How To Be A Friend To A Parent Carer
Diagnosis- Don’t walk on the other side
It must be hard to know how to respond when a friend’s child is diagnosed with special needs or a disability but respond you must!
E felt abandoned in the playground after the birth of her third son who has Down’s syndrome. She said ‘friends I’d known for years started avoiding me and that hurt a lot.’Much like a bereaved friend, at the moment of diagnosis your friend probably wants the trauma/life shift they are going through to be acknowledged, and to feel heard and supported. At the same time, their child is still alive and loved just as before, so it’s better to avoid expressions of grief and pity like: ‘I’m so sorry’ or ‘How awful’.
F’s son was diagnosed with autism in 2017. She said ‘The most helpful responses I had to the diagnosis acknowledged that I was upset without commenting on him, ‘sorry to hear you’re feeling sad,’ ‘you’re going to need time to find a new normal’ etc. Practically, I was also always happy to hear about other children with a similar diagnosis, as it made me feel less isolated. Offers of expert contacts is really welcome too.’
Talk about it
E said she welcomes it when other parents and children ask about her son’s Down’s syndrome. She doesn’t want it to be a taboo subject as though it is something negative and she is keen to educate others.
F says she always tells people ahead of meeting that her son has autism ‘and I really appreciate it when they act un-phased.’ F goes on to say ‘If the Parent Carer tells you about their child’s diagnosis and you know someone with the same condition do mention it, as it will immediately make the Parent Carer feel more comfortable to know you are familiar with their child’s issues.’
If a parent of a child with additional needs is telling you about something their child does that causes them stress or disturbs the whole family, don’t ‘reassure’ them that your non-SEN child of a similar age does the same. The likelihood is your child doesn’t do whatever it is to the same degree, and even if they do the behaviour will probably pass with age. Your friend doesn’t know how long they are going to be dealing with public screaming fits / nappies / broken nights.
Being left out is never nice, whether you are a child or an adult. As a Parent Carer you can already feel very aware that you are on a different path to your peers so being included can mean a lot.
E agrees with this saying that her son ‘sees himself as one of the group at school and so if he is not included for any reason then that hurts him and me.’
F thinks one of the best things you can do as a friend is to invite the Parent Carer and their child over often so those feelings of rejection can’t take hold. F says ‘Try to make an effort socially with the child even if it’s awkward and you feel a bit uncomfortable – it will mean so much to your friend.’
Don’t be afraid of the dark
As anyone who is a Parent Carer will know, there are dark times. There is fear and worry in great extremes as well as celebrations of achievements and good news too. As a friend to a Parent Carer sometimes just being there through those tough times can mean so much.
Proactive is productive
Practical help can be invaluable and sometimes Parent Carer’s don’t want to make another decision, they have so much to juggle already. So rather than say ‘let me know if there is anything I can help with’, offer something specific such as having the sibling over for a play date, providing transport to a hospital appointment or cooking a meal. A shepherd’s pie that you can just put in the freezer for when you need it is a true sign of friendship.
Parent Carer’s other top tips include:
Don’t look shocked if the child has a meltdown. Ask if you can help (perhaps distracting their sibling) but don’t interfere as chances are the Parent Carer will have very specific strategies. If the Parent Carer has other children try to ask about all their children equally when you catch up, so they don’t feel you’re forgetting the ‘normal’ one or are embarrassed by the ‘abnormal’ one.
Remember to ask how your friend is! This will vary from person to person, but most Parent Carers want their out-of-the-ordinary position, and the extra challenges they face, acknowledged in some way. Lastly, don’t make promises you can’t keep. Don’t promise to be there every step of the way if you can’t comprehend what that means. It’s a long journey so take each step at a time. After all that is what Carers have to do.
Thanks for West Sussex Carers for use of the image.