Little Tomorrows

Sometimes the future can feel big and scary,

It makes you uneasy and a little bit wary.

Infinite time - your path seemingly ready,

With lumps and bumps that keep you unsteady.

But don't feel frightened let it down size,

As someone once told me someone who was wise.

Remember...

Try not to waste time on worry or fret,
Walk your path head high with spring in your step.

Look for the rainbow when your hearts full of sorrow,

Because the future is simply lots of little tomorrows.

The adventures of Sherlock Bones

You'll find him at number 48,
It has no drive or fancy gate.
But this is the place he now calls home,
That mischief maker Sherlock Bones.

He eats like a horse, he snores when he sleeps,

He has just learnt how his chew toy squeaks.

He is partial to phones, (not to selfie just chew),
And he loves his frisbee which he brings back to you.

Our garden Dinosaur did not get a greeting,
Yet my chicken doorstop took a comical beating.
He's perfected that 'love me' doe eyed puppy look,
As you remove a now tatty School library book!

We've more stair gates now than from toddler years,
It feels like a budget version of  'The Crystal Maze' living here.
And as for the cat?  the battle lines have been drawn,
"You keep the bed" te dog said "and I shall wee on the lawn."

The grass now has holes which he proudly has dug,

He's digested at least a third of the rug.

He attacks the cushions when he thinks you're not looking,

And has twigged what it means when someone is cooking!

My shoe now appear to be more flop than flip,

And although puppy class training has taught him to sit

The more useful command we should work on I believe,

Is probably (undoubtably)  "Sherlock now leave!"

He is 'Barky McBark Pants' when the doorbell goes,

How can someone so small be so loud? Who knows.

He loves to go out and the attention he gets,

Especially from the nurses when he nips to the vets.

But there's one person his tail wags for more than any other,

And that is for his very special big brother.

Sherlock follows him round as if on invisible thread,

Sneaking on his lap as a comfy bed.

I have to admit my heart wobbles like jelly,

When you hear the laughter roll out from the boys belly,

As Sherlock jumps and rolls and bounds and runs,

Evenings together filled with 'togetherness' fun.

And the best bit of all, is that right from the start,

Your nuzzles and snuffles started mending my heart.

Your big fluffy paws gently pieced it back together,

Your love is a gift I will treasure forever.

The wait's nearly over, the lead's by the door,

Your first walk eagerly awaits and many thousands more.

So here's to mischief and muddy walks our dear Mr Bones,

And thank you for bringing Team Kitchen back home.

You are more than just a dog

And then I cried.

I cried rainbow coloured tears... tears of love, and happiness, and completeness. Tears of joy, sadness, loss, tears for the years of 'maybe' that had laid heavy inside.  Tears of knowing we had come to the end of tricky conversations.  You were the full stop on one page yet the new beginning that would fill the crisp white empty pages of the next chapter.

I cried because I did not know my heart was so very broken.  I did not know that the sticky tape had tarnished and the blue tack was failing.  I did not see how it was loosely bound together by luck alone.  You were my superglue.

I cried because I can see what you will give us. I cried for the happiness I see in my sons eyes as he strokes you and for the years of friendship and adventure to come.

It has been a wonderful journey waiting for your arrival.  As a family we shared the same excitement we did when we have our first child, our only child.  We planned, and read, and learnt and beamed excited smiles every time a picture of you pinged up on our phones.

I cried because this is right.  You fill the gap that has followed us for years, the gap where dreams and hopes have fallen into never to be found again, like the boys missing sock!  It is not the family I had assumed would be ours, but family you truly are.

I cried because I am so very thankful.  I hope beyond hope your waggy tail and snuffling nose can sense just what you mean to us.  You have filled me with hope, you have given my son a new lease of life and bought us the promise of companionship when we know we will be weathering the storms the boys needs bring.

You are more than just squeaky toys, gentle snores and the warmth of soft paws as you sleep on my lap.  You are a fixer.  A fur brother.  You have licked and nuzzled your way into my heart and gently put it back together... and for that Mr Bones, I will be forever grateful.

Thank you. x

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... 

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!

Where have all the rainbows gone?

We've had some sunshine and heavy showers,

Had changable weather hour after hour.

So there's just one thing I'd like to know,

Where did all the Rainbows go?

We've enjoyed the sun's rays after the rain,

Looked up at the sky again and again.

But the rainbow has vanished, our colourful friend,

The one with no beginning and no visible end.

No pots of gold, or rainbow chasing.

No wishing you could climb one and have sliding races.

We lived through the storm waiting for that prism of light...

But when one does not show - it does not feel right.

Still we plod on, it's all just the same,

Just a little bit broken by our normal every day.

It's all a bit weary, we are splitting at the seams,

We need the rainbows back to remind us to dream.

To bring us together, to help us see colour,

To unite us in joy remind us be kind to each other.

We need those peace filled colours brushed across our sky,

To bring us together as dreamers - you and I.

Nine years and me

9...

9 years of hugs and love and laughter and wonder.

9 years of progress, adventures, family.

9 years of watching you grow, stand your own, find out who you are.

9 years of being your Mum.

