Tuesday, 15 April 2014

picnic time! {a family photo story}

So beautiful outside that even I went out to enjoy the sunshine today - okay, yes, I had to go out because that was where the food was.  But it was (and actually still is) very very sunny out there...

Poor Mr Manley is not very well, and Smiler doesn't look that impressed either, but let's just put that down to my photography skills being lacking - looking up from someone's feet is never going to be a flattering angle...

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The snack-y picnic-y food went down well - the breadboard covered in crumbs was actually full of bread and crackers at first, I just didn't get the camera out quick enough to catch it!

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 Note the guinea pig run - Sam chose to hide every time I pointed the camera at him though... He's our one remaining guinea pig, so if anyone has a solo pig at home who would like some company, give me a shout - free to a good (local) home and all that!

I have no idea why there is a cardboard box on a stick.  My guess would be some kind of den, but they won't tell me - apparently it's a secret. 

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Monday, 14 April 2014

parents and professionals and professional parents

As the parent of a severely disabled child I have learnt, over the years, how to get along with the professionals Smiler has brought into our lives.  I was the professional going into peoples homes for several years, and (to a certain extent) I know the system.  I know decisions aren't made overnight, I know how important it is to keep up to date phone numbers on file, and I know that (whether it's fair or not) if you treat the professionals with respect and don't let it get personal then you are more likely to get what you want.

Depending on the needs of your child and the system in the county (or indeed country) that you live, you might end up with stacks of professionals, or very few.  Smiler had, the last time I counted, nine medical consultants (three of who are surgeons) - actually ten consultants (always forget about the urologist!), four therapists, and a social worker.  And because I can't help but expand on that last one, he has a social worker who is with the Disabled Children's Team - it's not because there are any child protection concerns.  The individual personnel have changed occasionally over the years, with one of the longest lasting being the social worker (who I won't name here as I haven't asked permission), who we've had for five years.  Doesn't sound like long, but plenty of reviews and phonecalls and emails traded over those years meant it was a comfortable partnership - he knew I wouldn't leave a message saying it was urgent that I speak to him unless it really was, and I knew that he'd fight in our corner for anything he genuinely agreed that we needed, and if he didn't agree then he'd tell us that upfront (not that this ever happened).