As you wave 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.
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 with you.
Some children with spina bifida and/or hydrocephalus have issues with episodic memory (our memory of experiences and events) and might not be able to remember details of the day, such as what they ate for lunch, or who they played with. Patience is needed as children recollect their memories of their day at a different rate and order to what you may 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.
Your child’s 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, teaching assistant (TA) or learning support assistant (LSA) and if they have one, Special Educational Needs and Disabilities Co-ordinator (SENDCo). They’re experts at helping your child to settle in and to thrive at school.
NB: terminology for special educational needs teacher or assistant is slightly different, depending on whether you live in England, Wales or Northern Ireland
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 the conditions on learning then you can remind your child’s teacher and SENDCo about Shine’s information and advice services.
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 them.
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, 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, it helps them to meet the challenges of KS2 and beyond.
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 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.
Other activities to try at home
Later in primary school is the time when parents and carers start to help their child to understand their condition so that they can explain it to new people they meet. Children and young people with spina bifida and/or 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.
Disability Rights UK has a wealth of information on why self advocacy is so important
Children with spina bifida or hydrocephalus can begin puberty at an earlier age than other children.
At the moment, we are not too sure exactly why early puberty happens in children with spina bifida or hydrocephalus. The organ responsible for coordinating puberty, and all our hormones which control reproduction, the pituitary gland, is found at the base of the brain, just below the third ventricle. It is thought that increases in pressure in this area, either before shunting, or during shunt malfunction, can change the pituitary gland, and bring about early puberty. This is also seen in children with endoscopic third ventriculostomies.
This may have an impact on your childs mood and behaviour. Click here for further information
Shine run a number of support groups across England, Wales and Northern Ireland and there is also the Shine’s Little Stars Facebook Group, an area for parents and carers to receive support from others. Shine are also setting up Whatsapp groups for parents and carers. If you would like to join a group, please contact us.
