Playing the blame game: the guilt of SEN and label-seeking.

I’ve been reading Karen Broomhead’s paper on blame, guilt and the need for labels, & reflecting on my own experiences. Karen discusses the differences between having a BESD label, compared to other SEN where parental and professional perspectives are concerned. These perspectives are going to influence home-school relationships, possibly as much as SEN/non-SEN relationships. Any of us that have children with SEN know that we are treated differently to other parents. There’s 3 years between my two lads, so I’d already done 3 years of parent-teacher meetings before youngest started school.

I remember clearly the day I went to have a meeting with the headteacher. My son wanted to sit on his chair, but put his feet up on it too. I don’t allow that, seats are for bums not feet. I hate seeing kids crawling & jumping over ‘public’ chairs, bouncing on the sofa at home is fine though, all part of the joy of childhood! Anyway, I kept stopping our conversation to correct my son & after about the 6th time, she said ‘oh that’s ok’. No it’s not. You start as you mean to go on. My son would be reprimanded if he did that in class, so he shouldn’t be allowed to do it in the headteacher’s office, should he? Does that make me a ‘good’ parent or a ‘bad’ one?

I’ve never felt any blame for my son’s SEN or for his diabetes come to that. We have no idea where the diabetes came from. He was quite ill one Christmas, which may have been the trigger. Apparently, if you have the genetic components, it’s a matter of time before the switch is flipped & that often happens after a decent dose of a bug of some kind. The immune system attacks the bug but forgets to switch off and turns on the pancreas, killing a specific area (the beta cells in the islets of Langerhans). He started drinking and it made me uneasy. It was a week before we got to see the doctor (didn’t realise it was an emergency when we booked), by which time I said to hubby, if the GP doesn’t do anything, take him to A&E. I sent them with a wee sample & the GP phoned the children’s hospital straight away & son was admitted. It was the Easter holidays. The next day the specialist tried to instil in to us the seriousness & chronic nature of the condition. I laughed & said to the puzzled man that my son already had a chronic, life-long condition so life was never going to be normal for us anyway!

Karen’s paper suggests that those parent of children with conditions such as Down Syndrome don’t blame themselves, seeing it as ‘an act of God’ or similar. It is a medical condition that they had no control over, just one of those things. Do I feel blame for son’s diabetes? No, Norfolk is the UKs capital for Type 1, one of our local MPs (Dr Ian Gibson) infamously said that’s because we’re a bunch of in-breds! His point was, Norfolk people tend to remain in the county so the gene pool is less diluted. Good science there. Apparently Denmark is the world capital, so maybe the (diabetic) Vikings landed here!

What about the other stuff? Karen defined her BESD group as ADHD, ODD & Asperger; her non-BESD group involved any SEN that did not involve inappropriate behaviour; visible SEN with inappropriate social behaviour & classic ASD. Essentially, these two groups were ‘visibly SEN’ and ‘hidden SEN’. In my experience, it is the parents of children with hidden SEN that get the socially hardest time. Karen cites Sher’s (p14) definition of blame as being the failure to conform to some moral standard. Karen comments on the propensity of society to blame parents for a wealth of societal problems, including falling school standards and anti-social behaviour. It certainly seems to be what’s always in the media carrying the brunt of the Ofsted/government’s comments & guidance for effective schooling. While parents are being blamed with one hand, teachers are blamed with the other for allowing such behaviours to play out in the classroom. Recently, new government guidance on excluding pupils appears to have completely ignored pupils with SEN – or perhaps more specifically, those types of students forming Karen’s BESD group.

Before I decided to do my PGCE, I spent some time in school classrooms, both in my local primary when my boys were there & in a neighbouring village primary. I also spent a year doing supply teaching covering a variety of Norfolk primary & secondary schools. One theme throughout all schools remained constant – blame assigned to the pupil – ‘oh, he can stop that if he tries’, ‘oh, the class is so much nicer when he’s not here’, ‘his parents need to take him in hand’ and so forth. I never heard any discussion regarding how a teacher may improve the situation for the student. And why, of why would you put the child with ADHD on the carpet right in from of you – and everyone else in the class? Let them be at the back, given them a stress ball/task/anything but make an example of how ‘naughty’ they are to the rest of the class.

Karen quotes a teacher:

‘. . . parents are responsible because the children have no boundaries, they live chaotic lives . . . so to that point of view the dysfunctional aspect, the no boundaries then they are responsible’.

(Jean, teacher at BESD school) (p17)

What hope is there if this is what our kids’ teachers think? The opinion wasn’t universal though, as my experiences were. Some professionals think that BESD was a far more complex mix of nature, nurture and environmental factors. Phew, I can breathe a sigh of relief now.

