Parenting a Liver Kid in a pandemic (AKA are we homeschooling now!?)

We thought we might put this post together to give some tips on how to manage life at home with your immune-suppressed kid, or kid with a chronic illness during a time of great uncertainty and public health emergency.

This morning the PM said that schools will be staying open. There is conflicting medical advice about whether this is the best approach, but that’s where we are for now. For parents with an immune-supressed or chronically ill child you might decide that school is  not a good idea at the moment. Please note though that the medical advice from NSW is that Liver Kids should go to school unless otherwise advised. 

At our place the kids have been home for 2 days this week – because big sister has a non-COVID19 illness. We took it as an opportunity to set a routine for possible future schooling from home. The suggestions we make below won’t necessarily work for everyone, but hopefully they will help you set something up.

Firstly, if your school hasn’t already been in contact with you about options for your liver kid then you should speak to them about what can be done to support your child. A student with a medical vulnerability should have special considerations put in place, and access to learning, in the event that they need to stay home from school.

I am a high school teacher, currently (and luckily) on long service leave. I have made a timetable for my kids, who are also both in high school, based on their school day. We are starting ‘school’ at 9:30, at which time they need to be dressed, had breakfast and generally ready for the day. Work is done in the lounge room, not in bedrooms. This gives a greater sense of separation between working and relaxing

9:30 – school starts. Work on any assignments they have coming up, studying for tests, doing any classwork uploaded by teachers

10:30 – going for a walk. We live in an area that is not a current COVID 19 hotspot, and it is suburban. You might prefer to do an indoor physical activity – YouTube is a goldmine for finding ideas/tutorials/training sessions

11:00 – break. Their time is their own here

11:30 – back to school. They continue work on assignments and study

12:30 – lunch. Again their time is their own

1:30 – final school session for the day

2:30 – jobs around the house. These can be either day to day things (folding washing), or long term projects you haven’t had time for (going through kitchen cupboards)

A day and a half in, this is working well, but I will certainly change things around as needed. I think if we have to do this long term I would do a 4 day week of the timetable, not 5. As a rule, kids can concentrate closely on a task for about a minute per year of age plus 5 minutes. So my 15 year old might have 20 minutes worth of concentration before a reset is needed. Individual kids will vary of course. So although each ‘school’ session in the timetable is an hour long I would not expect any kid to do one thing for that hour. And if I had younger kids I would schedule in breaks that were shorter, but more frequent.

Your kid will inevitably run out of official school work to do because they will probably work more efficiently at home. I have come up with a list of approved ‘school activities’ that they can do if they don’t have work or assignments set by their teachers. Again, this is based on the subjects they are currently doing at school. For example:

• Reading a book (fiction or non-fiction)
• Listening to a foreign language podcast (you can find these online, including on Spotify)
• Practising a foreign language (Duolingo is an excellent free app for this and has a lot of language options)
• Music practice
• Sewing or other craft
• Personal interest research (which they can share with the family)
• On-line learning (your school might subscribe to Mathspace, Education Perfect, Spellodrome or similar)
• Working through maths or science textbooks
• Drawing
• History or geography research on a topic of interest
• Educational YouTube videos
• Creative writing

There are lots of other things you can do that are educational, eg:

• Cooking
• Learning to touch type
• Age-appropriate life skills
• Board games
• Puzzles

And remember if there is work your child is set that you aren’t sure how to do…well that is what the internet is for. Until yesterday I didn’t know how to autocreate a line graph in google sheets, but now I do. If there is something that you kid is really having trouble understanding or working out, don’t worry about it. Move on to something else and come back to it later. Or don’t. If it is vital for their education they will have the opportunity to learn it when they are back at school. Remember that the important thing about school is the process of learning and problem-solving, more than the individual facts they will learn.

The Power of a Community

The Liver Kids Family Fun Day in Sydney in late September was a fantastic and fun reminder of the benefits of being part of this community, connected by the unique experience that is childhood liver disease.

First defined by the ancient Greek philosopher Aristotle, a community is usually recognised as ‘a group sharing or having certain attitudes and interests in common’. This is particularly true in the case of health conditions, where there may be no connection between people other than the experience of the disease they share.

Where rare diseases are involved, there are many benefits that can come from being part of a community, a key one is a sense of belonging. Community members have a shared experience which may not be understood by family members and friends.

That sense of belonging often leads to meaningful mutual support. Having a community to rely on means you have access to people who know what you are going through. In the case of a new diagnosis of liver disease, other families have been there too and can give the benefit of their knowledge and experience for reassurance and point you in the direction of resources that can help answer your questions.

