Hello Tobys-mum,Thank you for joining Parents of disabled children and i hope you find the site useful.
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http://www.parentsofdisabledchildren.co....t-612.html

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Thank you and Hi
Im Becky Tobys mum I have 2 sons and a stepson my youngest Toby developed ADEM after chicken pox which left him paralised from the chest down in january 09
We spent 3 months in 4 different hospitals and weve just finally had 3weeks rehad in stoke mandeville spinal unit which have shown us how to care and manage his body. He starts school in September which his dad is quite worried how he will cope but im sure he will be fine.
Any advice from other parent who have a child with spinal problems is greatfully recieved and I hope I can also help other parents
xx

Hi Becky,
There are many Beckys on this site now
Dad's bound to be worried we like to protect our little boys but then we realise we have to set them free but it has to be on our own terms so he will come around and be ok with it once he realises its a part of Toby living a more independent life.
I can imagine it was so hard having a child who was running around and doing all things children do and then becoming paralised,how did you cope with this because i can imagine it would have been a really hard time for you and your husband.
I know its difficult enough thinking how even though Euan had his condition since birth but was not diagnosed until after his first birthday so it felt like we had a healthy baby and then a poorly baby so its bound to have been hard for you aswell.

What sort of support are you getting from family and freinds and social services at the moment?

(03-07-2010 02:12 PM)Daniel Wrote:  Hi Becky,
There are many Beckys on this site now
Dad's bound to be worried we like to protect our little boys but then we realise we have to set them free but it has to be on our own terms so he will come around and be ok with it once he realises its a part of Toby living a more independent life.
I can imagine it was so hard having a child who was running around and doing all things children do and then becoming paralised,how did you cope with this because i can imagine it would have been a really hard time for you and your husband.
I know its difficult enough thinking how even though Euan had his condition since birth but was not diagnosed until after his first birthday so it felt like we had a healthy baby and then a poorly baby so its bound to have been hard for you aswell.

What sort of support are you getting from family and freinds and social services at the moment?

Hi Daniel

It was hard in the beginning as it was 3days after his 3rd birthday, we had to sit back and watch him fight for his life as his antibodies attcked him for the first few weeks so just having our son back to normal was amazing, the down side was hiding his bike he got for his birthday and a few of his toys that he wouldnt be about to use. We have had 1 converted for him from remap charity though, there very good at creating things for disabled children.
My son is very happy very independ and helps me get on with life, I cant complain about anything when hes very happy but drags 2/3 of his body around the house.
You just adapted and carry on you have to for the sake of your child also my other children. We have no help from the SS, he is just being statemented for starting school in September and he attends his old nursey 3days aweek.
Its ashame soiciaty doesnt adpted as well as he has, its always a task going shopping starting from the parking in the disabled space, I need this to open the door fully wide to get toby in to his wheelchair and it always ends up with older people wondering why I have drove in to that space with a child... arghhh but thats a whole new thread lol

welcome!! someone else who gets looked at funny for being in a disabled bay with a child i'm pretty sure they think they deserve the space more than us even though i can bet my life our Children have alot more problems than them don't you just wish one would have the guts to say it....lol

anyway...welcome again and let us know if you need any help

xx