My Life, My Family

As you live with BBS every day it is very important to develop your knowledge and skills regarding BBS and your healthcare which will help you to grow in confidence and start making your own decisions.

To do this you will need support from those around you including parents/carers, family, friends, teachers and many other people who know you. Being treated as an individual, developing your personality and having your own identity are very important parts of growing up.

Spending time with family and friends doing things we love is important for our happiness and wellbeing and trying new activities and challenging ourselves helps us to grow in confidence. Some young people who have BBS may find some tasks and activities difficult, and some things may seem impossible, but with support, adaptations, determination and patience, there really are very few limits to what can be achieved. Have a think about what you like to do, what you are good at and what you would like to try but have never tried before. Then think about what you may need help with. Talk to your family about trying something new and ask for support in making it happen. Perhaps set yourself a challenge to learn a new skill or try a new sport.

Some young people may need help with things like washing or bathing, with finding suitable clothes to wear or with fastening buttons or shoelaces and that’s ok; being independent also means being able to ask for help when you need it. Contributing to household chores is a good way of showing your family that you are growing up and becoming independent, so if you aren’t already helping out around the home, ask for support in identifying tasks that you can do, for example, drying up or emptying the dishwasher, feeding the family pet, laying the table for dinner, watering the garden in summer – you will find there is a lot you can do and you may enjoy it!

I enjoy cooking, life skills, art, music, friendly people and having a quiet calm room to go to…