Wednesday, 11 March 2015

when looking on the bright side is a negative thing

Smiler's 'Child in Need' review is due this month, and his social worker emailed me asking whether there are any reviews or meetings pending in school that she could double up with to get the breadth of information needed.  He doesn't have anything else due, but even as I read her words my knee jerk response was to say no no matter what, and have it at home, because - and I know this sounds awful and goes against so much of what I say about Smiler - school are so positive.

Funding within social care in Bristol (and pretty much everywhere else in the UK) is tight, and - rightly in my opinion - focused on those with the highest level of need.

School look on the bright side.  They focus on the progress that he has made, the things he understands now that he didn't a year ago.  They look at him and see the laughter, the thoughtfulness, the desire to please.  They swell with pride when he correctly counts three apples; when he tells them it is the dentist who he is going to show his shiny teeth off to tomorrow; when he says his new jumper is green.  They don't look at his difficulty in holding a pencil and think of their thirteen year old sitting writing out her homework.  They don't support him to stand from his chair and note how unable he is to control his arms and legs, to balance.  They don't notice that while they understand what he's telling them the new school nurse isn't getting a single word of it.

And that is what he - and we - need from them.  We need the people around him to recognise his progress; to encourage him to develop his independence; to celebrate his achievements.

But - and this is my fear - if the social worker and the class teacher have a conversation, will there be translation difficulties?  When the class teacher (who is absolutely lovely by the way, calm, measured, friendly, genuine) says 'Smiler eats his lunch independently now', what will the social worker imagine?

I worry that what she infers from this is that he sits up at the table with his classmates, a plate of food in front of him, eating.  In fact, Smiler has a designated member of staff who sits with him while he eats, because he has a tendency to choke, as well as overfill his mouth which can lead to vomiting and aspirating food into his lungs.  He is offered a choice of dishes, and he indicates his preference by pointing, signing and using words.  The meal is put in a sloped dish, cut into small pieces, placed on a non slip mat in front of Smiler and he is given a spoon or sometimes a fork.  He is encouraged to fill the spoon himself, but the adult with him will step in as necessary, reminding him to pause, checking his mouth is empty of food before he takes a sip of water, making sure he puts down the spoon before reaching to pick up his cup, repeatedly placing the spoon in his hand and stopping him from eating with his fingers.  When he is tired or has choked or seems to be particularly struggling with his coordination Smiler reverts to mashed food, fed to him by an adult to prevent him choking or aspirating, but this happens much less than it used to - maybe five or six times a year instead of five or six times a month.

When school staff explain that Smiler eats his lunch independently, this is independence is in relation to children who are tube fed, or always fed by an adult, a spoonful of pureed whatever at a time.  I worry that when the social worker hears independently, her understanding won't have that context.

The clash of perspectives here create a confused picture.  The positive view of education, with recognition of his progress and optimism for the future sits uneasily alongside the long long list of his struggles and needs in the social care review.  And with the transition to Education, Health and Care Plans (EHCPs) pending, these differing views will need to find a common ground.  Smiler probably won't be switched over until 2017, as the process is being done a bit at a time,  but I'm already dreading sharing a room with professionals who look at Smiler from such different viewpoints, through such different eyes.  The people who are involved in separate aspects of his life have such wildly differing aims, and so have over time learned to adjust their perspective because of this.  

We do the same, as his family.  Someone asks how he's doing and we tell them he's fine, even though we were in A&E last week because he needed a CAT scan after a fall to check for head injury; he has an appointment next week to discuss surgery on his feet; he woke us up three times last night for no apparent reason; for some reason at the moment he's afraid of a bush in the back garden; and he keeps saying "anada" and we have not been able to work out what this means.  But for Smiler, this is fine.  There is always a recent A&E visit; always another anaesthetic on the horizon; always a decision to be made about meds; always some indecipherable word.  And because these are always there, you develop a kind of situational blindness - you unconsciously (or mostly unconsciously) ignore these looming possibilities, you have to otherwise you wouldn't have room in your brain to deal with all the day to day stuff.

So how to broach this with the social worker?  There are no meetings at school that his review could be combined with, and I guess by the time Smiler switches from a statement of SEN to an EHCP in 2017 the social workers will already have been in plenty of meetings where they will have encountered this.  Do you struggle with managing the different views people have of your child?  Do you think it just comes with the territory, or do you find it difficult to hear those less positive thoughts?

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