The following article was written and published on the StrokeNet Newsletter web site by David Wasielewski.
David is a stroke survivor and member of the StrokeNet staff. I encourage you to visit the StrokeNet web site by clicking on this link: www.strokenetwork.org
Retreat & Refresh Stroke Camp is not affiliated with StrokeNet, but they have many interesting and useful articles that I like to share with our readers, with permission from the StrokeNet staff, of course.
by David Wasielewski
A Resource Guide
As we all know strokes can happen at any age. Young and middle age adults who survive stroke often have families with young children who need to deal with the challenges that a stroke brings to the family life. This begins with the initial trauma and crisis associated with the event and continues with the challenges of changing home life and relationships that become part of the stroke survivor’s life.
Explaining what is happening to a child presents a particular challenge. Sudden changes in routine, trips to the hospital and conversations with strange doctors about illness and strokes are frightening for a child. The child’s sensitivities and ability to understand what has happened and what might happen in the crisis need to be carefully dealt with.
It is probably a time where a skilled professional should be consulted but is also a time when those folks are not usually sought out. The unprepared adults are often left to their own devices to deal with the situation as best as they can. How does an adult family member reframe a stroke in ways that the child might understand? How do we help a child cope with the crisis even when we adults are often unable to hold it together as the situation unfolds?
This is not something we, as parents typically prepare for. The effects of stroke are emotional, social and economic and need to be addressed in terms a child can understand. One paper describes stroke as a family illness as all aspects of family life are affected by the short and long term changes it brings. A much as the family might try to shield a child from the trauma that child will eventually need to deal with the reality that stroke brings to the family routine, both near and long term.
The Lippincott Nursing Center has posted an article that addresses families and stroke:
http://www.nursingcenter.com/lnc/static?pageid=1346847#sthash.4WeqNiIZ.dpuf This article points to some of the many resources available to stroke survivors with young children.
Recognizing this need, the national stroke foundation (NSF) has provided some guidance to families in the midst of this crisis: http://www.strokefoundation.com.au/blog/?p=983 At the NSF social media sites, the StrokeConnect online forum and StrokeLine have all attracted questions about how best to explain stroke, and its aftermath, to children.
Their suggestions include the following:
1. Explain what a stroke is in language that is not misleading but in words that the child can comprehend (eg, a blood vessel taking blood to the brain wasn’t healthy and it bled or burst which meant the brain didn’t get enough blood for a while)
2. Explain the consequences – the brain controls the way we move, think and talk, so after a stroke people often move, think and talk differently
3. Even when the person who has had a stroke comes home from hospital they might have to see the doctor, or other people who can help them, a lot and they may not be able to do the same things they did before the stroke
4. Fatigue post-stroke is a major issue for many stroke survivors – make sure the child knows that the family member might need a lot of rest to get better
5. It can take a long time for someone to get better after a stroke
The UK stroke association provides a Guide for explaining stroke to a 9 year old. It breaks the details into words and concepts the child can understand.
Several children’s books are available that help explain strokes to young family members. Some are immediately available on YouTube or in pdf format for free.
Love after Stroke describes a child’s relationship with a grandparent who had a stroke and how they deal with aphasia and other related impairments. The text is also available on YouTube for quick access. Purchase
My grandpa had a Stroke describes what a stroke looks like from the perspective of a young child after his grandpa returns home after surviving a stroke. It documents grandpa’s recovery process as well as how the child deals with the various emotions involved in their relationship. Link to Amazon
Jack’s story describes Jack and his experience with his grandma’s stroke. The book is immediately available on line in .pdf format
Nana’s stroke is described as a counseling book written especially for children, this storybook helps children understand both the physical and emotional changes experienced when an adult has a stroke. Told through the eyes of a young girl named Libby, the book defines complex medical concepts in words. Link to Amazon
The Aphasia Handbook is not a children’s book but, rather a guide for Aphasia survivors and their families published by the National Aphasia Association. Link to Amazon
Mama Just Shake It is another children’s book on stroke with the text available on YouTube . It explains how a child views issues like hemiplegia and aphasia.
Grandpa’s Crooked Smile is available on line. It illustrates how a child deals with his Grandpa’s stroke and incorporates a number of learning exercises to help a child to recognize stroke symptoms. Link to book.
These books might not cover all aspects of a stroke but provide a context or a starting point for a more meaningful conversation with a child about the various aspects of dealing with changes in stroke survivors. They also illustrate the level of understanding that a child is capable of.
Families with young children might consider speaking with a professional psychologist about the effects a stroke have on children and the family dynamic. Psychologists are often readily available at the hospital, especially in rehab units. It is important to consider the child’s unique situation and needs even as the adults in the family struggle themselves to adjust to the changes that strokes bring to their lives.
Copyright @January 2015
The Stroke Network, Inc.
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