The ‘good life’ and sibling interactions

Regular followers of this blog (love you all) will know that LB’s future plans (and lack of opportunity, ‘capabilities’, ‘a good life’) are weighing heavily on me at the moment. This is causing me to examine everyday family life closely.

So. I had a meeting in London today then picked up LB from his after school club on the way back. Tom (12) was just home after playing football in the park with his mates. Later in the evening, Tom came downstairs to say goodnight. This is a new development. He no longer expects or wants us to go and say goodnight to him in bed. Half an hour later, LB was sent to bed. After a series of verbal (nudges) orders to “clean teeth, wash face, get pyjamas on” he was ready for bed (and released from our surveillance).

Then I could hear a series of exchanges. Tom was asking LB to turn off his light. This involved various prompts, all cheerful. After an encouraging, responsive exchange, the light was turned off. A further “goodnight” exchange followed. Sorted.

I started comparing Tom’s interactions with LB, with our exchanges with him. Tom, Rosie, William and Owen all talk to or with LB differently to us. As do their mates. They don’t have the baggage of the ‘special needs’ label or of growing up in world in which difference was largely hidden away, influencing their exchanges. They chat. They talk to him as a brother or a friend’s brother.  They negotiate, or adapt their chat, to accommodate LB, but it’s still chat.

I can’t help thinking that we need to learn from their chat, their interactions, their casual yet ready acceptance, if we want to allow or enable dudes like LB to lead ‘a good life’.  It’s just difficult when his whole life is framed within a ‘special needs’ space with alienating structures and processes dominating it.

Language, careless statements and exclusion

During today’s Prime Minister’s Question Time, Cameron made the statement; “We know that through the phonics scheme that my right hon. Friend the Secretary of State for Education (eh? who?) is leading on, that we can teach reading so that no child is left behind.”

No child? No child? Eh? What about all the kids that will never be able to read Dave? Wow. Excluded. Totally written out of the picture. A whole section of the population. In a statement recorded in Hansard.

I got to thinking. Does that mean that those children who will never be able to read are a different sort of child? Not ‘children’ at all. As we know it (Jim)? How could he make such a statement, particularly having had a disabled child himself?


My thoughts led me to this position; Cameron talks an awful lot of crap all the time, but in this instance, he is probably making a statement that would be received, uncritically or even unreflectively, by many. He is making a statement that would probably not raise an eyebrow if you didn’t have a disabled child, or be disabled yourself.

For parents of disabled children, and others, the exclusionary dimension to statements like this, are regular reminders of how narrow accepted types of children are. Statements like this, whether by an authority figure, next door neighbour, best mate or the person sitting next to you on the bus, happen all the time. There are children. And there are children who are erased from mainstream consideration. It comes back, in part, to Mary Douglas and festering. 

This leads to all sorts of emotions – anger, distress, rage, depression, fury – relating to the consistent, collective, careless dismissal of our children. Our children, just like any other children. Only different. It’s hard to put into words,  but it’s like not only being regularly told that your child is crap in various ways, over the years, but also  to turn round, when you ain’t expecting it, and see that once again, they have figuratively been tossed onto the rubbish pile. I don’t think people are being insensitive really. Often it’s an unintentional act or response.

There was an interesting article in the Independent today about the proposed changes to educational provision for ‘SEN’ children. This was summarised (I’m guessing) in a title created by someone other than the author, Lisa Markwell;  It’s her needs that make my daughter special. For an article to be included in mainstream press about disabled children, I always get the sense that the editor, or sub-editor, tries to cuddle it up (or snuggle muffin* it) in some ‘expected’, ‘slightly sensationalist’ language that is crap. I can imagine that people who write these pieces weigh the benefits of getting something ‘out there’ to extend awareness and understanding with a shit title that, at the same time, reinforces existing understandings and awareness. It underlines the same dominant understanding of difference that needs to be coated with a saccharine pill to to be palatable.

Anyway, I’m going to keep making visibile these instances. Probably tediously to a lot of people. But in the hope that the odd person thinks ‘Hey, Dave, what about those kids who won’t be able to read?’ And reflect on what that means.

*Thanks to Molly for this expression.

The Annual Review and Melinda Messenger

Crapholes x 10 (000). It’s annual review time. Again. Number thirteen I think…

I hate annual reviews.

For those who ain’t familiar with the system, they are (I think) the opportunity to revisit LB’s Statement of Special Educational Needs and change anything that needs changing to bring it up to date. Given that it was written when he was four, he’s now 17, and changes are sporadic over the years, it is a bit of a pointless, bureaucratic exercise. For example, his Statement still includes the report from the psychologist guy against whom I made a formal complaint that was upheld years ago. There is no proper re-visiting of any aspects of LB’s life as it is now. Just a bit of polyfilla here and there, in a bodge job worthy of a whole episode of Cowboy Builders.

‘So what actually happens?’ I hear you ask, edging closer to the edge of your seat…

Well, not an awful lot, to be honest. You can request particular professionals attend, but I gave up that process years ago when I worked out anyone reasonably relevant didn’t bother attending anyway. Way too busy doing important things elsewhere. You get some random people, like Connexion workers or the occasional transition social worker, pitching up. But hey ho.

My despondency at the process was further underscored a few weeks ago when, at a night with my ‘speshy pals’, I was told that that LB had been entitled to Employment and Support Allowance for the last fourteen months. Er, Ok. So no one mentioned this last year? What the fuck?

The bottom line is, I don’t really understand the point of annual reviews. Lip service? Tick box exercise? Well maybe it’s about time the experience of parents is taken into consideration by the Education Authority. As fellow parent @AlexaDWilson commented on Twitter, it’s a ‘lowering experience’ and we really don’t need any more of those.

So, tomorrow at 1pm, think of me. And LB.

And if anyone has Melinda Messenger or Dominic’s number, can you send them in our direction?


Update: Well. I’ve gotta eat my words this time. Still depressing, but good turn out. Connexions person and LB’s social worker were spot on. Lots of good ideas and suggestions to support him, particularly from his teacher, and a lot of laughter. Number 13 was a revelation.

Making a statement

Holyfuckingmackeral. It’s Statement of Special Educational Needs time again. The annual misery that is reading through some faux authoritative representation of LB and declaration of his ‘educational needs’.  All bullshit really.

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