#1
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Thank you to Berniethebolt for March 2011 spotlight member.
Enjoy the read Smile
1) Tell us about your Childs disability and age?

Christopher is 15, he has Cerebral palsy, hydrocephalus, epilepsy and less than 10% vision all due to having and aneurysm on the vain of Galen which bleed into the brain when my wee man was 4 half months old


2) Tell us about the day you got the diagnosis?

The day we where told about the aneurysm on the vain Galen was a shock but we where told that once a shunt was place in Christopher's head that would help with hydrocephalus, but we never got to what would happen with the aneurysm. Christopher was at home after the shunt was put in when he took ill we had to rush him back in to hospital it was a few day later we found out Christopher had a major bleed and it had bleed into the middle of the brain and out wee man was given only a few hours to live. That was when our lives changed forever.


3) Who was the first person you told about your Childs diagnosis and how did they react?

We told Sean's Mum and Dad and his nana who was over from England first. do you know I can't really remember how they reacted I know Sean and I just held each other a cried at that stage we thought we where going to lose our beautiful son. Now afterwards when Christopher started to prove Doctors wrong Sean's mum and dad where Brilliant we would never got through the 1st few years without them.

4) What is your Childs biggest achievement to date?

It's not just one thing it's everything hes done even after he got to three months we where told Christopher would totally deaf and blind he would have to be tube feed he would spend all of his shortened life in hospital. Well the wee man can hear a pin drop, can see food when he wants to, eats us out of house and home "" 4 weetabix in the morning"""" and is now 15 so [Image: tongue.gif] to the doctors lol
5) What 3 tips would you give to parents of disabled children?

1. Don't be afraid or too proud to ask for help even the strongest of us need it from time to time
2. If your not happy with the services your getting then tell them don't let it go because if something happens to you once and you let it pass it will happen again stand up for yourself and your childs rights.
3. You have to look after yourself too don't forget that, your body and mind I know it's hard but if your not well yourself how can you care for you child. That means maybe joining a Support group in your area if its not that easy I site group like this one can also help it's nice to know your not alone. And when your not well don't put it of get yourself checked out I think we are all guilty of this one.


6) What has your Childs disability taught you and how has it changed you?

I see the joy and the fun in everything now and I live life to the full and to the best my own health will let me, I'm not saying I don't get down but I look at my wee man and you can be sure he is laughing at something but what ever it is he picks me up and I laugh with him.

7) What did your Childs diagnosis change in terms of your dreams for the future?

I don't think it change any dreams, I always dreamt of the perfect marriage and family life. Ok so whos marriage is perfect but ours is very close to it we have two great sons, Adam our eldest grow up as a young carer for my and his little bro as he calls him hes turned out to be a very careing young lad and Christopher he makes us all laugh. so really what more could I want


8) You run the country and you have the power to change ONE thing what would it be?

That when all these people who sit in their offices making decisions about the services for our children and us are being trained for their jobs that as part of the training should be. That they have to spend a full week in a carers home and I mean 24/7 not 9-5 and has to do all the things we do as mothers/fathers/carers. Then lets see if they go back and make the same decisions


9) What organization has delivered excellent service when dealing with any aspect of your Childs disability?

For me and Christopher his school, Donard special school wow they are something else they don't look at a childs disability but more at their ability and they work on it it's a homely school, even a few years ago when I was going into hospital for a hip replacement at Christmas time the teacher and 2 of the asst sent home thier home nos so if we needed them to come and take the wee man for a few hours it was no problem.

10) Have you ever had to fight for something to help your Childs disability?

At the moment no I'v have a good social worker who has always help me in any way the only thing is the PTA and Christopher school fought last year for our summer scheme and it looks like we have a fight this year.
With all these cut backs coming you never know I may have to step up the the mark and fight like hell ........ come on I'm ready for you lol
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#2
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Well done Bernie , its good to see more about your life and of your sweet son Christopher . You can tell by how you write this that you are very positive and proud of your son and your family and what a strong woman you are . I wish you and your family even better and loads more happy times ahead xox
Single mum to a 14year old daughter and a son who is 3years old who has severe learning disability , hypotonia , hypermobility , visual impaired and sensory issues , he has showed me the meaning of life Heart and 3rd baby due 2nd of January 2012
#3
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really heartwarming to see how well your son is doing and how well the whole family are getting on you sound like an amazing mother and your son sounds delightful. Really glad you got to do the spotlight Big Grin
Will I EVER stop having to fight for my son to have what he NEEDS!? Huh
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(03-30-2011, 07:14 AM)meagain Wrote: Well done Bernie , its good to see more about your life and of your sweet son Christopher . You can tell by how you write this that you are very positive and proud of your son and your family and what a strong woman you are . I wish you and your family even better and loads more happy times ahead xox


Thanks meagain Yes I 'm proud of the family
Thanks for your good wishes and the same to you and your family xxx
Bernie
Don't look down on anyone unless your helping them up
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(03-30-2011, 10:54 AM)lubynoo Wrote: really heartwarming to see how well your son is doing and how well the whole family are getting on you sound like an amazing mother and your son sounds delightful. Really glad you got to do the spotlight Big Grin



Thanks Lubynoo for reading and yes Christopher is a joy
Bernie xx
Don't look down on anyone unless your helping them up


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