This time 9 years ago, 4 days before you were born, we were filled with ideals and day dreams.  Picture perfect 2.4 children family, milestones hit, what activities we would sign you up for, holidays and day trip sketched out in earnest.

Then you arrived... hap hazardly, scarily, not quite as we had planned.  Little were we to know the 'not quite as planned' beginning was mealy the start of a trend.

I know birthdays are filled with joy and cake and love and friends, but they are also filled with acknowledgement of what has been and what could be, the ever moving treadmill going forwards.  But I struggle.  I openly admit I struggle, and no matter what party we throw, the gift we give you, the food we eat it never feels enough for me.  There is  always a hollowness, a time marker of when things changed, when you came into our world not kicking and screaming but blue and silent unaware that was simply the start of our parenting fears. 

Birthdays mark reminders of where we have come from, the paths we have taken, the news we have heard, the Drs we have seen, the tears we have shed, the lives we sometimes don't recognise.  Birthdays remind me of where you should be, what should have been and although they made me sad when the walking, talking milestones were gapingly obvious on your 2nd, 3rd and 4th birthdays, we now have a new void... no longer physical but a  learning and processing difference which will only grow and cannot be fixed.  My heart is so heavy with this.

I have the banners to make, the cake will be done and the balloons will be blown.  I will watch you open your gifts and beam with thanks.  I will be proud we have made it to here, yet slightly deflated that it is not where I want to be and I wonder if that acceptance will ever truly follow.

The next few years are big ones and time does its thing even if we are not ready.  I was blessed you wanted me to hold your hand longer than most.  I was honoured that you called me your best friend years after your peers school friendships were solid.  But I have a heart scarred from breaking promises of 'not again' when the Drs came with more tests and exercises and they will never heal... not properly. 

I hope that I am enough.

That despite my sadness and loss and skewed view of this happy day you know we would move mountains to help you. I will write, chase, challenge whoever I need to to make sure you can be your very best, whatever that is.  And you are lucky, so very very lucky, to be surrounded by friends who will always have your back - something many people, even as adults never truly find.

I am not a little lost because of you, I am at a loss because of me.  I am stuck wanting to change things I can't, that I am being diverted down a road that I dislike and despite the wonderful roses in the hedgerows and the sun setting over the fields I am still angry that I am not where I thought I would be.  

And then you will be 9...

9 years of wanting more.

9 years of feeling like I have failed.

9 years of anger and confusion and shouting to any deity that might be listening that they have fucked
this up good and proper, because I don't think I deserve this.  You don't... we don't.

9 years or asking what did I do wrong?

9 years of never quite accepting.

And that is a very long time to be bitter.

I am selfish to act like this day is mine, that I have a right to feel defeated on the one day a year that is all about you.  And it is your day, truly it is.  But when you popped into our lives you let in monsters and gremlins we never expected, and although you are a brave knight and have conquered so many of them, they are always in the shadows though seeming smaller as time passes.  When your life began, mine completely changed and that is why birthdays are always a paradox - the joy of parenthood, of seeing all you have achieved, but with a tarnish of a sadness I could never explain.

I love you son... fiercely and protectively and in a way I underestimated.  You have re-written the rule book,  done things in your time, in your way.  You have taught me about patience and determination, you have bought me friends I could not be without.  Our life is a very different colour to the one we had before you or could have ever predicted. 

And most days that is enough. 

But you are nearly 9... and somehow birthdays just feel that little bit different.

A tail of our new adventure

2016 always felt like it would be a year of change. 

We had reworked family life balance, we had a better understanding of the dudes needs, we felt more together, focused and in control than we had in a long time.  But something still itched, like that annoying tickle you get on the bottom of your foot that no stamping or scratching can get rid of... something was missing.

Despite the dude being happy had content most of the time, and having two fairly upbeat cool-ish parents he just needed something more, we weren't enough.  He needed a companion. 

And that is when, after lots of thought we decided to make the change and make our family of 3 a family of 4, just that the newest member would have four legs and a waggy tail!  The impact, even though we have a while to go, has been overwhelming.  Not only have I learnt more about dogs in the last 8 weeks, but our friends have been wonderful going out of their way to help contact professionals to ensure we chose the right breed for our family and point us in the right direction of every element of being careful and responsible dog owners.  I honestly have not seen the boy as confident and enthusiastic (I say boy I mean boys as my husband is very much looking forward to the evening walks that happen to go past the pub) so Dear Fur Brother, this is for you...

Dear Fur Brother,

I cannot explain how much we are looking forward to having you in our home.  We can already imagine where your dog bed will be, your two legged best pal to be has written a list of everything we will need and apparently leads cannot be purchased unless we are all together, the same goes for toys, bowls, blankets... everything.

Our home suddenly feels full of hope, it is tingling with anticipation filling up in readiness with love, hugs and a brother fit to burst eager to play fetch (though we know the likelihood of you bringing it back is slim!) and just sit by your side.

You are not here yet, we have a little wait, but already we can see how you will open up our  little guys world.  Every time we stop to chat to other four legs and their owner his eyes sparkle sharing that you will be with us in soon, talking of puppy classes, teaching tricks and where he wants to take you for walks.

