Wednesday 9 February 2011

Labelled With Love (Alphabet Street?)



Tall, stumpy, beautiful, minger, fat, skinny, clever, thick, odd, boring, quirky, loud, lazy, blonde, ginger, selfish, slutty, bald, hirstute.... Labels are all around. They are attributed to us to mark out our differences to the herd so that we can sort out life's rich tapestry into pigeon-holeable categories. Us humanoids are quick to judge and categorise - presumably some deep-rooted self-preservation instinct.

However, the subject of labelling kids - to willingly attach a label, highlighting their differences, to your own flesh and blood - brings a whole orchestra of tooth-sucking and "expert" (you know the type I mean) opinions! "There's a label for everything these days", "ooh people are so quick to label their children - we're getting so American"!!!!! "It's all to do with Bad Parenting" (?!!!) There are all sorts of negative articles about the stigma and damage that labels can bring.

When I was at school I can't remember any of my classmates sporting any clinical diagnoses of anything. There was always the "square", the "boffin", the "thicko" or the "weirdo". Yep - who needed educational psychologists - anyone slightly different and we just made up our own labels and stuck them on with super-long-lasting glue. Kids are pretty unforgiving. Differences scare them. Their form of self-preservation is group attack. Horrible. It makes me sick to my stomach that I might have had a part in this filthy show of human nature - I wish I could find those poor kids and apologise, be their friend, protect them.... Sigh. And what happened to them? Did a whole school career of being negatively defined by their classmates lead them to happy and fulfilling lives - god, I hope so. I hope they found their dreams and shouted "F**k You, losers - look at me in my big shiny car with my wonderful career and perfect life, you cruel bastards". But let's get real. They possibly have lives pitted with low self esteem, trust issues, depression etc etc etc. Oh how sorry I am. I just wanted to be "normal", part of the majority....not noticeably different...

Fast forward to now and most classrooms have at least one kid with a diagnosis of something: ADHD, Dyslexia, OCD, Dyspraxia, ASD - some kids even have two or more labels since a lot of these conditions go hand-in-hand - then they get a special collective label - "Alphabet Kids". Jaysus. Who knew?

So J is "labelled" with ASD (an Autistic Spectrum Disorder). High Functioning Autism. He has a Statement of Educational Needs. He gets Disability Allowance. He attends an ASD specific unit attached to a mainstream school. He gets speech therapy and occupational therapy. His label marks him out as different to "normal" kids of his age. And different he is - quirky, hilarious (his favourite word, incidentally!), scarily clever, socially inept and unable to deal with many everyday situations. His label is not debatable - he looks like an angel (when he's not constantly picking his nose!) but his "differences" are setting him apart from the crowd more and more as he gets older. However, he is in the right place, getting the right support and spends several sessions a week in a mainstream class (with support).

I have no issue with J's label and don't think I'd find anyone who does because his autism is fact. It is thankfully recognised as one of the big hitters these days. The ASD label brings much needed help and support (in some areas but not others....whole other post...grr)

It's the kids who are on the cusp of "normal" that fall through the gaps. The ones who, to all intents and purposes, can look like they're coping in a normal classroom setting. Many of the diagnoses that encompass what, on the surface, looks like "bad behaviour" are the tricky ones - this is the grey area that causes the tooth sucking debates. A lot of the behaviour looks like an exaggerated version of normal kid behaviour - figeting, bumping into things, hair twiddling, constant trips to the toilet, impulsiveness, lack of self control, too much talking, rudeness to figures of authority........ you get the idea. In a society where One Size of Education is supposed to Fit All (unless you're minted and can go Private) these Square Pegs are going to come to light. Particularly when they reach Secondary Education where teachers take no prisoners - it's all about results and not at all about individuals as far as I can gather (Shudder). This is where the debate comes in. Should they be labelled? Would a label make them feel more different or would it be a relief to them to know that they're neurologically programmed slightly differently to their buddies and can get some extra support? Would they grow out of their behaviour eventually without a diagnosis? Would a label become a self-fulfilling prophecy?

I really don't know the answer to this. I've thought about it a lot. I do wish people didn't use that word "Labelled" though - it sounds like a Stigma which is crazy considering the fact that many really successful people have/had similar conditions: Einstein - possibly Aspergers/ADHD; Mozart - possibly on the autistic spectrum/ADHD; Gary Newman - Aspergers; Stephen Wiltshire - High Functioning Autism; Daryl Hannah - mild autism; Tom Cruise - ADHD.... The list goes on. If the L word was replaced with "Recognised as being a perfectly acceptable and wonderful human being who struggles with a few areas of life and could really do with a bit of help now and again and a bit more understanding and a lot less judging" then that would be make the debate a no-brainer! To my mind - my adult mind - being different is just fine. Great, actually. I'm drawn to quirky interesting people. I love eccentrics. I've never particularly liked conforming. But kids hate to be different. So what would a label do to them? To their self esteem?

