Rug out from under your feet

Sometimes – when your pottering along and think you have a grip on things – something comes along that yanks that rug from under your feet – and for a moment you really feel like you are toppling over in mid-air.

D’s school have recently sent us his latest assessment data.  This is the first assessment data they have shared with us this school year.  It has floored us to see that they have assessed him (currently Age 5) at working at level 16-26 months across most areas of the national curriculum.  I don’t really care what his levels are – but the shock was that these levels are significantly  lower than the assessment done at his nursery in last April.

This means a number of things. That he has made negative progress over the last year. That the ‘alternative’ placement the school have recommended (a language unit) wouldn’t take him. (He doesn’t meet their strict criteria.)  That he would fit the category for Moderate Learning Difficulties and a special school – sounds great until you realise that this means adjusting your expectation of your child to be reaching the end of their primary curriculum whilst their age group are doing their GCSE’s. (and I’m not prepared to accept that future just yet, based on such flimsy changeable data.) That their assessment of him is just plain wrong for a number of complex reasons to do with them equating speaking with language ability, lack of specialised support, multiple changes, inability of class teacher to connect with him, inability to tune into his use of makaton and verbalisations.

I’m tired and fed up of a system that on paper looks great – all child centred and enshrining the right to a quality eduction for all – but in practise seems to be adversarial and combative.

I am a usually optimistic person.  I want to work with the system, and in partnership with the professionals in D’s world. I thought we were doing well at that.  I don’t know how we have ended up here.  For so much of his early development I had to endure the mantra of ‘each child is different and develops at their own rate’ and I honestly was doubting my own experience of him.  Yet now I’m being told almost the exact opposite and that my assessment of his cognitive abilities is questionable and overly optimistic.  Ever feel you’re not in Kansas?

I’m angry. I’m angry at the school for not realising there was such a delta between the two assessments.  I’m angry they didn’t see fit to ask us for help and signposting on things to help him – despite countless meetings and progress checks. I’m angry that his class teacher couldn’t ask for help and that she hasn’t been supported in helping him.  I’m angry they didn’t listen to me. I’m angry that they seem to be ‘blaming’ him and his abilities. There has been a systematic failure and we now need to get to the bottom of it.  Cue difficult meetings and reviews.

So here we are.  His current school think that progressing to year 1 with them isn’t really tenable, he would spend so much time out of his class it would be the opposite to inclusion really.  A language unit in mainstream still spends a lot of time in mainstream and he is struggling with large groups and class sizes.  He doesn’t really fit the the special school criteria and without an accurate assessment of his educational profile we don’t think this is the right place for him either.  There is no place within the state system where my child seems to fit.

This is all intensely stressful and encompassing.  I want to run away from it all. I want to hide and pretend it isn’t happening.  But that isn’t going to help anyone – least of all D.  Instead I spend my time trying to read and understand educational documents and special needs case history.  Try to research the teaching methods that work, and what is best practice for a child with D’s profile.  I feel like I am trying to absorb the entirety of a speech and language degree, an educational degree and a law degree in one.  All because I believe that information is power.

Protecting your children is such a primal instinct – I want to scoop him up from this system and keep him close.  But that isn’t the right thing for him – he needs to be facing outwards not focused on me. I need the tools to support him and help him to springboard away from me and into the world.  And I want the best for him.  I want the highest of aspirations and the best support available.

And that’s what I will continue to fight for.

 

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For my dear friends on their (re)wedding day

As you prepare to catch the no 43 to another part of your life – these are a few things I want to say.

Give your love freely and be open to that love in return.
Ask for help when needed and share your joys and your sorrows.
Support each other in your endeavours and chase your dreams.
Try to understand each others needs and accept that sometimes you might fail – and that’s ok.
Continue the amazing work you do together for the good of your community and humanity as a whole, never missing a chance to stand up and be counted, continuing to challenge prejudice, inequality and intolerance wherever you see it.
Enjoy creating a home that will continue to be a source of strength to you, your family and your friends
You already know how the nature of love and relationships change over time, but learn to trust the ebbs and flows of that love, knowing that it will continue to change.

Continue to be wonderful, bohemian, unconventional and so very North London.
Drink single malt, eat quinoa and smoked tea chocolate, roast aubergines, order sushi, microwave your rice and then wash it all down with a modicum of irony.
Sing songs around fire pits until dawn and at the end of the night hug your friends, kiss your children and collapse under your duvet – together, happy and wishing the clock didn’t already say 4am!

You have both been on such a journey and you are about to embark on another.  I wish you a life filled with love and laughter, and I wish you strength for the times that are rockier than we would like them to be.

Life isn’t simple – we wouldn’t want it to be.

Good luck my very dear friends. Have a wonderful day.

 

Bluebell Woods and a Midsummer Nights Dream

Last weekend was magical.

One of those weekends where simple pleasures and family life combine to create beautiful memories.

On Saturday night I took A to the Globe to see a Midsummer Nights Dream.  It was spectacular and enthralling.  She complained loudly all the way there about how she was going to have to stand for 3 whole hours… We played the mini game on the bus, she won.  She complained some more about standing.  We had a lovely meal and a drink on the Southbank.  She complained some more about standing.  We found a great spot near the front with the other ‘groundlings’.  She continued to complain about standing – until the magic of the evening and the performance did something special.  As the sun set and the actors transported us to a magical forest where sprites make mischief with love potions,  my daughter forgot all about her poor aching 10 year old legs.  She got caught up in the mystery and beauty of the theatre around her. And as we walked back down the Southbank at night, her conversation flowed and her eyes sparkled with the wonder of it all.