Does the blame that parent’s feel when their child’s SEN isn’t obvious cause them to seek out labels? Karen thinks so, as a way of demonstrating that their child has something biologically wrong with them & that their child’s behaviour wasn’t because they were poor parents. Even so, gaining a label didn’t relieve them of their guilt. I don’t think it’s surprising given the following comment:

‘. . . as soon as their kid has the label of ADHD, that absolves them of any kind of blame for any of their behaviours, because they have a condition or a syndrome . . . it can be used as an excuse for poor parenting’.

(Jenni, teacher at a BESD school) (p18)

Good grief, where’s the whips? Flagellation anyone? How can parents not blame themselves?

Luckily there are a number of professionals out there that recognise that some students struggle badly in the classroom, that their environment (and the teacher’s own attitudes) compound the student’s issues. Some differentiate & accommodate the needs of all students without the need for labels or blame. It must be a whole-school, positive ethos and not negative staffroom discussions. Professionals need to stop blaming parents, because it seems, parents already blame themselves enough regardless of whether or not they have a label for their child.

Going back to my son’s school, the headteacher’s attitude would have encouraged poor behaviour in my son, not me. When she left her replacement was worse. I saw the way a poor lad (whose family life was a tad iffy) was treated, so did my son. My son, having been brought up with impeccable manners & excellent behaviour, could not understand why adults were so downright mean. The lad wasn’t allowed on school trips or school fairs unattended. When he threw a stone at a window, he was rugby-tackled to the ground (so my son said). He was half the size of the headteacher, how was that necessary? My son was traumatised – what did the other lad learn?

Other than a school or two in Suffolk, I’ve not observed or taught in schools outside Norfolk. How is the picture elsewhere? All I know is that:

  1. BESD is a very complex mix of allsorts in varying degrees
  2. Professionals should spend time and energy promoting positive outcomes, with the help of families
  3. I refuse point blank to treat any student or family as having less worth than another
  4. I will continue to improve my knowledge & teaching practices
  5. I was never a bad mother, I certainly was not to blame for my son’s SEND, nor his subsequent refusal to return to an institution that promoted such bad attitudes.

Oh, and a final note – it’s late and I haven’t proof-read this before publishing!

Addition

Do I feel I am blamed, or do I self-blame for my son’s SEN? No, I personally don’t feel any blame. To me things tend to be pretty much black-and-white. The human race is neuro-diverse and I’ve always kicked against ‘the norm’. Punk was a highly exciting event for me, back in ’76 when I was 11. It allowed freedom of expression & even at that age, I was a keen dressmaker! Having children elicited those same excited feelings. My lads are brilliant, very different but sharing the same interests. My youngest though was so fascinating. Did I actively seek out a label as Karen suggests? I’m not sure, I certainly didn’t for any ‘vindication’ reasons. It was more a case of – we had a hospital appointment for something else & when asked how he was in general, I listed a series of things and said ‘I believe he is X’. We got a referral to a paediatrician who confirmed my diagnosis a couple of years later.

My son never did the proto-declarative thing when a tot in the normal way, if he wanted something up high, he pushed a chair across the floor & got it for himself. The only pointing he did was in a supermarket isle at the notices overhead. He wanted to know numbers & words. He was a toddler. It was clear he was reading by about 24-28 months, and yet he couldn’t talk. I didn’t want to know ‘what was wrong’, I was saying ‘this boy is different, he shouldn’t be doing these things at his age’. That kinds sums up his early years, totally not age-appropriate. He tore up & threw away textbooks on development & made up a new one! Should I feel blame? No, fascination is the right word. Did I seek out a label? No, I told the professionals myself.

How about hubby? Katherine Runswick-Cole in her paper (I commented on in another post) says that the father’s voice is too often absent. Well, hubby did try & sink in to the ‘why us’ role, but as a workmate said, ‘why not you?’ He changed his mind set from, ‘why not me’ to ‘better me than X or Y’ [generally those that were making a pig’s ear of bringing up their own ‘ordinary’ kids].

It’s a shame, I think, that Karen used the term BESD due to it’s negative connotations. I personally would have preferred ‘visible SEND’ and ‘non-visible SEND’, but I suspect they are not universally liked terms either.

Reference

Broomhead, K (2013) ‘Blame, guilt and the need for ‘labels’; insights from parents of children with special educational needs and educational practitioners’ in British Journal of Special Education Vol 40, Issue 1, pp14-21

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