Homeschooling around chronic illness

Life is complex when you have a family member who suffers from one or more chronic illnesses or disability. You have all the symptoms to manage, all the medications, numerous hospital and doctors appointments, pharmacy visits, a constantly changing schedule when appointments are issued or symptoms flare. It’s a headache! When you also work and have children that headache is a migraine! If it’s one of the children that has the condition, that can be even harder to manage as you have the added feeling of helplessness that you can’t always make it better for them.

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One unexpected benefit of home schooling is that not only do you have the flexibility to change your schedule to accommodate appointments that used to have to be rearranged to fit around school hours (and we know how that procedure can turn into a stress-filled circus waiting on hold, press button 1 for this and button 2 for that) but also you can make it educational and make the loved one who is suffering the condition a priority when need be. The patient can give the children their point of view about how the disorder affects them and answer any questions the children have. The children can see that things are being managed and are reassured that proper care is being taken of the person – once they know they can have all their questions answered and they have an insight into what they can do to help, it’s not so scary. Being in a waiting room environment is perfect for quiet reading or writing and teaches patience and consideration for other waiting room users. It also teaches them to work together as a team, cooperating, to ensure the person needing the treatment is looked after, by us all. The children feel important, included and no matter how serious the illness, know they will be kept informed, so nothing is unknown, nothing is scary.

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The most important thing they have learned is to question things they feel are not right, not just assume that what the doctors or nurses are saying is always right. They learn to trust their own judgement and see how essential it is to know that if it doesn’t “feel” right to research and question until you have your own solution and better answers. Another essential life skill learned from the medical system in the UK is to be respectful of others and patient but if you need something urgently, tell someone and keep telling them until they attend to you. If someone wants to know your personal details, ask why they want to know and who they are before you tell them your life story. My children have seen my family and those of their friends challenge the people in authority to receive proper care. They have seen when things go right and seen how we handle it when things go wrong. They see me do written battle with the managers of the NHS trust in my pursuit of funding for an essential series of operations which are necessary to keep me mobile and out of a wheelchair. That process is ongoing and they are a big part of it – they should be, the consequences of it affects them too and for my daughter it may be something she will face in later life.

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Had the children been at school, all this activity would have been largely hidden to them and they would have just received the bullet points but would have missed out on the bulk of the events. In today’s climate of austerity where NHS services are getting squeezed it is good to know that my children can stand up, in the most effective way, for the things they need from the NHS instead of just trusting the system to have their best interests at heart. I see this as an essential aspect of life to master, not only to the wellbeing of the family now but to the future well being of my children and their families later on.

Wishing you all good health!

June x

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