I know you love company and there is a young man here who cannot wait to have you by his side, and we will love you just as much... seeing how you will help continue to grow his confidence and be a constant friend through the next few years where so much of what he knows will change.  You will be a keystone in his life, the friend he can always rely on, a confidant in tougher times - for him and ourselves.

You may have fur and 4 legs but you are all a sibling could give to him, to us, and we simply cannot wait to meet you. 

See you soon

Team Kitchen

Bootcamp and me

Body shaming sizes 14 plus.
Bingo wings and fuller bust.
Trying to avoid the fuss.
Because I'm fitter than I have ever been.

Loosing faith in every mirror,
I am sure I looked a little thinner,
Maybe I shouldn't of had that chicken dinner!
But I'm fitter than I've ever been.

I went and joined a boot camp class,
To tone my thighs and shift some ass.
Was never sure if it was going to last.
But now I'm fitter than I've ever been.

Press ups, planks, mastering burpies,
Squat thrusts, shuttle runs, elbows and high knees,
Mountain climbers, lunges and 'what are these?'
I am fitter than I've ever been.

Every week pushed a little more,
Exhaustion hits as you close your door,
I did it! Watch my confidence soar.
I am fitter than I've ever been.

And although my size maybe the same,
I can start to see muscles form again,
I know I am in this for the long game.
Because I am fitter than I've even been.

I am not the shape I used to be,
And it's hard sometimes to see it as beauty
But I am working on loving the 'now' me...
Because I am fitter than I've ever been.

The A word and me

The A word was always going to be watched in this house - there was no question.  It does seem a little odd that I eagerly awaited a drama that highlighted a life with a child with Autism by gathering snacks and pouring a glass of something chilled, but it felt justified because it was a drama about a life that so many of our friends lead and I was intrigued to see how the BBC would deal with such a sensitive yet important topic.

When watching the first episode I worried that families who live with a child with ASD may feel they had gone a little softly softly, that it did not show some of the trickier behaviour patterns or challenges - but this is based on one story or one child and one variation of a diagnosis.  Anyone watching must remember Jo is not Autism himself, just a boy with a variation of quirks, habits, rituals and social and communication needs that are within the autism spectrum. Personally I was excited to get a sense that the story was going to be bigger than the diagnosis alone and that it would look at the impact it had on the family around the child more the just the boy himself.  From there on in I was hooked,

The first few episodes I loved. It was reassuring to see Jo show some of the things we have lived with for so long, the little things... the repeating what you say, the constant finger fiddling, the literalness and the closing a door to open it again ritual made me smile a huge 'I know that one' grin.  It has been watched by family members who have in the past quietly wondered why we had pushed for ASD testing on our own son, but since watching have already openly said they can see bit of him in Jo.

(Just to clarify our son is not on the Autism spectrum, his difficulties are linked to his Joubert Syndrome not a secondary diagnosis which was looked into.)

But now we are a few weeks in and I admit that I am finding some parts harder to watch it.  The drama is still brilliant and I think the BBC has handled the awareness and the understanding of the A word very well, but as the series focuses far more on the family, especially the mother, I am finding it uneasy viewing, my feet squirm and my tummy flips as I can see traits in her that ring true.  I may never have bullied professionals to get my own way and I do not have an older child to see how the effect our sons syndrome and my blinkeredness would have on them... but there are bits that are so very close to past experiences and emotions.

The effect a diagnosis has on extended family - seeing how having a child within the family unit with additional needs effects others has been important.  Like the mother here it is natural to become focused on being your child's advocate, their voice, you tire yourself out running around getting things done, being there, thinking through the next step.  You are so tied up in being exhausted and being a your child's champion that you may not notice how other relationships, which are just as important, may suffer from your inadvertent and well meant single mindedness.  Everyone is hurting yet they are also so wrapped up in their own sadness that they are not asking others if they are alright when in fairness it is all they want themselves.  This is how easy it is for families to crack under the pressure of caring for someone with disabilities and the hiding the raw emotions in awkward humour was something I recognised far too much.

Marriage - this couple are strong, but you can see how the intensity of trying to get everything just right and learning acceptance is taking its toll, especially when one finds it easier to accept than the other.  Everything seems more tense and strained as the childs needs take preference and they are forgetting already who they are, or were pre-diagnosis.  This is why we always go away a few days a year just us.  I know not everyone in our situation can and we are lucky, but for us it is so very important.  

Trying to fix it - last night was the hardest one for me to watch.  Seeing the mother with Jo looking at the photo album when he suddenly talked and felt things he apparently 'should not have' made my eyes water.  I could sense her 'we can fix this' flurry of joy, that this was her glimmer of hope to hold on to and that if she just kept pushing and doing and trying she could take this all away.  

