Saturday, 26 April 2014

do's and don'ts {disability and communication}

I've had a bit of a week of it with Smiler, and the general public have not been helping.  Sometimes having a child with special needs feels a bit like being eight months pregnant - complete strangers feel they are entirely justified to share their personal expertise with you (although, to be fair, they don't tend to grope me at the same time).  There's a post in the works about the advice that I don't need, but here are a few tips to be going on with that I think apply to a number of situations that parent carers face on a depressing frequent basis.

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If my child is having a complete meltdown, screaming and kicking and crying and rolling around on the floor, I get that you might not know what to say.  

Especially if my child is fourteen.  

And I get that your toddler (or child, or teenager) may well stare, entranced by the (relatively) grown up-ish type person behaving like this.  

My personal preference would be for you to concentrate on your own shopping and ignore the spectacle unfolding in aisle nine, but if that seems like an impossible request, perhaps the following suggestions will help.

Yes, you may rise an eyebrow, or even two if you have a particularly low shock threshold.

Yes, you may tell your toddler that this is none of your business, and lead them away with a mental note to return for tinned sweetcorn once the fuss has died down.

Yes, you may look at your (ordinary) fourteen year old and think to yourself 'okay, maybe he's not so bad after all'.

Yes, you may crane your neck to look around the annoyingly tall individual in the way of you seeing what's going on, should you really feel the need to do so.

Yes, you may talk about this situation with your friends and/or your significant other this evening, if this is the most interesting thing you can think of to discuss.

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But you know what you do not get to do?

No, you do not get to walk past me and tut, shaking your head and looking disappointed in my clear complete lack of parenting skills.

No, you do not get to take photos of or video my child - this situation is not your ticket to Youtube fame.

No, you do not get to comment to the person next to you about 'some parents, these days...' while they wisely nod their head in agreement.

No, you do not get to speak to my child, in an attempt to teach him the error of his ways - trust me, if it was that easy, I'd have sorted it by now.

No, you do not get to whip out your phone, call 118 118, and ask for the number for social services (yes, this happened to someone I know)

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Chances are, the next screaming teenager or child being tube fed or baby on oxygen that you spot will not be my child - but they will be someone's.  Someone who is tired of their family being a curiosity, tired of being judged by strangers, tired of explaining.  

For the sake of that somebody and their family, please pause for just a second, and consider your next move.

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If you are that somebody, I'd love to hear what you think - have you been reported to social services recently?

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  1. People do that? Seriously?

    Aargh. I am fortunate. So far the only time an older child has had a screaming fit at me I was with 200 or so friends. And they picked up the thrown plates and scattered cutlery, and put their arms around me and it was so supportive. But I've had a 7 year old do the rolling around on the floor thing and it's pretty bad. Fortunately I'm slightly lacking in social skills myself, so I'm quite able to tell people where to take their helpful suggestions or dirty looks.

    I offer you my sympathy.

    1. Oh yes, unfortunately they do! I'm pretty good at getting rid of bystanders relatively politely these days, I guess practice makes perfect and all that! Smiler doesn't do it often, but when he goes he absolutely goes, you know? Thank you for the sympathy - it does help knowing that most people aren't thinking what I think they might be thinking... I think! Take care

  2. please tell me the comment about someone actually filming this on their phone was just a possible scenario of something that might happen ---- because if someone actually did film my son having a meltdown I would probably kill them there and then (and I am normally a pacifist) People`s ignorance and stupidity knows no bounds it would seem. I have often been called a `bad Mum` and told my son needs `a good slap` when he had meltdowns in public when he was younger (autism) He actually wrote a blog about this himself (he is 19 now) I will tweet a link to this blog to you. I really identified with what you wrote, as I am sure many people will :-)

    1. Unfortunately it is something I've seen a couple of times - it wasn't my child on the floor either time, but the first time I despatched my (6'3") husband to stand in front of them, facing at them, which was great because every time they moved so did he, and they got bored pretty quickly. The second time I got the security guard who told the person in question that photos and video were not allowed in the store for security reasons, watched (and then checked) as they deleted the video, and then asked them to leave the store, which I was really impressed with!
      My son Smiler doesn't often blow his top, but likes to make the most of it when he does. I think the car-crash just - can't - look - away thing kicks in for people - it just gets me that most parents have had a child doing something like this at some point, and then when it happens to someone else they stand there and stare!
      I'd love to look at your son's blog - Smiler has SLD along with complex health issues, and I'd love to hear your son's thoughts!
      Take care, and thank you for taking the time to comment, it helps me feel so much better to hear from others who get it, you know?


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