I am the mother of a gorgeous 5 yr old little girl with a variety of health problems but primarily with Prada-Willi Syndrome. I wasn't offered any counselling after the birth - again traumatic, or when rushed to SCBU, or when finally given a diagnosis. To tell you the truth I'm not sure how I made it through !. Eventually when back at home at around 4 months the health visitor sent me to the GP, and it was him who mentioned counselling...... which I turned down at the time.. I think as part of my coping mechanism I was exhausted mentally,physically, emotionally !!!!! etc, and was only able to survive by not talking particularly about it as it was far too upsetting and was taking it all one day at a time ! Which is what I still do ...... I am now able to talk quite openly about my child's 'disability' - wow of course just that quote is an emotional one to make !!!! but my husband is not that helpful emotionally - gets very upset about in a 'manly' quite way! or practically... and my parents who are great and very hands-on try to ignore the fact she has these problems !!! Not that helpful when I do actually want help or want to talk disabled things through !

OOOOOhhhh sorry about the little rant, havn't really talked about these inner thoughts out loud before !!!
...perhaps, counselling would still be a good thing, I've previously done some courses myself at night school. Ishould try to listen to my own advice ! hahahahah

now, best get back to my Eduactional Statementing assessment request form !!!!
Iona.

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smile smile smile !

(02-03-2010 09:02 PM)ionag Wrote:  I am the mother of a gorgeous 5 yr old little girl with a variety of health problems but primarily with Prada-Willi Syndrome. I wasn't offered any counselling after the birth - again traumatic, or when rushed to SCBU, or when finally given a diagnosis. To tell you the truth I'm not sure how I made it through !. Eventually when back at home at around 4 months the health visitor sent me to the GP, and it was him who mentioned counselling...... which I turned down at the time.. I think as part of my coping mechanism I was exhausted mentally,physically, emotionally !!!!! etc, and was only able to survive by not talking particularly about it as it was far too upsetting and was taking it all one day at a time ! Which is what I still do ...... I am now able to talk quite openly about my child's 'disability' - wow of course just that quote is an emotional one to make !!!! but my husband is not that helpful emotionally - gets very upset about in a 'manly' quite way! or practically... and my parents who are great and very hands-on try to ignore the fact she has these problems !!! Not that helpful when I do actually want help or want to talk disabled things through !

OOOOOhhhh sorry about the little rant, havn't really talked about these inner thoughts out loud before !!!
...perhaps, counselling would still be a good thing, I've previously done some courses myself at night school. Ishould try to listen to my own advice ! hahahahah

now, best get back to my Eduactional Statementing assessment request form !!!!
Iona.

hi Iona
i think everyone has their own way of coping and if ignoring the disability but giving a lot of hands on support is your parents way i wouldnt worry, they are just seeing their grandchild not the disability which is lovely really.
if you need to talk disabled stuff there is nearly always someone on here who would listen and answer and you can rant away as much as you like thats what Daniel and Lucy set the site up for and talking or typing does help a lot, even if there isnt many with the same problems you will find similar issues with all of our Children in one way or another .
speak to you again after you have filled your forms in and if you having any difficulties filling it in ask on here sure there is someone who can help (not me i rubbish at form filling lol)

corinne

hi iona, i find it emotional to talk about euans condition, especially if i am telling someone who doesnt know about it. its almost like facing up to reality and the future (even tho i deal with it every day!) i find it alot easier to type on here, i'm not entirely sure why i find that easier it just is lol. my family do acknowledge his condition but they don't seem to acknowledge the ASD part that we are going through assessments for at the moment! even though they all see and say he's different and hard work they took the fact the cdc said he does fit the 'full' criteria at the moment as a 'he isnt on the specrum' and now i can't have a conversation about it with them without being annoyed!

isn't it funny how we can be so strong one minute but then someone can ask a simple question and it brings it all out from within ! hope you get on ok with the statement request and if you ever need a chat we're all here

xx

Thanks, for your message. Yes, it does feel alot easier to have a little chat on here..... I find I'm alot better now than I used to be, sometimes all it takes is a friendly how are you, how are things, and lots of the hidden emotions can't help to escape out... better out then in I guess. As I said before, my parents are thankfully great, but they are 'come along, get on with it, oh you would get that with any child' kind of people, which I completely understand and 'get'. But sometimes I need to just chat about the things than do make up my daughter - special needs and all........aaaaaahhhhhh !!!!!! like you said abit of reality....
OOOh I feel abit better for that already ! The statement request paperwork is still ongoing and it's just so upsetting - remembering everything from the very beginning..... and answering stupid questions...
..... WHEN DID YOU FIRST NOTICE SOMETHING WAS WRONG WITH YOUR CHILD? - Immediately
..... WHERE YOU DISAPPOINTED IN THE PROGRESS - obviously yes !
ah.. well, at least I can have a moan about it all as I go !
I find this as emotionally draining as the dreaded DLA booklet ! and I normally complete that slowly bit by bit so I don't get too upset...
well thanks for listening, I'd better get back to it.....

Without going into things to deeply my GP is currently trying to access a councellor for me who has specific training in dealing with parents who have disabled children.
Six years post diagnosis and some days things are still as raw as when my little boy was diagnosed.
I cant see your original message atm but do strongly feel that on a personal level that any more counselling I recieve needs to be specific and relevant to the problems we all face daily.
Feel free to pm me