love him to bits! smile

sorry if that sounds a bit cheesy! grin

glitteryb6 Fri 04-Sep-09 20:23:02

in my defence i have had wine as he's at his grans tonight! grin [hic]

anonandlikeit Fri 04-Sep-09 22:44:54

Hi my4delights
I'm sure your & your ds's future will be bright but sometimes, especially when you are trying to get your head round things it can be hard to believe.
As his mum, you will be thinking of all the practical as well as emotional things & no doubt have all sorts of different emotions.

My ds2 is 6 & was born 3 months prem, he ahs mild cp & autism & a few other bits & bobs, but he is just the most fantastic little boy Who makes me smile & laugh & occaisionally cry. He is just as an important part of this family as his big brother.
I don't really see his disability he is just our ds2, with a strange fascination for Mama mia grin

Give yourself a break, allow yourself to feel shit but also don't forget to enjoy your baby.
What sort of support have you got??

PS, I've not had wine but have had a few G&T'S!! X

2shoes Fri 04-Sep-09 22:51:26

yes life with a child can be very bright.
I have lovely days with dd(cp) but allow your self a bit of time. It atkes a while to get your head round your new life.

my4delights Sat 05-Sep-09 20:09:45

i have a little support. my husband is great but he is in such a different place to me. i am the one with him 24/7 and the one people look at at the school gates. my mum and dad are great, always on the end of the phone and ready to come over if ever i need them. but they dont know how it really is and if things i worry about are things that are maybe of concern or not. my inlaws on the other hand have not been there from day 1. they still havant seemed to see my baby for who he is and i do think this makes things harder. they dont even seem to want to see him.

glitteryb6 Sat 05-Sep-09 20:22:54

my inlaws didnt see my son until he was almost a year old and that was only because we took him round to see his great gran who was dying from cancer and they were there and even after that they wouldnt come to visit altho there was a bit of history as shortly after the birth, which was traumatic as he was born 14 weeks early, i received a letter from her telling me how it was all my fault as i had eaten a chinese meal the week before he was born and other such nuggets of wisdom hmm it was also my fault apparently when he had to go back onto the ventilator after the first week off it she reckoned it was because he had been receiving the milk i had expressed!

inlaws just sometimes dont get it, although to be fair they now visit him every fortnight and apart from the odd comment about vitamin supplements and the latest magical "cure" for cerebral palsy she has read about they are pretty much ok

boolifooli Sat 05-Sep-09 20:38:13

Hi My4

I understand about the partner not being with them 24/7, my huband infuriates me with his 'stop worrying' chant sometimes but I know I do need him to be like this. Imagine if everyone worried as much as you! And don't forget that a large dose of the fretting you do is just normal parental type worrying you would do even if DS didn't have Downs.

Last year, just before my DS's second birthday he had a virus that caused part of his brain to become inflammed and that affected his coordination so that he was unable to walk for almost 4 months.

At that time I stopped going to toddler groups because I couldn't stand people to look. I stopped seeing friends. All this hiding away didn't help and after some months of being a recluse I started to do more stuff.

My HV pointed me in the direction of the local special needs playgroup, wonderful place, do you go to a SN playgroup? So anyway he is walking again but has a very different style of walking to kids of his own age, he walks like he only learned to walk yesterday.

I am trying to mentally accommodate so may possible outcomes varying from needing a wheelchair to no difficulties at all. And it can be exhasting all this not knowing can't it.

Anyway, sorry about harping on! It's too easily done here


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