Access to resources is another key facet of the benefit of a community. No matter how smart you are or how much time you spend searching Google, it is impossible to know and do everything by yourself. Access to a community means that new ideas, resources and experiences can be shared and discussed, to the benefit of all members. In the healthcare setting, a strong community can also provide access to key subject experts. The families who came to the Liver Kids Family Day were lucky enough to hear an amazing and inspiring update from Dr Gordon Thomas on the incredible leaps forward in liver transplantation at The Children’s Hospital at Westmead. There was also the opportunity to talk one on one with him and other members of the Liver team.

Possibly the greatest successes a healthcare related community can have are in creating impact and influencing change. The voice of a group will have a larger influence than the voice of an individual. As a community we can work together to achieve real outcomes that will have a positive impact on the health of children with liver diseases and post liver transplant.

We are lucky that our families, and most of all, our Liver Kids, can meet each other, develop supportive friendships and build a strong community. This way we can learn together, support each other, contribute to improving diagnosis and create better resources for future Australian children born with a liver disease.

The Liver Kids community is very young in comparison to many others and there is much we can do. As part of this community, what would you like to work with us to achieve? What are the milestones we should be reaching together? And how should we celebrate our successes?

What’s Life Really Like Post-Transplant?

If you are the parent of a newly diagnosed Liver Kid, or you have a Liver Kid who has recently had a transplant you will have a lot of questions about your child’s future. You want to know whether they will have a normal life, or whether your family will ever get away from hospital life, or whether having a transplant is just switching one problem for another.

My Liver Kid is nearly 9 years post-transplant, so I thought it would be worth sharing our experiences so that you can see that there really is light at the end of the tunnel you find yourself in. Of course, every child’s experience is different, and I’m not a doctor, but I have been where you are now and come out the other side.

I won’t go into the entire pre-transplant story. It’s enough to say: biliary atresia, failed Kasai, transplant at 16 months old. One major difference between then and now though is that there was a real shortage of donors when my Liver Kid was on the waiting list, and many children were a lot sicker before they got a transplant than they are today.

But, to get back to the point of this post, what is it really like having a Post-Transplant child? Well, the short answer is that her life is no different to any other kid her age. She goes to school, she plays with her friends, her bedroom is messy, and she loves her family. Of course, we take good care of her health and we’re pretty focused on hand hygiene. We all have a flu shot each year to help protect her, and we are very careful with sun protection. She sees her Liver Team 4 times a year and has a blood test each time. She has an ultrasound once a year, and 3 years ago she had a routine biopsy as part of her post-transplant protocol.

She has not been admitted to hospital due to a fever for 3 or 4 years, in fact I honestly can’t remember exactly when it happened last. Initially we were worried that she would become terribly sick whenever she came into contact with illness, but that hasn’t happened. When she gets a cold, it’s just a cold and she is no sicker than anyone else in the family. In fact, she has to see our GP less frequently for minor illnesses than our older daughter.

That’s not to say that we are casual about her health, we do take it very seriously. If she is unwell we watch her closely and if in doubt we take her to our GP. But most of the time her transplant is just a normal fact of life and the routines around it like taking meds twice a day are just another thing we do, like supervising homework or planning dinner.  These days she only takes 1 tiny capsule twice a day, nothing like the amount of medication she was on immediately post-transplant.

Because she was so little when she had a transplant, everything about her health routine feels normal for her. She doesn’t like having her bloods done (who does?), but she knows it is just something she has to do. She doesn’t really feel any different to other kids, and she does pretty much everything that other kids do. She has been on school camps, and gone to sleepovers. We go on holidays and hang out with other families. Although we take special care of her, we don’t wrap her up in cotton wool and keep her away from other people.  One day she is going to be old enough to make decisions about her health for herself, and we want her to know that it is OK to do most of the things that other people do.

I remember that before our daughter had her transplant one of the consultant nurses gave me some great advice: ‘Liver transplant is the only treatment for biliary atresia, but the good news is that it’s an excellent treatment.’ In our experience that has definitely been the case.

Click HERE to download the Infographic

More about growing up post-transplant

Transplant recipient Libby Mutimer gave a great presentation at the 2016 Liver Kids Conference and Family Day about growing up post-transplant. See it here

Need Support?

Liver Kids Australia has a network of experienced families who can provide support and advice whatever stage of liver disease diagnosis and treatment you are up to. Contact Rachel on 0407 061 634 or at rachel@liverkids.org.au

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!

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

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.