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.

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.

Einstein didn’t talk ’til he was 4

 

My friend’s mother’s uncle didn’t say a word – not a word until he was 4 – and now he’s a brain surgeon.  And did you know Einstein didn’t talk until he was 4?

Excuse me for a moment whilst I bang my head against a brick wall.

Well guess what?  D is four now and he still isn’t talking.  He hasn’t suddenly overnight progressed to full sentences on string theory.  In fact the more sounds he makes, the more chaotic and disordered we realise his speech is.

The last 4 years have been a sometimes very lonely place as a parent of a child with a ‘hidden’ disability.  It’s like we’ve had to wait for the rest of the world to catch us up.  Now he is older and in school, his problems are much more apparent – even to the casual bystander.  Learning to talk for him is going to be a constant and uphill struggle.  It’s something he is likely to battle with for the rest of his life.

I know people were just being well meaning.  I know people just want to reassure you and be sympathetic.  I tried to understand that, but it was very hard and you have to develop a teflon coated skin otherwise you can see hurt where none is intended.

But then I would come across a rare soul who just got it.  Who didn’t invalidate how I was feeling in anyway.  And it was’t until much later that I realised that this was the difference between sympathy and empathy.

Sympathy may show compassion – but it can often lead to feelings of disempowerment, whereas empathy expresses an understanding of my feelings without a sense of judgement.

This is one of the many things my son has taught me.  And becoming more aware of my reactions to what people say to me, has made me much more aware of how I respond to other people – in short I have become much more empathetic to others.  Now I’m not perfect (far from it), but I have always said that being consciously aware of your failings helps you to overcome them.

Anyway there are better people than me who can explain this. Brene Brown on Empathy  But, when someone expresses a worry – stop for a moment before you respond and think about whether you have understood what they are saying and whether your answer demonstrates an understanding of their experience.

Thank you.

 

Playground snapshot

My son is 4.  He has a severe speech and language disorder and global development difficulties.  His spoken output is severely limited – possibly a hand full of complete words, and then (after 2 years of speech therapy and constant practice at home) a lot of mostly prosodic but unintelligible utterances.  He has an extensive signing vocabulary, but because of difficulties with motor control – you really need to know him well to understand them (oh – and know Makaton as well!).

Consequently he struggles greatly with communication and making friends.  We have put him in our local mainstream school because we believe it to be his best way of making and maintaining friends.  He has made an amazing start to his school year.  He has the most wonderful learning assistant who is truly responsive to his needs.  He seems happy at school and the home school communication book goes a long way to ensuring I know what he has been up to so I can chat about his day with him.  We have had a good first update meeting on his progress and the actions that they have in place to support him.  So all in all everything in principle seems to be working fine.

So why do I still feel that gnawing pit of anxiety in my stomach everyday when I take him to school?

Yesterday, I had to pick him up early from school for a Dr’s appointment.  All the children were out in the playground.  I stood on the upper deck looking for him and then I spotted him.  He was stood alone. Passively just standing there whilst all the children ran, shouted and played around him. He was unresponsive to everything that was happening around him, still and silent, with the blank look he has on his face when his environment has switched him off. Then he turned and saw me – his entire demeanour changed and he ran his daft lolling run towards me and put his tiny hand in mine.  The change from marble statue to my warm emotionally responsive son was electrifying.

I know it’s still early days in school and he needs time to settle and time to build friendships and relationships. I don’t know if this is happening everyday or this was just a snapshot in time.  But I just can’t get the image of him in his bright orange coat – stock still in the melee of the playground – out of my head. And it makes me sad.

 

The smallest things

Yesterday at school,  D let a dentist put fluoride on his teeth. This seemingly small and insignificant thing actually marks a huge step forward – and is the result of 3 years of teaching him to open his mouth and let us brush his teeth. He has gone from completely refusing to open his mouth – culminating in actually physically having to pin him down nightly and making him cry so we could get access to his teeth. Followed by months/into years of a gradual process of desensitising him and teaching him.
This is just one of the things he finds difficult.
I’ve shared this because sometimes it’s hard to put into words the challenges we face as a family with D. Each little thing seems by itself petty when you’re trying to explain to a friend why you haven’t been in touch, to a tutor when you have to hand in an assignment late, to family when we aren’t always responsive to their needs.  Delete as necessary – ‘I’m sorry I didn’t call/haven’t been in touch much because I’ve just been utterly exhausted from trying to get my son to brush his teeth/get dressed/eat his dinner.’ Sounds daft – no?
But yesterday – when he so very proudly handed me the aftercare sheet from the dentist – I cried. I cried because it was symbolic of the journey that we take with him everyday, It was symbolic of the love and care that surrounds him everyday, and marks one of those small turning points that makes you realise that all the effort is so very much worth it.