Friday, 8 July 2016

slipping through the cracks

Slipping through the cracks... that's all we seem to do.

He needs a wheelchair - but not enough compared to others.
He needs physio - but not as much as others.
He still needs OT - but we will watch from afar others need us more.
He needs emotional support - but not as much as others.
He has spectrum traits - but not enough for a diagnosis.
He has learning difficulties - but not yet great enough for extra support or change of statement.
He has processing needs - ohhh wow OK, that may class as a true need.
He has language needs - but he can talk.


I am told again and again how complex he is, how they appreciate how tricky it is to look after him, still I can't help but feel we fall through the gaps; but lots of mild / moderate needs in every area of life = a very big jumble of issues that play off and into one another.

But on paper, for the tick boxes and the funding - we slip on by.


Today is reports day... I know already he is not at age appropriate level in all subjects.  He has, in the eyes of the system failed Yr 4 as he did in Yr's 3, 2, 1 as well.  He gives it his all, despite his abilities being different on a daily basis, Teachers and LSA's continually differentiate work to help him... but it is never enough.  And he is starting to feel it.

After years of umming and thinking about secondary and knowing that his needs in some areas will grow bigger we were finally comfortable to say 'special provision' - deciding that actually the pressure of mainstream at secondary would be too much.  Staff agreeing with us that he finds the current workload hard going in primary and that is before the pace and content of the curriculum ramps up in Yr 5.

Yet despite his needs, his failings, his always being bottom of the pile though giving it his all... looks like he won't meet the criteria for that either.  He does not really fit.

Slip, slip, slipping.

So our choice is... send him to mainstream secondary with statement, hope it works, drop some subjects to support. See if he can cope with the vast numbers of people and the pressure (he won't). He will have peers who know him but his class will always be the bottom - he will be with some who have no interest in learning, disruptive.  But will have more LSA hours so he should be unaffected.

Or we find a moderate learning disabilities school that might take him.  But it's all new friends, and it's whether he would thrive in that mix of people.  Whether there would be enough opportunity to keep him as he is but the pressure removed enough that he can thrive.

"We need to find the part of him we want to keep and not change, that's how we will come to a choice." was today's advise.

But those 2 options are not really a choice.  It's a shoulder shrug and a best fit under the circumstances solution.  There is no place in the system to get it right.

People say its hard being a square peg in a round hole... but it is harder be be a round peg for a round hole that should fit, but somehow doesn't.


I am emotionally drained. Tearful and fed up.  How must it be to always try but never succeed... always.  If it shows now by year 4 how will it be by year 11 when your whole school life in mainstream has been a struggle.  How will your self esteem be? But what would a special provision offer that could change this without loosing his social network that is so key and anyway special provision is only theoretical because despite in real life being a very complicated when put on paper, you're not complex enough.

It's shit.

It is rubbish and heart breaking and stupid.

And it is this, not the caring, or the wobbliness or the other bits I dislike about his disability...it is that no matter what we will do, and no matter how hard he works this will always be how it is.

You will find me in the cake aisle in Tesco... 






Monday, 4 July 2016

A wheely good art auction

I owe the internet a lot.

It has helped me when I have felt at my lonliest.

I has given me a place to go when it's been tough where there are friendly faces tapping away making it seem a little better.

It is the internet gave me Sheonad.



A best buddy I never knew I was missing, and a family that fits with ours like gin and tonic or fish and chips.  You assume your best friends only come from school... but for me the other half of my Tunnocks teacake was sat in Glasgow for 36 years before we stumbled over each others words written raw from hearts both battered and hope filled.

Sheonad is an awesome mummy, wife and gin lover.  We have holidayed together, the kids have laughed till they wet themselves, the grown ups have supported each other and the Dad's are currently having a beard off after both failing miserably at archery 2 years ago!  The thread that binds us is the understanding of a world unexpected, a path given to us that we do our best with, though it is not where we had ever planned to be.  We get how tricky certain parts of everyday are as well as how magical the smallest achievements can be.

This is Eilidh... our dudes fastest whizzy wheeled lassie.  In the back ground of this picture (my 32nd birthday conga at Edinburgh zoo!) you can see the boy and Eilidh's awesome big sister too.


Eilidh is infectious!  Joy bottled up and given curls and a cheeky grin.  She has SMA (Spinal Muscular Atrophy) which means although she is a ball or energy she is unable to walk or stand and her independence comes from 'Snappy' - her whizzy power chair.  She is Snappy and Snappy is her -  her key to exploring the world.

Children grow.

Wheelchairs don't.

BUMMER.

And that where Sheonad shows her genius - that spark of something that not everyone has. It's fundraising time (round 2) and she has managed to think out of the box again!  Already a family member has run the London Marathon and raised well over £5,000 BUT these chairs are 10's of thousands, and despite being worth every penny there is still a long way to go.

So after weeks of planning and a few technical issues Sheonad has launched the Wheely Good Art Auction.   There are many lots up for grabs via E-bay for you to bid on and bidding closes on Sunday night.  All money raised will go towards the new wheels, there are some gorgeous pieces all of which have been donated - many directly from the artists themselves.  It has been a mammoth task to organise and I am super proud of her for pulling this together.


                                             PIECE DONATED BY www.bonzo-art.com

Lots of the pictures are shown on the 'Wheely Good Art Auction' facebook  page too, just have a gander, you may find the thing your mantle piece has been missing, Granny's Christmas present or something 'just because you like it' but hands of the Tartan Stags... that's mine!