back to school with hydrocephalus

Erin Garde, published 31.01.23

“You have brains in your head. You have feet in your shoes. You can steer yourself in any direction you choose.”

(Dr Seuss; Oh, the places you’ll go!)

And so, back to school. Up and down this country of ours, many parents and carers of our youngest (and mightiest) hydro warriors are breathing a sigh of relief tinged with worry. How’s it going to go this year? What will it be like for them in a new class, a new grade, with a new teacher? How can I help my child learn and become more independent?

We get it. It’s nerve wracking. And challenging. You want the best for your kids. You want them to learn and grow and have meaningful relationships with others. You want them to be the best that they can be. You don’t want to be “that” parent, ever.

So, how do you go about smoothing the way for your young hydro warrior? Well, we’ve put together a list of tips to hopefully make lacing up the school shoes and getting back into it a bit easier for everyone.

Please do note though, each State and Territory in Australia has a unique education system, and policies and procedures can vary a lot from State and Territory to State and Territory, and also from school to school. These tips are general and have been written as a starting point to steer you in the right direction to support your little hydro warrior.

Back to school tip #1: Plan, do, review

We probably spend half our lives drumming the idea of “preparation is key” into our young people’s heads, and the same goes for parents and carers of children and young people living with hydrocephalus. Prepare, prepare, prepare.

So, you might find it helpful to do a bit of a “stocktake” of your child’s needs, the support available to you in the coming year, who you might need to inform or update about your child’s needs and progress, and identify any gaps that need filling before school starts in the new year. For example, does your child have an Individualised Learning Plan (IEP) or similar already in place, or does it need updating? Who can you go to at the school if you, or your child, need more support? Does your child’s new teacher know about their needs and what to do in an emergency? Does your child have any procedures or appointments coming up in the new school year? Has your child’s health improved or deteriorated over the summer holidays?

Once you’ve done a stocktake of everything, make a specific plan to do specific tasks so you’re all organised before school goes back (ideally). Then after going through the plan and actioning each step, do a review to make sure nothing has been missed, and any other tasks arising from the first set are completed. You might also find it useful to do a review of all arrangements for your child at school at other times throughout the year, to ensure everyone’s needs are met.

Back to school tip #2: Communication is key

“Hello? Is there anyone there?” Have you ever noticed things go more smoothly and problem solving is easier when people communicate? Same principle applies here to the people and services who are regularly involved in the care of your child or young person. From their teacher, to the wellbeing team at their school, to their neurosurgeon, occupational therapist, communication is really important to help your child succeed at school. Why not start the school year off by making a time to introduce your family to your child’s teacher; even just sending an email to touch base can be extremely useful. Find out how they would like you to contact them when you need to update them about your child, and make sure they know where and how they can contact you if they need to.

Back to school tip #3: Share your knowledge

While undoubtedly by now you have immersed yourself in the world of science in an effort to learn everything there is to know about hydrocephalus to support your child, not everyone has the same level of understanding out of the gate. The start of a new school year can be a really great time to offer some resources to your child’s teacher about hydrocephalus, as well as some specific information about what it looks like for your child. For example, what signs does your child show when they might have a problem with their shunt? Nausea and vomiting, headaches, changes in their vision? When should they call you if they are worried? Are they allowed to play sports? Sharing general information about hydrocephalus and how it affects your child appropriately with other means a strong home school relationship can be built that everyone ultimately benefits from.

The Hydrocephalus Association in the US has put together a series of resources designed specifically for teachers, educators and schools at every grade level. They are available free of charge from https://www.hydroassoc.org/teacher-resources/ .

Back to school tip #4: Establish good routines and habits early

This final tip is for you and your family: Get into good habits and routines to support your children’s independence and self-help skills early. For example, getting into a solid homework routine right from the start of the new school year means that things don’t get left to the last minute, forgotten about and your young hydro warrior has the time they need to be successful. Practising going to bed and getting up in the morning on time can mean your child (and you!) gets enough rest and has enough time in the morning to get ready for school without rushing. Having a solid morning routine can also foster independence and responsibility in your young person, on an age, maturity and skill appropriate level. Finally, building a “control centre” type station where all school things are placed and stored in a central place is also a great idea; saves the search in the morning after the chorus of “...has anyone seen my shoes? I can’t find my hat! Where’s my pencil case?”!

Go forth and learn!

References

Dr. Seuss. (1990). Oh, the places you will go! Random House.
Hydrocephalus Association. (2021). School. https://www.hydroassoc.org/school/
Shine Foundation (UK). Hydrocephalus and School. https://www.shinecharity.org.uk/schools/schools

Page updated

Report abuse