Speaking out – not suffering in silence

An example of how a one-page profile can help communicate the essential information needed to support a child with a long term health condition in school. Jessenia doesn’t like to make a fuss and can find it difficult to speak out about what she needs. Her one-page profile does this for her and ensures she is not put at risk because of a lack of information or understanding.  

Jessenia's one-page profile

Jessenia’s one-page profile

Written by Jessenia’s mum 

My eight year old Jessenia attends Oxley Park Academy and is in Year 4.  She was born with a congenital heart defect and has had four major heart operations since her birth, and many minor procedures. The last one was when she was five years old.  Jessenia is a child that likes to please the adults around her. She wants to be recognised for her well-behaved manner and strives for this recognition. She has a maturity about her and relates more to older children and adults.

As Jessenia’s mum I felt that she needed a one-page profile because physically she looks well, so unless you know of her heart condition, it would be difficult for someone who didn’t spend much time with her to recognise that she was having difficulty.  PE is quite demanding for Jessenia and although she wants to join in with her classmates she can’t always keep up and often just needs to sit down and rest.

Also walking long distances is very difficult for her as her heart has to work twice as hard as everyone elses and therefore she tires a lot quicker. She is flat footed too and this causes pains in her legs. We wanted to make sure that adults would recognise when Jessenia needed help as Jessenia herself doesn’t like to make a fuss and tends to suffer in silence because she doesn’t want to disturb the class.

Signs of Jessenia needing help can include constant coughing, sweating and tummy pain.  Jessenia finds it hard to eat, drink and breathe together and therefore eats a lot slower than her peers and subsequently needs more time to finish her meal or drink. This is why we asked that she be allowed to eat some of her lunch at break time and be allowed to drink during class time.

Jessenia’s one-page profile is kept in her classroom and also a copy in a central file. It helps her teacher to recognise when she might need some help and also lets her know what Jessenia’s needs might be when she is in difficulty.  It also means that if her usual teacher or teaching assistants are not around, the crucial information is readily available for whoever is in charge

Jessenia has found her one-page profile particularly helpful because it means that she doesn’t have to explain to adults why she is using the lift and why she needs liquids throughout the day.  She lacks confidence and doesn’t like to be put on the spot. The profile has also helped Jessenia because she knows that all the adult staff are aware of her issues and if she finds something difficult she is more comfortable to say so.  She now appreciates that others want to help her and will keep an eye on her.

As her mum, knowing Jessenia has a one-page profile has given me the confidence that all adult staff taking care of her when I’m not there are aware that she has a heart defect and that she is physically unable to keep up with her classmates sometimes. It also means that when she shows real signs of difficulty and may be in trouble, I am reassured that people know exactly what action to take.

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