I want to ride my bicycle

It’s as easy as riding a bike.

Well when you think about it riding a bike isn’t actually all that easy – especially if you have any kind of motor co-ordination issues.

You need to be able to:-

balance
stop
co-ordinate stopping and using your brake
co-ordinate using your brake and peddling and turning
be aware and responsive to the changing environment around you
get your brain to tell your hands and legs what to do at the right times

All a big ask for a brain that is a little wonky.

But my little boy has grit and determination in spades.  And he wanted a big red pedal bike just like his sisters.  So we put a plan in place to work towards that goal.

Phase 1:  Learn to scoot (this took a long time!) – to build balance and awareness

Phase 2:  Practise peddling on trikes (this took quite a while as well)

Phase 3:  Balance bike (D was 5 by now) with brakes – almost daily practise in the local parks and school runs

Phase 4:  Bring it all together for shiny red bike on 6th Birthday.

Result – a (very happy) little boy who is now mobile on his Big Red Pedal Bike. (if still a little wobbly at times 🙂 )

There have been multiple bumps and scrapes along the way.  His shins have taken a battering and his knee caps have borne the brunt of many falls.  There have been many tears most easily fixed with a quick cuddle. But he has got back up each time, got back on and kept going.

Watching him and his sister cycle together around the local park led by our ever ready dog brings a feeling of such immense joy and satisfaction.  For D, in a world where we have to talk about all the things he can’t do with monotonous regularity, here is proof of just what can be achieved with planning, patience and practise.

Ride on.

Do they talk the same language?

So you sit in a meeting.  Some things are decided.  Some words are used. A report is written.

Communication.
Speech.
Progress.  The list could go on.

A few months later, you’re sat in another meeting.  You hear and use the same words again.  But you feel like people are talking past each other.

You receive a report from one professional which is open to interpretation by another.  What does ‘total communication environment’ really mean after all?

Gradually over time you come to the realisation that although you are all using the same words – everyone is attributing subtly different meanings to those words.  After all a speech therapists understanding of communication is going to be very different to that of a teacher and different again to that of a parent.

You see when I say ‘progress’ to my child’s teacher – what I think I’m saying is ‘how are getting on at the job of educating my child’ but what I think they hear is ‘you haven’t accepted his learning disability and still think he’s going to go to Oxbridge and can’t you just be happy that he’s happy’ (ok – there may be a little bit of projection there but I hope you get my point).

Oh the beautiful irony of communication breakdown when talking about communication.

So I’m trying to find ways to make it easier but it’s hard.  You see people are convinced they all speak the same language.  They can’t see how our individual experiences load our meanings of words. Checking understanding should be a key element to all communication.  Maybe it would go someway to resolving what often feels like an adversarial and combative system.

Perhaps paying closer attention to the language could be a powerful agent for change.

The sweet sound of play

It’s Sunday morning and I’m writing this whilst D is playing downstairs.  I can hear him chattering to himself whilst he makes his trains go choo.

This is such a big step forward.  More than a step – it’s a huge gigantic humongous gargantuan leap.

You never think when you have children of the things you take for granted.  The developmental steps that you just assume they will take.  That whilst you know play is good for children – you have never really given much thought to the why.  And you never imagine having a child who doesn’t ‘play’.

He did play – just not in a way you would expect. He has always loved being outside – getting a dog was one of the best things we ever did.  So most of his early play involved being outside.  Mastering his scooter, then his balance bike.  Learning to overcome the limitations of his coordination to climb trees and navigate the bumpy bike track.  These are some of our happiest times with him.  But he didn’t play at home – and rarely independently.   The play he wanted to do was usually very physical – building ramps for the balls to go down, swinging on hoops, bouncing on balls, play fighting.  But nothing that involved imagination.

You see a deficit in imaginative play is a deficit in the mind.  It means that your child’s brain isn’t functioning the way it should.  Imaginative play skills are inextricably linked to brain development.  They form the foundation of communication.  They help a child to role play and therefore start to make sense of the world.  Even before imagination, they build a strong sense of personal narrative about the real world around them.  Going to the shops, playing doctors, buying tickets at the railway station.