I wanted to shout at the TV "It's OK, he is fine as he is.  Calm down." but her reaction reverberated right through me.  I remember making those phone calls of 'we can do this he will be fine' before a firm diagnosis.  I remember the excitement when our son finally sat up and the *phew* feeling of 'well that's one milestone done we should be one a roll from here' only now knowing that was just the beginning.  I got her need to try and get Jo to do it again and again to prove that she was right, whilst I also saw how the father was more grounded and realistic but did not want to crush this sudden hope he had not seen in his wife for a long time... it was too real.  I knew her frustration, her snappiness, how it comes out in bursts of seeming pushy or bossy or selfish, the silent rage of the unfairness of it all, the over eagerness to want to create friendships for her child because friends made you accepted - the difference is that this time I got to see it from the comfort of my sofa, but for those few moments of TV she was me.

Will I continue to watch the A word?  Of course.  The reason it is treading on my toes a little is because they have got it right... not all of it, but they are exploring the ripples a diagnosis brings throughout the home and extended family and it is a programme bigger than the Autism spectrum itself.  It shows in an exaggerated form how lives are changed so quickly and how we can become unrecognisable despite it being for the right reasons.  

I hope that it gives people who are not familiar with the SEN world a better understanding of Autism and that families benefit from having a more accepting general public and I hold a greater hope that people get a sense of the system we have to work with, the decisions we make and the greater implications this has on our family and friends.  I hope is shows that everything we do, whether rightly or wrongly, whether we hurt the ones we love accidentally, is always done with the best intentions at heart.

I hope you see our love.

water colour memories

As I ponder what to write the tick of the clock marches on in the back ground and the distance between then and now continues to grow.

Time blurs the edges a bit and the important stuff stays, but I find it hard now to recall your laugh and doubt whether my memory of your voice is quite right.  Your smile though that will always stick.

22 years is a long time to miss someone.  The older I get and the more I see and do, like experiencing the love of your own family, the chance to get married, the buzz of holding your first house keys the more I wish you got a chance to feel it too.

I still have not completed Sneaky Snakes by the way, your old Gameboy is safe but you would love how computer games have changed, 3D, colour so many interactive games, but Tetris is always being reborn and is much a favourite now as back then.

We are taking our son to Disney this year, I know it will remind me of you.  I still have your glass proudly sitting in my cabinet, one of the gifts you bought yourself when you visited just as it opened.  I have never forgiven myself for loosing the Minnie Mouse pin badge you bought back for me, I had worn it to France as a lucky mascot on my first trip abroad and lost it near the Eiffle Tower.  I always imagine a child picked it up and your kindness has been shared once more, now we call it 'paying it forward' - you would have liked to have been involved in that.

 I remember your Grandad turning up at my door with this box of your things - a koala, your Euro Disney medal for being one of the first to visit and the glass, your beloved Gameboy and your last school photo.  He told me that in your notebook at the top of the page it said "Invite Kate to tea" - that would have been lovely.

We were the young ones in our year and I dealt with your loss poorly.  I did not know what I should feel or do, I told Mum and Dad in such a rush it was almost like I had read a newspaper article, or seen it on the news.  No tears.  They took a long time to fall.  11... we were just 11.

I hope you never minded I did not say goodbye with everyone else, it felt wrong and odd and overwhelming.  I took a long time writing my message to you though, I wanted it just right and I stood and remembered as I left your flowers after everyone else had gone. Little girl lost.

Mischevious
And
Really
Kind

You in a nutshell.  Though it could have easily been Marbles, Adventures, Real Kindness...

Oh marbles, hours and hours on dirty drain covers, talking about aliens and dreams of waking up and exploring the fields whilst families slept.  Childhood memories which I hold dear even if they now appear more like a water colour than in full HD.

Forever young... your dreams of archeology remain untarnished by the possible struggle to get grades or having to find the funding for Uni.  You have not made teenage mistakes or had the kind of arguments that cannot be truly undone.  You are in a time freeze, a snap shot of childhood.

I talk about you to my son... he has a very special friend too, they have been together since the first day of Primary school - best friends who fall out, make up, find new friendships but are always drawn back together.  I tell him how brilliant it is to have a friend like that, that being friends with a girl is magical and marvellous and I had a special friend like that too. I show him the special marbles I still have, and talk of seeing you walking your dog in the field and that 2p you found and gave me so I could go and buy sweets.

Thank you for such a wonderful friendship - thank you for giving me stories to tell with a smile as I see my sons eyes light up with the same mischief you held.  Thank you for sending another friend my way after you left... your loss drew me to him, one of ones you made in those first bumbling months of secondary school, thanks to him my teenage years were filled to the brim with silliness and fun just as you would have wished.

See you some day buddy... hope I am doing you proud,

Me x

More than a test score

Dear Kids,

I think as a grown up it is time to let you in on what seems to have been kept as a bit of a secret...

School is not everything.  

There, I said it and I now half expect someone to whisk me away and lock me up for high treason.  Yes it is a huge part of your childhood and adolesence and the foundations you set for yourself as you enter your life of grown up-ness... but I am fed up of you all worrying and believing your whole worth throughout your education (and into adulthood)  is being judged on your ability to recognise verbs, adverbs, new grammatical terms I have never come across, algebra, the underlying themes of to Kill A Mockingbird, getting every spelling you have ever been given right every time.  I am truly baffled how people think you will cope as an adult when you are led to believe that succeeding in the world is only based on getting the best score in exam and test papers... because it is not.

