Returning home again

As part of our #homeagain week I was lucky enough to talk to Emily and her mum Corita about their experiences of their return home following Emily’s brain injury.

Emily3
Emily was diagnosed with a brain tumour almost five years ago at the age of 12.   Following surgery she had to face many challenges, relearning many of the every-day things we take for granted.   After spending many months in hospital and a specialist rehabilitation unit they returned home. One of the things they both spoke about was how relieved they were to be home.  They had missed the quiet and simple things like being able to eat the food they wanted. But they also said the return home was a stressful and emotional time and that they felt they really weren’t prepared for the transition.  Many of their expectations were unrealistic. Emily and Corita shared with me some of the biggest challenges they faced when they returned home and some of their tips for young people and their parents to help with this transition. When Emily returned home she thought everything would go back to how it was before.  Looking back she realised she wasn’t fully prepared and that some of her expectations weren’t realistic.  Friendships are really important to all young people.  Emily thought her friends would make even more effort than before to spend time with her because she had survived a brain tumour.  A lot of her friends just couldn’t understand why she couldn’t do all the things she did before her brain tumour and it made it difficult to form friendships. Emily had kept in touch with a close friend from before she had her brain tumour.  She took the time to understand Emily’s brain injury and the things she struggled with.  She helped Emily to integrate back in to a friendship group.  Emily feels for many young people it can be a very lonely time and that she was lucky to have someone to look out for her in those first few months. One of the things Emily did enjoy about returning home was some of the new things she had, she got a new more comfortable bed and a TV in her room to help her relax and reduce her tiredness.  

Emily’s top tips for young people

  • Keep communicating with your friends to help them understand what you are struggling with and why.
  • Think through situations so you say the right thing.  Sometimes I find I’m too quick to say things I later regret because I think “what the heck” I can always say it’s because of my brain injury.
  • Plan rest time at school – find out where you can go to have a break. 
  • Think about how you get to and from places (like school) so you don’t get too tired.
  • If possible focus on one friend – don’t try to make lots of friends.
  • Pets can be very comforting or even a favourite toy.  We got my dog, Roxy, not long after I went home and cuddling and caring for her helped me feel more relaxed and built my confidence.
 
Corita felt she was possibly more prepared than Emily for the return home as she had spoken to other parents who had already made that transition.  One parent told Corita she cried every day when they first returned home.  Corita sympathised with her and it helped alter her expectations and  accept  the transition maybe more difficult than they first expected.  

Corita’s top tips for other parents

  • Returning home is a very stressful time full of emotion and it’s easy to say something you later regret.  Sometimes you just need to count to 10. I use the phrase “I’ll have to think about it and get back to you.” It gives me a chance to take in all the information and make the right decision.
  • If possible get some sort of continuity of professional input such as a member of a community team on side.  You don’t necessarily need to see them a lot, but just having someone there through the whole transition helps.
  • Try to prepare the school.  Emily’s school were really good, they had an assembly before Emily returned talking about what had happened to Emily and about brain injury in general.  We felt it helped some of the more caring young people find out about Emily’s situation and they kept an eye out for Emily when she started back at school.
  • Mental health is as important as other therapies.  Just a few sessions with a clinical psychologist made a huge difference to Emily.  I think parents can benefit from counselling too.
  • Think what’s most important; you don’t want to do too much.  For example at school we found registration and assemblies made Emily’s day longer and made her more tired.  They aren’t crucial and so Emily stopped going to them which helped reduce her fatigue.
  The transition home was not easy but Emily is now 17 and is facing the same challenges every teenager faces. She is learning to drive and thinking about what she wants to do when she finishes school.  While her brain injury makes some of those challenges more difficult she is living her life to the full home with her family and friends. 
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