Supporting your child’s development at home (5 to 11 years)

Starting primary school  

When you wipe away a tear having waved goodbye to your child, as they start their first full day at primary school, you may wonder what’s next? Don’t worry, there’s still so much support outside of school that you can provide for your child.

 Daily routine and independence skills for school

  • Organisation and time management can be an issue for children with hydrocephalus so practise the new daily routine for school a few times before the first day at school.
  • Remember to continue to use a visual timetable at home to help your child to understand the changes taking place as they start school. Taking photos of their school bag, PE kit and other important school items helps to make a visual timetable more personal so your child will learn how to do this unsupported.
  • Packing your child’s school bag together every evening before school is an ideal way to assess their organisational skills, offering prompts where needed.
  • Hydration in school is vital for children with hydrocephalus so reminders may need to be part of your child’s school timetable.
  • Healthy diet is also important so offering simple choices for school dinners or packed lunches helps a child make good decisions about food.
  • Rigid thinking can be a feature of hydrocephalus and this can be a plus for learning because it firms up and instils good hydration and nourishment habits, as well as keeping children to routines.

Talk about school

When you pick up your child from school, listen when they talk about school, ask questions and offer positive feedback. Your child is trying to process the information and experiences they’ve had during the school day so they will want to talk about their day.

Some children with hydrocephalus have issues with episodic memory, and might not be able to remember details of the day, such as what they ate for lunch, or who they played with, but can remember what they learnt.

Patience is needed as children recollect their memories of their day at a different rate and order to what you would expect.

Encouragement and motivation are vital to a child, who may have some anxiety about being separated from you, so positive reassurance will help your child settle in. Put aside some special time to chat about the day together.

Their initial enthusiasm for school may wane a little so continue to use a calendar or chart to help them understand the passage of time. Put events and holidays on their visual calendar or timetable that you use at home so that there’s treats to look forward to.

Communicate with school

Try to establish friendly relationships with your child’s class teacher, TA or LSA and SENCO. They’re experts at helping your child to settle in and to thrive at school.

They can reassure you about most issues that come up. If you are unable to take your child to school or pick them up yourself then a home/school communication book or planner is a useful way of communicating. In turn, you can inform the teaching team about health and learning issues that may affect your child’s performance in class.

If staff need more advice about the effects of hydrocephalus on learning then you can remind you child’s teacher and SENCO about Shine’s information and advice services. Partnerships with our charity often continue throughout your child’s attendance at school as Shine can signpost schools towards inclusive PE lessons and disability awareness training

Keep up with what’s happening in school

  • Plan ahead by putting important dates on your child’s visual calendar and on the family planner too.
  • Letters, notices and text messages all need to be acted upon so you may feel that you are your child’s personal assistant at times.
  • Posters around school can often be ignored by children with hydrocephalus so make sure you are up-to-date by checking the school website regularly with your child.
  • Attend fun events so that you and your child have a positive attachment to the school.
  • Making new friends and encouraging friendships can be hard for some children with hydrocephalus so try to make connections and play dates from the first few weeks in school onwards. Once friendship networks are created these can last throughout primary school and beyond.
  • Practising what to say to friends and how to make conversation can help some children with hydrocephalus feel more confident in social situations. Talking about characters and events in a book, film or TV programme helps all children to understand how to start and to maintain friendships.

Organised out-of-school activities

Sitting all day in school can be difficult for a child with hydrocephalus, who needs regular opportunities to practise their spatial awareness skills that are so important for vestibular balance and co-ordination.

By supporting your child’s physical development and gross motor skills with sports and activities out-of-school you can help them to develop their mobility.

It is a good idea to continue with swimming, sports groups and clubs with supportive and understanding leaders, who know your child or are willing to learn how to best support your child.

Supporting your child’s learning at home is fun!

During the primary school years, the neural connections in your child’s brain develop at a fast rate, which makes it the perfect time to learn new skills that may stay with your child for the rest of their life.

Learning a new language, a new sport or a musical instrument can be easier for a child to learn at this age than at any other time in their life.

Ensure your child has a range of learning experiences to build neural connections in their developing brain by encouraging your child to try new skills at this exciting time in their life.

Changes in learning take place throughout primary school as children develop.

Basic skills are taught in Key Stage 1 from 5 to 7 years of age. Then children start to apply what they know in Key Stage 2 from 8 to 11 years of age.

Learning by doing at home helps your child to practise the skills required for the next stage of their learning. When your child has transferable skills they can meet the challenges of KS2 and beyond.

Learn together and do things together

Cooking and baking are ideal ways to enjoy learning all about weights, measures and timing. Children also learn fine motor skills, independence and to use their judgement when cooking with parental help.

Reading every day with parents is a great way to support your child’s reading development. The Literacy Trust has ideas for families and there’s World Book Day and Roald Dahl Day to enjoy in school too.

Hobbies like making films or taking photos can help a child to follow instructions, write screenplays and make storyboards in a fun way to consolidate skills.

Interests like supporting a football team or following a sport helps children with numeracy skills, the concept of time and creates great conversational topics to enjoy.

Homework tasks will be within a child’s capabilities at first but may become increasingly difficult rather quickly for your child.

Learning by doing can often help a child with hydrocephalus to learn difficult processes in numeracy or science.

Also, talking about their homework can help your child understand, learn and remember complex topics.

If your child is fatigued by homework, break down tasks into smaller manageable sections.

Speak with your child’s teacher if you think that your child’s condition is affecting their progress and development.

More experiential learning at home

  • Memory games to develop a child’s working memory
  • Puzzles to encourage problem solving skills
  • Construction toys to present a child with 3D challenges
  • Crafts to develop a child’s creativity and hand skills
  • Outdoor and indoor play to develop motor skills
  • Games to encourage turn-taking

Speaking for yourself or self-advocacy Skills

Later in primary school is the time when parents and carers start to help their child with additional needs to understand their condition so that they can explain it to new people they meet. Children and young people with hydrocephalus need to know how to keep themselves healthy, safe and supported as they grow up.

By the end of Key Stage 2, many parents and carers introduce self-advocacy, where a child or young person starts to take charge of describing their own condition, learning to speak up for themselves and making their own decisions about their own life. This can be a worry for parents at first but, with support, many children and young people learn about their rights, their responsibilities, who to turn to and how to take charge of their own needs as they become more independent.



Need more help?

If you need to speak with one of Shine’s specialist advisers about spina bifida or hydrocephalus, call us on 01733 555988 or click here to email us.

Our office hours are Monday to Friday, 9am to 5pm. We aim to respond to all enquiries as quickly as possible!

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