#1
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Here is the second of 2 threads, once again thanks for doing this and enjoy Smile


1) Tell us about your Childs disability and age?Jacob is Almost 3 and has complex medical needs and also Spastic Quad Cerebral Palsy, we see the genetics team next month but everyone seems pretty certain his condition is a genetic issue rather than prematurity related!


2) Tell us about the day you got the diagnosis?Jacob was born at 28 weeks and has always had issues, he had many different diagnosis at many different stages and to be honest none were ever a surprise, we knew about the each specific condition long before they were formally diagnosed so its never been the shocking revelation that lots of parents unfortuantely have.


3) Who was the first person you told about your Childs diagnosis and how did they react?
Jacob was an inpatient from birth right up until he was almost 2 years old so i pretty much told eveyone in the family as and when we had any new delvelopments, my mum is a little bit of a drama queen so with her there was always tears but everyone else was fabulous, i did have a bit of a run in with my nan who at one stage said to me 'surely it would be better to just let him go', she got the full strength of my sharp tongue and has never been anything but supportive since. and i think now she feels incredible guilt about it! to be fair on occasion when he was in PICU and i've been given that decision to make the thought had also crossed my mind, this will sound dreadful to anyone who's not been there but for 18 months he had endured nothing but pain and suffering. it was however my decision and i didnt take kindly to her saying it lol.


4) What is your Childs biggest achievement to date?

the fact that he's here!!! at almost 3yrs old he has 7 volumes of medical notes and 18 months ago, not one medical professional expected him to live :-D

5) What 3 tips would you give to parents of disabled children?
try and stay as laid back as possible, stressing about every little thing and feeling sorry for yourself will make life even worse, especially for those around you, im not syaing put a brave face on when things are too much, that doesnt help at all, but its important to worry that there are certain things that are beyond anyones control....on the other hand, you are your childs advocate and if something needs doing it is your job to make sure that it gets done, either by you or a person who can do it. it took me several months to learn to speak up and speak my mind, and it really wasnt until i started doing this that things started to get done! the nurses and doctors werent my friends and it took a while to make the distinction, they were there to care for my child and if they didnt do it properly they needed to know that i wasnt afraid to say something,

6) What has your Childs disability taught you and how has it changed you?
it has taught me that no matter how dire things seem, 24 hours can change it all. i've also realised that having a disability or caring for a child with a disability is nothing to be ashamed, of. my child may not be perfect to anyone else but to me he couldnt be more so! i'm also so much more positive, if i were to dwell on all the negatives i'd be extremely depressed!


7) What did your Childs diagnosis change in terms of your dreams for the future?
i had an amazing job, house and life in general before jacob. i now have no paid job and a pokey little council house but my life is more amazing than it ever was before, we have our bad days like anyone else but the last 3 years have been a huge adventure and i have learnt a lot. once jacob is in full time education i'm going back to uni to train to be a dietitian, a job that previously wouldnt have crossed my mind.

8) You run the country and you have the power to change ONE thing what would it be?
oh thats a toughie, i think it would be housing!! we were homeless and in temporary accomodation for 9 months before we were housed and that was after 2 appeals, despite the fact that jacob wasnt allowed to be discharged from hospital without having his own room and was going to need extensive adaptations for his needs. it was by far the most stressful process i've ever been through.


9) What organization has delivered excellent service when dealing with any aspect of your Childs disability?
gosh is it bad to say none?? i cant think of any that i havent had to spend hours on the phone chasing up, or who i havent had to complain about??

10) Have you ever had to fight for something to help your Childs disability?
yes, unfortunately everything!! but there has been nothing that we havent gotten eventually!
#2
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thanks for sharing ur story Smile x
#3
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thank you from me too XXX
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#5
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Hi that video was lovely , to see jacob's journey . Always big smile on his face, wish you's all the best :-) X
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


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