No two babies are affected in the same way by spina bifida and hydrocephalus and each one is unique and individual. With this in mind, new parents need to give their baby all the experiences that will help them to become the best that they can be.
It’s never too early to play… unless it’s at 5am!
When you are a new parent, your baby is getting to know you and you are learning about them.
As you get to know your baby you will find out about their individual qualities, what they enjoy, what soothes them and what helps them to develop and to learn.
Remember to use lots of talking and singing when caring for and playing with your baby. At first, it will seem like a one-way conversation but soon your baby will make noises in response. Playing noisy and facial expression copying games with your baby develops their communication skills. Then the interaction really gets going.
The Communication Trust provides a help sheet called Talking to Parents about Talk with ideas and advice for parents to encourage communication.
Words for Life is a good website to get communication ideas, along with songs, rhymes and books to read with your baby. Follow the links below for a wide range of lively ideas. They also have information about talking to babies born prematurely.
Giving your child the building blocks for learning and independence
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Like all children, our babies with spina bifida or hydrocephalus need to develop, learn and practice skills through play. Babies and children learn through experience and the stimulation of their senses: sight, touch, hearing, taste, smell and movement.
It is through play that babies and small children ‘learn how to learn’ so they can build up the skills needed for independent life. The important abilities learnt as a baby or small child are transferable skills for use throughout the rest of a person’s life. Once these abilities are learned, they are in a child’s skills bank for later on in life.
Children with spina bifida or hydrocephalus may take longer to learn how to play, due to issues around initiating and deciding. If you notice that your child may not 'just play' they may need more encouragement to engage in play.
Parents and carers are advised to play alongside their child and to model the type of play that they would expect when playing with toys. If a child has a shape sorter toy then they may need to be shown repeatedly how to play with the components, receiving praise whenever they are successful.
Talking through the activity will give your child a language model as well as a physical model of how to play.
If your child has lots of appointments, finding time to play can be difficult, but trying to find the time is important as play can be just as important as therapies and procedures for your child’s cognitive development.
Play nourishes every aspect of your child’s development and forms the foundation for cognitive, physical, sensory, social and emotional skills that are vital for success in school and in life.
About Kids Health provide play ideas for the first six months - Play is more important than you might think - play activities that challenge help to counteract the possible effects on learning.
Play paves the way for learning by building social and emotional skills too, such as:
Play takes many forms:
Make sure your child has all these play experiences during the week.
It is important for all babies to experience different positions for play, such as on the floor, on your knee or on their tummy. Babies, especially if they have additional needs, should experience the world from more than just a sitting position.
Bouncing cradles, car seats and high chairs put babies in the same seated position for most of the day so it is vital that babies move around freely as much as possible.
If your baby has difficulty holding up their head, you can place a wedge or rolled up towel under them for tummy time.
Encourage rolling by putting their favourite toy just out of reach at the side so your baby turns their head and brings their arm across. Ensure you encourage rolling towards both sides in a safe area.
If you would like any support with tummy time, please speak to your baby’s health visitor or our physiotherapist at Shine.
Knowing where your body is or having body awareness is proprioception, which is so important for learning gross motor and fine motor skills as well as establishing depth perception( the ability to see things in three dimensions and judge the distance of objects), sometimes a difficulty for children with hydrocephalus.
Play helps to develop your baby’s vestibular system, which tells a child about their head position in relation to gravity so they know which way is up. It has a vital role in allowing children to move safely, pay attention, sit still and maintain an appropriate level of alertness for daily play activities.
Playing ‘Head, Shoulders, Knees and Toes’ every day during nappy changing and bath times helps a baby to recognise their body. This is especially important if your baby has little or limited sensation in part of their body due to their neurological condition. This understanding of their own body is really important for independent self-care as a child grows up.
Why movement is so important
Independent mobility is an important factor in a child’s physical, cognitive, sensory, emotional and social development. Babies should be actively exploring their environment by 12 months. Mobility is not just walking. Rolling, crawling, using a mobility aid or self-propelled wheelchair are all ways of offering independence and your child may need help with this. If your baby has additional needs then being able to move and interact with their world can reduce the effects of their condition. Your therapist will be able to provide advice.
For more information about proprioception and the vestibular system, follow the links to these websites and to the book ‘A Moving Child is a Learning Child’
The Motor Story - Sensory Processing
Stellar Caterpillar - A game for baby
It is not necessary for children to be surrounded by expensive toys in order to play.
Avoid putting out all the toys a child has to play with. Instead, have a routine of different types of play, using a range of toys.
You may wish to have a timetable, calendar or diary to maintain your child’s play routine. Then you can see if your child is experiencing all types of play activities to minimise any risk of having gaps in their play development.
A play calendar is available to download here
Pop-up toys, which demand 'cause and effect' play, are suitable for children who may have difficulties with prospective memory, which is often described as ‘remembering to remember’.
Predicting or anticipating games like Peek-a-boo and Round and Round the Garden rhymes are all helpful for children with spina bifida or hydrocephalus, who often have difficulty with prospective memory.
Some children can be very passive in their play where they don't initiate, partly because they don't anticipate anything will happen. Opportunities to experience toys and games that enhance their prospective memory can be very useful.
Toys that develop and improve spatial skills are important for children with spina bifida or hydrocephalus. Some children with these conditions have difficulties with spatial skills so they need experience of handling, investigating and building with a range of objects.
See: Ten tips for improving spatial skills in children and young people
Traditional ‘girls’ and ‘boys’ toys can lead to children missing out on types of play which can enable them to overcome some difficulties associated with hydrocephalus.
Girls are often missing out on construction-type play, which can hinder their development of spatial, 3D planning and early maths skills.
Boys can miss out on imaginative play through having little experience of playing games with teddies or dolls. Boys benefit from play involving daily routine, which helps with sequencing skills and understanding the feelings of others.
Care.com has a list of recommended gender free toys
There are no limits to what your baby can learn to do. Given the right opportunities, your baby will amaze you. Your baby can achieve many things and reach many milestones given encouragement, adaptation, organisation and challenges.