This article talks about the SEND difficulties we all face when talking about our children and young people, and how we can come up against the judgements of others. It may be controversial to some, triggering to others – and extremely pertinent to many. It’s a personal opinion, so if it’s not one you share that’s perfectly fine – who am I to judge…?
So, what is the problem?
This can be summed up as our child’s SEND and talking about this is not necessarily a problem, for us, but it can be for many of those individuals outside of our immediate nuclear family. This includes some members of our extended families, our social groups and friends, work colleagues and employers.
However, although those outside of our immediate family may be very forthcoming with their own ‘advice and opinions’, many parents and families of children and young people with SEND feel that they are judged further by challenging these opinions and unsolicited advice. We didn’t ask for this, but we are provided with this, and are expected to be willingacceptors of this sage wisdom…
But ‘we are only trying to help’, we are told – and the guilt washes over us, as if we don’t have enough of this already, due to the perceived expectations that we should/could/must have all the answers. We have upset them, because we have challenged the ‘advice’.
Even reading this blog will make some people feel that the judged are now doing the judging, so let’s look at this too.
I read in the paper/I once knew someone/have you tried this: diet/supplement/mindfulness...
The saying ‘don’t take criticism from someone you would never go to for advice’ is a good benchmark. Here are some ‘words of wisdom’ we have, as a Team heard along our respective journeys – you may well have heard these too.
We are all on the spectrum somewhere.
Back in my day, we would have been told we were just a bit ‘shy’.
You should make him sit still, he’s just pushing the boundaries, he just needs a firm hand.
I wouldn’t worry too much, Dyslexia is just getting your B’s and D’s round the wrong way.
Being in a wheelchair won’t stop you, just look at the para-Olympics, and what they can do – and they are in wheelchairs.
You’ll get a Blue Badge!
Never forgetting ‘she’ll be okay when she starts school’.
Why do people say these things?
Often, it’s because people feel helpless and that saying something ‘positive’ will be gladly received.
Myths are everywhere, provide intriguing stories on a poor news day, are divisive and so trigger debate, and eventually become ‘fact’. Challenging these is often an ask too much, so we just ‘smile and wave boys, smile and wave’. Mostly, it’s just not worth the energy. Until …
Someone asks us about our children, and can we explain?
So, once we have asked for clarification that they really want to know, and that they genuinely aren’t going to suggest a ‘miracle cure’ akin to the Weird Sisters spell, we desperately search for ways to explain how amazing our children are, along with just how b***dy hard life can be for them, and us (and yes, it’s often a fine line to walk between despair and delight as a parent of a SEND child).
But how do we do this, without falling into the laps of those who justify their response with ‘poor you’?
We don’t want a pity party, we need understanding, our children and young people need support. Firstly though, it’s about getting those outside looking in, to step in, take the lead role – the role our children and young people play each and every day.
So:
You’re in a nightmare, that one where you need to use your phone to call for help, but the number won’t go in. You look at the contacts list, it looks more like hieroglyphics. You know how to use a phone, why don’t these ‘words’ make sense? The panic is increasing, you need help, but the phone just won’t make that call. The numbers and words are all unintelligible. The phone then needs a pin number, but you can’t remember it, someone is shouting at you to just call someone. You wake up, thank all mankind that this was ‘just a dream’ – imagine if words, numbers, memory and sequences were like this. Just like a bad advert would say ‘only they are, if you are living the life of a dyslexic’ – ‘so it’s not all about just getting your B’s and D’s round wrong way then?’
You’ve had an accident, nothing life changing thank goodness, but what’s this? You need support for your mobility? Wheelchair race anyone? Wheelchair rugby then? A marathon? How dare anyone suggest such a thing, I was utter pigs’ poo at all sport before the accident, had zero interest in sport so why now? Anyway, pushing this 15 stone body around town is exhausting enough, and shop doors are impossible, there’s no ramps anywhere and people ask the person who is helping me if I’d like a cup of tea or coffee, and others appear to give me a wide berth as if they are going to catch something. So, you don’t want to be an Olympic standard sportsperson then?
This meeting is going on and on, you’ve been sat in the stuffy office all day, someone clearly enjoyed beans for breakfast, and the ‘backdraft’ is wafting past, the light in the corridor is flickering – again, how many times has this been reported to maintenance? The fan in the corner is catching the cord of the blinds every two turns it makes, you’re trying not to count this, but you can’t help it. You could actually do with a wee, even though you’ve been twice already. Why did you wear this top, it’s really itchy and this roll neck is strangling you now. Are you hot? Possibly? You are desperately trying not to tap your pencil on the edge of the table, and biting your newly polished nails will be a waste of £40 having them done. So you twiddle your hair, and try not to look like this is a flirty move. Hang on, the MD is asking your opinion on the results he’s just been discussing, what was he talking about? You would enforce the boundaries of sitting still and listening?
It's all good, look at you, such a role model, you get on with everything you are asked, people really like you – even if they say that ‘they don’t really know’ you, ‘he usually goes out at lunchtimes, takes some time out with a book, keeps himself to himself, but a lovely chap non the less’. No one knows that you are desperately lonely, long for friends but the crushing anxiety surrounding being social and what to do/say means that you are on medication for depression – but also can’t tell anyone this so not just a bit shy then?
All day you’ve been trying to tell people that you’ve found this great new show on television, you’ve been watching it back-to-back, who doesn’t love everything about castles? You did manage to raise some interest, but not long enough to really tell people – if they would only give you a minute more, they wouldn’t want to watch anything else. ‘What do you mean, you want to watch something else tonight, this was something we were enjoying, no, I don’t agree, I think this is really unfair. Why won’t this bloody lid come off this jar, nothing is working in this house $***%## it, $***%## the lot of you. Leave me alone’. Everyone is a bit on the spectrum, somewhere?
And as for Blue Badges and being alright when your child gets to school, that one can be parked right here, and be told ‘well you don’t look disabled’…
Okay, so this may be a tad flippant, and yes having SEND is so much more than this – so we must tell people. Be brutal, if necessary, all the blood, sweat and tears.
And then, and then, shout it from the rooftops, ‘despite all of this my child is amazing, brave, beautiful, funny, rude, annoying, loving, smelly, unique in every way – just the same as yours is – having Special Educational Needs and Disabilities does not mean that they do not have the same wonderful qualities as a child without SEND. However, they deal with more than they should – more than they can often manage, more than we can often manage, but we do – so please keep that advice to yourselves – unless we ask for it. And please, just think of all that is going on behind the scenes, behind the masks, because we too are just like you, and just want to be mummy and daddy, without all the answers, just getting by the best way we can.
We are, and always will be, Stronger Together.
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