Receiving a diagnosis that your child has hemiplegia is a critical event, and it can be extremely difficult to process all the information.
People react in different ways to being told that their child has hemiplegia, and that is ok. You may feel anger or dissatisfaction in the way that the news is delivered to you, but this is often due to the shock of receiving the diagnosis.
Many parents report that it is initially like receiving a death sentence before they have time to adjust to the news and its implications.
Most parents of a disabled child will mourn the child they might have had, but at the same time they adjust to living with their ‘different’ child. Having a disabled child does not usually fit in with the view parents may hold of themselves or of the world. It can take time to adjust to new roles and responsibilities.
You may well feel a sense of bereavement, and it is totally normal to go through the following four stages that are associated with a loss, and to slip in and out of these stages at different times:
- Shock – psychological confusion and feelings of grief or numbness.
- Reaction – feelings of anger and denial may alternate with sadness and anxiety.
- Adaptation – this is when you start to seek out ways of helping your child.
- Orientation – the beginning of actively planning ahead.
When a diagnosis isn’t possible
Sometimes a clear diagnosis cannot yet be established and you may be told your child has an ‘evolving motor disorder’.
While this may feel frustrating, placing a child into a diagnostic category does not necessarily help if your child is young and therefore developing. It would be damaging for your child to be wrongly diagnosed as having hemiplegia, and for this to be changed at a later date.
We have information elsewhere on our site about getting support when your child does not have a diagnosis.
Communicating with your child
What you are able to tell your child about their condition will depend on their age, the severity of their disability and their cognitive abilities and emotional status.
It is worth noting that, according to clinical experience and parent reports, children with hemiplegia who are given relatively simple explanations of their condition when they’re young tend to adjust better. Think about straightforward information you can give to your child, for example that their brain works a little bit differently and that messages don’t get through to certain parts of the body.
Most children do not want complex information about the area of the brain affected or what has happened to them in the past. They are more interested in the now and in their future prospects.
As your child gets older you can talk to them more directly about their condition, and do give them the opportunity to ask questions. Many adults with hemiplegia have never had this opportunity and are consequently worried and anxious.
You will almost certainly need to take some time to fully understand and absorb the information you are given at a diagnosis meeting. You should be offered further appointments to discuss the diagnosis and implications for your family. It also helps to request written information about the diagnosis and prognosis that were discussed in the meeting.
It can help to have someone you know with you at any diagnosis or information meetings. They can help you to form the questions that need to be asked and take information on board if you are feeling overwhelmed.
It is important to understand that each child with hemiplegia is a unique individual with their own potential. Although your child’s disabilities need to be addressed, it helps to see your child in terms of his or her abilities too. This, more positive approach, will help you to find ways to help your child fulfil their potential.
Putting parents in touch
One of the most helpful things can be to speak to other families who are in the same situation. Find out more about parent support groups. We run an active Facebook community for parents whose children have hemiplegia, and adults too.