Teaching A Child With Cystinosis

Avneet Seehra And Mrs Dale
Mrs Dale, Ridgeway School, Derby (

When I was first told that I was going to have a child with Cystinosis in my class, I have to admit I was clueless. It was a condition I had never heard of and, although it sounded like something ‘medical’, I really had no idea what to expect. On learning more about the severity of the condition, my ignorance grew steadily into shock and then, finally (possibly the day after), into panic. As the plethora of medicines and tablets were arranged before me, fear began to take over. I had had no previous medical training or experience of any kind. What would I do if something went wrong? Shouldn’t this child have a 24 hour nurse or something? But the previous class teacher reassured me that everything ‘would be fine’. And of course everything was fine.

In school, there were lots of people who had worked with Avneet before and their knowledge and expertise were so useful to me, especially during the first few weeks of term. Some had been trained in how to properly administer the medicines and everyone was so calm I began to think that maybe it wasn’t going to be such a big deal after all. I was very grateful to have that experience on site – some of my queries were so trivial I wouldn’t have wanted to trouble Avneet’s parents by asking them.

Information about Cystinosis was displayed in the medical room, staff room, office and my classroom so that any other adults coming into school would have easy access. The timings and clear dosage information, which had been helpfully provided by Avneet’s family, were invaluable on the days when the adults who had responsibility for administering the medicines were unavailable.

Avneet’s parents were so helpful and approachable and the support they gave me at the start of the year was wonderful. I was provided with information that was thorough, but not overwhelming. Laminated cards with important information were provided and we have constantly referred to them all year. Whenever changes were made to Avneet’s dosage, these cards were updated and replaced in school.

As well as making sure I was well informed, Avneet’s parents also made themselves fully available to us. If Avneet was ill, or there was a problem with her medicine, we could always ring to find out what we should do. I can’t tell you how much that helped to relieve my fear that I would do something wrong that would make Avneet ill. I know it is not always possible for parents to be at home all day, and even if they are they have better things to do that wait for a phone call from an over-anxious teacher! But just to know we had a mobile contact, and that it was fine for us to call and check something … anything … was a great relief.

Having that open dialogue with Avneet’s parents has had the most impact on my ability to deal with the Cystinosis and get on with the teaching! I cannot stress enough how important this has been. Just a quick 2 or 3 minute chat in the morning or in the playground in an afternoon has been brilliant – now sometimes it’s just a ‘thumbs up’ if everything has been ok. We also have a home school book that we use to write anecdotes of things that have happened either at home or school. Although we don’t write in it everyday, it is another way to make sure we communicate fully.

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