Yes, you do need maths to fill in a tax return... but you don't need to have ace trigonometry to do it.

You do need to read to sign a contract... but knowing the underlying themes and subtext of all Shakespeare's plays to A-C GCSE grades won't really help you (unless it is a contract for the lead role in Hamlet at the RSC).

It's important to know that water and electricity don't mix and which colour is the live wire in a plug... but reciting the periodic table is not needed when you are stood in Homebase looking for the right sized fuse.

I worry that you believe grown ups think you should be able to do EVERYTHING that is now expected of you at school at the correct level, that you fail us and yourselves if you don't find it easy to pick up and that we will be cross and upset if you find it all hard going, but in reality... don't fret young Skywalker.

Give me your year 9 maths homework and I know I won't be able to do it, the expectation of you to suck up information is far greater than when I was in school in the 90's and I probably never ever covered the work you are now bringing home.  Year 6's are now studying English which was once around the level of yr8 curriculum... bonkers!  Be assured that as parents we know you are really being pushed, and a second secret is that many of us feel a little uneasy about it.

I fear Education has lost it's way a bit and I know it must seem like it's your school or teachers fault but (this is where I stand up for them) it's not.  Teachers and Head Teachers do what the Council / Government tell them to.  On paper that is fine as everyone is doing the same thing making education fair and unified - but when your ex education minister resembles a potato with glasses, and the new one has the job because she though about being a teacher once for five minutes whilst looking to buy a pet hamster, you can see why there may be flaws.  Teachers themselves have very little say in what's being included in the curriculum and they also have little control over how it is taught as they are busy trying to tick so many different boxes just to keep OFSTED happy.  I think you will agree it is daft Teachers are not being allowed to just 'do their jobs' when they are the ones with you guys all day, knowing how you tick and what they need to do to motivate you and help you learn in a interesting way which sticks.  Sadly the Government thinks that the solution is not to trust the teachers (cause that is a stupid idea obvs)  but to add more tests and measurements to gauge if you are learning the things the teachers have little time to teach you because they are now so busy testing you!

I do not want you believing that your worth as a person is based on your score sheets, what table you sit on in class and how quickly you recite your times tables.  Yes, education is very important and we are so so lucky to live in a country where it is free and statutory, you do need to know basics on history and English and maths and science and  you do need to know your way around technology and how to code in today's world, but you don't have to be the best at it to succeed out of the school gates.  It is fine not to want to be a Dr or a lawyer - it is fine to dream of being a gardener or electrician (I don't think you get told this enough)  not everyone is academic, just as not everyone is practical or sporty... and that is OK.

Having different strengths is OK, this is the bit I think the education system has forgotten.

You are not a test paper... you are you because some things interest you and some don't.  You may rock it at swimming, or you may be the best piano player in your school but spelling is a struggle and this effects your grades - remember you are not a failure, you have a given talent that not everyone is blessed with.

You may be the one people go to for support and kindness when they are struggling, you may be the one who makes people laugh and helps the younger children feel safe but still can only get up to your 4 times table by memory... your role as an sympathiser and figure people feel they can trust can't ever be taught.

So yes, work you hardest, try your best and please never give up... but when you feel like you have given everything you have and it is not enough just remember that grades do not make you... you.


And don't even get me started on the idea of a longer school day!

Keep trying,

A Mum

A paws to say thank you - goodbye dear friend

Dear F,

I can sense my edges are all faded,

That my outline's a little smudgy. 

My coat feels a little duller, 

And my paws are a little grubby.

I spend most of my time in the shadows,

Left watching as you play. 

Remembering how once you needed me,

I fear I am fading away.

I know soon I shall be leaving,

Though it is not something I want to do.

Over years I have watched you achieve and grow,
And I am so very proud of you.

You seem taller by the minute,

In height and self esteem,

You have truly been the most wonderful friend,

We made a perfect team.

The time has come where I'm so faint,

One morning when you wake,

You will no longer be able to see me at all,

Your trusty Cat in a Cape.

It will be as if I was never there,

I will just silently depart.
And as the echoes of my paw prints fade,

I will pray you keep me in your heart.

And as I leave I will not be sad,
I will hold you dear and true.
You are a miracle, a wonder, the best of the best,

It was an honour to be friends with you.

A you grow older, telling childhood tales,

I will be bless to know there I will be.

As you remember the laughter, adventures and fun,

When it was just Ginger Cat and me.

Much love

Ginger Cat

xxx

(in the video he also mentions Stompy, who was a monster who visited for a few weeks!)

Mothers Day - it's the little things

Mothers day is a funny old badger.  admittedly it is lovely to wake up with some level of expectation of a little help (unless your small one accidentally loads the Sky remote in the dishwasher or feeds the cat Ready Brek) but I always think that the heavy TV campaigns and the glossy, not so subtle Magazine adverts rose tint what can be a really tough day.

Though it is nice to think just for a second, that someone does appreciate you washing poo out of the carpet, stemming the nose bleeds at 3am and for simply not loosing your shit after helping do the same maths homework page for the past 3 months. It is even better to know you have a bonifide 100% excuse to be a tad lazy because it is printed on the calender (even if you know that no one else will lift a finger and you will work twice as hard tomorrow!)

