We have been so exceedingly lucky with the endless love and support we have received over the past three months since Runa’s diagnosis, and we thank everyone from the bottoms of our hearts. We know how lucky we are to have such devoted friends and family and we don’t quite know how we would be getting on without them all.
Having spoken to other families going through similar events in their lives, it seems universal that beloved friends and family will unwittingly place their feet firmly in their mouths, often without realising they have caused any upset. It’s during these ranting with other families, complaining about what this person said and what that person said, that I thought “hmm, maybe a handy little guide wouldn’t go a miss.”
It’s so easy to get it wrong. We all have at various points in our lives, myself as much as anyone else. It’s particularly easy to get it wrong when you’re speaking about a sensitive issue (and we all know there is no issue more sensitive than someone else’s child). So, with the help of a few other parents of children with additional support needs I have compiled the following list.
1. Don’t point out how the child is different.
Example: “Oh, she’s not very good at holding things is she?”
This is very unhelpful. Rest assured, as the child’s parents, we have noticed everything they are unable to do, and can name every little quirk that makes them unlike other children. If you are genuinely interested about why milestones aren’t being met, that is fine; but just pointing out ways that a child isn’t meeting the same marks as their peers will just upset the parents.
Instead try: “I’ve noticed that she hasn’t got strong fine motor skills. Why is that?” Showing interest and wanting to learn about the condition shows that you care, and this is welcome.
2. Never presume you know more about the child’s condition than the parent.
Example: “There’s a strong connection with this condition and recurrent chest infections. You better keep an eye on that.”
Every minute of every day parents are thinking about the many consequences their child’s condition can have on their overall health. At least weekly (and, frankly, far more regularly) the parents of these children will be reading articles, stories and medical journals relating to what’s going on with their child, and they will have a very wide ranging understanding of every aspect of the illness. You will not be able to tell them something they don’t already know unless you have a medical degree and are currently doing research on that condition. Sharing information with parents as though they don’t already know is patronising and frustrating.
Instead try: “I read somewhere that this condition can cause chest infections. How are you guys coping with that?” Showing that you are doing your own research makes us feel supported, so long as you recognise that we’ve already done our own.
3. Don’t compare our situation to others unless its genuinely relevant.
For example: “My cousins boyfriends step sister gave birth at 30 weeks. There was a chance the baby would struggle, but now they’re fully grown and studying astrophysics.”
That is wonderful for your cousin’s boyfriends step sister’s child, but this is not the same. They of course had a horrible time at the start of their lives and we are exceedingly happy that they are doing so well, and if you want to share that anecdote unrelated to our child, then we’d love to hear it. But if you compare a developmentally normal child to one with a rare, congenital condition and brain defects who will be lucky to learn how to walk and talk, it is only going to remind the parent of everything their child will not be able to do.
Instead try: “I went to school with a kid with global delay. He integrated really well and made tons of friends.” Don’t have an example like this? That is fine! You don’t need to say anything. Just enjoy getting to know our child.
4. Don’t treat the child like an idiot:
For example: “Who’s a special-weshal ickle wickle lovely baba.”
If we don’t talk to our children like they’re morons, there’s certainly no need for you to. Yes, of course adjust your behaviour realistically, but still treat the child with dignity and respect. Follow our lead, see how we talk to them, hold them, comfort them and treat them. We are the experts on these children, so use our experience to your advantage.
Instead try: “Hello darling, you’re looking good!” speak to them in a similar way you’d speak to any child. Yes, adjust vocabulary and tone to suit their age and stage, but avoid the babbling baby talk.
5. Don’t rain on our parade.
For example: “I know you’re happy that she’s doing so well, but a bad seizure could undo all that development.”
Parents of children with rare, dangerous conditions don’t get many wins. When we do, it may appear to the outside world that we are being blindly optimistic and celebrating in blissful ignorance. This is never the case. The haunting scenarios that swim around our minds are thoughts we would not wish on our worst enemies. We know how dire our situations can be. If we seem like we are unrealistically hopeful about a new development, don’t think for a second that the crushing reality has left our minds.
Instead try: “That’s amazing, I’m so happy for you guys!” Celebrate with us. Know that any negative thoughts you are having, we have already had tenfold and you do not need to vocalise them.
footnote: If you have done something that has been pointed out on this list, know that me and Stewart are not upset with you! We recognise that you (like ourselves) are not infallible and are entitled to make the occasional faux pas. Do not come and apologise to us, just endeavour to avoid doing the same to us and others in the future.
The physio nodded and told me “well that will be exactly why she has such good neck control”.
Developmentally Quirky 