Gradually over the last few years we have worked on these skills for D.  Moving from very structured and rote learned role plays, where the interactions would be the same every time – over and over.  And over and over.  And over and over.  The same thing every time – until you wanted to scream internally with the boredom of it all.  Gradually he would let you change something – maybe letting the train go to Grandma’s instead of the shop.  Slowly, very very slowly things started to change.

For a very long time the only books he would read were a very small number of mostly factual picture books.  The same books over and over again. Read in the same way, with you making the same observations.  It was a carefully executed dance.  There were possibly 2 fiction books – one about Chu the panda with a big sneeze and the other Tabby McTat. Both of which have been read in amounts probably getting into multiple hundreds. But we keep going – gradually introducing bed time verbal stories about his day. Talking to him about day to day stuff.    As his understanding of narrative in daily life grew – he allowed us to introduce new fiction books to his repertoire. And with this increase in the number of stories – his sense of play started to develop.  He really is the boy that words built.  First though vocabulary and then through the power of the narrative structure.

You see I believe in the power of the story.  It’s what makes us human.  The ability to be part of a story.  We do it in every aspect of our lives.  We construct narratives about who we are and who we want to be.  It is the basic building block that underpins everything we do.  I’m not talking about losing yourself in a world of fiction or being able to create magical worlds in your head. I’m talking about even just basic things like talking about your day.  Explaining how an argument with your friends has made you feel. Stories are powerful – they construct our everyday lives.

And play is a very big part of this.  So listening to my son pushing his trains around a table whilst talking to himself about what he is doing, shows me that his brain is making sense unprompted of the stories in his head.  He’s going off piste and off script.  He’s really and truly doing imaginative independent play.  He’s telling his own stories.

And there is no sweeter sound I could be listening to right now.

WillyGate

Before I had D I was probably (in fact certainly) one of those people who thought that bad behaviour in children was caused by  ‘THE PARENTS’.  That’s right folks – every time I saw a badly behaved child screaming on a bus, pushing another child in the playground, shouting in a cafe – I would inwardly sigh and hoik my judgey pants just a bit higher.

Until those judgey pants  eventually strangled me.

My child became the one who exposed his penis in the playground.  (and in the supermarket and walking down the street and on the bus)  He had recently been taken out of nappies and suddenly he was free.

Consequently I had to endure the school run walk of shame every morning and afternoon.  No one said anything to me directly – but their disapproval was felt in other ways.  Conversations that stop when you come into view.  Ushering their precious children quickly past whilst on the school run.  Children who stop and point and proclaim ‘that’s him.’

D at this point had no concept of what he was doing.  In fact the squeals and screams and shocked faces of everyone around him caused him to think this was a great thing to do.  Cause and reaction – perfectly normal for a child of his emotional age.  But he was a 3 year old trapped in the body of a 5 year old, in a mainstream school environment.

At home we banished the problem by ‘ignoring and moving on’.  At school and out in the real world we needed a different plan  (because we had no control over other peoples reactions to him).

Luckily he had a support assistant who just wasn’t phased by this development. (The same cannot be said of some of the other ‘adults’ in the school).  And the very simple answer to our problem – dungarees!   Hastily I sourced a few pairs of dungarees and for a few months this was all he wore when out of the house.  This presented a few challenges of its own – being that we were also toilet training at the same time – but it worked.  The penis stayed put and we were all able to breath a sigh of relief.

Putting him back into normal trousers went smoothy over the summer holidays and WillyGate was over. (for now)

WillyGate taught me many things.

(1)     A barrier solution can be pretty effective when dealing with a child whose ability to reason is dysfunctional

(2)    Some adults in educational settings need to grow up and remember not to project ‘adult’ reactions into a child’s world

(3)     Working in partnership can make change happen quickly

(4)    Mainstream settings struggle with special needs children – setting behavioural expectations that are defined by their peer group – not their delayed development. (In fact I wish they were academically inclined to do the same!)

(5)   Look for the simple solutions in life.

(6)    Don’t judge other parents – you don’t know what they are dealing with.

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.

 

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.

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.