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Soldier, my inspiration!

imageAfter 2 broken iPad covers Soldier inspires me to design an iPad cover that is easy to hold and bounces if dropped!

Where do you start? – it’s been quite a journey! Design, IP protection, prototype, manufacture, stock storage, fulfilment and so it goes on….

So 18 months later on what feels like a really long journey #fatframe is born! Thank you soldier!

you can find out more at

http://www.fatframe.co.uk

You can also follow us on Facebook and twitter.

ūüôā x

 

 

 

 

 

 

 

 

 

4

No blue badge for a learning disabled child is like taking away their freedom….

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I have to admit to shedding a tear in front of Angel today.. Mummy’s upset she says….why?

We were sitting in the SMART (SouthEast mobility and rehabilitation technology centre) in Edinburgh having been referred there for Angel’s blue badge assessment.

She has had a blue badge for 3 years and it has transformed our ability to do things. Angel finds crowds incredibly difficult, has NO safety awareness, is frightened in new environments, frightened of loud noises, has no concept of waiting, having ADHD she is very flighty and thinks it’s funny to dash off even in front of a car and her learning disability means she would run off and just keep going..,… The ability to park close by makes essential things like doctors visits and dentist visits so much less stressful before the actual appointment by limiting the sensory issues. Even accessing outings is made possible by avoiding busy crowds and queue’s. We are able to let Angel experience so much more of life.

Children like Angel use to be awarded blue badges on the grounds of safety awareness. Not any more… The badge criteria is now solely physically based, can you walk 50 metres along a quiet hospital corridor with no distraction, noise, traffic etc? How can this be a fair assessment criteria? You don’t apply for a blue badge to park at the top of a quiet, safe, enclosed internal corridor… Even the assessor said today she felt sorry for us (especially as we have Soldier as well) but that Angel doesn’t tick the boxes so Angel isn’t eligible! ‘Don’t give up hope she says trying to soften the blow, the autism charities are lobbying parliament so you never know… But at the moment safety is not a criteria’. So as a mum I hear ‘we no longer care about children who are unsafe, either you restrict what you do with them or you put your child’s life in danger’ what a choice??

Come on government, this can’t be right, we get that you want to reduce blue badge abuse and personally I totally agree with that but this reform with no ability for the assessor to use subjectiveness in individual cases is seriously restricting the life opportunities of these kids, is this really what you want??

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Heartbreaking loneliness

I have to admit to feeling like a bad parent at the moment…..

Our Soldier has started to show some interest in interacting with our Angel but in true autistic style he much prefers his own company and in fact really struggles in normal noisy children’s company and takes himself off to a quiet spot. He certainly appears happy with his own company although I do always have a slight niggle that underneath the autism there is a little boy who wishes things were different….

Where I feel very guilty is that Angel really wants a wee pal to play with! I know most people reading this will ask themselves, what’s the problem? Doesn’t she have friends from nursery, school, locally? Parents of other children with learning disability will most likely be reading with a knot in their stomach.

In the early days when Angel’s difficulties were becoming obvious I was googletastic and read many times about how lonely life can be for special needs children. I’m not sure I really believed it as at that time we were part of a fabulous local mum’s group and another group of friends we made through NCT. ¬†Angel was Angel, she was part of the group, never short of a play date. Her difficulties grew as the group grew up and whilst the other kids and parents didn’t really understand what it was like for us they were immensely supportive and inclusive.

We moved city before Angel was 3 and left behind those groups of friends. ¬†Thank goodness for Facebook many of them remain my friends today but Angel and her wee pals have taken their separate routes in life…….

She often asks for someone to play with and clings to my hubby and I to interact with her, play with her dolls, pretend cook, do art, all the things that a normal little girl should be doing with her little pals…. It’s absolutely heartbreaking sometimes!

We have moved to an Area with quite a few young kids locally. It’s city centre though and a couple of streets away from one of Edinburgh’s large private schools so a lot of local kids attend there, a very different world!

When we moved here Angel attended a supported nursery place on the other side of the city and a private mainstream nursery near our house on a Friday. In the 2 years of nursery she was not once asked on a playdate or to a birthday party, already the gulf between mainstream and special needs was obvious. ¬†Angel was well known and seemed to be well liked but she was different….. It broke my heart for her to be so lonely when she was still being asked to birthday parties back in Bearsden where we are from (although through time thatunderstandably stops as the kiddies move onto nursery and school, build their own sets of friends and we are no longer local). I’ve lost count of the number of times I have been in tears regretting the move away from our understanding and accepting network,

She has moved on to special school. Here I wished for another little girl like Angel that she could form a bond with. My eyes were opened quickly that the majority of children with additional support needs are actually boys. Angel joined a primary 1 class of 10, 8 boys and 2 girls. There are some lovely little boys in her class and she has had a few play dates which is good and one little boy in particular but unfortunately they are in different classes this year and see less of each other. In a special school the children are bused in from all over the City so even meeting the little boys is not straightforward. ¬†The little girl in her class she has struck up a wee friendship with at achool and they greet each other with little hug. I have sent notes to the mum/carer, invited her on playmates/ to parties but she’s never responded. Another thing I have learnt along the way that sometimes the parent/carer of a special needs child has their own challenges and that you may never strike a relationship.

I continue to host birthday parties, Christmas parties and ask along friend’s kids, school class mates and Soldier’s nursery pals and it is lovely that there are some little friendships there in these settings.

What I long for though is for Angel to have a proper little pal or two that she so seeks….

I will keep searching for another little girl like Angel and hope they form a bond! My latest venture is to find an inclusive rainbow’s pack. Even that’s not as easy as if she was a mainstream kid, our local rainbow pack has said as she doesn’t attend the school she can’t attend,……

It’s my dream to see my Angel playing happily and growing up with a little pal. Something most people don’t have to think about, it just happens…….

Xx