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The below points were passed on to us from a parent of a young person who currently uses the Early Intervention Service in Sussex.

 

  • Accept the reality of the situation.  Wishing things were better isn’t going to get your child well.  It’s tough, because there is such a stigma about mental illness of all sorts, especially psychosis, but as a parent you can do a huge amount to help foster understanding, starting with yourself.
  • Arm yourself with the facts.  There are a large number of scare stories in the media about mental illness.  Knowing the definitions of some of the different types of illness is helpful.  Your child has psychosis.  That does not mean he or she is a psychopath!
  • Be prepared for ups and downs yourself.  Actually, there is nothing more depressing and upsetting than seeing your child suffer, however old they are.  You may need to shore up your own mental health in the short term.  Anti-depressants are not mind-altering.  They can be very useful helping you to cope with what is a very complex and difficult family problem.
  • Support your youngster by separating the negative behaviour you encounter with them, acknowledging that you know they feel that way, but gently reinforcing and encouraging the simple rhythms and positive routines in your life together.  Meals together, basic household chores and keeping on top of personal hygiene can help your young person put structure into a chaotic world.  The world is never such a bad place on a full stomach.
  • You may have to be firm. It’s best to maintain a calm demeanour if you need to direct a young adult into a more structured and positive routine, especially if they seem to be drifting off into negative or destructive behaviour.  Boundaries should be agreed between you when things are calm and constructive.  ‘Laying down the law’ isn’t usually helpful, but you can advise what your personal/family requirements are and make sure that these are respected.  Stick to them.
  • Don’t get too fazed by what you may think of as ‘odd’ behaviour.  Reinforce the good stuff, try to get your child (or young adult) onto what we call ‘the Happy Track’ in our house – when we see our daughter starting to drift towards obsessive behaviour, we provide an alternative and encourage activity there instead.  It can be painting, gardening, writing, sewing, watching a film – in fact, anything they enjoy doing – as long as it’s positive.
  • Do make sure they are taking their medication properly.  Our daughter tried stopping it without telling us, and we watched her condition worsen noticeably.  As soon as she was back on a proper dosage, her symptoms lessened immediately.  If they want to wean themselves off the medication, everyone has to be involved – you, them and the Care Team.  It has to be done at the right time, and with the proper monitoring. It’s the only safe way to proceed.
  • Be aware that your young person may want to take on something for which they are not yet ready.  Psychosis doesn’t stop them being intelligent, ambitious and determined, all of which are really great personality traits.  Our daughter took on a hugely challenging job, of which she was entirely capable – but her work colleagues were petty, unpleasant people, and it was just too much for her to manage.  If they can do something in a supported and decent environment, then fine.  Easy does it back into the world of work or study.
  • Listen to the Care Team.  They have seen this situation many times before, and have a wealth of information about the condition and what you can expect in terms of treatment.  We’ve been amazed and comforted by the support our daughter’s care team has provided.  We would have been lost without them.
  • Don’t guilt-trip yourself.  You didn’t want this situation to develop, and you want your child to get better, not for them to worry about how you are blaming yourself.  There’s no point in second-guessing what you might have done differently, it is what you do now that matters.
  • Good luck. Remember you are not alone.  There are more of us out here than you realise.

 

 

The EYE Project is a research project supported by:

Sussex Partnership NHS Foundation Trust, Swandean, Arundel Road, Worthing, West Sussex, BN13 3EP