The next morning bright and early we took the dog up to Goblins Wood (actually Gobians Wood – but we renamed it years ago).  This year has been a bumper year for bluebells and the woods did not disappoint.  Swathes of beautiful bluebells under the canopy of the trees.  D got to search for sticks, J (the dog) gets to chase those sticks, and A actually now appreciates the wonder of the Bluebell Woods – I wonder if she makes the connection and imagines Titania in this wood. That convergence of art and nature – doing subtle and wonderfully creative things her young head.

Then we had a perfect late summer lunch with family to celebrate their recent nuptials. (and I wish them all the very best as they start this part of their life.)

And I have the pleasure and the privilege of sharing these moments with people who mean so very much to me. A set of treasured perfect memories.

Birthday Party Invitations

D is in reception.  Every week yet another child comes into school clutching a pile of envelopes and with the help of their parent hands them around the  gaggle of children waiting to go into the classroom.  D is luckily (for now) oblivious, but I am acutely aware of what is going on.

I hold my breath – trying not to make eye contact with the parent, because if I do they get flustered and look away – and this then means a few weeks of them avoiding eye contact with me until the party is over and the cake is now but crumbs on the floor.

There are 30 children in his class – so far he has had 1 invitation (and to that Mum I am eternally grateful). But there have been many many parties.  Other parents at the classroom door tell me how busy their weekends are, how it just seems to be one birthday party after another.  They stand and chat about how little Jimmy and little Jane looked so cute as they attempted to play musical statues and chased bubbles around the room.  Normal children, doing normal stuff, learning to be part of a bigger social world.

I know all the arguments – that your child has the right to invite who they want to their birthday. It is after all their special day.  But this right to choose leads to a very insidious and subtle form of exclusion.

None of these parents are awful people – in fact the very opposite – they are good members of a strong local community – but who have no real concept of what it is like to have a special needs child in your family.

But it brings into focus just what the life of a special needs child is like in a mainstream.  They are always on the periphery. Always observing.

A parent who had struggled with moving her child from mainstream to a special school was astounded by the number of birthday invites their child now got and how more meaningful the friendships he formed became.

I don’t know what to do about D.  I can’t make friends for him.  I can’t find a way into these fast forming friendship groups.  He’s not ready for them yet.

But next time you come to write the invitation for your child ‘s party – please for one moment stop and think about whether you could play a small part in helping a little child learn to play their part in a bigger world.

Things my son does with Makaton

1  He sleep signs instead of talking

2 He makes mistakes with signing that are similar to when toddlers get words wrong.  So his sign for ‘pepper’ is the sign for ‘paper’ because they sound the same.

3 His sign for Sobell Centre is Bell House

4 His most used sign is Mummy

5 Closely followed by What? Closely followed by Food

6 My favourite sign is double-decker bus

7 Closely followed by Mmmm Yummy

8 He wakes me in the middle of the night to ‘talk’ to me – but gets upset when I don’t answer because I can’t see him signing

9 His signs are dramatic and fully expressive and often feature the full force of his personality

Memories – First books

I love to  read.  I love words and the endless combinations writers can employ to engage me, the Reader.   For as long as I can remember I have read.  The first book I can remember reading was Charlie and the Chocolate Factory.  Rapt, holding my breath – I followed every step of Charlie Bucket’s journey, rapidly turning each page. Consumed whole by the story, I felt that I was Charlie Bucket.

I wished for days, months, years after that – that I would find that Golden Ticket and be transported to a land of chocolate waterfalls and square sweets that looked round.  Even now when I open a chocolate bar – my inner child recalls the memory of that book.

My home life was difficult and in the pages of each book I read I found new and different worlds I could escape too.  I was one of the Famous Five, travelling to Kirren Island.  I joined Mrs Frisby Mouse on her encounters with the Rats of NIMH as she looked for a solution to save first her poorly child and then the Rats themselves.  I crept through dark passages with Bilbo Baggins, endlessly transcribing the runes and writing my own secret messages.  I suffered terribly with Katy when she fell off her swing – and marvelled at her resilience and how she just kept on going.  I wept with Anne when she first arrived at Green Gables, identifying with just how out of place and unsure of herself she was.  Every book and the characters in it became my friends and guides.

In the pages of those books I found me.  Looking back I can see how those characters helped to shape my own.  There are reoccurring themes of resilience in the face of adversity and difficulty.  That you as an individual are responsible for the outcome of your own life – no matter what obstacles you might face.  But also, the recognition, as in the story of Charlie Bucket – that when an opportunity comes along, you have to grab it with both hands- because you never know where it will take you.

Time slip slip slipping away

A will start secondary school in September.  There is only a short period of ‘childhood’ left.  It feels too quick, too fleeting.

Whilst I have been concocting in my head what the perfect childhood should be – I find that most of it has actually been.  And the reality is there is no such thing as the ‘perfect childhood’.  It isn’t a series of long summers punctuated with adventures and lashings of ginger beer.

Mostly childhood seems to be about frantic mornings trying to locate school bags.  Early morning trips to the shop to get milk and the missing items for packed lunches.  Lost shoes, hairbands, hairbrushes, insert random item that was needed yesterday here.  It is about snot and what’s not.  It’s about planning holidays that seem to be over in the blink of an eye – and inevitably don’t live up to the previous years holiday by dint of not being ‘exactly’ the same. It’s about worrying whether their hair and toe nails need trimming.  It’s a smorgasbord of worries, laughter and love.

But it’s certainly not perfect.

So I am going to pledge to live in the moment for the next few years.  To just enjoy being a parent and to let their childhood be what it is – a journey on the way to adulthood to which I have the utmost privilege to experience with them.