Six things NOT to say to parents of children with complex needs

16 February 2019  |  Tamsin Kingsley

Before I start I just want to acknowledge that I don’t mind at all that these things have all been said to me... almost all have been totally well meaning, and most haven’t caused any upset or annoyance. I’m pretty sure I’ve said all of them to others at some point, but the last two years have helped me to realise that there are better and worse ways to phrase things. It may well not be the same for everyone, but these are all things that I’ve sometimes not found the most helpful. I’d love to hear if other people feel the same about any of these things! 

1. I couldn’t do what you’re doing / I don’t know how you do it.

When people say this (especially the first one) I wonder exactly what they mean...that they wouldn’t have kept a baby like mine? That they would have had a mental breakdown if they’d been through some of the situations we’d been through? Sadly, for some people, these statements are true, but I also know that most people are capable of far more than they believe. We didn’t choose this path, neither has it been easy, but most people I know would have done exactly what we have and coped as well or better. I just find it fairly awkward when people say this, as it’s hard to know how to respond. I don’t think anyone really knows whether and how they would cope with a situation until they are faced with it. 

Possible better alternatives: I admire how you’ve dealt with the situation/ Where have you drawn the strength from to keep going in the hardest times (bit deeper!)? 

2. When will they do... / how long will they have...? 

This is probably one of the most common type of questions I get asked. For Izzy, it’s things like ‘how long do they say she’ll have to have the feeding tube? When will she start eating more? But she’ll grow out of needing the ventilator won’t she?’. Basically asking me to predict the future. When you break your leg they tell you how long to keep the cast on, and maybe how much physio you’re expected to need. When you have a child with complex needs, you no longer work with the mindset of ‘getting them back to normal’; for a start they have a different ‘normal’, that simply might not look how you would expect. My main aim is not to get Izzy off her machines, but to keep her alive and well. Yes, I would love it if she could achieve that without medical intervention, but while she needs extra help I am extremely grateful for it. Change and improvement for children like Izzy is usually very slow, and pretty much led by them, with nothing much we can do but try and encourage and help where we can. There is no age by which the doctors expect her to be miraculously better, but we are hoping and praying for ongoing progress. The day when I know when she’s not going to need her feeding tube any more I will be telling everyone! So no need to keep asking. 

Possible better alternatives: How is she getting on with the tube feeding? Is it very hard to manage the ventilator day to day?

3. Guessing what’s wrong
e.g. So is it that she just can’t swallow/doesn’t like things being in her mouth etc. Sleep apnea eh? So she just stops breathing in her sleep?

This is probably the one that rubs me up the wrong way the most. If you don’t know why a child has a particular treatment, therapy or aid then feel free to ask, this in my opinion is never rude or ignorant, just interested. But please don’t guess! They are called complex needs because they are just that, and to be honest I get the impression that our many consultants and therapists don’t fully understand what’s going on. There’s certainly a lot of trial and error and guesswork in our treatment plans anyway. So I definitely wouldn’t expect anyone else to be able to figure it out. 

Possible better alternatives: Can you explain what Izzy’s sleep apnea actually looks like for her? What is it that is preventing her from eating orally? 

4. Apologising for talking about your problems
e.g. I know it’s nothing to what you’ve been through, but we are really struggling with ...

This one definitely comes from a place of kindness and trying to say the right thing, but just isn’t necessary. I think sometimes people think their problems aren’t valid or big enough to talk about to someone who appears to have ‘bigger’ problems. But certainly for me, it’s refreshing to hear what’s going on in other people’s lives, both good and bad, to help me to think outside of my own life and into the real world. I wouldn’t think for a moment that you are comparing your life to mine (unless you actually are, see next point). You don’t need to apologise and you don’t need to just talk about us and our problems; whatever is going on in your life is important to you and I want to hear about it! 

5. Comparing to another situation which really isn’t on the same level
e.g. Oh yeah I know how you feel, my daughter always gets bad colds too. 

Now as I said above, I am interested in you and your family, but unless your child had complex medical needs, you probably don’t really know what it’s like. I know it is only natural in conversation to try and use your own experiences to move the conversation forward, but some links are just a bit tenuous and actually make me feel more distance between my life and yours rather than less. Izzy has serious medical issues, so I’d rather you acknowledged that this makes her different to many other children- our life probably looks quite different to yours but we are ok with that. 

6. Let me know if I can help 

I have no idea how many times I’ve said this to people, but I know it’s a lot. But once it started being said to be I realised how unlikely I am to take someone up on the offer when this is how it’s left (excluding family and very close friends who I know I can call any time of day or night). When you offer help like this, you are putting the responsibility of deciding how you would be willing and able to help in the hands of someone who is probably struggling emotionally and often doesn’t really know what they most need. I don’t doubt how genuinely this is said- when I have said it I have truly wanted to help, but not wanted to push myself on the other person or not known in what ways I am best placed to help. But I would suggest that if you really don’t know, then simply ask ‘How can I help you? I can bring meals, offer childcare or transport’ (for example). I actually have some wonderfully bold friends and family who went one step further, like my friend Lucy who would message saying ‘I’m looking after Lauren one day next week, would Monday or Tuesday work?’, or my Aunt who messaged to ask ‘Are you in at 2pm today, there’s a Tesco delivery of ready meals arriving at yours?’. If you really are not sure you can offer something to meet the immediate needs, just do something nice- chocolate is a winner every time! Some of Dan’s work colleagues who I’d never met put together a hamper of all sorts of goodies for me, including a big fluffy dressing gown. No good for hospital as it’s like a sauna there but I’ve enjoyed it a lot since. We have had so much help but it had almost always been the initiative of the helper, not us. If you think you are able to help, just get on with it or offer a specific thing. If you don’t think you’re best placed to help someone, just send an encouraging message, a vague half-hearted offer of help isn’t necessary. And actually, a kind message can be just as helpful as anything else. 

So there you go! You may now be judging me for my terribly ungrateful reaction to people trying to make conversation, find out about our lives and offer help. That’s ok, I’m slightly judging myself too but just wanted to be honest about how certain comments and questions come across. Does anyone else agree (or disagree) with any of these, or have any of your own to add (not just to do with complex children but any other situations too)? I guess what annoys each of us is so varied, but maybe there is some overlap; I’d be interested to know. Perhaps you can help me to annoy you less too!!

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