A New School Year

Across Australia, the last week of January means the end of summer holidays and the beginning of a new school year. School age children mourn the loss of freedom, while many parents rejoice at the return to routine and (hopefully) a tidier home!top-five-tips-for-liver-kids-starting-school

For those starting their first year in school, or moving from primary to senior school, there is a lot to prepare at this time of year. New uniforms and shoes, backpacks, lunchboxes, drink bottles, pens, pencils, books to be covered and all those nametags to be stuck on!

There are also all the worries kids have about a new school year: What will the teachers be like? Will I make new friends? Will the classes be lots of fun or too hard?

Liver Kids and their parents have all of these same activities and thoughts at the beginning of school, and a few more….

With a post-transplant Liver Kid starting Kindergarten this year, I found myself wondering what the new world of school would mean for us.

We have already experienced day-care and the seemingly endless sniffles and sneezes, as well as pre-school with the rough and tumble of the playground. What differences can we expect this year? And what should we talk to the teachers about to make sure they understand the health needs of our Liver Kid?

Fortunately, being part of the Liver Kids Australia community means that I can ask advice from other parents and learn from their experience.

Top Five Tips for Starting School

1. Be your child’s advocate

When your child starts school it is important for their teacher to understand the situation. Even if your child is very well, there might be things that you need to have modified for them, particularly in PE for example. Arrange to meet the teacher as early as possible in the school year, the week before your child starts is ideal. Keep in contact and speak up if something is happening that you aren’t happy with.

2. Teach your child how to advocate for themselves

This might be the first time your Liver Kid is spending lengthy periods of time away from the family. Make sure they knows it is OK to say if they feel uncomfortable with something. Talk to them about why it is important to keep healthy, and how to do that.

3. Focus on hygiene

Schools are full of germs, no question about it. Ask for hand sanitiser to be used frequently by everyone in your child’s classroom. Ask that your child is not sharing equipment with other students where possible. Tell the school you don’t want your child to share food with other students.

4. Normalise your child’s experience

There will be times when your child realises that they are a little bit different to the other students (blood tests, clinic visits, scars etc). Encourage your child to take a matter of fact approach. Sometimes there might be things they can’t do, and that’s just the way life is.

5. Don’t be afraid

It’s really hard to step away from constant involvement in your Liver Kid’s life. Trust that the school is staffed by professionals who know how to look after kids with a huge range of needs. Remember that this is a really exciting step for your child!

Resources

pens-jan-17

If you would like some information to help you have a conversation with your child’s teachers, Liver Kids has prepared an information page that you can leave with the school for their reference. You can download it HERE

If you have any questions or concerns about your child starting school or suggestions for other members of the Liver Kids community, don’t hesitate to email us at rachel@liverkids.org.au and we will get back to you as soon as possible.

Good luck to all our Liver Kids for the 2017 academic year.

Liver Kids Australia

A Tale of Two Beginnings

A recent family trip to the UK was an exciting event for many reasons, not least because we were catching up with close friends we had not seen since they left Sydney, seven years ago.

And that meant the meeting of two five year olds who share a name but have walked a very different path through life.

Giulia and I were colleagues for three years. We worked hard, we played hard and became great friends. In 2009, Giulia and her husband moved overseas, but we stayed in close contact. We were thrilled when we found out that we were both expecting our first babies within a few weeks of each other and thought it was hilarious that we had chosen the same name.

After comparing our experiences, Giulia and I decided to share the very differenabout-biliary-atresiat stories of our babies.

Alessandro was born 3 weeks before Alexandra, in mid-2011.

He was a healthy, happy little boy who was full of energy and kept his parents very busy.

Alexandra was born with Biliary Atresia. She kept us busy for different reasons.

While Alessandro was learning to sit, crawl, say the first words and interact with the people around him, Alexandra was fighting for her own life.

Alessandro’s world was filled with toys, books, walks to the park. Alexandra spent her life in and out hospital.

By the time of their first birthdays, Alessandro and Alexandra were a stark example of the impact of childhood liver disease.

In his first 12 months, Ale grew larger and stronger. He learnt to talk, eat, stand, meeting all of his developmental milestones.

alessandro-4

allie-3However, Alexandra did not thrive. Her failing liver caused her belly to swell with fluid so she could not move around much, she had gained only 2.6kg since birth and we had spent 7 out of 12 months in hospital.

Alexandra received a liver transplant just in time for her first birthday, it was very successful and our family began the journey back to normality with a happy and healthy infant.

We are the lucky ones.

Tragically, childhood liver diseases have many adverse effects, not only on liver function, but also on a child’s growth, development and sometimes, intellectual achievement.

Our experiences taught us a great deal about childhood liver disease and how it is perceived. Despite the profound impact it has on the children and families affected, childhood liver disease has almost no public profile as a health issue in Australia.

  • We learnt that the impact on families is long lasting. They need peer support and to talk to others who have been through it and understand what they are facing and how they feel. This applies to parents, siblings and the extended family.
  • We learnt that GPs and Child Health Nurses need better resources to help them diagnose and refer jaundiced infants for further examination more quickly.
  • We learnt that the clinicians who treat our children are often over-stretched, underfunded and poorly recognised for the lifesaving work that they do.

It’s with this mind and inspired by our experience that my husband and I founded Liver Kids Australia in mid-2013. Focusing on the families, the kids and the medical profession that supports them, Liver Kids aims to:

  • Enable information sharing and peer support for children and families.
  • Develop education for healthcare professionals.
  • Raise community awareness of childhood liver disease.
  • Encourage research into disease causes, treatment and care.

Ultimately, our goal is to achieve better outcomes for children with liver disease.

ale-and-allie-playgroundAnd what about Alessandro and Alexandra? Well, when you see them playing together now, you would never know that they had such different starts to life. This is the result we would wish for all children with a liver disease.

Do you want to know more about Liver Kids Australia? Can you help us help the children and families impacted by childhood liver disease?

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