It is an each to their own kind of day stemmed from tradition; but now we are a generation of click happy parents and it is so easy to use social media to show what we have been bought, to share videos of proud children delivering homemade cards and to pop up Instagram photos of the snot filled toast that has been dropped on the carpet 4 times before it appears as 'breakfast in bed'.  But I wonder if maybe, maybe we should keep some of this new age 'like and share' just for ourselves.  

We have forgotten that having something just for you makes it even more special than telling a computer screen how lucky you have been.  In our tech happy world we can be so eager to show others, to follow the trend or join the hashtag, we forget to think of the impact this day has on others.  

You never know if someone on your friend list is desperate to be a mummy and is struggling. Someone may never have the chance to become one... and it hurts, someone may have almost been a mummy this year but it never quite came to be.  Maybe someone feels they are not doing they best and suffering PND and the pressure to be perfect is just too much.  Maybe you have a friend struggling to come to terms with a child's diagnosis and this day makes them feel a failure, or it could be the first Mothers Day for someone without their own mother or indeed their child.

Maybe it is time for a little solidarity - that we keep a bit back, ponder if you really need to before listing the days events, showing the menu of the pub you have been taken to, or tagging your family to show their friends how they have truly nailed it this year.

This Mothers day you will find me at home, phone locked in a drawer.  I shall be hoping not for gifts but for small miracles such as going for a wee without the need to be shown a you tube clip of a cat or a drawing he did of a Viking Rocket (I kid you not!)  I shall be hoping that someone realises that the washing machine ON button is not worked via finger print recognition (this also applies for the iron) and that we do not own a Wallace and Gromit type 'bed making' device and that others can make them, after all it is always the little things that make a big difference...

And in that manner of thinking this Mothers day of course be proud, be grateful and feel so very loved, but maybe hold a little back for yourself... not only will the memories be extra special but a little thoughtfulness might make all the difference to someone you care about.

Rare 2016 - Not just a syndrome

Just another young man enjoying each day,

Oblivious to the label that has been thrown his way.

Undoubably stubborn, the rule book has gone,

Breaking all boundaries, singing his own song.

Endevouring to be the best he can be,

Running and dancing - happy to be free.

Talking and reading, we watch his world grow.

Sitting pen in hand with drawings ready to show.  

Yes he is rare, but Joubert is just a small part,

No it is not who he is, it is not what burns in his heart.

Dreams and ambitious, hopes and goals,

Real friendships and adventure fill up his soul.

One not to be told, but to show them he can,

Motherly pride for a charming young man.

Enigma and wonder, the calm and the wild,

       he is not a syndrome... he is simply a child.

A tale of being back to front

"I know a man whose back to front,

The strangest man I've seen.

He can't tell you where he's going,

But he knows where he's been."

SPIKE MILLIGAN

Spike Milligan has always been one of my favourite authors (I knew most of 'Unspun Socks from a Chickens Laundry' off by heart at the age of 9) and because I can be a sentimental old fool a treasury of Milligan's books has been sat on the dudes bookshelf for years, completely untouched just quietly waiting.  Last week he found it and I smiled as he howled with laughter at the 'Ning Nang Nong' before stumbling across this poem which also happens to be one of my favourites.

Reading it back now it feels odd that something that had been such a big part of my childhood now seemed to hold new meaning, not only that the enjoyment of these words has passed on to the smallest one but also that this verse seemed to sum up my first years of Motherhood to a tee. 

For the first 4 years of his life the dude was undiagnosed, we never really knew where we were going - it felt we could just look at where we had come from.  There was no plan, no route, no path...  just a reminded that if you look back 2 months ago he could not hold a spoon, so that's progress!

I try not to think too much about my first few years of wearing my mum hat.  To this day I talk about it light heartedly  to both professionals and friends with a 'can't change it shit happens' attitude which we all know is BS.  The truth is they were hardest, loneliest years of my life,  just trying to find where you fitted whilst loving and fearing in equal measures.  Now we have a diagnosis, admittedly rare in the disease lotto draw, but we have a path to follow and I take every opportunity now not to look backwards  - I do not want to remember or see or feel how it was.

I do not want to remember the joy of holding him those first 6 months before people were concerned.  I do not want to remember how it felt to hold my every hope and dream still unaltered because then in turn I reflect on what I feel I have lost.

I do not want to remember how hard peer birthday parties were.  I do not want to think about how I wished for excuses to bail out so I did not have to listen about how well other babies were doing whilst seeing so clearly my sons delays. I do not wish to feel my heart break over and over again.

I do not want to remember how friends went to music groups and gymnastics and swimming whilst we attended support groups - trying to find our way, naive and hopeful we could fix everything with enough time and practise.

I do not want to remember the tears and screams and kicks and flails when we had to do physio, or how the ever growing list of specialists were simply now part of our everyday as was medical vocabulary.

I do not want to recall the 6 months it took us to convince him a walker was a good thing and how hard I found it to cope with such a physical sign something was not right.

