Just diagnosed – Top Tips for Family and Friends

If you have recently received a diagnosis or perhaps you are in the process of getting a diagnosis, you may be wondering which way is up.  We know because we’ve been there too and remember what a frightening, exhausting and confusing time it can be.

So we have asked other parents, who have also been where you are, to share their top tips.  The things they wish they had known at the beginning.

We have split the tips into three categories.  Emotional Tips for Families.  Practical Tips for Families.  Tips for Friends and Family.

Top Tips for Families and Friends

Family and friends often feel useless and not sure what they can do to help at the time of diagnosis.  To be honest, at the beginning, the chances are you won’t know what they can do either.  You are so busy trying to get through the next hour that having to then think of things for family and friends to do just seems like another burden to carry.  So here’s a few things you can pass on.

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  • To give you a hug now & again
  • Listen to you without trying to find solutions or answers, just a person who lets you talk.
  • Don’t take it personally if you don’t respond to calls, messages etc promptly, some days it’s bedtime before you’ve caught your breath & you just run out of time, especially if you are functioning on little sleep
  • Don’t forget the siblings!  Brothers and sisters can miss out on so much due to the challenges you may be facing with their sibling.  Ask friends or family to include your other children on some of their “normal” family trips out – not only does it help you, it will help your child.
  • Ask friends and family to invite siblings on “sleep overs” and play dates.  The things we often take for granted but things our other children can miss out on due to the issues you may be facing at home.
  • Ask them to babysit – even for an hour.  Sometimes all you want to do is have a bath in peace or go for a walk to clear your head.  You may just want to sit down in a coffee shop with a magazine, just to escape for a short while.
  • Bulk cook some meals – Bolognese, chilli – anything you can freeze.  There will be days when appointments or stress take over and knowing you have back up available in the freezer makes life a lot easier.
  • Research Benefits
  • Find out all they can about the diagnosis
  • Research Educational Law
  • Find your Local Authority’s Local Offer 
  • Find local support groups
  • Find online support

There are many practical things you can ask family and friend to help with.  There will be others which are relevant to your family and not others, so please don’t think the list above is a final one, it is just for starters.

What helped you?

If you are further down the road and have some more tips to share with families, then let us know and we can share them in a future post.

 

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