What Not to Say

Being a parent is hard work, there’s no doubt about it. We could love our kids to the end of the earth and still fall, exhausted and crying, into bed at the end of each night. Every parent is just trying to muddle through the best way they know how, each one with their child’s best interests at heart.

No matter how much effort you put into raising your child, the chances are you’ve still come across your own fair share of ‘helpful’ advice and suggestions – all unsolicited of course! We bet you’re already thinking back to that one time, right?

However, parents and carers of children with special needs not only have a heap of extra challenges on top of their usual parenting duties, but they also get a barrage of extra judgments and comments to boot. These comments can often cause far more pain, and damage the confidence of someone who is already doing the absolute best they can. Fielding these comments and opinions while out and about, all the while trying to keep your head and model the perfect response to your child, can be a challenge!

Here at Eazyhold, we’ve reached out to parents of kids with all kinds of special needs, some physical, some sensory, some visible, some not, and we asked them what were some of the worst things someone had said to them. And more importantly, we asked what they would have liked to hear instead.

We know it’s not always easy to know what to say when you’re confronted with a difficult or an unusual situation, so we’ve put together a handy guide of things not to say a parent or carer of a special needs child, and some tips on what they’d like to hear instead!

Why not be the change they’d love to see in the world?

We’re not sorry, so why should you be? We love our kids in all of their differently abled and imperfectly perfect glory! We know that you’re speaking from a position of uncertainty, you don’t know what to say and you don’t know how you’d feel if it was you. We know that your intentions are kind. But when you say to us that you’re sorry, for us or for our child, what we hear is that you think our child isn’t good enough. You see nothing but struggles ahead.  Why not look instead at the possibilities and the wildly amazing things that our kids can and will do every day?

This might seem like an obvious thing to ask if you see a child who looks or behaves differently. But what if the people who love them see it differently? There is nothing ‘wrong’ with our child. Our child might have to approach things differently; our child might need more support. But you know what? We probably wouldn’t change them for the world. And if we wouldn’t change them, how could they possibly be wrong?

We know it could be worse. Trust us, we of all people know. We know so many kids that have bigger challenges than ours do, we know what so nearly could have been with our own kids. But please don’t be flippant. It’s a fine line to walk; we don’t want our kids to be put down or devalued, but neither do we want our own emotions and feelings to be brushed aside! Just because someone else is suffering more, doesn’t detract from our own worries and frustrations. Life is all relative after all and you know what, while it could be worse, it could also be a whole lot better too!

Our kids might look or act different to yours, and we know that it’s going to make your little one curious; it might even make them stare. But curiosity isn’t a crime and instead of panicking and whisking your child away in embarrassment and horror – why not see the situation for the gift that it is. You have just been handed a wonderful learning opportunity, ready packaged and good to go! Why not come over and say hi, you might even make a friend? Why not explain, in an audible voice, to your child that everybody is different and that that’s ok? Why not point out what makes them different too: “You’re right, that little girl does have one hand. But she looks very happy! What makes you different?” Instead of sweeping differences under the rug, and teaching your child that being curious is bad, why not celebrate what makes us all unique?

You should count yourself lucky. How lucky you are that you don’t have to make the choice between giving your child drugs or watching them suffer and cause pain and hurt to themselves and to others every day? Trust us, if we could find another way to give our child some peace of mind and some stability, we would do it. Oh, and while we’re here, please don’t judge. Please don’t tell a parent how you would do it differently. Luckily for you, you don’t have to do it differently. We’ll let you do you, and we’d love it if you could let us do us. If that doesn’t sink in, help yourself to our child’s shoes and see how far you get in them!

See above. We don’t need your parenting advice and if on the rare and unexpected day we do need it, we’ll ask! It’s sad that people can still often only see the worst in people. You see a child screaming on the floor and throwing stuff around the shop? Obviously that kid is having a tantrum because their parent never learnt to control them. Or maybe, just maybe, that child is struggling to even begin computing the myriad of terrifying noises, smells and sights bombarding them from all sides. Maybe your words could make or break that parent’s day. Do you want to be remembered as the one who made an awful situation impossible, or the one who parted the storm clouds for a moment with a smile and a little word of support?

If a parent of a kid with a difference tells you that their child is struggling to tie their shoe laces, don’t – please don’t – tell them how much your able bodied kid is struggling too. We know that tying laces is a challenge for most kids and even for some adults. But you know what, our kid is trying to climb that same mountain that your kid is, only ours have half the equipment. If a parent or carer of a special needs child tells you about something their child is struggling with, they’re actually opening up to you about something that worries them deeply or that they may find painful. Please don’t invalidate their fears with comparisons of your own. Just listen, and offer some support if you can, but please don’t play it down as that just sends the message that they should seek support elsewhere and they might not be able to find it as readily elsewhere as they could find it in you. This is not to say at all that your worries aren’t as valid as ours, but please make sure it’s a genuine one rather than simply trying to compare it to what we're going through.

Join the conversation!

Are you a special needs parent or carer, or do you know someone who is?

What other comments would you add to the list and what do you wish people would have said instead?

**Thank you to our guest blogger Amy Roskilly from Though She Be But Little**
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