Independence
Being independent is an important life skill. For young people with Spina Bifida, learning to be as independent as possible will help to create more opportunities in life. This can be a lot to manage when there are also the usual issues of puberty, self-identity and making relationships.
What are some of the issues for young people with Spina Bifida?
Health
Regular clinic visits are important to maintain overall health. For young people living with Spina Bifida it is essential to have good routines. This will set the young person up for a lifetime of looking after themself. There is a “Living well with Spina Bifida” fact sheet that covers this in more detail.
By doing some form of regular physical exercise issues of weight, independent mobility and good mental health can be managed. For more information and advice about this see the fact sheet – “Weight management and diet” and “Physical activity with Spina Bifida”.
Social activities
Meeting up with friends or meeting new people will help to build self-esteem, confidence and personal relationships. Parents or carers may need to help or encourage the young person to get started.
Finding work
Finding a job can be a scary task for anyone. Guidance and support is available to help you. A good place to start is the local Centrelink office.
Driving
Being able to drive will help your independence and job options. Cars can be changed to suit your needs. More information about learning to drive and changes that can be made to cars can be found through the Roads and Maritime Services website and specialist driving centres. Your Occupational Therapist will also be able to help,
Transition to adult services
The transition to adult services is an exciting step for a young adult. Looking after your own health care may need some guidance. The “Living well with Spina Bifida” fact sheet is available for more information. From the age of 15 you can get a Medicare card.
Adults
Going to an adult Spina Bifida clinic will give you a chance to talk about any issues you might have about your health. They can also speak to you about:
- Independence
- Relationships
- Sexuality
- Jobs and study
- Leisure activities.
The Northcott Spina Bifida adult resource team can help with the transition to adult services.
There is another fact sheet about “Relationships, sexuality and fertility” you may like to read. Ask your doctor if you have questions.
You can find more information about adolescents and adults with Spina Bifida at:
- Northcott Spina Bifida Adult Resource Team
- Download the Spina Bifida handbook to help you manage incontinence
- Learning to drive information available at Roads and Maritime services
- The Australian Government website offers help looking for work or applying for a Medicare card. Centrelink also provides a variety of helpful services
- Reach Out is a great online resource about youth mental health and services
Things to remember:
- There will be a lot of new information. Your red book is a great place to keep all of your health information.
- Remind health care professionals of any allergies you may have, especially to latex.
- Understand when and where to ask for help when you need it
- From the age of 15 you can get a Medicare card.
Written by The Children's Hospital at Westmead, Sydney Children's, Randwick, Kaleidoscope Hunter Children's Health Network and Northcott
