Hi Mel,
Thank you for reaching out on EnableMe and sharing you and your daughter’s journey with us. It is heartbreaking that your daughter has had 2 strokes, and understandable that you are still trying to come to terms with this. She certainly sounds like a true fighter, and it is good to hear that she is improving every day with your support.
As only 300-500 children have a stroke in Australia, it is easy to feel as though you are alone or feel nobody understands your family’s situation. It is also normal to have different feelings about it. You may feel grateful your child has survived. You may feel a sense of shock, grief or loss. Many parents talk about the dreams and aspirations they have for their children and you may feel unsure how the stroke will change these.
It is up to you when and how you tell your circle of family and friends about your child’s stroke. What you tell people is up to you and your family. It may help to talk about your child’s strengths first and their needs second. Talk about what would help you, for example what practical or emotional support they can provide.
You, your family and your child will have tough times. This is completely normal. It’s impossible to be positive all the time.
Everyone’s journey is also very different, and can be a long road with many turns. Practice and repetition of tasks is vital. Every activity is an opportunity for rehabilitation. Playing, brushing teeth, getting dressed, moving from place to place and eating and drinking can all be part of rehabilitation. It may take many repetitions of a movement or task over several days or weeks before you see improvement. Celebrate your child’s achievements along the way. Use a diary, photos or videos to keep track of progress.
Know that plateaus are part of the process. Your child’s recovery may slow down or stop for a time. Treat a plateau as a chance to reassess, not an end to recovery. Remember, recovery is a marathon not a sprint. Talk with your child’s team and make a plan to keep working.
Here are some resources that may be beneficial for her recovery
- Our EnableMe page on Childhood stroke
- As Diana said, Little stroke warriors is a great support.
- We are also in the process of creating our family stroke journey booklet, with lots of valuable information about childhood stroke. Once this is completed, we are happy to send this to you.
- Parents of a child with a disability can get help from carer services. Carer Gateway is an Australian Government service providing information, support and connection to services including counselling. Call 1800 422 737 or visit carergateway.gov.au
If you would like to have a chat to one of our friendly health professionals, please don’t hesitate to call us on StrokeLine on 1800 787 653
Warm regards,
Kath (StrokeLine)
