Helping Your Child Understand Spina Bifida

The following information should be seen as a guide. It offers simple answers to questions young child may ask and activities which can be used to help your child better understand Spina Bifida and explore new ways to enrich their lives. 
 
The information and activities can be used to help you open and guide discussion with your child about issues such as movement, bathroom routines, exercise, physical activity, diet, and scars - all of which are important for your child’s sense of self.
 
Talking to your child about Spina Bifida
 
When talking to your child about Spina Bifida remember:
 
Its OK to say 'I don't know' to a question from your child. Reassure them that their question is important and that you will get help to find the answer.
 
It's OK if you can't find the words to use, you will have more than one chance to talk about these things.
 
It's OK if your child asks the same question a few times. Most children need to do this before they understand a complex condition like Spina Bifida.
 
It's OK for you and your family to seek support from others, such as Spina Bifida Hydrocephalus Ireland (SBHI), your SBHI Family Support Worker, other parents, others with Spina Bifida, doctors, therapists, etc.
 
Typical questions, complaints and concerns your child may raise and suggested replies may include:
 
What is Spina Bifida?
 
Spina Bifida is a medical condition you were born with. When you were in Mummy’s tummy, part of your back grew in a unique way. This can make it challenging for you to go to the toilet and to use your legs. Nothing that you, Mummy, or Daddy did caused Spina Bifida.
 
Will I always have Spina Bifida?
 
Yes, you will have Spina Bifida all your life. This means you may need to use something to help you get around like your wheelchair or your walker or crutches and you will need to pay attention to how you use the bathroom.
 
Will people love me?
 
That is a very good question and one that is easy to answer. Yes! They already do!
 
Please click here for more detailed information on Helping Your Child Understand Spina Bifida this includes more details on the topics below
  • Movement
  • Bathroom Routines
  • Exercises
  • Physical Activities 
  • Diet Tips
  • Scars

The following is a resource called 'Right Under My Nose', which you may find helpful:

Right Under My Nose - Click here to find out more

You can download the tips pages of the book by clicking HERE

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