The life I never expected

Way back... Way back when... Way back when I didn't know how disabled Hugh was or would be... Way back when I didn't realise how destructive his seizures were... Way back when I thought the doctors could fix things... I thought,  I thought that once we'd sorted the epilepsy everything would be better, I thought that once we'd sorted the epilepsy I'd have to struggle to come to terms with having a child that needed to go to special school.
I didn't expect to have to come to terms with having a child that would be unlikely to live past his teenage years.
I didn't expect to come to terms with having a son that hardly knew I existed.
I didn't expect that, even once the terrible times had past, the devastating consequences would remain.
Hugh's epilepsy has robbed him of a future. Hugh's epilepsy has robbed us of the child he might have been.
His really bad seizures are less often than they used to be, And for that I am grateful, But they cast a long shadow, And I ne…

How To Talk To A Disabled Child


There are many people who still don't know how to, or are too scared to, interact with a disabled child. So, I thought I'd write a post to help explain what to do. Having taught a multitude of children with varying degrees of disability over the years and then having had my own child with profound and multiple learning difficulties, I thought perhaps I could offer a helpful insight in how to interact with disabled children and show it's really not that scary or difficult after all. 

At first this post was going to be all about how I understand it can be difficult to talk to Hugh as people don't always know what to say or what he understands. I was going to explain that children with English as a second language or very small babies can't always understand what you're saying but that you'd talk to them nonetheless. You wouldn't ignore them. I thought about explaining that Hugh likes you to hold his hand while you talk to him or that you should wait a bit longer for him to respond as it takes him a while to process things and that whilst he won't answer with words he will answer with smiles. If you watch him you will know he is listening.  

But then I thought that holding hands with another disabled child is actually a real no no- some children hate to be touched. So, I wondered how to include that too. 

Then I realised I was making it all far too complicated. So, I thought I'd make it simple.

Here's my very basic guide to communicating with a disabled child:

Regular* child (*typical child, typically developing child, neurotypical child - use as you feel appropriate. 'Normal' child doesn't tend to be looked on favourably though)
Imagine a child: your son/daughter or niece/nephew or grandaughter/grandson or your next door neighbour's kid, or little Timmy from up the road or that girl standing behind you in the queue in the shop.

How to say hello: smile, say 'hello (insert name if known)'


Disabled* child (*special needs child, child with additional needs, neurodiverse child etc you know which words NOT to use here!)
Imagine a child in a wheelchair, or a child that doesn't make eye contact, or a child that struggles to stand still or maybe a child that flaps his hands or a child that makes unusual noises.

How to say hello:  smile, say 'hello (insert name if known)'


And that's it.


You see, what it boils down to is that they're just children, regardless of whether they travel on wheels, flap their hands, refuse to look at you or make unusual noises.

Hugh might not say hello back, but if you give him enough time he'll smile. 

Just say hello. 






Comments

  1. LOVE this post. So true, and yet it's also true that people can get a bit scared, or not sure what might offend/upset... so it helps to have the obvious spelt out! A gentle reminder is always good :)

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    1. Thanks Steph. I think that's it - sometimes people are worried about doing or saying the wrong thing.

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  2. Hear hear! Simple and so true. Thank you so much for linking with #spectrumsunday. We hope you join us again.

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  3. Yes, yes, yes! I admit that, even though I have multiple disabilities myself, I felt awkward at first interacting with my fellow clients with profound learning difficulties at the day center. However, I feel much more at ease in their company since just overcoming my awkwardness and saying "hello". In fact, once it became clear that I too would benefit from sensory activities (that are normally done with PMLD people) rather than industrial activities, my staff asked if I could meet the most profoundly disabled person in the sensory group. The reason wasn't her disability but the fact that we enjoy the same activities.

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    1. Prior to having my son, I too would have found it intimidating. Your point reminds us that it's important to notice the similarities between us all rather than the differences. Thank you.

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