I do not wish to remember the struggle to get DLA, statements and  blue badge applications which were hindered by a lack of diagnosis.  Page after page after page of writing what was 'wrong' with the dude with no room to say that he liked Peppa Pig and sausages and giggled like a pirate, that despite everything he was a happy little boy.  I don't want to remember the emotional struggle that being so negative was in fact a positive for him long term.  I don't want to remember the tears that rolled and the wine that was drunk.

I don't want to remember the 3 times we were misdiagnosed, or the feeling of relief when we finally had an idea of what was causing his delays (even when this appeared to be incorrect) I don't want to remember how allowing yourself to feel such relief was followed quickly by guilt that you somehow felt stronger, realising that underneath it all you want or need there to be something definitively wrong with your child. 

I don't want to remember the anger and hurt and rage, the loss and bitterness that we so did not deserve this.  The fear, the brave face, the uncertainty that being undiagnosed had bought us,  the memories of being in that big London hospital which seemed so magical and wonderful for 'special' children when it was on the TV.  I did not belong there and my son definitely did not... yet we did.  

The only bit of looking back I want to remember is the moment when we were finally turned around and we were allowed to look forwards; the moment when we had a diagnosis.  Yes Joubert Syndrome is very rare but it is still a path - we could finally look forwards.

Of course I wobble and stumble and it is not all rainbows, sunshine and glittery unicorn farts it is still hard bloody work as the needs of the child do not change with a diagnosis, but I am relieved that I don't have to look backwards anymore because there is simply no reason to.  I can "la la la" my way through things and keep on walking putting as much distance between now and then as possible.

Yesterday I was lucky enough to see a preview of the schools entry into Rock Challenge (a competition where school create a short drama/dance piece and compete with other schools locally in a proper theatre) I had seen odds and ends of it as I waited to collect him from rehearsals on those cold dark winter nights, but I had not seen the finished performance.  All the way through this Rock Challenge process I had shrugged it off as just another school thing he was taking part in, another annoyance of him being tired and grumpy and the obligatory  Mum grumble about the extra treks to and from school, but yesterday once the music blared out and the kids started dancing I was emotionally overwhelmed.  In that moment when I was busy looking forwards seeing him lost in his performance, I found myself willingly wanting to look back.  I was in awe reflecting on where we had been, on how hard so many have worked to get to this precise moment whilst wondering how the hell did he pull this off?  To dance on the beat, remember moves, follow instructions, be part of a team, to be fully involved with representing the school - if I had been able to look forwards all those years ago I would never of seen this on the horizon... but here we are.  The boy who didn't, couldn't, wouldn't and shouldn't is.  And not only that he is doing it beaming with pride and joy

*insert using coat sleeve to wipe eyes* I stood there blurry eyed allowing the past to roll in if only for a brief moment and I felt better for it... it felt right to remember.

Today I don't necessarily feel lighter for looking back.  My heart seems a little heavier and my head is a tad fuzzy still filled with bitter sweet memories that I need to distance once more, yet somehow that brief look into the rear view mirror has made today, the actual real show day, shine even brighter.  I know that tonight I will be sat in the theatre beaming, with my insides ablaze with pride because that dude there, that one, the one whose eyes are filled with magic and wonder, the one who would rather be nowhere else on earth, the boy who is... I am HIS mum.  And that feels fucking fantastic!

NHS...

Hand holding
Boundary pushing,

Prescription writing,

Family missing.

Research projects,

On rotation,

Always learning,

Inspiring vocation.

Medical exams,

Continual reading,

Specialisms,

World leading.

Endless nights,

Coffee fuelled,

No breaks,

Despite the rules.

Always alert,

Trying their best,

Keep on going,

No time to rest.

Carry us through,
Our grief and hope,
With a tender smile,
Or a well timed joke.

Cannulars,

Sample pots,

Blood testing,

Rashes and spots.

Emergency cases,

Birthdays missed.

Families gone to bed,

Without their loved ones kiss.

Are we grateful?

No, the media groans,

Poor waiting times,

The people moan.

Not enough staff,

Yet no more funding,

Just keep on plodding,

Unrest now rumbling.

Just work more,

Just work harder,

Increase productivity,

Push people through faster.

You are to blame,

You are the cause,

Not the management structure,

Or budgetting flaws.

Privatisation,

Under our nose,

Services going to tender,

Or starting to close.

Years they give,

To qualify,

Driven to care,

And now questioning why?

Broken trust,

Hardline tactics,

Public blinded by

Rabbit in the hat tricks.

Ignore the spin,

The one lone man,

Who cannot care for you

when 53,000 Drs can.

We need to support them,

To keep care at its best.

And unite for the wonder

That is our NHS.

A better Mummy

A better mummy...

"What did you do at Nursery today?"
We played in sand, and used modelling clay.
"I don't like those" the small one said,
"It's ok" I replied - my gremlins put to bed.

"At your school Mum, what did you do?"
We made gloop and did things with glue.
"I don't like that" the small one said,
"That's ok" I replied - my gremlins put to bed.

"Yuck you look messy, what have you done?"
We painted with our fingers, it was lots of fun!
"I don't want to do that" the small one said,
"That's fine" I replied - my gremlins put to bed.