Actually, I think it depends on the individual. Differences are ok. It's down to whether those differences are causing an impairment for the child or not. Are they stressed out of their minds? Do they cry a lot? Is their work suffering? Are they getting told off a lot in class? Do they struggle with friendships? Are they being labelled anyway by the other kids? Are they angry and frustrated at home? Are they getting less and less invites to parties/playdates? If any of this is the case then, as parents, and knowing that there's help out there (and "help" doesn't always mean drugs - there's a whole host of other methods/therapies etc as well) , I think we'd be very very wrong (and cloyingly British!) to brush our concerns under the carpet and ignore the situation and refuse the label. If the child is quirky, but happy then all power to them but please please please watch out for any signs of bullying when they get into secondary school.

Blimey, it's a minefield. And here's the skinny: I know a little boy who is struggling. He says he's rubbish. He hates school. He finds it very very hard to sit still. Friendships are tricky for him. His self esteem is at rock bottom. He is hugely knowledgeable about the history of video games. His peers sometimes call him a cry baby. He has a lot of irrational fears. He is extremely bright and funny. He is very over-sensitive. He finds change very hard. He has a brother with autism. He is different. His parents don't want those differences to be seen as negatives and have started on the quest to get him some help to be happier. They have come to the conclusion that if a label will help and therefore make his life happier, then bring it on. He's a very loved, loving and totally cool kid. I should know. He's mine.

6 comments:

Anonymous said...

Hello T. You are the bravest person I know and the best mother ever (I won't even start on your writing skills - you'll blush). Just thought you should know. S x

Susan Wallman said...

This post made me sad...

But I agree with your conclusion. A label is definitely worth it if it brings with it more understanding from others, and more understanding of oneself.

Thoughts that also occurred to me: Sometimes small schools are great and nuturing, but sometimes it means that you don't get to meet people like yourself. Large state secondary schools can be scary but they can also be good because there is room for a wider variety of people.
For a lot of people, myself included, school isn't/wasn't a particularly happy place. So when you find your niche as an adult, life can be much more satisfying. The trouble is that childhood seems to last for ever when you're in the middle of it.

Anonymous said...

This post made me cheer,punch the air, I totally understand your thoughts your writing is ingenious and I love the way you have portrayed label with love....you are an incredible mother who is strong and fighting ...huge respect

Shrinky said...

Oh Kristina, I have such a huge lump in my throat right now. This incisive, balanced, deeply personal and informative post deserves to be published to a far wider audience outside of our blogosphere - I certainly hope it will be.

I applaud every single line you've written, and my heart breaks for you and your son. My eldest also needed "help" with his behavioural difficulties - in fact, that was the deciding factor why we eventually followed the "private education" route for him. We'd exhausted every other option, no one seemed to want to know. Yes, possibly coping with his autistic brother did have a knock on effect on his behaviour, but did that make his difficulties any the less? Of course, having followed the private route for him, we felt morally oblidged to offer his two other sisters the same equal opportunity. We have NEVER been "minted" (our ancient telly has been on the blink for years! I drive an old clunker of a car, and truly do lose sleep frequently over our finances), but know we are truly blessed to at least have had the option to find a solution to our eldest's (then) growing distress.

I am happy to say he is now a popular, happy adult, successfully reading Economics at Newcastle University. I fear things may have turned out very differently for him had we not taken matters into our own hands. I don't quite live in a cardboard box, we're doing okay - okay is peace of mind - whatever it takes, that's all that counts.

Hugs and more hugs to you, dear lady - I so hope you can access the help you and your whole family need - it just sucks you have to fight so hard to find it. ((x))

Shrinky said...

I've just come back for a third read of your articulate, excellently expressed article (I use article purposefully, this piece would do well to educate those who should know).

As an aside, my business went under two years after Sweet Sam came along. I went from rags to riches to (not quite) rags again. I don't entirely blame the recession, I could only keep my eye on one ball at that time, and it certainly wasn't focused on making money.

Disability sure is a level arena, it's taught me many lost values along the way. I sure am glad to have made your acquaintance, Kristina Hughes.

Treemother said...

Hello,
I cried at your honesty and your strength to keep on trying.It gives me the strength to keep on trying. My son has also recently been diagnosed with ASD.I also doubt the need for labels but sometimes welcome the expressions. I try to explain his behaviour is different when he is stressed.I also have dealt with the whispers and glares at the school gate, the comments of "bad mother" and "bad child", "don't play with that monster". That was just from the parents never mind other children's names and labels.
My son now has one to one support in an excellent main steam school and other parents comment how greatly improved his behaviour is. I smile with pride because this hasn't happened by accident. He is the same child who used to kick his teachers and self harm. Now his needs are understood he can be happy. There is hope!!
I admire your strength because I know how hard it is to challenge the labells. Keep trying and loving your children. Sh XXX