When a child is diagnosed with a special need or a life limiting condition, the diagnosis will have a direct impact on the people responsible for that child. These could be parents, grandparents or paid carers and are known as the ‘primary’ carers.
Such a diagnosis often has a big impact on people’s lives.
It can have an emotional shock to parents
It can mean parents have to spend time in hospital with the child, away from home.
It can mean a change in family finances.
It can mean parents spend more time with the child who has the condition
It can mean that
these could be parents, grandparents or other people and the resources these people will change as a result of this (in fact it might have changed as there may have been events leading up to this) the question to ask (not necessarily to the carers) is how if at all has the relationship changed between the primary carers.
Relationship with their siblings – The next thing to consider is what relationship (if any the sibling might not have been born) did the sibling have with the primary carers and their siblings before the the diagnosed with a special need or a life limiting condition
Family finances – what was the state of the family finances prior to the diagnose and what impact has/will this have on the siblings quality of life (can they still afford to do the activities, purchase food, clothing etc)
Family time – how much and what type of time did the primary carers and wider family (if there is any) spend with the sibling and how if any has this change
Communication with the family – what were the communication channels for the sibling i,e primary carers and has this change to secondary carers .. are the messages getting through…
- When you look at any person however young or old they and you find out they are have siblings it is worth considering if they have or have had a siblings who has or had special needs or disabilities as this may well have shape and impacted their lives. Siblings potentially bring vast experience with them and can be valuable asset to any organisation due to the soft skills they have developed over their time as a siblings but you must treat them and the information they share with you with respect and sensitivity. Also take into consideration they come with their own bias.
- FOR MORE INFORMATION ON THIS DO THE family course
Mapping out the relationships – It well worth mapping these out in order get a fuller picture of the impact of impact of the siblings before you look at the siblings themselves you can do this using a chart (see above, you could get the pupils to colour code it (e.g red back, amber okay and green good)
You can do this by creating a spreadsheet (see table above for example – or create something online … need to think about this
You could get the sibling to do this or if you do not want to embarrass the child you could do this exercise with the whole class at the start of every year and embed with this within lessons such as IT (teaching them Excel, history (their family history), social and emotional development… the choice is your… the key labels are
- Carers (Primary/main and secondary)
- Relationship – they could colour code this (Red, amber, green) according to the strength of the relationship
- Finances – this would be hard to map and we do not suggest you ask the child or family about this but it is worth considering (when this course is written for parents/carers we state it is worth letting the school know about the state of the finances change in a negative way)
- Communication – note how this is done with each person and use a colour code (red, amber, green) to demonstrate how effective each method is
You could also get the primary carers to do this or perhaps you could set this as home work… also this is could be done over years and show how things change over time…. If you work in an organisation this could be kept by the school office and other staff as they would understand the family relationship and this could be kept on the school system.. Be mindful of data protection rules