"What did you do today mum, I want to know?"
Well I made a cat and house out of playdough.
"I am not sure about that" the small one said,
"That's ok" I replied - my gremlins put to bed.

"Mummy your arm is grazed, did you trip?"
I fell teaching the small ones to run, hop and skip.
"I find that hard " the small one said.
"they did too " I smiled as I stroked his head.

"At school today did you read them some books?"
I did and they loved it, stories of pirates with hooks.
"I love books, I do" the small one said.
I know I replied, as I tucked him in bed.

"Do you love nursery, do they know about me?"
I beamed a smile as broad as can be,
The children know about you and why you've a wheelchair,
They talk about you and they really do care.

"What did you learn at Nursery today?"
Too much small one to find words to say,

See....................

I know now some just like castles,
Others just like dinosaurs,
Some really don't like to paint,
And some just don't like noise.

Some love pretending to be Doctors
(Though not as good as you would be!)
Some like to do puzzles,
Other just love being messy.

They have taught me there's no 'normal'
That is truer than true.
They are simply they,
And you are simply you.

And the best bit I will tell you,
Though it may sound rather funny,
Is simply playing with the little people
Makes me be a better Mummy.

It's all about *mutations, mutations, mutations*

KIAA0586.

It looks a little like a car registration, or one of those temporary passwords a website gives you when you get brain freeze and cannot fathom which of the 30 different variants of your password you need, but it is not.

Those numbers and digits are indeed a password, a code, but it is not what you think, That is the gene code where we have a fault/mutation that make us part of the X men family - yet without the advantages of cool mutated genetic powers.

That there is our faulty gene.

As much as I would like to be like professor X never missing a date or appointment because you can cover your backside in a milliseconds by reading someones mind, sadly it is not quite like that (which is a bummer, no lyrca suit for me which in fairness is probably a bonus for the rest of society!)

Instead it means knowing which part of our DNA coding is wrong.  It means knowing that you through no fault but love have triggered a syndrome.  It is being told that the likelihood of this particular gene being faulty and finding someone who has the same fault is 700,000 to 1 and it suddenly makes winning the lottery seem far more likely *reminds self to buy a ticket for the weekend*.

This is a new gene linked to our child's syndrome which has been pulled out thanks to one of the studies we have taken part in.  So far there are very few in the UK with this particular fault but as more children get processed through the DDD study (Desiphering Developmental delays) they believe they will find more and the caseload will grow as more children are screened. (we were part of phase one and the results of a new Joubert Syndrome linked Gene came through after only 4,000 of the participants had been checked).

And now that is it, after 5 years of gene hunting and before that 3 years or simply trying to find the right 'gift tag' for our child's diffculties we are there, "You have reached your destination" as sat nav would put it, and it feels very odd indeed.

A full stop.

The gene is helpful as although the case load is small so far there are things we were told to question with certain specialists and despite Joubert Syndrome having various causative genes each reacts slightly differently causing varients in effects the syndrome has (but then the way in which your genes pair up under the faulty gene also effects this too), so this is always fascinating.

Last year I went to a party, a wonderful party, where some of the guests were in the medical profession.  I remember talking to a GP about the syndrome and who was in our care team what was expected etc. and they said

"Do you have any medical training?  You sound very confident and medicalised."

And it surprised me.  Not in a bad way, but I think it showed just what this wobbly path has done to us.  We don't see it, but years around hospitals and various specialist teams changes you. I know more about genetics and biology now than I ever learnt at school - which to be fair was partly my fault as I was more interested in writing in a notebook and passing it round our table than listening to our teacher (would you listen to and willingly trust information given to you by a middle ages man who wore flip flops in December?!).

This has been such a journey and continues to be so as it is far from over.  It is a new gene and they will watch how our child develops, out of medical curiosity more than anything but it is curiosity that changes, teaches and inspires.  Our child has proved that in his own time in his own way he can do and will do anything, and that is cool.  He has made friends who defend and love him as he is and will go on to be adults with positive opinions about disability and difference that he helped to shape - they will not be frightened of it, which fills me with pride.

And as a couple I think in honesty the conversations we have had and decisions we continue to make have the potential to rip the family open, but we still stand united.  Disagreeing on an action to support your child or feeling 2 ways about an appointment, juggling hope, fear and normality is exhausting but you must resolve your differences... there is no choice.  You have to be resilient. You have to work together.

I do not think it has made us stronger than we were, and there are times when the foundations have shaken slightly,  but I think it has truly made us a Team.  We are not just husband and wife, not just parents... but decision makers, fighters, challengers, medical sponges, carers and if one half falls they are held up by the other, sometimes physically or by letting them buy yet more converse shoes and handing them a chinese menu!

KIAA0586 did this.

It made us grow.
It made us love harder.
It made us talk more truthfully.
It made us who we now are.


Faults in anything suck - washing machines, hoovers, starter motors... it is a pain in the ass when they break.  A fault in a bridge creates weakness and faults on the earths crust can turn lives upside down in a heartbeat...  but this fault, KIAA0586, this break in our DNA  has not weakened us, and our lives are not unrecognisable from most... for us this fault has far from broken us, it has somehow made us stronger.